Public Comment Index for the National Alzheimer's Project Act . 2016 Comments

11/20/2017

2016 Public Comments

 


 

NOVEMBER 2016 COMMENTS

A. Pagano  |  11-01-2016

I'm working on a story about Physician Assisted Suicide in the United States, and though it's currently not legal for patients with ADRD, I'm wondering if you've addressed how it could affect end-of-life planning for these patients if it were legalized in the future.

I'd love to speak to someone working on the National Alzheimer's Project Act about this issue. Is that a possibility?


 

OCTOBER 2016 COMMENTS

I. Kremer  |  10-25-2016

Thank you to the Advisory Council for your deep engagement in, and strong support for, the National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers. Formation of summit advisory committees of people living with dementia and of caregivers, and their inclusion on the summit steering committee itself, reflect your commitment to the centrality of their role in decision-making. Their voices are essential to ensuring that the summit produces findings and recommendations that meaningfully improve their quality of life.

Thanks also to the National Institutes on Aging for its robust commitment to care and quality of life topics (https://www.nia.nih.gov/research/initiatives/concept-proposals-alzheimers-funding-opportunities#care) among 26 new Concept Proposals for Alzheimer's Funding Opportunities, (https://www.nia.nih.gov/research/initiatives/concept-proposals-alzheimers-funding-opportunities) approved at its recent NIA Advisory Council meeting. This reinforces positive steps planned in the FY 2018 professional judgment budget, (https://www.nia.nih.gov/alzheimers/publication/stopping-alzheimers-disease-and-related-dementias/about-fy-2018-bypass-budget) particularly NIH's proposal to nearly triple the amount of new funds dedicated to research on care and caregiver support from $9.8 million in the FY 2017 professional judgment budget to $28 million in the FY 2018 professional judgment budget.

I also offer congratulations to everyone who made possible the recently agreed upon Prescription Drug User Fee Act commitment letter. (http://www.fda.gov/downloads/ForIndustry/UserFees/PrescriptionDrugUserFee/UCM511438.pdf) I hope the NAPA Advisory Council will urge Congress to adopt PDUFA VI reauthorization without delay. For all who look forward to a time when science liberates us all from the shadows of dementia, we know it is imperative that the Food & Drug Administration has all the tools necessary to efficiently review breakthroughs for safety and efficacy.


 

M. Janicki  |  10-25-2016

I and Dr. S. Keller are the co-chairs of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG), a group formed in 2010 with a mission to advocate for people with intellectual disability and their families and other caregivers when an adult with intellectual disability is affected by dementia (http://www.aadmd.org/ntg). The NTG is an affiliate of the American Academy of Developmental Medicine and Dentistry and is associated with the RRTC on Developmental Disabilities and Health at the University of Illinois at Chicago.

The issue we wish to raise today concerns the issue of nomenclature related to dementia as it applies to intellectual disability. Reviews of publications (whether journal articles, book chapters, or reports and plans) involving intellectual disability show mixed uses of terms that generally relate to dementia or the diseases associated with it. Terms in use (including dementia, Alzheimer's, and other similar descriptors) lack precision or consistency when applied inappropriately. Some of this may be attributed to a lack of understanding of the distinction in the terms, the nuances involved with neuropathologies, or inconsistent use of language as well as absence of or inconsistency in an agreed upon core group of methods used in diagnosis. However, in the intellectual disability field this lack of precision in language in and of itself affects the understanding of the condition under discussion and confusion is further increased by a lack of agreement on common terminology in the domain of 'dementia'.

This lack of precision is not solely found in the intellectual disability field, as witnessed by recent efforts in the mainstream Alzheimer's and dementia field to address the same issue and in discussions held by the Council. The concern over coherency and lack of agreement on terminology within the intellectual disability field was recently discussed at the International Summit on Intellectual Disability and Dementia, held at the University of the West of Scotland (nr. Glasgow, Scotland) on October 13-14th -- which was co-sponsored by the NTG. Many of the same issues raised by the Council were echoed at the Summit, with the added concern that much needs to be done to reinforce and emphasize terminological precision and clarity among workers in the field of intellectual disability as the distinctions between the diseases associated with dementia and the expressions of dementia are often confused.

We recognized that the precision in terminology benefits reporting and communicating among researchers and enables the furtherance of scientific goals and findings. With this in mind, the Summit draft report recommended that scientific reports in the field of intellectual disability carry more precision with respect to terms employed and the final Summit report contain a taxonomy of terms typically found in dementia reports and documents, so as to provide guidance and a resource for researchers, administrators, clinicians, paid carers, and others who need to understand and use more precise terminology.

However, with particular acknowledgement of the use of descriptors when employed in general applications, the participants at the Summit noted that it would be beneficial to avoid 'high science language' in documents directed toward general readership audiences so as to facilitate understanding. Yet, we recognized that terms and definitions that are in common usage can help to ensure the communication of messages, but may add to the lack of precision. Further, creating or using definitions that minimize the seriousness, course, and eventuality of brain changes leading to dementia -- which may lead the public to believe that dementia is no more impairing that a minor aging-related discomfort and thus not worthy of concern -- can leave conditions untreated and eventualities devoid of planning. This is a conundrum in the field of intellectual disability, as communicating the definition and process of dementia to people with intellectual disability often creates a challenge. With this in mind, we suggest that to enable understanding, language and phrasing needs to be at a word-level that persons communicating with self-advocates or adults affected by dementia can effectively convey concepts associated with dementia. Further, the concepts need to be communicated in a manner so as to convey the seriousness of the condition, while not creating confusion or undue anxiety.

Given the concerns raised, the NTG supports, with two caveats, recommendation #4 in the 2016 US National Plan Update, which states that "Emphasis should be given to the standardization of terminology in dealing with cognitive and dementing disorders." The Update further recommends that "an integrated conference should be convened to develop consistent language for cognitive disorders among the scientists, care providers and the public... [and there is a need to] engage all of the stakeholders around these issues to reach a consensus for the benefit of persons with dementia, their family members and caregivers, and the scientific and service communities." We support this recommendation with two caveats: First, that the discussions around standardization recognize varied comprehension levels and produce variations in standardized definitions the reflect the varied educational and intellectual levels of the readers. Second, that representatives of the field of intellectual disability be invited to be participants at the 'integrated conference'.


 

M. Sharp  |  10-25-2016

AFTD is committed to helping anyone and everyone living with an FTD disorder find the information, resources and support they need to cope with the challenges they face. As far as we know, outside of the few families carrying an autosomal dominant form of FTD, all people have an equal chance of developing the disease regardless of their racial or ethnic background. However, we also realize that statement reflects how much we still don't know about the biology and natural history of FTD as much as anything else.

As a rare disease advocacy organization AFTD knows how scarce appropriate care and services for FTD are and how hard it is for people to find help and support or even basic information about the disease. We shudder to think how many people the current prevalence estimate of 50-60 thousand people in the US are missed because they cannot find the expertise and resources required to diagnose a disease as unusual as FTD. We also understand that addressing the health disparities discussed today is an important part of addressing that problem and a necessary in order to make a more accurate prevalence estimate for FTD.

In contrast to many rare diseases, our understanding of the basic biology of FTD has made significant advances over the past few decades, which would not have been possible without the support and attention NIH and NINDS has given to FTD research. But there are still many basic questions about FTD that need to be answered before we can begin to understand health disparities in a disease as diverse and complicated as FTD.


 

S. Peschin  |  10-25-2016

I serve as President and CEO of the Alliance for Aging Research. Thank you for the opportunity to provide a public comment.

I have 3 recommendations for today:

  1. Our first request is for HHS to ask Dr. Hodes to include in his federal updates moving forward, data on clinical trial recruitment and participation numbers for each NIH- funded AD trial. These reports should include progress on recruitment of minority populations, as was highlighted today.

    Our collective hope would be for trials to meet recruitment targets. But research shows that this is unfortunately not always the case. The Tufts Center for the Study of Drug Development reported in 2013 that 37% of all clinical trial sites failed to meet their enrollment goals, and 11% never even enrolled a single patient.

    If this is the case with AD trials, in whole or in part, then clinical trial recruitment should play a bigger role in the council moving forward.

  2. Our second request is for the NIH to bridge its Alzheimer's disease research priorities with regulatory gaps identified by the FDA in basic science, biomarkers/surrogate endpoints, and drug development. Since the science is developing rapidly, NIA and FDA would benefit from ongoing conversation and updates on progress toward filling the scientific gaps. The Accelerate Cure and Treatments for Alzheimer's Disease--or ACT-AD--coalition, which the Alliance chairs, will be tackling this topic at our upcoming meeting on Wednesday, November 16.

  3. On a similar note, we will like to see the FDA's Division of Psychiatry Products (DPP) more involved in the council and National Plan recommendation process, particularly as the focus of the council has shifted to care and since there is now increased interest from industry in developing new treatments for behavioral symptoms. If they are not doing so already, DPP could participate in the NIH care summit planning work as well as CMS' National Partnership to Improve Dementia Care to start. Both disease-modifying and symptomatic regulatory approaches and challenges should be mutually regarded in HHS' National Plan to Address Alzheimer's Disease. AD and related dementias are commonly viewed as neurodegenerative diseases only, and we would like to see more focus on the mental health treatment and care issues that encompass these diseases.

Thank you for the opportunity to comment!


 

M. Hogan  |  10-25-2016

Thank you for this opportunity to once again address the Council. As you may know I have a vested interest in people with Down syndrome (DS) who are at an increased risk to develop Alzheimer's disease at a much earlier age.

People with ID are specifically included in Strategy 2 H: Improve care for populations disproportionately affected by Alzheimer's disease and populations facing care challenges. Today we heard about the Gaps and Barriers to reaching and treating racial and ethnic groups referred to in Strategy 2 H. I am hopeful that we can continue to address and discuss the Barriers and Gaps in reaching and treating those with Intellectual Disabilities including DS, as part of Strategy 2 H.

In August 2016 I was at the Advisory Council meeting and heard the presentations from Indiana University and UCLA on their Aging Brain and Dementia care programs. We heard also about Team Integration and Home Based Workforce and lastly about the Value of Palliative Care. Since our public comments in August were limited to what was previously submitted, I would like to briefly to return to two of these topics.

The Aging Brain and Dementia care programs included specific goals that were directed at the general population and caregivers. The UCLA program included a dyad approach, recognition of the ADRD journey, comprehensive community based care with direct services to patients and families and a co-management model of care utilizing the services of a NP Dementia Care Manager. It included workforce development and family training. The outcome reflected patient, caregiver and physician outcomes that were all very favorable.

This type of support system would be most beneficial for individuals with ID, their family members, care partners, along with attending physicians.

  • How can we create opportunities to experiment with this model for those disproportionately affected by AD, including those with ID/DS?
  • How can we better integrate effective models of care to be inclusive of all of our diverse populations affected by ADRD?
  • When we have separate service delivery models, we often do not have equal service delivery. How can we reduce the gaps in reaching and treating all of those referred to in Strategy 2 H?
  • How can we create confidence and foster dialogue and inclusion across providers, i.e. Aging, Dementia, Healthcare?

     

The presentation on Palliative Care resonated strongly for me. Like many individuals with DS and ID, my brother Bill had numerous co-occurring conditions that resulted in pain. With the diagnosis of AD, there was little regard for the impact that these conditions continued to have on him. In the presence of a diagnosis of AD, all was attributed to this disease process. As a result he suffered greatly for the last year and a half of his life, despite our best efforts to advocate for pain management.

Individuals with ID have a history of marginalization in health care. Individuals with AD have experienced this same marginalization in the past, especially in the area of palliative care. It is encouraging to see the increased awareness and availability of palliative care for those in the general population diagnosed with ADRD. It is time to expand palliative care to include those with DS and other forms of ID.

The World Alzheimer's Report 2016 points out the importance of palliative care. In essence it states in part:

  • Every person with a progressive illness has a right to palliative care.
  • That good dementia care implicitly reflects a palliative care approach

     

In small nations like the UK, Scotland and Ireland, there appears to be both a greater discussion of and improved system of delivery of dementia care, including palliative care. We have much to learn from these countries.

In an effort to enhance awareness of issues related to pain for those with ID and dementia, I have attached material from the UK.

  • How can replicate/disseminate this information in the US?
  • How can we raise awareness of behavior as communication of an unmet need even in those with ID and ADRD?
  • Lastly, how do we eliminate the possibility that those with ID and dementia will be left to suffer needlessly?

     

Thank you once again for your willingness to listen, reflect and act on behalf of this underserved population.

ATTACHMENT:

Do You Recognise Pain in Someone with a Learning Difficulty and Dementia? [Available as a separate link: https://aspe.hhs.gov/pdf-report/napa-public-comment-attachment-guide-gps]


 

M. Sterling  |  10-25-2016

I am the co-founder of Connected Health Resources, (http://www.connectedhealthresources.com/) Ambassador for PCORI, (http://www.pcori.org/) Advisory Council member for the Alzheimer's Patient and Caregiver Powered Research Network, (http://www.alzheimerspcprn.org/) and recovering family caregiver for multiple parents with dementia.

Since I last spoke to you, my mom's journey with dementia has come to an end. Her loss leaves a huge hole in the world, but her legacy remains. As a nurse, her focus on person-centered care -- that she delivered for 40 years to each and every patient -- is a model for aspiring nurses everywhere.

As a 42-year breast cancer survivor, her participation in several important breast cancer studies continues thanks to a wonderful research team at Johns Hopkins.

And I am honoring her legacy as a caregiver by working with my friend D. Brown at Caregiving.com to host the first annual National Caregiving Conference, (http://www.caregiving.com/national-caregiving-conference-hub/) December 2nd and 3rd, in Chicago. This is a conference by, about, and for family caregivers -- to include those who care for individuals with dementia. Sorry, but we just couldn't wait for the 2017 Care and Services Summit!

Our conference is part of a movement to ensure that all family caregivers have the help and support they need so they don't have to give up their lives while caregiving, but have the solutions they need to KEEP their lives. We want to spark important conversations about what we need as family caregivers and former family caregivers in our communities, our workplaces and our healthcare system.

We want family caregivers (and professionals who support them) to connect and share, to learn, to be inspired. We have a very special guest joining us to do just that: former caregiver and Grammy-award winner P. Austin (http://pattiaustin.com/) will bring her incredible voice to our conference venue.

True to form, I will be teaching a pre-conference intensive course, (http://www.caregiving.com/national-caregiving-conference-hub/first-annual-national-caregiving-conference-agenda/pre-conference-intensives/) appropriately named "Turning Caregiving into Activism."

Please join us in Chicago for this ground-breaking event, which would not be possible without wonderful sponsors like Eli Lilly! You can find details at Caregiving.com.


 

R. Louie  |  10-24-2016

Reading the meeting summaries from January, April and August this year, I saw very little about promoting therapeutic clinical trials (aside from caregiving), except for mentioning of the AD Clinical Trials Consortium with very few details (I did find the FOA/RFA). I noticed that both NINDS Director Koroshetz and NIA Director Hodes included the NEJM Satizabel /Framingham paper in their research / funding reports. Although this paper shows that AD incidence may be decreasing in the Framingham cohort, US AD mortality is increasing in contrast to heart disease and stroke, according to the CDC (cited in our blog piece below). Our blog piece examines publications as a surrogate for clinical research efforts.

http://www.seattletimes.com/opinion/appoint-an-alzheimers-czar-and-treat-it-like-aids-or-cancer/

http://thehealthcareblog.com/blog/2016/04/20/will-new-funding-improve-alzheimers-dementia-outcomes/


 

W. Mansbach  |  10-22-2016

I am the CEO & Founder of Mansbach Health Tools, LLC and the CEO & President of CounterPoint Health Services. I am honored to sit on the Maryland Governor's Alzheimer's Disease Council.

At our research center, we are currently engaged in two important projects. First, we are working on the development of a construct called cognitive-functional hardship (CFH) which will help identify at-risk adults and older adults in the community. The term "at-risk" refers to people who have challenges performing everyday tasks due to cognitive impairments, especially in the area of judgment. Second, we are developing a new test of practical judgment.

While researchers search for a cure, there is an immediate need to address the challenges of those affected by dementia now. This includes increasing early detection and mitigating safety risks posed by the disease.

First is the challenge of identifying dementia. Everyone on the Council understands the importance of early detection and identification of dementia. We at Mansbach Health Tools, through our Brief Cognitive Assessment Tools (the BCAT), are able to identify people as early as during the Mild Cognitive Impairment (MCI) stage and to differentiate among the different subtypes of MCI. Ideally, people with cognitive impairment would receive an early diagnosis which then would allow them and their families to create realistic plans and expectations for their future care needs. However, obtaining a diagnosis often is difficult. Access to screening can be challenging due to geography, mobility, and socioeconomic status -- creating health disparities. To help mitigate some of those challenges, we are able to provide screening through our Virtual Visits -- telemedicine available to anyone who has access to a telephone, computer, or tablet with a camera and phone service. We strongly recommend that the Council further explore telemedicine opportunities in identifying dementia.

Second is the challenge of addressing the safety risks caused by living with dementia. To best address these challenges, we need to identify the person's level of Cognitive Functional Hardship (CFH). We define cognitive-functional hardship as the difficulty one experiences in independently maintaining one's home environment and performing (without assistance) everyday activities as a result of cognitive decline. Persons with CFH have difficulties performing activities of daily living (ADLs) and / or instrumental activities of daily living (IADL) because of cognitive deficits. Once CFH is identified, a plan can be developed to protect vulnerable individuals at-risk for a myriad of problems, including falls, re-hospitalizations, medication errors, and other injuries.

It is important that all screening tools be sensitive, specific, and appropriate for the target patient. It is also important that the tools provide practical information valuable to the patient and caregivers. For example, someone with CFH might be able to remember THAT they have to take medication but not remember HOW to take the medicine correctly. Armed with relevant and accurate data, people with dementia and their caregivers can identify and mitigate risks to safety through developing accurate care plans, allocating appropriate resources, and implementing monitoring plans to identify when needs change.

Scientifically validated, highly sensitive, and accurate screening tools that can be administered in person or through Virtual Visits are an important means of early identification of dementia and of monitoring changes as the diseases progress. They also are the basis of creating practical care, safety, and financial plans to help those who are living with dementia and their families.

More detailed information is available on my website: http://www.theBCAT.com. I am happy to provide any additional information as needed.


 

J. Lyons  |  10-22-2016

I am an author and care consultant who helps older adults find the care they need throughout the country. Most of the people I serve have some form of dementia. Many have behavioral issues that make it difficult for them to remain safely at home and difficult for them and their families to find an appropriate care setting.

I often refer to my clients (usually the adult children of the person with dementia) as the Club Sandwich generation -- stuffed between parents, children, careers, spouses, financial security, and community expectations. To further the sandwich analogy, a health crisis often acts like a panini press -- squishing everything together, applying heat, gluing all the parts together with cheese, and toasting the edges. One hopes that it doesn't burn the entire thing. It's impossible to undo.

To further complicate things, the practical manifestations of dementia look different in different settings. People living with dementia at home face different challenges than those who are living in an assisted living, memory care, nursing home, etc. Even within the same type of care setting, there are different costs, different services, and different styles. There is no one-size-fits-all solution.

The practical aspects of dealing with dementia require a team approach joining the public and private sectors with people with cognitive issues and their families.

To that end, I urge the Advisory Council to:

  1. Establish additional public/private partnerships that address medical, financial, legal, practical, family, and housing needs.
  2. Create an educated consumer base
  3. Partner with programs to keep caregivers healthy -- including cognitive and emotional health.

     

Thank you for your time. I would be pleased to provide additional information. And, if the Council would find it helpful, I would be pleased to organize a bus tour to show what dementia looks like in various care settings.


 

N. Satyadev  |  10-21-2016

I am submitting this public comment to introduce The Youth Movement Against Alzheimer's (YMAA) /why-ma/. YMAA is the nation's largest youth-led 501(c)3 nonprofit organization that mobilizes high school and college students across the nation to take on the fight against Alzheimer's. The movement is powered by passionate young leaders who wish to age in a world without Alzheimer's. Currently we have about 25 chapters scattered across the nation, including 8 high school chapters. Alzheimer's is not just an old person's disease and young people do care. At the founding UCLA chapter, undergraduate volunteers have provided over 2,000 hour of unpaid respite care for people diagnosed with the disease. Additionally, YMAA has secured $5000 to create an Alzheimer's research scholarship program where selected students would get hands-on research experience for doing Alzheimer's research. In the year to come we are projected to scale to 100+ campuses. We believe the cure will emerge from the power of the youth. Council, thank you all for your amazing work in guiding our nation towards effective care treatments and prioritizing the cure for those affected by this disease. We hope to build relationships with each of you in the future months and years to effectively rally the nation's youth in our common fight.

 

M. Ellenbogen  |  10-06-2016

I am so thankful to be still here. Many of my friends who were living with dementia have died and others are no longer capable of speaking. I am one of the lucky ones. My Alzheimer's is progressing very slowly. While that is good news it is also bad news. I will be forced to endure the worst part of this disease even longer than most. Knowing what I know now that will be like being tortured until I die. While I try to stay positive theses days and live life to the fullest, I am in pain every day from the frustration of not being able to be the person I was once. I continue to decline in to a childlike state.

Dementia, including Alzheimer's, is the most expensive disease we face. It is costing us more than heart disease and cancer. It is the third cause of death in the United States; more than 500,000 people die from Alzheimer's each year! We all get caught up in the big numbers, so I will break them down so they are more relatable.

  • 41,666 is the average monthly death rate
  • 9,615 is the average weekly death rate
  • 1369 is the average daily death rate
  • 57 is the average hourly death rate.

     

This is equivalent to almost three 747s crashing every day. Yet there is much neglect and discrimination regarding funding for Alzheimer's and related dementia research.

Preventative measures for breast cancer, heart disease and HIV have all made tremendous progress since the federal government made significant investments into research. Comparable investments must be made for dementia so we can accomplish the same successes, while saving millions of lives and trillions of dollars.

If we don't act now this disease has the potential to bankrupt this county. This is the most expensive disease in America. In 2016 $236 billion will be spent on Alzheimer's in terms of care and medication, with Medicaid and Medicare spending $160 billion. And unless you take action, the cost to Medicare alone will increase 365 percent to $589 billion by 2050.

Our investment today will lead to huge savings for the government and public, not to mention the lives saved. People with dementia are faced with discrimination at many levels and they lose their civil rights. That must change; we are still people and deserve to be treated as such. A person with cancer would never be treated the way we are. We need you to start making more of an effort to educate the public and restore our rights.

A few years ago I would have said I had no hope, but that has changed to 2.5 percent. I do believe we are closer to a cure today based on what has been learned from all the failures. I am so grateful that the budget has been increased to $991 million, but that is still far short of the two billion dollars that was said was needed years ago.

In my opinion we need a czar for dementia just like Vice President Biden is to cancer and it sure worked for HIV. We are definitely at the tipping point. You have the power to make this happen. Please, I implore the House of Representatives, the Senate and the respective appropriations committees: Make the hard choices; increase funding for Alzheimer's disease by at least one billion dollars. Do everything necessary to ensure that Alzheimer's disease gets the exposure, commitment and funding necessary to change the course of the disease.

If you have not yet been touched by this devastating and debilitating disease it's just a matter of time.


 

SEPTEMBER 2016 COMMENTS

C. Holly  |  09-16-2016

Unfortunately, the U.S. Government is not supporting Alzheimer's Disease research enough when one compares it to the funding received for cancer, stroke and heart disease research. I, as an individual, have made donations to the local Alzheimer's organization. More funding is needed; more marketing for more funding is needed.


 

J. Marshall  |  09-06-2016

I saw a documentary on NOVA that discussed Alzheimer's along with the plethora of ongoing research. In it they stated that the disease is caused by plaques and neuron tangles that form in the brain. But the startling finding was that the plaques begin to form some twenty years prior to the presentation of observable symptoms. Wouldn't it make sense to increase screening for the general population for these brain plaques? Then individuals who had no idea they had the precursors for this disease might be able to enroll in clinical trials and/or get involved in studies to find better data. Perhaps, if caught early enough, the reasons for the formation of these plaques could be more easily determined. It would also provide researchers with a larger number of participants for their studies. Then they might be able to find some previously unrecognized correlations in peoples' lifestyles or perhaps exposures to toxins that might be instrumental in the plaque forming process. The documentary did mention gene mutations but these mutations are not all due to hereditary influences.

I just wanted to share some thoughts and I thank you for listening.


 

AUGUST 2016 COMMENTS

M. Khachatryan  |  08-23-2016

I am with the Youth Movement Against Alzheimer's. I am contacting you about non-federal membership for the Advisory Council on Alzheimer's Research, Care, and Services. I am having some trouble finding information on how an organization representative may become a non-federal member and what the responsibilities are for the member. What does it mean to be a non-federal member? (i.e. Must non-federal members always attend quarterly meetings, how does a member prepare for them, when/how will the next nomination process happen, how much time commitment, etc) & any other information you think will be useful.

Thank you for your time and consideration! Looking forward to hearing back from you.

ANSWER:

Information on how non-federal members are chosen can be found at https://aspe.hhs.gov/advisory-council-alzheimers-research-care-and-services#FAQ.


 

A. Uray  |  08-10-2016

I am doing a project on alzheimers for school. Could you please tell me how much the US will spend on alzheimers research for 2017 ? How much they spent in 2016 and 2015?


 

JULY 2016 COMMENTS

J. Lyons  |  07-29-2016

I am an author and care consultant who helps older adults find the care they need throughout the country. Most of my clients have some form of dementia. Many have behavioral issues that make it difficult for them to remain safely at home and difficult for them and their families to find an appropriate care setting.

I urge the Council to continue to support people with dementia and their caregivers while we search for a cure. I understand the challenges posed by limited resources and the need for increased funding for research in order to find a cure. At the same time, people are suffering now and care is expensive -- both in direct care costs and in the costs of caregivers leaving the workforce or reducing hours in order to be a caregiver.

That economic reality means that the public and private sectors need to work together to create wrap-around solutions for people with cognitive issues and their families. To that end, I propose that the Advisory Council work to:

  1. Establish additional public/private sector partnerships to develop practical, implementable plans and solutions for people with dementia and their caregivers. This includes addressing medical, financial, legal, practical, family/caregiver, and housing needs.
  2. Continue to identify and work with industry experts and thought leaders in care coordination.
  3. Create an educated consumer base through developing and disseminating accurate and culturally sensitive materials.
  4. Identify and partner with programs to keep caregivers healthy -- including cognitive and emotional health.

I would be pleased to provide additional information.


 

A. York  |  07-27-2016

Thank you once again for giving the Eldercare Workforce Alliance, a coalition of 31 national organizations committed to addressing the immediate and future eldercare workforce crisis, the opportunity to offer comments. Because we believe that access to quality health care for older adults with cognitive impairment is vital to healthy aging, we sincerely appreciate the continued inclusion of the eldercare workforce in the National Plan to Address Alzheimer's Disease. We commend the Public Members of the Advisory Council on Alzheimer's Research, Care, and Services for your work.

EWA is especially grateful that you are taking time today to focus on training of the direct care workforce. To meet the demand for services and address high rates of turnover, direct care worker jobs should offer comprehensive training, certification, and career advancement opportunities. Dementia care training is essential to this. EWA also specifically applauds the Advisory Council's 2015 recommendation to prepare a workforce that is competent to deliver care to persons with advanced dementia and their families under 7b. In addition, EWA supports recommendation 9b to research the impact of caregiving and quality of life of caregivers.

EWA would like to stress the importance of the Advisory Council's support of geriatrics and gerontology education and training programs responsible for preparing the health care workforce that will be charged with implementing the National Plan. This responsibility falls primarily to the Health Resources and Services Administration (HRSA), which administers the programs within Title VII of the Public Health Service Act. In recent years, funding for most of these programs has remained level. As noted in previous recommendations from the Council, additional funding is essential if we are to expand the activities of these programs to address the needs of the growing number of older adults with Alzheimer's disease, related dementia, and other chronic conditions.

July 2015, HRSA awarded 44 grants in 29 states for the Geriatrics Workforce Enhancement Program (GWEP). The GWEP is the only federal program that increases the number of faculty with geriatrics expertise in a variety of disciplines who provide training in clinical geriatrics, including the training of interdisciplinary teams of health professionals, students, faculty, practitioners, direct care workers, and family caregivers. The new GWEP program is designed for greater flexibility for grantees to meet the needs of their community.

Some GWEP programs were awarded additional funding for Alzheimer's Disease Prevention, Education and Outreach program, which supports interprofessional continuing education to health professionals, including direct care workers, and family caregivers on Alzheimer's disease and related dementias. Regardless of whether the GWEP applied for this additional funding, all GWEP programs have a component of dementia care training.

In 2018, the new grant cycle for the GWEP grant will begin. Congress is also looking at the authorizing language Title VII and VIII to update the language to the current program. This is an opportunity for us to expand the program to additional communities where gaps exist.

Thank you again for the opportunity to be with you today and to share EWA's thoughts on strategies for ensuring that individuals with Alzheimer's and related dementias, and their families, can get the care and support they need. We greatly appreciate your work and your continued emphasis on preparing a well-trained workforce, including family caregivers, to meet the needs of all older adults.


 

M. Ellenbogen  |  07-27-2016

Unfortunately I have struggled to write something because I have had a number of bad days. This is the exact reason why I have been asking for approval to speak at the meeting rather then submit it in writing. It not only allows me more time but I am able to focus on issues being addressed that would allow me to think better. Help joggle my mind on the issues at hand. I do wish you folks would start to treat me like I have a disability and allow me to do what should be done for people with disabilities. Would you take away the ramps for people in wheel chairs? It's about the same for me. I need to speak rather then write. It will only get worse for me unfortunately. Your actions are shutting me out of society.


 

M. Janicki  |  01-19-2016

I and Dr. S. Keller are the co-chairs of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG), a group formed in 2010 with a mission to advocate for people with intellectual disability and their family and other caregivers when an adult with intellectual disability is affected by dementia (http://www.aadmd.org/ntg). The NTG is an affiliate of the American Academy of Developmental Medicine and Dentistry and is associated with the RRTC on Developmental Disabilities and Health at the University of Illinois at Chicago.

The issue we wish to raise today concerns the education of caregivers. It is estimated that some 95% of adults with intellectual disability reside in the community on their own, with friends, or with family. When beginning to show signs of cognitive decline, the onus of helping them cope with daily activities most often falls on their friends, housemates, or family -- directly or indirectly. We also recognize that Down syndrome, a condition affecting over 10% of adults with intellectual disability, presents with a high risk for Alzheimer's disease and typically the functional changes associated with dementia manifest when adults with Down syndrome are in their early fifties (a form of early-onset dementia). We also know that many housemates or caregivers are often unaware of the symptoms of dementia and are unaware of the best means of helping someone with whom they live with or who is in their care when dementia is present.

A similar challenge vexes provider agency personnel and administrators. We have found that many staff and other workers at intellectual disability provider agencies find themselves in the same situation -- often unaware of early symptoms and untrained in how to use best-practice care models. Further, with increasing life expectancy among adults with intellectual disability, including adults with Down and other at-risk conditions, many more adults are experiencing -- and will continue to experience -- aging-related challenges, including functional and cognitive decline and potentially various dementias. The progressive loss of daily personal care skills, and the accompanying increase in "challenging behaviors" associated with dementia can lead to tremendous frustration, angst, and dysfunction amongst staff involved in the care and support of individuals with dementia.

To address these challenges, the NTG developed a national multi-module education curriculum on intellectual disability and dementia that was first field-tested and rolled out in 2014. Since then, the NTG has made available a model two-day workshop, making use of the curriculum, designed for staff of aging, health, and disability agencies, as well as family caregivers, across the US. In the past two years, our NTG colleagues have conducted some 20 workshops exposing over 800 workers, administrators, and caregivers to the information covered in the workshops. The NTG is also working closely with the Health Resources Services Administration (HRSA) and its effort to create a national unified dementia training curriculum usable for enhancing the skills of the community workforce. This effort is designed to provide quality and experienced care and supports to persons affected by dementia and enhance the capabilities of their family caregivers to continue to provide home-based care. We have also liaised closely with the Administration on Community Living (ACL) with respect to this issue.

However, over the past couple of years, although expanding our capacity to provide training and education, we have found that the number of workers and home-based caregivers needing training continues to exceed our capacity -- as we are an unfunded and volunteer-based organization. Given the great need for expanded outreach and training, we were very pleased to see the introduction of HR.3090 and S.3113 which are the House and Senate versions of the 'Alzheimer's Caregiver Support Act' (and which would amend the Public Health Act). We are in support of this legislation; however, in reading over the language of the bills we find that both are remiss in any specific mention of the needs of caregivers of people with intellectual disability, including Down syndrome. This omission of a segment of the population recognized within the National Plan to Address Alzheimer's Disease as a 'special population' means that it may not receive due consideration if and when the legislation may be implemented.

Thus, we are asking the sponsors to consider amending their bills to include specific mention, so as to ensure that due consideration also will be given to and resources allocated for -- under the Act -- to intellectual disability. Specifically, we are recommending amending the language as follows: (1) Recognizing the needs of caregivers of persons with dementia who also have an intellectual disability; (2) Inclusion of 'intellectual disability' consistent with the definition in the Developmental Disabilities Assistance and Bill of Rights Act (PL 106-402); (3) Inclusion of 'disability organizations' under Section 330M, subsection (c) RECIPIENTS OF GRANTS; and (4) Inclusion of language under Section 330M, Subsection (e) COORDINATION, to include the fact that persons with intellectual disability are also a 'medically underserved' population.

We would hope that the Advisory Council, consistent with provisions in the National Plan to Address Alzheimer's Disease, will offer its support to this legislation -- and also support our 'ask' that consideration of the needs of caregivers of people with Down syndrome and other intellectual disability be added to the bill language.

The NTG's mission and goals -- that of enhancing the lives of adults with intellectual disability affected by dementia and integrating this segment of the US population into both the generic and specialized services and supports available to other adults affected by the dementia -- are in sync with the purpose of this legislation. Our focus has always been on advocating for greater supports for caregivers, including providing information that will enable them to cope, adapt, and continue to provide home-based care for as long as they are capable -- as well as advocating for their interests within the greater Alzheimer's community and among various national non-governmental organizations and state and federal agencies. We see this legislation as a vehicle to enhance the knowledge and capabilities of caregivers, as well as contributing significantly to their -- and their relatives or friends with intellectual disability -- quality of life when affected by dementia.


 

M. Hogan  |  07-27-2016

Thank you for the opportunity to address the Council today. Some of you may remember me as a regular attendee from the past, most especially during the period leading up to the release of the first National Plan. I return today as a Family Advocate for individuals with intellectual disabilities (ID) and their families and as a member of the NTG, a grass roots organization designed to increase the awareness of and services for those with ID who face the challenges of aging and dementia related decline.

Last July I had the privilege of addressing the Advisory Council as several of the Non-governmental members were ending their NAPA Advisory Council Terms. Many of those original members became champions of the cause of Down syndrome (DS) and Alzheimer's disease (AD). To them I am eternally grateful. It is a privilege to be back again today and to meet those of you who have more recently joined the Advisory Council.

In the past I came before this body to advocate for the inclusion of individuals with ID, most specifically those with DS as a special population to be specifically noted in the National Plan. I also frequently addressed the need for added research dollars dedicated to DS and AD. My passion for this issue is driven by the fact that my brother Bill, a.k.a. Harrison Ford, had DS and died in 2010 of complications of AD. He was 49 years old. Bill touched many lives and his early departure left a significant void. He was a compassionate man with a huge heart. He helped give meaning to life and continues to be sorely missed.

At the time of Bill's death we donated his brain to a research institution in hopes of making a contribution to the cure. It felt important to do so.

I am here today to express my gratitude to the NIH/NIA/NICHD for funding a $35 million dollar grant to address AD biomarkers in individuals with DS. This research will commence in the next month or so at several institutions across the US. Hopefully the outcome will result in improved early intervention and treatment for those with DS and for the general population as well. It is also my hope that this research will bring us closer to the goal of one day ending this devastating disease. I am most grateful to the NIH/NIA/NICHD for funding this initiative with this very special, often underserved, population.

I also wish to acknowledge the progress that has been made at the Administration for Community Living. They have awarded a limited numbers of grants that have promoted training and education in targeted sectors of the ID community. However, the need for information, training and support far exceeds what has been done to date.

Following the release of the First National Plan, during subsequent Advisory Council meetings, I spoke often of the desperate need of aging lifetime caregivers, often in their 80's, who were now supporting a family member with a dual diagnosis of ID/DS and AD. In some cases I noted to you that there have been diagnoses across two generations, a parent and their adult offspring with an ID/DS, an overwhelming burden of care for any family to maintain.

I am here today because:

  • There are still families who are unaware of the relationship between DS and AD.
  • There are individuals with ID and families who have limited options as AD progresses. They often ask:
    • How will they support their family member?
    • Will they be able to remain at home, often with aging parents, sometimes with a similar diagnosis?
    • Will they be able to "Age in Place" in their Group Home?
    • How will they move to be near family when funding is not always available with a change of locations?
    • How will they access a trained cohort of compassionate service providers who value them as people with a life story and a place in their community, providers who view them as more than just "a job"?
    • How do we give individuals with ID/DS a voice when they are often unable to self-report?
    • How do we make sure that they are not overmedicated or undertreated, that their physical, mental, social, emotional and spiritual needs are met?
    • How do make sure that their behavior is viewed as communication and an expression of an unmet need just like the general population.
    • Who will support these aging caregivers?
  • I am here for all of those individuals I have met since 2010 to make sure that they are not forgotten

Today I am joined in spirit by the NTG and many families as I appeal to you to further include this special population in all aspects of expanded outreach, care planning, training and supports. I am here to ask that people with ID and DS be noted in the pending legislation, the "Alzheimer's Caregiver Support Act" and subsequent amendment of the "Public Health Act". The plight of individuals with ID/DS and families is real...the need continues to be great. Families who have been lifetime caregivers often feel abandoned. They have worked hard to independently provide care in the past. They now need extensive support that they struggle to or are unable to access.

I urge you to leave here today, more than 5 years after NAPA was signed and implemented, with a renewed awareness of and commitment to the critical needs that remain in existence today for this underserved group of people and their families. Thank you for your willingness to listen, to reflect and act on their behalf.


 

T. Buckley  |  07-27-2016

Mr. Mueller, at 90 years of age donated this home to Lucanus to open a 4 bed advanced dementia home. Mr. Mueller died of Alzheimer's and pleaded with Lucanus to enable his son with Down syndrome an d Alzheimer's disease to remain in the home and 3 other families.

Family centered is the process of empowering the family and person served to make an informed choice for their future and have the confidence and unwavering support from Lucanus and Erin to make their dream a reality.

It is interesting to note due to age of caregivers:

1) Gary was not walking when he came to Lucanus because Mr. Mueller at 90 never exercised and it was easier if David was in a wheelchair. The support coordinator stated he was in a wheelchair and could not walk.

The Lucanus founder T. Buckley sr. founded Lucanus over 42 years ago, He asked Mr. Mueller who replied he will walk he just can't risk trying to support Gary when he can barely support himself

This is Gary in only 12 days he went from the wheelchair and walker to walking independently. His mood and self-worth changed immediately and from helplessness he walked all day every day because he was so happy to walk again.

This is David and Stephanie with my Sister Judy. They have both been at Lucanus for 35 years. We presented to the Florida Memory Disorder Center's at the Mayo Clinic. Thanks to your tremendous support all these incredible Hospitals have changed the lives for those we serve.

Stephanie just competed in the Florida Cheerleading competition and showed the second place. Ribbon.

At Lucanus, we did not get up to live everyday only to hope to die a good death. We focus on great ties together ad new memories to cherish.

Just two weeks ago Stephanie threw her diary away because she forgot to write in for three days. My sister found her diary in the trash and now they sit together every day and write her memories.

Some may say persons with down syndrome are not worth prolonging the life for the individual but if you're with Stephanie or her Mom, she not only adores her Mom and vice versa, but she writes the memories from her wonderful life.

These are our dementia care coordinators and David never leaves their side.

This is our new Health Home. The Tringo Family own this home and with Mr. Tringo's incredible IT background we have 16 cameras to prevent wandering, monitor 90% with seizures, and falls. We also have a dementia puppy chocolate lab. The Lucanus Center own our other 5 homes but the family are so worried about what will happen to their adult children that are taking the lead and fully partnering.

I have personally created 31 homes all specialized over my career. This is the first time the families felt incredibly empowered from Erin Long and so much so they went and told all the neighbors about their Son needing this home as a group home and living in the neighborhood 35 years.

The neighbor has a Son with Down syndrome but the Tringo were unaware. What an incredible difference it makes when the family speak the community and neighbors for their child rather than an organization.

My Son Andrew as Dementia Care Coordinator showing 89-year-old Mom how to use life. Mom fell 6 times lifting daughter.

David told his parents and all of us in the caregiver group he is not getting in the Hoyer lift the "Boys" will pick him up. David laughed for 30 minutes and said he is so glad to have brothers.

The Dementia journey is a reflection of your commitment, attitude and expression to your loved one. We serve 80 persons every day and have the greatest time because we all refuse to focus on a good death and we enjoy the days we are together and alive.

I attached a training curriculum we use for the Lucanus health Home to teach the Nova doctors, our Health Care guidelines for ID, and several forms in case your asked by a member of your community.

Thank you very much for appointing Erin and providing travel for her to Chicago--she was exceptional.

Take care, Tom

ATTACHMENT #1:

What is a health home?

A state Medicaid program defined in an SPA that is responsible for comprehensive care management; care coordination and health promotion; comprehensive transitional care/follow-up; patient and family support; referral to community and social support services; and use of health information technology (HIT) to link services. A Health Home program may be made up of several Health Home providers.

Health Home Provider: An individual provider, team of health care professionals, or health team that provides the Health Home services and meets established standards. States can adopt a mix of these three types of providers identified in the legislation:

  • Designated provider: May be physician, clinical/group practice, rural health clinic, community health center, community mental health center, home health agency, pediatrician, OB/GYN, other.
  • Team of health professionals: May include physician, nurse care coordinator, nutritionist, social worker, behavioral health professional, and can be free standing, virtual, hospital- based, community mental health centers, or other.
  • Health team: Must include medical specialists, nurses, pharmacists, nutritionists, dieticians, social workers, behavioral healthcare providers, chiropractors, licensed complementary and alternative medical practitioners, and physician assistants. Health Home Enrollee. Medicaid beneficiary (adult or child) enrolled in a state Health Home program. Medicaid beneficiaries eligible for Health Home services:
    • Have two or more chronic conditions, or
    • Have one chronic condition and are at risk for a second, or
    • Have a serious and persistent mental health condition.?Health Home enrollees may include beneficiaries dually eligible for both Medicare and Medicaid.

Primary Care Provider. Physician or nonphysician (e.g., nurse practitioner, physician assistant) who offers primary care medical services. Licensed practical nurses and registered nurses (RN) are not considered primary care providers.

Mental Health Practitioner. A practitioner who provides mental health services and meets any of the following criteria:

  • An MD or doctor of osteopathy (DO) who is certified as a psychiatrist or child psychiatrist by the American Medical Specialties Board of Psychiatry and Neurology or by the American Osteopathic Board of Neurology and Psychiatry; or, if not certified, who successfully completed an accredited program of graduate medical or osteopathic education in psychiatry or child psychiatry and is licensed to practice patient care psychiatry or child psychiatry, if required by the state of practice.
  • An individual who is licensed as a psychologist in his/her state of practice.
  • An individual who is certified in clinical social work by the American Board of Examiners; who is listed on the National Association of Social Worker's Clinical Register; or who has a master's degree in social work and is licensed or certified to practice as a social worker, if required by the state of practice.
  • An RN who is certified by the American Nurses Credentialing Center (a subsidiary of the American Nurses Association) as a psychiatric nurse or mental health clinical nurse specialist, or who has a master's degree in nursing with a specialization in psychiatric/mental health and two years of supervised clinical experience and is licensed to practice as a psychiatric or mental health nurse, if required by the state of practice.
  • An individual (normally with a master's or a doctoral degree in marital and family therapy and at least two years of supervised clinical experience) who is practicing as a marital and family therapist and is a licensed or certified counselor by the state of practice, or if licensure or certification is not required by the state of practice, who is eligible for clinical membership in the American Association for Marriage and Family Therapy.
  • An individual (normally with a master's or doctoral degree in counseling and at least two years of supervised clinical experience) who is practicing as a professional counselor and who is licensed or certified to do so by the state of practice, or if licensure or certification is not required by the state of practice, is a National Certified Counselor with a Specialty Certification in Clinical Mental Health Counseling from the National Board for Certified Counselors (NBCC).
Lucanus Health home measures
Measure Description Result Signature from staff
BMI Nurse practitioners will monitor and maintain a healthy BMI    
Controlling behaviors/dementia symptoms Engaging clients in meaningful activities & modifying the home    
Fall prevention screening Video cameras displayed all throughout the home will monitor & record up to 30 days    
Palliative care Nurses & in-home staff will provide palliative care    
Telemedicine Doctors from the university from Nova will administer all medications    

ATTACHMENT #2:

DRAFT of Chapter on Intellectual and Developmental Disability [Available as a separate link: https://aspe.hhs.gov/pdf-report/napa-public-comment-attachment-draft-chapter-intellectual-and-developmental-disability]

ATTACHMENT #3:

Primary Care of Adults with Developmental Disabilities, Canadian Family Physician (2011, 57:541-53) article [Available as a separate link: https://aspe.hhs.gov/pdf-report/napa-public-comment-attachment-primary-care-adults-developmental-disabilities]

ATTACHMENT #4:

Family Medicine Curriculum Resource: Adults with Developmental Disabilities [Available as a separate link: https://aspe.hhs.gov/pdf-report/napa-public-comment-attachment-family-medicine-curriculum-resource]


 

G. Bayless  |  07-13-2016

We've organized a clinical study to see if our composition might be the much sought after solution to this devastating condition. How might we qualify for funding for this project? I have references that would convince you of our qualifications.


 

V. Rinker  |  07-07-2016

Where is the July 2015 HHS document titled: Alzheimer's and Related Dementias: HIPAA Resource List? I'd like a copy and to know where it accessible on an HHS website.


 

MAY 2016 COMMENTS

M. Ellenbogen  |  05-24-2016

Maybe the NAPA committee can learn from this. Our Canadians friends who just started to focus on dementia seem to learn very quickly on how to accommodate those with dementia. Just maybe you can learn from it.

http://mindsetmemory.com/the-canadian-senate/


 

APRIL 2016 COMMENTS

M. Sharp  |  04-20-2016

Hello. I am Program Manager for The Association for Frontotemporal Degeneration (AFTD). Thank you once again for the opportunity to comment on behalf of our 'related dementia" FTD. I was lucky to be at the 2016 Alzheimer's Disease-Related Dementia Summit in Bethesda last month and haven't stopped thinking about everything that happened during the two-day event.

AFTD Director S. Dickinson was honored to co-chair a new session on Non-Governmental Organizations and we are grateful for the opportunity to help develop recommendations on how NGO's can facilitate and promote bio-medical research and build stronger partnerships between the academic researchers working on the "related-dementias", the federal institutes providing the funding.

One of the more surprising things I heard at the summit was that most people who are diagnosed will have a mix of different pathological changes in their brain and it is usually possible to find signs of multiple diseases when looked for by autopsy. So even though people are diagnosed as having a single disease, dementia is actually much more complicated and messy and until biomarkers are found for all the pathologies associated with dementia researchers need to acknowledge that the names we currently use for diagnoses don't accurately reflect the complex biology of these diseases.

Along those same lines, we are very much looking forward to the work of dementia nomenclature working group as recommended at the 2016 summit. The task of developing a coherent and consistent nomenclature and clarifying the language used by all stakeholders involved with dementia in all its medical, social and cultural complexity is daunting to say the least but AFTD is eager to help however we can.

The progress being made in research on the related dementias, and especially FTD, is truly exciting. The 2016 ADRD summit made it clear that this research is necessary to treat, cure and ultimately prevent not only the related dementias, but Alzheimer's disease as well.


 

E. Sokol  |  04-20-2016

  • Later this afternoon the NAPA Advisory Board will be hearing about a proposal to hold a research summit on care and services.

  • AFA supports the idea of a caregiver summit and, to be truly successful, the Department of Health and Human Services needs to fully participate and engage in the planning and execution of such an event.

  • Innovative caregiver models that incorporate specialized dementia training and supports have the potential to save resources by lower hospital admissions, re-hospitalizations and emergency room visits as well as delaying placement in more costly institutional settings.

  • For example, empowering caregivers to conduct environmental assessments will lower incidences of falls. Prescription adherence techniques will ensure better management of comorbidities; caregiver training can also help diffuse confusion or agitation in a person with dementia.

  • In addition to better outcomes, there are opportunities for cost savings. An independent study of a Minnesota dementia caregiver program that provided training and support found that, if fully implemented, the program would save the state nearly $1 billion over 15 years.

  • As demonstrated in Minnesota, small investments in supports that provide caregiver tools and strategies yields major savings and better outcomes.

  • In addition, the Senate Finance Committee has convened a Bipartisan Chronic Care Working Group which is looking at proposals that seek to increase care efficiencies, provide better health outcomes and lower overall care costs for Medicare beneficiaries with chronic conditions including people living with dementia.

  • Given this uptick in interest, now is the time to hold a caregiver summit that can examine such person-centered models to see what works, how innovative models can be scalable and identify where there are policy gaps.

  • Such a caregiver summit can provide valuable information to jumpstart a legislative effort to adopt such caregiving models that promote efficiencies, saves resources and keeps persons receiving care in the home longer.

  • Thank you for your time and the opportunity to offer comments.


 

M. Janicki  |  04-20-2016

Along with my colleague, we are the co-chairs of the National Task Group. Our Group's goal is to work with the Advisory Council and the National Plan to Address Alzheimer's Disease to promote the inclusion of the concerns and needs of adults with intellectual disabilities affected by dementia, as well as their families and caregivers. We have been in place since the passage of the National Alzheimer's Project Act and the inception of the Council. Today, on behalf of our Group, I would like to inform the Council of what our Group has been doing to aid in carrying out aspects of the National Plan on behalf of people with intellectual disability.

  1. The 2014 HCBS Rule

    Some of you may be familiar with the January 2014 issuance of the Centers for Medicare and Medicaid Services (CMS) new Home and Community-based Services (HCBS) rules which established guidelines for services and supports that may be financed through several Medicaid long-term supports and services programs (Final Regulation CMS-2249-C/CMS-2296-F) -- sometimes referred to as the "HCBS Settings Rule".i According to the rule, federal financial participation is enabled if home and community based services are provided in settings that focus on the needs of persons with intellectual disability as noted in their person-centered support plan. There are a number of requirements on services to ensure that they comply with community inclusion (including being integrated and providing support for full access to the greater community; being selected by the individual from among options including non-disability specific settings; ensuring the individual's rights to privacy, dignity, and respect; optimizing individual initiative, autonomy, and independence in making life choices, and facilitating individual choice regarding who provides the service). There are also some conditions related to settings when owned or controlled by a provider. According to the rule, the onus is on each state plan authority to show that it is in compliance and to submit a transition plan demonstrating how compliance will be brought about.

    The NTG lauds the efforts of CMS to create a vehicle for system change and provide protections for individuals with disabilities so as to maximize personal choice, decision-making and community inclusion. However, with respect to older persons with intellectual disability affected by dementia, we find that the rules are silent with respect to optimizing community supports. In the developmental disabilities system in the US, much is being made of trying to preclude (re)institutionalization of adults with intellectual disability when affected by dementia. We have been informed by many providers that as the CMS rules are silent on the application to persons with dementia, they are worried that states may not make reasoned judgements that maximize community living among adults with dementia in fear of not being compliant with the rules. We have been informed that informal counsel from CMS is that the main vehicle for compliance with respect to dementia is through the artful application of each individual's person-centered support plan.ii While we support this approach, there is a need to ensure relative uniformity and offer relief from having each provider individually engage their state plan entity in negotiating this process.

    We would like to propose that the NTG and other interested parties sit with CMS and collectively develop an interpretive letter or fact sheet for state plan entities for the application of the rules to situations of community housing for people with intellectual disability affected by dementia and would ask the Council to join us in supporting this resolution.

  2. Workforce Enhancement Efforts

    The NTG has used its specially developed educational curriculum on dementia and intellectual disability (specifics available at http://aadmd.org/ntg/education-and-training)--consistent with the National Plan's Strategy 2.A: Build a Workforce with the Skills to Provide High-Quality Care.iii Since 2014, we have run a series of two-day workshops across the United States ("Dementia Capable Care of Adults with Intellectual Disabilities and Dementia"), including in most cases a third day 'train-the-trainer' component.iv To date approximately 570 workers at various levels have attended the intensive two-day trainings, along with another approximate 800 who have attended our one-day NTG capacity building workshops on dementia and intellectual disabilities. Our 18 module NTG Education and Training Curriculum on Dementia and Intellectual and Developmental Disabilities is available for use by trainers who have completed the train-the-trainer program as well as those who are part of HRSA's Geriatric Workforce Enhancement Programs. At this point we are scheduling one to two two-day workshops per month. In addition, drawing upon the curriculum and other materials produced by the NTG, we are collaborating with the National Down Syndrome Society and the Alzheimer's Association to produce an informational and educational booklet on dementia and Down syndrome usable by family and other non-paid caregivers. We expect this booklet to be available in early 2017.

  3. Collaboration with ACL's Alzheimer Disease Initiative Grantees

    The NTG has had contact with a number of the Administration on Community Living's ADI grantees that have included efforts to aid adults with intellectual disabilities affected by dementia and their caregivers. We have organized or are organizing targeted workshops and other trainings for a number of the 41 grantees, for example, projects in Rhode Island, California, Hawaii, and Florida. We are also working with grantees to aid them in using the NTG-EDSD--the NTG's early detection and screening instrument specifically developed for use with persons with intellectual disability. The instrument is being (or will be) used to help with screening referrals for the grantee's services, to record demographic and clinical information to help with channeling supports and services, and to help with tracking changes in function and health. The NTG-EDSD has been adopted for nationwide use in Scotland and has been translated into a number of languages for use in the US and overseas. We commend the ACL for incorporating the needs of persons with intellectual disability within the Alzheimer Disease Initiative grant program and look forward to being of assistance to these and other grantees over the course of the National Plan.

  4. Research Summit on Care and Services

    The NTG would like to have the Council know that it fully supports the holding on the Research Summit on Care and Services. We recognized that national statistics document that a significant number of adults with intellectual and developmental disabilities (I/DD) continue to remain at home residing with family, whether parents, siblings or other kin.v Others live in family situations with non-relatives who are surrogate caregivers.vi As there is a body of research on the nature of extended, often life-long caregiving among these caregivers, as well as the different challenges and adaptations experienced by lifelong caregivers when contrasted to late-life caregivers, the nature of adaptations to caregiving when adults with I/DD begin to experience dementia, and the progression through the course of Alzheimer's disease or related dementias, it is our position that the inclusion of issues related to intellectual disability should be included within the Research Summit.vii

    We envision that contributing to this area of inquiry and the resultant recommendations relative to the institution of federal and state-based policies and funding schemes to aid this category of caregivers, contributing to practice guidelines for agencies responsible for supporting aging caregivers and caregivers of older adults with I/DD affected by dementia, and translating viable practices from caregivers of adults with I/DD to general caregivers and vice versa--would be of assistance to the Council as it formulates is successive iterations of the National Plan.

  5. Summit on Dementia and Intellectual Disability

    We would like the Council to know that there are still a number of outstanding and unresolved issues related to dementia and people with intellectual disability that warrant an international dialogue to correspond with the 'Glasgow Declaration' which addresses 'dignity and autonomy in dementia".viii Thus, the NTG, along with the Rehabilitation Research and Training Center on Developmental Disabilities and Health at the University of Illinois at Chicago, has been in consultation with colleagues at the University of the West of Scotland (UWS) and Alzheimer Scotland to organize an 'international summit' on intellectual disability and dementia to be held October 13-14, 2016 in Glasgow, Scotland. The summit will be geared to developing a major international policy statement on a number of areas related to dementia and adults with intellectual disability, including (a) human rights and the Convention on the Rights of Persons with Disabilities (CRPD), (b) nomenclature, (c) advanced dementia and end-of-life care practices, (d) family caregiver supports, (e) community dementia capable care practices, and (f) advocacy for inclusion of persons with intellectual disability in national Alzheimer's disease plans.ix We anticipate a number of international delegates attending from Europe and North America and expect that the summative document produced will be of help to the World Health Organization, Alzheimer Disease International, Alzheimer Europe, national Alzheimer societies and related entities, as well as developmental disability providers, in Europe and North America, various governmental entities, and national advocacy and plan bodies such as the Advisory Council.

    As this 'summit' will have many applications, we cordially extend an invitation to any Council member who would wish to attend.

NOTES:

i. Larson, S.A., Hallas-Muchow, L., Aiken, F., Taylor, B., Pettingell, S., Hewitt, A., Sowers, M., & Fay, M.L. (2016). In-Home and Residential Long-Term Supports and Services for Persons with Intellectual or Developmental Disabilities: Status and Trends through 2013. Minneapolis, MN: University of Minnesota, Research and Training Center on Community Living.

ii. Nocon, M. (2016). Addressing the need to accommodate delayed egress via IPPs. Spring Valley, CA: Noah Homes.

iii. US DHHS. (2014). National Plan to Address Alzheimer's Disease: 2014 Update. Washington, DC: Author

iv. http://aadmd.org/ntg/education-and-training

v. Larson et al. Ibid.

vi. Jokinen, J. Janicki, M.P., Keller, S.M., McCallion, P., Force, L.T. and the National Task Group on Intellectual Disabilities and Dementia Practices. (2013). Guidelines for structuring community care and supports for people with intellectual disabilities affected by dementia. Journal of Policy and Practice in Intellectual Disabilities, 10(1), 1-28.

vii. National Task Group on Intellectual Disabilities and Dementia Practice. (2012). 'My Thinker's Not Working': A National Strategy for Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports. http://www.aadmd.org/ntg/thinker

viii. http://www.alzscot.org/campaigning/international_activity (Glasgow Declaration)

ix. National Task Group on Intellectual Disabilities and Dementia Practices. Ibid.


 

M. Ellenbogen  |  04-15-2016

I serve on many boards. Unfortunately, though, I miss a lot of what is being said when people are speaking. It's hard to admit, but that is the truth. I have spoken to others who have dementia and they tell me the same story. Because of that reason alone, I believe it is unjust to have only one person living with the disease on any board. It not only puts them in an unfair position but it will surely contribute to not getting the proper feedback, which, I assume, is why you ask us to serve on the committee in the first place. While I have recommended this before, I strongly recommend you add at least another person living with dementia to the council. After all, you have two representatives for caregivers, although I am not sure why you would think they need a larger presence than those you are trying to help. They did hear my request at the World Dementia Council. And if you are looking to follow the best model, just look at Dementia Action Alliance, they have 9 diverse individuals living with dementia. Since I believe you are supposed to be the leader in this mission shouldn't you start by setting the right example for others to follow.

On another note, and sounding like a broken record, it would sure be great if I could speak on the phone or internet. Instead, I need to work countless hours with the help of others, to create my comments as my spelling is no longer readable. So you can fix the track before the next meeting.


 

P. Shenian  |  04-13-2016

I am a Board member of The Association of Frontotemporal Degeneration (AFTD), based in Radnor, Pennsylvania.

FTD is early form dementia affecting language behavior and speech

I am proud to announce annual caregiver conference and board meeting will be held in Minneapolis in May

Our keynote speakers will be B. Bove and D. Knopman, who are R. Peterson's associates

My family is fully vested with AFTD. My dad had ftd, and my mom was a founding board member

I was also a caregiver

I was fortunate to be close friends with the late Senator Specter who helped me early on with my advocacy work in Washington.

I am here today to advocate on behalf of AFTD but I speak on behalf of all families battling AA and related dementias.

There is power in numbers and I am optimistic with the help of the Council and HHS that we will find treatments and get to a cure

Thanks to the council for all your hard work.


 

FEBRUARY 2016 COMMENTS

A. Jaiman  |  02-22-2016

I have the following information on last year: "Specific to funding for Alzheimer's research, in his Fiscal Year (FY) 2016 budget request, President Obama requested $638 million to combat Alzheimer's disease across the National Institutes of Health (NIH). This is an increase of $51 million the FY 2015 funding level."

Do you have similar information on FY16.


 

L. Jordet  |  02-18-2016

I have a question that I couldn't find on your website. We are slowly losing my mother to dementia. We are wondering if there are any programs that we could donate her brain when she passes to help in the research of this terrible disease. We are located in Minnesota.

Is this something that you could help us with?

ANSWER:

You should contact your local Alzheimer's Association chapter. They could tell you who in your state is currently doing that type of research.


 

A. Martinez  |  02-08-2016

Greetings from Killeen, Texas! I work as a Graduate Assistant in the Office of Research at Texas A&M University-Central Texas. One of our research projects here at the university is about cognitive care. I respectfully request a copy of the National Alzheimer's Project Act (NAPA) of 2011. Would it be possible to obtain the NAPA in a PDF version so I could cite the document properly? If the NAPA is downloadable online, could you please direct me to the website so that I could manually download the document?

ANSWER:

A copy of the Act is available on the NAPA website under Preliminary and General Information documents at https://aspe.hhs.gov/preliminary-and-general-information.


 

JANUARY 2016 COMMENTS

W. Mansbach  |  01-21-2016

I am the CEO & Founder of Mansbach Health Tools, LLC and the CEO & President of CounterPoint Health Services. I am honored to sit on the Maryland Governor's Alzheimer's Disease Council.

I have been watching the progress of the NAPA Advisory Council with great interest. There are two facets that I find particularly important in meeting the needs of people with dementia and their caregivers.

The first facet is the importance of early identification of dementia. We are able to identify people as early as during the Mild Cognitive Impairment (MCI) stage and differentiate among the different subtypes of MCI. Ideally, people with cognitive impairment would receive an early diagnosis which then would allow them and their families to create realistic plans and expectations for their future care needs.

The second facet is the expansion of supports for people with Alzheimer's Disease and their families (Goal 3 of the National Plan). Strategy 3.B of the National Plan (Enabling Family Caregivers to Continue to Provide Care while Maintaining Their Own Health and Well-Being) is vitally important. To that end, my team and I have developed a program, which uses the acronym ANTHEM, to teach caregivers how to care for themselves and protect/improve their own health, including their somatic, cognitive, and emotional well-being.

We also recognize that at some point, the emphasis for people with dementia shifts from cognition to meaningful engagement -- maintaining the dignity, safety, and rights of people with Alzheimer's Disease (Strategy 3.D). Meaningful engagement also is beneficial for the caregivers and promotes positive interaction between the person with dementia and the caregiver.

I encourage the NAPA Advisory Council to expand their work with public and private sector partners to create a clear path from early identification through supporting those who have dementia and their caregivers -- until we find a cure.

I would be happy to provide additional information and resources.


 

M. Ellenbogen  |  01-21-2016

A few years ago I had share my Dementia Friendly Vision and you added it to the public comments. This is an updated version. Can you please do that again? I can also send it as a word document if you need that. It has been seen by so many world leaders and others actually were driven to start something. Even as far as other parts of the world.

Thanks so much for your help.

ATTACHMENT:

Dementia-Friendly Vision Expanded for State and National Implementation

By M. Ellenbogen
January 2016

PREFACE

As a person living with younger-onset Alzheimer's disease I find it a challenge these days to be able to share all my thoughts with groups of people. While I appear to be very normal when we have short talks, there are many issues that I struggle with. I have lost the sharpness and quick response needed to be able to interact with you all at your level. .While I may not respond immediately, answers come to me many hours later. Sometimes they never do. When I hear conversations I do not hear the entire sentence but part of it, and in my mind I fill in the blanks. It's weird to know I have many answers in my head, but cannot find a way to retrieve them.

Because of all this, I want to ensure I have the opportunity to share my vision of what I would like to see happen in the U.S. and globally. Some of these ideas come from others who have created them before me, while many are my own or a combination of both.

The original document from 2013 has already been shared with many world leaders. This is a current, updated version that includes some new material. I did have assistance in the editing of this compilation, which I hope you will use to advance my dementia-friendly vision wherever you live.

AWARENESS, EDUCATION & CONSOLIDATION

AWARENESS & EDUCATION

For those of us living with younger-onset Alzheimer's disease (YOAD), the public's lack of awareness and understanding is a huge barrier to our ability to sustain full and meaningful lives. Awareness of YOAD is needed to change public perception of who gets Alzheimer's and other dementias. Young people who are under 30 can get it. I know of a 29 year old and a 30 year old who have it. Our country must use commercials, billboards and posters in key places to make the public understand that not everyone living with dementia is in their 70s or 80s. The faces representing the disease must change! We must show younger people in a multi-media campaign so the public learns that Alzheimer's is a disease that affects all ages; it is not just associated with getting older.

Similarly, the public's lack of awareness and understanding about Alzheimer's disease and other dementias must change. Alzheimer's is often used for any form of dementia. While Alzheimer's represents approximately half of the types of dementia, there are other forms of dementia as well. An estimated 1.4 million of the over 5.2 million Americans living with dementia have Lewy Body dementia (Lewy Body Dementia Association, 2015). Other common forms of dementia include vascular and fronto-temporal dementia. The Dementia Action Alliance recommends the term 'dementia' as the appropriate inclusive term.

Currently people who have Alzheimer's and other dementias cannot be cured. There is no way to slow the progression of the disease, and most die within 4 to 8 years of diagnosis. While these two statements are strong I feel this is what it's going to take to reach younger generations and others to jump in and help. We cannot beat around the bush; the public needs to know that this is a horrific way to die. Death is slow and painful, not to mention the impact it has on the family. Organizations like the Alzheimer's Association and others need to provide information about all aspects of this disease so people can be better prepared if or when they or a loved one is diagnosed with dementia.

REMOVING THE STIGMA

We must remove the negative stigma associated with the disease. Too many people are ashamed to let others know that they have this disease. They act like they did something wrong to get it. Now is the time to join me, come out of the closet, hold your head up and be proud in making a difference in how we are looked upon by others and ourselves. We need to show that we are still capable of doing many things at our own pace. We must be able to live life to the fullest even though we have the diagnosis.

CONSOLIDATING IDEAS FROM AROUND THE GLOBE

Most of the people I speak to at high level do not know what Dementia Friendly Communities (DFCs) mean. They act like they know until I put them on the spot to explain. Not many will do that, but I need to know people understand; they need some kind of a blueprint to help guide them to start the process.

I will start out by saying I do not believe anyone out there has it right yet and it will probably also continue to evolve over time. What they all lack is to see what is needed it because we focus on it from a silo point of view and are not willing to place the demands on what are truly needed. We tip toe around it with many of our requirements so that others buy in. While they are doing great things in Japan and the UK I am still not sure someone has clearly written the definitions of what it all means and all who are involved.

A lot of what Act is doing in the US is copied from those programs. I also believe it is not getting the same level of involvement as the UK but it is certainly a great start. Olivia M. needs to be careful on how hard they push and ask. The Act model has now been kicked off in the US as Dementia Friendly America. I think we should have high level standards and allow people to choose what level they are willing to support. We should start off by combining the best of programs used by world leaders.

What I believe we need to do is to create a new temporary group. That group should only consist of the people from around the world who created their own DFCs. One complete manual should be created by including every single idea that they all came up with into one manual. Have a separate section for why they changed direction and what had failed and why there was a need for change in direction or modification to their programs. What are the ideas they would like to see added since their implementation that never made it. Even if they do not think it is possible. Once we have this list then we can eliminate duplication. They should all vote on it as the ongoing model. They also need a few people with dementia. I do not mean just bodies but people who really have a good view of what is really happening. I also believe we should create tiers or levels for the various goals created. Maybe 6 levels with the 6th one that we may know will never even happen. But maybe some parts will. That will be our way to measure progress and give other bragging rights and create competition. We can talk further but I believe you know where I am headed with all this. A 1 may be as just a simple awareness to all of the communities to know about dementia. Just knowing. It seems like such a simple task.

In my opinion people like ADI should be behind this and other national groups like AARP. That is the only way we will focus to work together and not create silos. I realize it will need to be done at many local levels but we need to do it with global thinking in mind

For further information about Dementia-friendly Communities:

DEMENTIA-FRIENDLY COMMUNITIES

My vision of a dementia-friendly community is a bit involved, but if it is implemented it will have a huge impact in many ways. When I think of a dementia-friendly community it refers mostly to those who are in the early to mid-stages of the disease. This idea was first started in the UK by my friend Norm McNamara who is living with Lewy Body Dementia.

We need to encourage dementia-friendly communities and businesses in which dementia is treated like any other disability.. This community should include first responders, health providers, service providers, local businesses, public transportation providers, airports, and the public..

UNIVERSAL SYMBOL: THE WORLD PURPLE ANGEL

There is a common logo that is slowly becoming the internationally known symbol for those living with dementia and I think we should use it. It is called the World Purple Angel.

To be used on all websites and dementia patients information and hospitals

For stores and businesses to show they know and have been educated

This was created by N. McNamara and is starting to get a lot of recognition. In fact it is now going to be used in some US hospitals as an indicator that the person has cognitive issues; they hang it on the door of the hospital room of the patient. I recommend that we adopt this symbol for all programs connected to dementia-friendly communities. Many people create their own logo for their own local area. For some reason they all want to be different. I see that as a huge mistake. When people with dementia leave their area they should be able to rely on a symbol that is used everywhere they go. Since many already have a symbol they should also include the World Purple Angel along with their own. This will be the same as for people who rely on a handicap sign. We must do this if we are truly looking to help people living with dementia. While I don't care which symbol is used I think we should not create a new one. The World Purple Angel is already known in all 7 continents. For that reason alone I would say that is why we should focus on using that symbol. Also it was not created by any organization, but people living with dementia.

Each of the following elements should be considered in the creation of dementia-friendly communities:

MEDICALERT & SAFE RETURN SERVICES

Six in 10 people with dementia will wander and/or get lost. A person with Alzheimer's may not remember their name or address, and can become disoriented, even in familiar places. Anyone who has memory problems and is able to walk is at risk for wandering. Even in the early stages of dementia, a person can become disoriented or confused for a period of time. It's important to plan ahead for this type of situation. Wandering and getting lost can happen during any stage of the disease. Be on the lookout for the following warning signs:

  • Returns from a regular walk or drive later than usual
  • Tries to fulfill former obligations, such as going to work
  • Tries or wants to "go home", even when at home
  • Is restless, paces or makes repetitive movements
  • Has difficulty locating familiar places like the bathroom, bedroom or dining room
  • Asks the whereabouts of current or past friends and family
  • Acts as if doing a hobby or chore, but nothing gets done (e.g. moves around pots and dirt without actually planting anything)
  • Appears lost in a new or changed environment

     

For people with dementia wandering is dangerous, but there are strategies and services to help prevent it. First responders need educating, and a system needs to be created that will help identify us without becoming a target for others. I believe we need a system that allows individuals to register with the state, or someone of equal standing, this should include care partners as well as it's important to have emergency info on the caregiver. I would like to see something similar to MedicAlert at a state level. What follows is a brief outline of the MedicAlert system:

MedicAlert® + Alzheimer's Association Safe Return® is a 24-hour nationwide emergency response service for individuals with Alzheimer's or a related dementia who wander or have a medical emergency. We provide 24-hour assistance, no matter when or where the person is reported missing.

  • If an individual with Alzheimer's or a related dementia wanders and becomes lost, caregivers can call the 24-hour emergency response line (1.800.625.3780) to report it.
  • A community support network will be activated, including local Alzheimer Association chapters and law enforcement agencies. With this service, critical medical information will be provided to emergency responders when needed.
  • If a citizen or emergency personnel finds the person with dementia, they can call the toll-free number listed on person's MedicAlert + Safe Return ID jewelry. MedicAlert + Safe Return will notify the listed contacts, making sure the person is returned home.

     

The Alzheimer's Association has developed training tools and support programs to prepare law enforcement, EMTs, fire fighters and other first responders when they encounter a person who is wandering.

The information on your medical alert bracelet will connect health professionals with your emergency medical information. We provide memberships and services designed to protect you and your loved ones during a medical emergency or time of need.

MedicAlert's medical bracelets, medical IDs, and other medical jewelry have been used to alert responders of the underlying medical conditions a patient may have -- such as allergies, anaphylaxes, diabetes, and autism. First responders are trained by MedicAlert staff to recognize all forms of medical IDs, and our services ensure they get your up-to-date medical information, the moment they need it, to make informed decisions about your treatment and care. MedicAlert services and medical IDs are also used to communicate advance directives and can even help those with Alzheimer's or dementia make it home safely during wandering emergencies.

For more information please visit their website: http://www.alz.org/care/alzheimers-dementia-safety.asp.

Those who choose to register would wear a bracelet similar to the one above or some type of tag on a chain. By registering the people would be able to take advantage of many benefits. Family would need to register and could be set up when in the clinic for diagnosis as well as info bracelet ordered and resources given out.

All those registered would be given a unique identification number that will have basic information that could be used in case of emergency. To stop the system being abused or compromised, this information should only be accessible by the relevant people, following a secure procedure and calling a special telephone number and providing the person's ID number. (This would only be accessed by calling a provided number)

It may include information like blood type, allergies, last wishes, drug information, doctors, emergency contacts, and addresses,

This system needs to be linked with the 911 systems, and the yellow dot program. When a person calls the fire department the address should be flagged immediately when it comes up as a person with dementia living in the residence they are being dispatched to. This is important for many reasons.

A person with dementia may panic in this situation and may not know how to respond to the emergency conditions. They may be much worse than a child in some cases, and just curl up in a corner in fear and just stay there. They may not even speak out when people are calling their name. They may have even started the fire and are scared. They could be combative and the firefighters need to know how to deal with that situation. There are many other reasons why the firemen need to be aware before arriving.

If we ever have some kind of a natural disaster or need to evacuate for some emergency this system will be a major asset, especially for those who may be at home on their own. By being registered this will 9 insure a much better outcome for those who may not be able to think for themselves. Many of these people would not leave with just a simple call and they may not even understand what is said in robo-call type alerts.

If the police are called that should also be flagged immediately. It could be the person with dementia calling in, and not able to articulate the problem. It could even be a false alarm because they are scared when there is really no threat. Sometimes people with dementia have been known to make serious accusations of being threatened by their spouse with a gun, which has led to spouses being locked up for days because the system was not aware of the person's dementia. Again, if members of the emergency services are coming to a house where a person with dementia resides, they need to treat threats in a completely different way otherwise it can escalate and even become deadly.

Not everyone will easily display, or even be willing to wear the bracelet or tag because of the stigma surrounding this disease. Only when this changes will people feel more comfortable about sharing their diagnosis with others.

Throughout this document I give many examples to where one can wear a product to be identified as a person living with dementia. Keep in mind if we do this right it will only require one if we can all learn to work together and make it a seamless operation. I have no doubts that can work and that is my intent.

ISSUES WITH POLICE: DRIVING & WEAPONS

Driving

Driving laws need to change to remove the licenses of those that are no longer capable, while not impacting those that are still able to drive. It should be based on the person's true driving experience and ability, and not on perceptions or fears. It should have nothing to do with getting lost; GPS tracking devices can help us if that is a concern. Many people have the misconception that if a person with AD is in an accident the insurance company will not pay for the claim, or may even sue them. While there are many tests available to test one's driving, many are not fair to a person living with AD. In fact if the average person was given the same test they may even fail. Better tests that deal the individual living with the disease are needed and all must be able to test this test. Some of the cognitive tests do not correlate to driving ability, but to failing and singling out people with AD. That is completely unfair. For example I fail the Trail-Making Test, Part B and I still drive very good. The testing should be free or paid by insurance. These tests can cost around $300 -$350, and provide annually. Every 2-3 months we should drive with a spouse or other person who understands us to see how well we drive. That should be a regular part of our future lives, and they should be the ones to tell us when they feel it is time to give up driving. I am not saying that people with AD should not eventually stop driving, but it should be done for the right reasons -- that they will become a danger to them or someone else. What we need to 10 focus on are the real problems of driving, and not the side issues related to them. We must embrace new ways to deal with people with AD and find new opportunities and technologies to use to our advantage so we can enhance the lives of those with this disease; so they can continue to lead a normal life for as long as possible. Do not fall into the one-size-fits-all trap because all those living with AD are different from each other and we must figure out a way to make everyone feel safe including those living with the disease. We are still human beings. My biggest fear is that one day I will have an accident and my license will be taken away. It may not have anything to do with my Alzheimer's, but it will be perceived that way. I have had 3 to 4 car accidents in my lifetime, some being my fault while most were others. We all have them.

As a person living with AD I seem to notice much more. I see many people run through lights, not use turn signals or come to a complete stop at the stop sign. I see people cut others off or shift in to other's lanes without paying attention. All I can think is that if people saw me do any of these things they would want to take my driver's license away, yet all of these folks are normal and they just get a free pass. Why?

If someone with Alzheimer's is stopped for a sobriety test they may fail because they have trouble following instructions or poor gait. They may also be much slower with their responses, and may even give you a blind stare because they are confused. They may not be able to follow complex directions. Directions need to be broken down into steps.

I know we want to make the roads safe so we need better testing methods for Alzheimer's patients who drive. Be prepared to deal with people who may seek help when they are lost. We can get lost while driving; this does not mean we cannot drive. These two issues are often confused by many.

The car should also have some sort of identification mark. It could be tied-in with the yellow dot system; however, I am concerned that we may become a target because of that. We are much more gullible because of this disease and that could be a very serious issue. I was someone who always kept all those scammers at a far distance, and now I am starting to fall prey to some and think it will only get worse as time goes on and I get worse. It could be on a driver's license, like a donor or class B license. It could be a code that is not obvious to all.

Weapons

While I am on the subject of issues with police there is a document, which I shared with the chief of police a few years ago. While some changes are being implemented in some parts of the US, I am not sure they are being addressed in PA. I tried to reach out to my local police department and training facilities, but was just blown off. One of the biggest and most serious issues that I feel needs to be addressed is that of weapons. I came very close to taking my life, and even told a police officer on the telephone, but he refused to do anything. I just wonder how many other people pleaded for help and ended up killing themselves because nobody answered their cry for help. This is unacceptable.

Sometimes people with dementia get confused or feel threatened and may make accusations that could land someone else in jail. Be prepared to deal with cases like this. They need to be handled very differently from someone without dementia. Some would say like a mental illness. They believe what they are saying is fact.

Alzheimer's patients can sometimes become very aggressive and defensive during an argument, they can even become threatening. This is the wrong time to try to remove them from their home. They need to be calmed down first; otherwise it can become a disaster for that person, because many will not understand what is going on.

We require a place to store or remove guns from a home when needed . I came up with a simple way that this could be accomplished without too much impact on the police. A gun safety device can be used to secure the guns in the person's home, and the key can be given to someone responsible. There were other suggestions made.

TECHNOLOGY TO ENHANCE QUALITY OF LIFE

In preparation for the 2015 AARP Dementia Care Technology and Innovation Forum, I wrote the following: These are ideas I have shared with others over the years.

I believe technology is critical to those living with dementia and their caregivers. But I want to emphasize that it needs to be very affordable or better still, free.

I would like to tell you a little about me. In my past jobs I worked in IT, Data Communication, TV & Radio repair and also did programming. I designed and built world class data centers. All of my life I came up with ideas that most though were impossible and the demands I made were unreachable. I can tell you almost all of them became real at a later time. And I have had some crazy ideas.

There are many different technologies already available that, once modified, will be suitable for someone with dementia.

Here are a few ideas.

A simple type pressure + mercury type sensor, which is addressable, could have multiple applications, such as keeping an eye on your loved one at night if they get up, or used on a door in the house to trigger an alarm.

Timers specially designed for electric stoves that can be programmed to operate during certain hours with automatic shut off during certain times of the day.

Special water sensors that can be added to every sink that will trigger automatic water shut off in case of overflow.

GPS use for tracking and wandering needs improvement. Battery life and service area are two key areas. The price today is unaffordable. There should be a special class of pricing for these types of devices when it comes to monthly fees.

RFID is a great tool in combination with GPS. Products can be made to just work around the house at no monthly cost.

We make alarm systems that have all kinds of sensors in the house which all report back wireless to one centralized controller. Why are we not looking to do that with all products for dementia? When I had a boat I had many gadgets on board and I was able to connect them all together so each on could coordinate with each other and give me the information I needed when necessary. That is how we should be thinking; a standard protocol to use and interface to make it standard.

My idea is to have a noise canceling head set that has multiple uses. A head band with a pin point accurate direction mic that when facing a person it will pick up what they are saying and not the surrounding noise or people speaking. It should also be able to be used standalone noise canceling and MP3 input. Must be easy to use as this is for people with dementia. The biggest problems I and many living with dementia is that we can no longer filter sounds out. When we are in public and someone speaks it all comes in at the same volume all mixed together. If I could focus on the one person I would go out more frequently to restaurants and public places. Many times in public places the noise is so loud that I cannot stand to be there. We need to make these as small as possible and to be somewhat attractive.

There are many ides I have about using technology in assisted living centers or places like them. Sound proofing and design is critical to people living with dementia. Colors and lay outs are all extremely important, as is lighting.

A simple solution that is in place but needs to be enforced, TV commercials on some stations are much louder than the regular scheduled program. That is enough to set me off or create agitation.

While there are many types of apps they need to be made easier to use.

My GPS system for my car is great. If it only had a dementia mode that would tell me much earlier to start moving over toward the right lane if I want to get of further down the road. Especially when doing high way driving or very fast. Many times I may not hear it at first as I am concentrating, maybe a simple voice command that can be repeated if prompted. All of this is possible with additional programming and mode options.

A simple solution needs to be created for those of us who live with dementia. The governments need to sell us a single card or give it for free to be used unlimitedly on and transportation system. I have lots of trouble buying passes and often end up going the wrong. They need to find a way to keep us engaged by using these systems. I believe this should be part of a bigger system as I have spoken about in my dementia friendly communities.

Wearable sensors can become another great area because many of these ideas can be incorporated into one devise: reminder for pills, when too eat, appointments or even how to get home if lost; or if you fall or such, panicking. The idea and applications are endless.

Google glass is one such product that could have such a huge impact for those living with dementia. It could help me get around help me remember what people say to me if it was set up to do all that. It has many limitations today and laws need to change. You are not allowed to record conversations today in many states and that is critical to people like me. You should be able to speak to it and say I am lost I need help and it would automatically take action.

Packages for easy dictation from a portable recording device to a word document. There are some things available but they need enhancements.

For me my Outlook is my brain but it does not easily connect with any other devices. That should be easy for someone to allow it to sync up to today. I am good at home but lose the capability when it's not available to me.

Since I wrote my drone idea I have spoken with Project Lifesaver who will have something similar out soon. While I think what they have falls short and way to costly, that organization does some great things and should become embraced by all. That would not only save money but save lives. Let's work with them to improve their system with technology. Below was what I have shared with them and others.

Let's save lives and reduce potential injury for those who wander because of dementia, including Alzheimer's. The task of searching for wandering or lost individuals with cognitive conditions is a growing and serious responsibility. Without effective procedures and equipment, searches can involve multiple agencies, hundreds of officers, countless man hours and thousands of dollars. More importantly, because time is of the essence in such cases, every minute lost increases the risk of a tragic outcome. This is a program that must be offered in all our states. After all, we give prisoners bands to track them for house arrest with taxpayers' dollars. Why don't good people deserve to be kept safe? Statistics show it will save money and have better outcomes if we all invested.

I have an idea on how we can find people with dementia who wander in less than 30 minutes. What is even more interesting is it requires very limited staff and is mostly automated. While this may all sound futuristic I can guarantee you this is all possible with technology today.

Picture this, someone goes missing and someone calls the emergency services number. Immediately they are identified as a person with dementia, and the operator pulls up the person's identification number from a pre-established database. They ask the caller for the last known location of where the person was seen. They enter that in the computer and hit enter which starts a search.

At pre-set locations, automatic drones equipped with GPS and RFID technology take off in to the air over a 50-mile radius, which is equal to about 7854 miles. That number can be greater or less. The drones have software that allows them to talk to each other from drone to drone. Within 10 minutes they will identify if they have located the position of the person missing. This can go one of two ways. I have made the assumption the drone can only identify signals at 10 miles radius based on RFID technology. That number is more like 12 -15 miles. So that will cut down on the number of drones needed.

If the person is located it will send back GPS signals of the location of the person to a central computer, which will automatically dispatch the police to the area. They are equipped with a RFID tracker, which can locate the person if they are within two miles of them. They will then find the person based on the signal. The numbers I use are very conservative so in reality it will be even better.

If no signal is detected the computer automatically expands the search to a much wider area or in a specific direction. There are many factors that go into how fast one would initiate such expansions. If a medical concern exists one may do all at one time. This would all need to be determined.

According to my numbers we have 3.8 million miles in the US and would need 8,400 drones. For the PA State, which is 46,000 square miles, we would need 102 drones. While this number was purely picked out of my head I believe for $250.00 a drone could be built with all that is needed to accomplish all this. This would be one that is self maintained. I have many ides on that alone. I am not surprised if the military already has designs for these or even others planning already.

Some assumptions are made in order for this to happen. All people with dementia who want to be in the program will register with their local police. They will be given a bracelet to wear that will be multifunctional.

The cost of this may not even be as high as we think because we may be able to tap into the companies who are going to use this technology. Amazon, Google are just some. I cannot imagine these organizations would not be willing to add software that will help benefit the community.

I was told that it cost about $10,000 every time we do a search. Let's do this more efficiently and quickly while saving lives. I believe this could all be possible today. I also don't believe it would take a long time. It can be started in one state as a trial and then branch out. Keep in mind that this system can have even more uses if designed properly. It can be used for other things such as weather, tracking prisoners, locating vehicles, etc. There are many other uses which could lead to shared cost.

There is a small cost to the bracelets as they would need their batteries replaced. Some places already use such system.

This is another idea I have shared with others. There is no website out there that can help those that needed. This one will help all and could be good for other causes.

Over the course of the last 6 years I have had the opportunity to see many sites that are geared to helping those impacted by dementia. So many times I see these folks struggle to get the help they seek. What I find even worse is that many of these people who are so desperate for information get bad or misleading information because people are willing to share their ideas with others. You have people discussing a topic they are unfamiliar with giving someone else recommendations based on their own experience or something they may have learned.

What is so wrong is that we have no system in place to help these folks, which is frustrating because no one seems to want to create a system that will help all of those who use the Internet today. I have recommended this idea to many and no one seems to be interested in building a system, which in my opinion, would be a lifesaver to many.

In order to build this system it would require IT folks to work closely with dementia experts along with caregivers and those living with the disease.

I see this as a very simple solution and it must be made available at a well-known site, such as AA or a government site. The system would be based on what I call the Helpdesk approach, which is used by many IT organizations.

When you call a helpdesk they need to ask you the least amount of questions so they can quickly route you to the proper department responsible for your issues. Their goal is to fix it on the first try but if not they do the hand off. I believe this system works very good if you know to ask the right questions and provide good answers that lead to solutions.

Here is an example of how I see this application helping those with dementia. It will need to be created like a flow chart with the right questions and to continue to drill down until you get to the answers the people are seeking.

When you first come to the site it will have the first question. Who am I? You would then be given a number of choices such as: I am a caregiver, I am living with dementia, I am a medical person, I am with the press, I am a friend or family person of a person with dementia, or I am a business. You could have more or less and while these are not the right names this gives you an idea on how it works.

Based on your answer it will start to drill down to another level. Let's say you selected "I am a caregiver". That now brings up the following question. Why am I here? You would then be given a second set of choices such as: crises, general education, what's in the future, resources, emergency, and support group. Again this can be longer or shorter based on the categories one can think of.

Now that you made a selection it will drill down to one more level. Let's assume you selected "Crises". It will now ask you to make another choice. What type of issue do you have? Now it is going down to the third level, which will have many categories on topics. This must be much longer.

Some of those choices may be: suicide, swallowing, falling, behavior issues, wandering, grooming, sleeping, activities, legal stuff, hospital, assisted living centers, products, resources, helpline, and call in line, medications, and hospice. Again this list will be much longer.

Now some may drill down to one or two more levels but most will end at this level. This is where you will provide detailed answers to what they needed. This will be the most choice for the reason they came to this site. This should help them with the correct answers for why they are here. When they select titles of description it will give them all of the details on a specific subject.

Let's say you had selected "behavior issues". This will take you to only information related to issues for items related to deal with behavior issues only. It may include ways to deal with them, where to go to seek help. Different types of issues and possible solutions. Each area should have an option that says I do not see an answer for my issue. They need to always have a way for an answer.

I do believe much of the information already exist in databases that we can already use. Not all sites will have all the answers so there is a need to allow for the answer to be linked to another site.

There is absolutely no doubt that if we create this system it will have a huge impact to helping caregivers and others affected by dementia. This will lead to better quality of life to the individual with dementia but also a lot less stress to the caregivers. They will be able to get to the answers when they need them.

I have many ideas and always willing to work with anyone in beta testing. I believe technology can allow us to live life to the fullest if it is done right and affordable. If we have the right engineers in a room anything is possible as long as they are all willing to work together.

DEMENTIA-FRIENDLY HOSPITALS

Being an advocate for dementia has driven me not only to educate myself on the disease but also to investigate how the medical world responds to our needs and requirements. Over time I have learned a great many things, one of which is that the US healthcare system is not appropriately prepared for those living with dementia.

To date, people who are responsible for implementing change tended to look at the situation from the caregivers' point of view, which is another major issue that needs addressing. We never ask those who are living with the disease what they want or need and I feel no polices or procedures should be considered without input from us.

Health providers and institutions must change in many ways to make it better for those living with dementia. Physician education -- Doctors need to be better educated, and need to commit to a more timely diagnosis so that patients can collect the benefits they deserve and are entitled. Doctors should not act like our lives are over. Once a diagnosis is made it should automatically trigger a referral to a psychologist or psychiatrist so the person can learn to deal with the devastating news. Many people are in denial and waste that last few years not knowing what to do. Instead they should be living life to the fullest. Make the memories. We must be encouraged to make living wills and put our financials in order quickly since our minds are going. We have no time to delay. Encourage participation in medical trails and offer frequent checkups. Living wills should be very different for those with AD. While this is a taboo subject we should have the right to end our life in a dignified way. We must talk about these issues.

Below is a list of issues that I have been working on with a local hospital in hopes of starting the first dementia-friendly hospital in PA. I was trying to build a training program with the Alzheimer's Association along with a question and answer session with people like me who are living with the disease. Below is the list I have shared with them. Some hospitals are actually doing a quick cognitive test by asking 3 words upon registering to see if there may be a concern even if the person does not have a diagnosis. I would expect that all hospitals would educate staff on the issues, for instance we can easily get lost while trying to find a department as an outpatient:

At registration, identify a person that can and will be able to be involved in all decision-making, along with the patient.

At registration, identify a person that will be given full access to all records on behalf of the patient.

Patients bring in a list of current medications. If for some reason you must change the drug or dosage for any reason, the issue should be addressed with the patient and caregiver to ensure there are no issues (even if it's as simple as converting to a generic). Sometimes patients cannot take another form of the same drug-ask them.

Example: My doctor switched me to Galantamine rather than Aricept because of side effects. In the hospital, they substituted Aricept. (My wife had Galantamine with her, but of course it is a big deal that you should not take your own meds.)

A special ID bracelet should be placed on this type of individual so the staff is alerted that this patient has some form of dementia. This will help them if the patient is acting confused or wandering or just needs a little extra help or explanation. It may also mean that the patient isn't great at making good decisions. If you need a color, purple is perfect.

Example: I needed a Fleet's enema pre-op. The nurse asked if she should give it to me or if I wanted to use it myself in the bathroom. Of course, I offered to do it myself. I found I had difficulty once I got in the bathroom by myself; a bad decision on my part. The nurse should have not given me the option. (We do not want to appear stupid or show our flaws so we may do something to show we are still capable when we may not be.)

I know they always ask the patient for their full name and birthdate -- hat may be hard at times for us. I can become confused on a good day, in the hospital it can be worse because of pain medication or being awakened suddenly or the stress of just being out of our routine. Maybe another way can be figured out. (Before a nametag is placed on a dementia patient it may require 3 or 4 staff individuals to ask the patient for that information and each must identify the same information before the ID is placed. This will insure the wrong tag is not placed on the patient. Use the verbal ask on critical things like surgery and drugs given the first time the nurse may see the patient)

There are special things one needs to know about using Anesthesia. Anesthetic agents are a cause for concern in AD pathogenesis. Luckily, the field of Anesthesiology has addressed these concerns in an excellent and honest manner. I would defer to their consensus statement:

http://www.anesthesia-analgesia.org/content/108/5/1627.full
http://www.mc.vanderbilt.edu/

The bottom line seems to be to avoid isoflorane.

Do not always consider a patient being confused as a part of the dementia, but it could be much worse due to the drugs they are on. When I was on pain killers my wife could not even get a response from me that made much sense, and she knows what's normal for me.

A real concern exists on what type of drugs the patient may receive for Anesthesia. Pain killers will also have a much greater impact on this type of person.

While ordering food from a menu is simple, it is very overwhelming for me to keep track of things and what items may even go together, or are even needed. I will probably need help with this task.

Don't assume we can figure out how to use items in the room like TV, Phone, call button, and anything else. Please point them out and provide a simple explanation on their use.

Aides should not be the first point of contact. I am not always good at explaining what I need and the aide was not always good at interpreting what I was trying to say. Aides are okay for follow-up or to help with food menus. Again this is why training on all levels is so critical.

When asking a question, give them a minute or two to answer without going on to some other question. You could even ask them to think about it and come back in 5-10 minutes, no longer. This is very subjective depending on the person. We often need a few minutes to gather our thoughts. We might even answer a question right away and then realize a few minutes later that that wasn't what you asked.

Somehow you need to insure the patient response is really correctly given -- they sometimes give an answer just to not appear stupid or show they did not understand. Maybe some visual aid or clues can be given along with the verbal depending on the stage the patient is in.

Try to keep items and things in the room in the same place once they determine the best location for them.

I personally feel these patients should be kept a bit longer than the average person, for observation. This would just be to make certain there are no issues at time of release.

Offer a pen and paper to keep in the room. Tell them to write down questions they want to remember to ask when the nurse comes in the room.

Keep in mind many patients with dementia can no longer spell correctly and may use the wrong context for words.

This is the wristband that was implemented for all patients with dementia at Brooksville Regional Hospital, along with this square magnet to be placed on the outside of the patient's room on the doorframe. Before any of these wristbands will be used, training seminars from the Alzheimer's Association will held for all of the hospital staff members. This is a major step forward in maintaining the safety of all dementia patients during hospital stays.

The hospital loves the purple angel logo, They went through three different band designs before this. The problem being that purple is also the national color for DNR (Do Not Resuscitate).. What I love about it the most is that it's for "all dementias," which is what we truly need in the hospitals.

Patients should be made aware of the living wills which should be very different for those with AD. While this is a taboo subject we should have the right to end our life in a dignified way. We must talk about these issues.

Recommendations to DAA Optimizing Health & Well-being Workgroup Members:

Dear DAA Workgroup Members:

After listening to the call yesterday and having time to think about it, I probably need to say that I do not believe there are any well established procedures for the Hospital systems on how they should deal with patients with dementia. While I believe there are some great best practices that can be pulled from all over the world related to care nursing homes, and environments dealing with what people refer to as behavioral issues, there are none that I have seen today that do the same for hospitals.

I have a lot of material that I pulled together that I hoped to start a first of its kind tool. While I was partially successful I realized the bigger stumbling block was the time these people needing to spend on education and the cost of that to the organization. I have also learned that from dealing with the hospital trying to implement the plan, that there is a thirst for this knowledge and they are extremely uneducated concerning dementia. I was very surprised that staff did not even know what dementia was in relation to Alzheimer's. It was very scary to hear them explain what I consider to be the basics.

One of the biggest problems I faced is I have no credentials to get these people to listen to me. I had a team of educators who were willing to dedicate their time to help create the course for the hospital I was involved with. It was all free to them. They felt it would take 3 hours to do it right plus taking the virtual dementia tour. They decided to do it in 30 minutes plus the Dementia tour. The problem was they did not make it mandatory. The staff has about 5000 and that is no mistake. Based on what I last know it probably had 300-500 actually take it. Mandatory is the key. I also realized while the dementia tour was a eye opener it left people confused of not being able to truly make sense of it all. That is where I believe I added the most value. We had a question and answer session with a person living with dementia. That I believed was the biggest eye opener for them and to tie together what they had just went through. I only had two people that could not get the concept but were changing to think differently about it.

I believe what is needed is to create a module lesson plan that is web based that is broken down in 30 minute segments. It should consist of 6 lessons that they receive CEU credits for. This should be mandatory for all new hospital employees within 90 days of hire. All this would be considered part 2. Part 1 would be the taking of the dementia virtual tour followed by 2 -3 30 minute segments of a filmed question and answer period. The questions are the best questions taken from medical staff and answered by the person living with dementia. There is so much to be gained from all that. Only after taking part 1 can someone take part 2. The other item of key importance is the ability to identify patients with dementia upon admission. I have information on ways to accomplish this within the HIPAA requirements.

The biggest problem I see with all this is the Virtual dementia tour. This is a bit more involved and requires live people to make it happen each time it needs to be implemented. Studies have shown that this must happen first to get the most of the education. I have many great ideas on how to make this all successful and many Dementia educators agree with what I have in mind. It would just take someone's time to spend time to speak with me and to convey it to others to make the best possible plan.

I have seen the Alzheimer's Association Plan and it even falls short. I heard it from their own high level people. They are doing something in Florida that is kind of good in the hospitals, but I believe it falls short. It was driven by someone who was a caregiver and they were looking at it from their viewpoint. It is good but failed to see it from my eyes as a patient.

I also am aware of a few organizations out there that one gets certified for taking their courses. I honestly can say I have not seen the material. There are only a few and they charge money for them. The very first question I have is who gave these people the right to say the have the best knowledge to educate us all and to claim they can give us a certification. They were very smart marketing people in my view and found a niche. I even asked one of the CEO if they had someone with dementia in the process and they were quick to respond they had caregivers involved. I told them that they had failed already in the process. In my last communication with them they were going to bring it up to their Board as they thought that was a good idea. I find it sad that these people are considered leaders and did not even think of something so simple.

In my opinion if we want to bring change we cannot focus at the hospital level. If we want quick change we need to go after places like the above and places like The Joint Commission, and others like them that provide accreditation. We need to work with them to insure they have the best model and they can help make it successful. I tried to do this early on but I have no credentials in their eyes. I think they probably laughed at me.

With this group and the support of some key doctors, part of DAA, I believe they may be willing to listen. I have had 3 stays in the hospital and all I can tell you is the system is broken for people with dementia. My recent stay at the hospital was after they had supposedly implemented some training. They had failed in my eyes as they totally failed me as the patient. It's one thing to not know what you do not know, as is the case with most hospitals today. But it's another when they do know the issues and fail to address them. So I guess what I am saying is we need to create the actual training material as I do not believe it exists today.

DEMENTIA-FRIENDLY BUSINESSES

Work environments should be created in which we can still feel productive without penalty to the employer or the person living with the disease.

I envision that businesses take a 2 or 3 hour course provided for free by the Alzheimer's Association and others, to make them aware of the issues that people with dementia deal with, and what they may need help with. On completion of the course they will get a sticker that they can display in their place of business that says Dementia-Aware with a picture of the logo. By doing this we will be creating awareness, and educating many on how to make it easier for us to still function as members of society; something that is not always easy when you are an adult who is facing progressive cognitive challenges.

Some of the issues may be

  • feeling panic in a large store when becoming separated from the person they came with
  • being asked a question and not being able to respond, or even giving the wrong information
  • having trouble locating items in stores
  • no longer being able to calculate how much they have spent or can spend if they have a budget
  • getting lost, losing sense of direction, or not being able to locate the car in the parking lot
  • it would be nice to get assistance when there are similar products to choose from, because I can no longer do comparison shopping based on price, or if an item in the same category is on sale
  • When it comes to purchasing tickets for travelling on trains etc. staff need to be aware that we may need help. We may not be able to check in at the airport unaided. We should not be penalized for not being able to take advantage of online offers because we cannot use computers. We may need to be taken to a gate or to a temporary room until our flight or train is ready (this does not mean we need to be ferried about in a wheelchair!)

     

Even though we are living with AD we should be encouraged to live life to the fullest. We need to keep our minds engaged. We should be able to do volunteer work, and to still do high level functioning jobs, and the company not be penalized, and the person with the disease should not be penalized by Social Security because they are working. As volunteers I would expect that our transportation expenses be paid for, and maybe even lunch. This will have a positive impact on the people with the disease and be of great benefit to a company that can utilize the person. Some do not want jobs like pushing hospital beds around, or doing simple tasks when we have a high function skill set.

Companies need to treat dementia like any other disability. The following comments are from an individual who works in Human Resources:

"Tell your story to HR Management. What kind of company do they want to be? How will they protect their human resource that has dementia - and be good risk managers by taking appropriate action to minimize the risk of litigation for wrongful termination under ADA? What are the costs of unrecognized dementia in employees i.e., lost productivity, errors, quality, odd/unexplained behavior, a decline in management skills leading to more of the above? What are the State percentages? Give examples -- If they are a company of 1,000 employees that equates to xx employees who will have early onset dementia -- can they afford to be blind to the problems these individuals will cost the organization? Alzheimer's is not all about the needs of the caregiver. Little to no attention is given to the INDIVIDUAL WITH DEMENTIA. If the company has a PEP program (Personal Employee Program that typically provides 8 to 12 sessions of counseling when an employee suffers from personal problems (divorce, runaway kids, elderly care, etc.) why not have a Dementia Hotline/Exploration. Why not help people self-diagnose early and assist them to seek a medical diagnosis, so TOGETHER the employee and company can make a plan for them to ultimately exit from the company with dignity - example: an employee is still skilled, but may need to move from having the responsibility of being a manager to becoming an individual contributor. Why wait to FIRE someone for non-performance, when you could continue to employ the person until the day comes where there is no job which matches the employee's skills. A diagnosis of dementia IS protected under ADA. Why wait to be sued by an employee who was unfairly terminated because of his disability. Why not be proactive and humane, keep the person off unemployment; mitigate your exposure to litigation. Such a small cost to set up a program to assist and empower employees to work TOGETHER with them, give them dignity and determine together when it is time to go. Help them transition to retirement with disability; unemployment; assistance from the Alz Association."

I would like to see a simple pamphlet be put together for those who are living with the disease covering all the benefits available to us living with dementia. It must be simple to understand, short and to the point. The procedure should include all of the resources available and where one should turn. Today one has no clue and they do not know what is available. This should be handed out with a diagnosis from your doctor.

Laws need to change so those who are getting fired can collect the benefits they deserve. Let's stop burdening the social security system. Because there is no clear test for the diagnosis of YOAD, many diagnoses are delayed. Many people are terminated from jobs, and are unable to collect their long-term disability insurance, because of the two-year law. Most diagnoses occur much later, as in my case. I paid a lot of money into a long-term health disability plan in my company and I lost it all because of the law. I now get less than a third of what I would have been entitled to, and no medical coverage which I would also have had, all because of a law that does not work for individuals with this disease. Changes must be put in place until we have better tests available. If someone is terminated for non-performance and they have been diagnosed with dementia at a later time, they should have the right to go back at least six years to prove their case. Companies should not get a free pass because we all pay for this injustice. The two year law is a failure for people like me with dementia.

I was terminated from my job before I got a diagnosis which took another 6 years. Now I am forced to rely on government disability. Dementia is a disease, and the people who have it should be treated that way.

FINANCIAL ISSUES & NEEDED SYSTEM CHANGE

Younger-onset Alzheimer's, also known as early-onset Alzheimer's, generally refers to those who are affected by the disease before the age of 65, usually in their 40s or 50s. Because of their younger age and healthy appearance, doctors often attribute symptoms of Alzheimer's to depression or stress, resulting in delayed diagnosis. These symptoms, such as challenges with short-term memory, impaired judgment and difficulty making decisions, eventually progress to a point where they affect workplace performance, and ultimately, jeopardize employment. Many individuals living with younger-onset Alzheimer's are in their prime earning years and supporting loved ones at home. The loss of income and access to employer-sponsored health benefits can be devastating.

This document reflects State and Federal issues that may not be working. My goal is that if the existing jurisdiction responsible is not able to enhance the process, the other will step in and fill in the gaps so people are not impacted. It is my hope that they can work together to fix the weaknesses in the system that may have been overlooked.

To help address their financial need, many individuals with younger-onset Alzheimer's rely on Social Security Disability Income (SSDI), or Supplemental Security Income (SSI). In March 2010, the Social Security Administration (SSA) added early-onset Alzheimer's to its Compassionate Allowance Initiative, which expedites the disability determination process and serves as a trigger to begin the two-year wait for Medicare benefits for those under the age of 65. Family members (e.g. spouses and minor children) may also be eligible for benefits based on the applicant's work record. This addition by SSA has been a huge relief for individuals and families dealing with Alzheimer's.

However, many are treated like they are crooks when they apply for Social Security Disability. It creates an added burden on the family and the patient. People say that the Compassionate Allowance act will help people, but it did not help me, and many keep saying that it's not working.. The following story is from an ongoing case. This program may be better but the people who run the programs are clueless in many ways on what a person with AD can or cannot do. This person is not only struggling financially, but has no one to look out for them. I cannot even imagine the hell they must be going through because it would take me forever to complete the same forms.

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It's so nice of you to think of me. I wanted to add that the reason I was turned down on the first application and reconsideration was because I filled out the RFC form myself (I lived alone at the time and it was a necessity) and not for lack of medical evidence. My son now lives with me but only minimally supervises me and does the driving. An examiner at Social Security took it upon himself to send out an investigative unit because he felt I must be faking Alz even though in the course of the application and reconsideration, I saw 5 doctors, 4 of whom thought I had Alz disease and 1 CE examiner who thought it was possible but hesitated because I still have average intelligence (my IQ was in the 140s when I was in graduate school and now around 100, which I think this is an alarming decline). This SAA evaluator then proceeded to imply that all the doctors I saw were fooled. He even sent out an investigative unit to actually videotape me without my knowledge (following me to one my CE appointment one day and sending undercover police officers to my home the following day). I don't remember the investigators coming to my home and didn't see them at the hospital (obviously quite good at the stealth part). At the hospital, the doctor walked me out to the lobby because he was afraid I would get lost said a few minutes later I "disappeared (I got my ride, of course)." They went back to the doctor looking for me, and he apparently was very concerned I had actually gotten lost in the hospital. At my house, they said I walked slow to answer the door but I didn't limp (???) and was polite and had my hair combed (implying I was not disabled based on my outward appearance and probably less than 30 seconds of conversation). The evaluator felt that anyone who could describe their symptoms on an application, write mostly coherently, (though always needing multiple edits, spell check, and entailing a lot of repetitiveness) answer the door, use a phone, live alone, or drive in the early stages had to be faking it regardless of MRI, neurological tests, etc., that clearly gave me a diagnosis of EOAD. Long-winded, I'm sorry. I'm still feeling kind of abused and outraged. As for now, my lawyer thinks he can get me a hearing OTR and I'm hoping for that and a favorable decision If not, it will be another 12-15 months before I have a hearing date, this because the SSA evaluator apparently does not understand that earlystage Alzheimer's is not immediately visible on the surface. In the meantime, I am now in the process of selling my home to live with my adult son as we can no longer afford the upkeep (this is a modest home -- but now far above my means).

I'm very lucky that my son is living with me to help, but it means I do not qualify for Medicaid because his income is now considered my income and puts us just above the income limit. He can't put me on his insurance as I don't qualify as a dependent because of my small LTD policy, which in turn needs to be repaid to the insurance company if I do get SSDI. I've gone from a single, self-supporting middle class woman, to lower middle class, now to poverty level in the course of about 4 years. Without my son's help, I'm probably within 3 months of living on the street. At the same time, I'm suddenly placing a tremendous burden on him and fouling up his goals in life.

Another note: I find it ironic that my neurologist tells me to exercise vigorously, take care of my health, and socialize as much as possible in order to function longer whereas I sense the government is telling me that I'm not eligible for disability insurance (despite working since age 13 and paying into the system for years) unless I give up, lie in bed, and wait to die.

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It would be great if the Alz Assoc could find a way to educate the SSA evaluators on what Alzheimer's disease looks like in younger people in the early stages so that other people don't go through what I'm going through now. It would also be great if they could lobby for earlier Medicare benefits (rather than the 2 year wait after SSDI) for all disabilities that are only going to deteriorate.

Once we have a diagnosis, we should all be entitled to the same level of benefits no matter what our age is. One should not be impacted by other laws that were not designed or intended for those living with this type of disease. There are many state and federal programs that limit us from being able to contribute to or benefits we are not entitled to because of our age. Family savings should not be wiped out just because one has dementia. A family should have a cap on what they must payout. Why should the surviving spouse be left penniless because their partner was sick? Is it enough that most of us have already had to deal with financial hardship we were not accustom to? Pa. Caregiver Support Program: care recipient/household income must be @ 200% of poverty or below for max. reimbursement.

Below are just of a few of the ways this disease is costing me more money than ever:

I once did most things around the house and now I have to rely on others and the cost is adding up very quickly. Many things are becoming neglected which will have a greater cost in the long run. I used to be good at comparison-shopping and now I no longer do it because I cannot recall the price so I can compare. This has such a huge impact from food, gas, utilities and everyday items.

Furthermore, under the Patient Protection and Affordable Care Act (PPACA), individuals with a pre-existing condition receiving SSDI can join high-risk insurance pools and receive immediate health insurance coverage while they wait for Medicare benefits to become available. This has been particularly helpful for those who are unable to find affordable health insurance because of their Alzheimer's diagnosis In addition to the cost of care, Alzheimer's imposes an immense burden on families. Last year, there were an estimated 671,000 unpaid dementia caregivers in Pennsylvania, providing 765 million hours of unpaid care valued at over $9.3 billion. Unfortunately, the physical toll of caring for Alzheimer's also resulted in over $472 million in additional healthcare costs to unpaid caregivers in your state. To assist those who care for people with Alzheimer's in Pennsylvania, the state offers the Pennsylvania Caregiver Support Program. Preference is given to caregivers of care recipients who are 60 years or older, but eligibility was recently expanded to include care recipients who are 18 years or older. All care recipients must demonstrate functional limitation and financial need.

Regrettably, age is still a barrier to other support programs for individuals with younger-onset Alzheimer's and their caregivers. All caregiver support programs that receive funding under Title III of the Older Americans Act require care recipients to be at least 60 years or older. Likewise, Pennsylvania's Medicaid 60+ waiver and aging block grants are only available to those who are at least 60 years old. Restricting eligibility by age, rather than diagnosis, forces many families affected by younger-onset Alzheimer's to exhaust their own resources and put their own health and financial security at risk.

Health providers and institutions must change in many ways to make it better for those impacted. Physician education -- Doctors need to be better educated, and need to commit to a more timely diagnosis so that patients can collect the benefits they deserve and are entitled. Doctors should not act like our lives are over. Once a diagnosis is made it should automatically trigger a referral to a psychologist or psychiatrist so the person can learn to deal with the devastating news. Many people are in denial and waste that last few years not knowing what to do. Instead they should be living life to the fullest. Make the memories. We must be encouraged to make living wills and put our financials in order quickly since our minds are going. We have no time to delay. Encourage participation in medical trails and offer frequent checkups.

Living wills should be very different for those with AD. While this is a taboo subject we should have the right to end our life in a dignified way. We must talk about these issues. We must encourage research and provide funding. In order to eradicate this disease we need to find more sources of funding and redistribute current government funding to bring Alzheimer's to a level comparable to other disease research. Trials need to provide more flexibility by using technology. Many are unable to participate due to lack of flexibility. Some people do not participate in clinical trials because they feel it will not help them. They need to know that it's not about them but what they do can help someone in their family should they get the disease. Since a cure may be long in coming, it would also be nice to see more funding provided to investigate treatment methods to maintain independent function longer. The drug companies have taken the stage and it's all about what increases their profit and not necessarily about what will help the patients.

Make government grant programs free, fair and balanced -- Some researchers using government research grants are discriminating by age and minorities because of rules being set forth by both the provider and the receiving researcher. This will prevent the formation of an accurate picture of this disease. For example, black people are twice as likely to get Alzheimer's. Why?

Eliminate the term Caregiver - Come up with a new term for the word caregiver when used for people in the following stages

  1. Very mild decline
  2. Mild decline
  3. Moderate decline.

We find it very demeaning and do not like being treated like a child. Help us where we are weak, but don't give up on us just because we have now been labeled with Alzheimer's.

BUILDING COALITIONS

We need a way to break down many of the silos and build a coalition of companies and sites to work as one. Leaders Engaged on Alzheimer's Disease (LEAD) is a diverse and growing national coalition of member organizations including patient advocacy and voluntary health non-profits, philanthropies and foundations, trade and professional associations, academic research and clinical institutions, and biotechnology and pharmaceutical companies. The only sad part is the Alzheimer's Association National has not joined due to not being able to set politics aside. Another example while it is early in the development is Dementia Friendly America (DFA). It is only this way that we will be able to address the issues. Government or one company cannot do this alone.

http://www.leadcoalition.org/
http://www.dfamerica.org/

This is all part of the problem - a lack of willingness to work together. I am not sure what the state can do here but we need to find a way to encourage others to work in harmony for the greater good of what we all seem to claim. We are doing this for dementia. Sometimes I really wonder and I think it's just a business for these folks.

I know I have made many recommendations around the use of the Alzheimer Association as part of this document. Because of that I want to give full disclosure. I was a past ESAG member and an ambassador for them. For those who know me they would tell you I am not influenced by others and my dedication is to those impacted by the disease. With that being said I do feel they deserve a lot of credit for what they have accomplished in the last 30 or more years. They take a lot of heat for some issues that are out of their control due to some high level expectation of the public.

On the other hand I do not want you to think that they have all the answers because I and many others realize that they do not do justice for many like me who are dealing with the disease. They focus on the caregiver and not us. Part of the problem in my eyes is the lack of a business-mind across the board, and lack of a CEO approach to business. Because of that scenario there is much inconsistency in the organization and much time is lost in understanding our needs and minds. That all leads to very slow response or lack of response to the very services they think are great. They have this internal mindset that everything has to be done a specific way and that is always the right way, yet the people are not given the tools. The sad truth- it is not and I have worked on changing some of that and I can assure you it's not an easy task. I encourage that we continue to work with them but at the same time we need to demand change and at a much faster pace. As I update this version today they are in the process of doing exactly what I had recommended back in 2012. I do believe over time this will benefit all of us. I also think it will be painful along the way. We need to keep the best practices from the chapters that do good and make those programs standard at all chapters. For example my local chapter does not include people with dementia on its board unless they also contribute 10,000 dollars, yet others don't ask for money. I also believe top management should not grow. They should also focus on what is important for the people living with dementia instead of being focused on their financials or do anything controversial. The mission should and must be focused on those impacted by the disease.

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I am sharing this with you in hope that, as you do your planning, you take my findings in to account when making recommendations to others. We must treat all people who are living with dementia, regardless of stage, with the highest level of respect all the way through to the end. While this may not apply to all, it would appear that many who are even in stage seven are still able to communicate in some way.

ADDITIONAL LETTERS & ARTICLES

RECOMMENDATIONS TO ENHANCE CLINICAL TRIALS

TO: Pharmaceutical Executives
FROM: M. Ellenbogen - Advocate & Person living with young-onset Dementia
RE: RECOMMENDATIONS TO ENHANCE CLINICAL TRIAL ENGAGEMENT

I have always had a different view of things than most people, which led to business success and meaningful contributions to many organizations throughout my life. I know that important issues must be addressed by top-level executives. I appreciated good suggestions from clients and acted on them when I saw the benefits. That is my goal with these recommendations to you. Most can be done with little or no added cost while enhancing participation and accuracy in clinical testing:

Development through Collaboration
Bringing a new drug to market has become very challenging for many reasons that you are aware of. Considering that Dementia, including Alzheimer's is the third leading cause of death in the US your companies need to step up to the plate collaboratively to deal with this national and global societal epidemic.

While I understand you cannot do it alone there is no reason why you cannot partner with others in your arena. Identify ways others have already tested to stop wasted duplication. Concentrate efforts together and share the profits in the end. With the access of technology today we must really change our ways of how we do business. A clear database must be established on all failures. This will be a huge cost saving to all in the world. The price of creating it would pay for itself in no time if all contributed to such a project.

National Registry
A national registry of people living with dementia should be created and shared for all dementia-related clinical trials. This should be a collaborative effort by all companies and entities engaged in clinical trials. Consider incentives to get people to register.

Reposition the Benefit of Clinical Trials
A major problem is getting people into clinical trials. Trials are often described as "the possibility of a cure with no guarantee or access to the drug at a later date". Most caregivers and patients feel that it makes no sense to go into these trials. Most say it is hopeless for the patient and not worth doing.

I believe you need to say that participation today may lead to future benefits for their spouse or other family members that may be impacted by this disease in the future. Everything learned today will lead to success for the future and will be able to help others who may never have to walk in our shoes. Consider how compelling this approach would be to caregivers who are often the influencers or primary decision makers.

Reduce Involvement of and Impact on Caregiver
A major barrier to participation is the added burden on already-overstressed family caregivers who cannot afford to take extra time away from their jobs to accompany their loved one to additional and unnecessary visits for trial sign-up and appointments. Many caregivers are afraid they will be fired or lose pay for taking off so much time; these unspoken fears are a significant invisible barrier to participation!

Don't Diminish the "Personhood" of Potential Participants
An important barrier to participation is the tendency to treat the person living with dementia as incompetent. "We are still capable of doing many things on our own and should be treated with the same respect and dignity given to other adults."

Use Technology for Sign-up Flexibility
New tools like Skype, Zoom should be used to simplify the sign-up process by using a computer or tablet. Create a simple disk that takes care of all the steps to insure the technology is not an issue for the user. I had setup an appointment to volunteer for a program. I received a call that I would not be able to attend if I did not have a caregiver with me. The reason they need the person is so that they can complete a short survey and complete some paper work. All this should be done remotely.

Cost Factor
I believe the cost for participating needs to be covered 100 % as soon as they enroll. Some cannot afford any delay as they are struggling already. The average family is hurting financially due to this disease. People should not lose money because they are trying to do something good. Most likely what they are doing will not help them but the benefits gained could be priceless to others. Keep in mind that they are offering their bodies and being in a clinical trial is very stressful to them and their family.

Changes in Neurological testing
I believe information collected from Neurological testing is flawed because they always use the same words. There should be 3 or 4 different card sets that are alternated throughout the process. You especially do not want to use the standard ones I use with my regular doctor because I have them memorized.

Valid Self-Reporting is a Major Problem
I understand the need to get a list of side effects or issues that may be impacted by your trial. When we come in for a visit, the doctor asks us if there are any issues to report. We are struggling to remember what we ate a few hours ago and they expect us to know what issues accrued. This is not like other clinical trials because it is extremely hard for us to give you accurate information. It may even be wrong information that we believe is true. You need to consider how valid this approach is.

Partner with organizations that do not charge any fees for service
I heard a doctor speak about the NACC program stressing their need for volunteers, so I wanted to help. The program was subsidized by government grants and Pharma. After sending in my records it was determined I would have to pay for a doctor's visit just to get into the program. If this is a government sponsored grant with some of my taxes and others who are no longer able to afford the cost, why do the good people who support these programs have to pay? Especially when one wants to volunteer his time and body to help the program.

Because of these fees, I feel that the results may be skewed because the only people who can participate are the ones who have money, which tends to be high-functioning people. Where this hospital was located has a much higher population of African Americans and Hispanics. I believe they may have a better chance of holding the answer to the cure since they are more likely to get it.

Make it more personal
Since participants are meeting with a doctor, give them feedback on noticeable changes in their condition. We really do want to know where we are in our capabilities. We should not be treated like someone with a number. Make it a bit more personalized; give out a mug or other small gift. Just do a little; it will go a long way.

Provide Comfort & Engagement
Many times one needs to go for testing and stay for hours to be monitored. Provide something meaningful for them to do while they are there; TV, tablets, videos, etc.

Testing schedule
In my case I need to see 3 service providers (eye doctor, MRI and dermatologist) every 3 months; and they are in different locations. If it were up to the office they would schedule all on different days. They should schedule all for the same day so you can go from place to place with time in between appointments. With better coordination and planning that should be able to be done. This needs to be in your request to doctors to follow as part of protocol. There should still be the option to go to only one each time. Need to have flexibility.

Transportation
Many people who have dementia are no longer capable of driving or even taking public transportation to get to these appointments. Contracting with local transportation for participants would be most helpful.

While I know there are limits on your part to talk to me directly, I do welcome that opportunity. Please feel free to reach out to me. As a consumer and patient I believe I have a different viewpoint. I can also appreciate your side from the business world. I don't have a long time so please contact me soo n.

LIVING LIFE WITH ALZHEIMER'S DISEASE

Below are some articles I have written in the past, you may learn how someone with AD is dealing with this disease. These are my favorite that I feel people have been able to learn and see another side that they did not know before.

I have worked on this for about five months, and recently I shared the email below with many sites related to AD for feedback. Most of those who had reached out to me were able to support my findings. The bottom line is that while most of us have limited thinking capacity many are able to communicate; we just have to find a way that suits the individual. I received a lot of feedback. My biggest concern is that most people are clueless, and assume that we cannot understand what they are saying about us; many say cruel things. Just try to imagine for a minute what it would be like to hear what others may say or do to you, and you are never given an opportunity to defend or express yourself. That is what is happening to most of these folks.

We must find a better way to educate caregivers, health professionals, and all those working with people living with this disease. The biggest problem I see is that everything is time-based because of the costs. This view will not work for people. It will also take special training, and the need to break with our normal habits of communicating. If we are going to be able to reach out to them, we need to change. We are still human beings and we deserve to be treated in a respectful and dignified manner.

My name is Michael Ellenbogen and I have been living with AD much longer than most people who have had this devastating disease. I am in need of your help to prove a point. Let me explain.

I have learned that as we progress with Alzheimer's/dementia, we lose our brain functioning and can no longer think. I am starting to believe that this is not true.

It has now happened to me on multiple occasions where I was asked a question, and I am able to formulate the answer in my mind, yet I found myself unable to verbalize it. Sometimes my mouth may move but nothing comes out. It was the weirdest thing, and I could not understand why it was happening to me. I was aware of what was going on, but could do nothing.

Since that time I have asked 18 other people with some type of dementia, and of them 16 had similar experiences. Two of them said they had not. This makes me think that as this disease progresses our brain may still be functioning, yet it is unable to communicate with the rest of the body, allowing it to have less control than it would normally have. I truly believe I am on to something, and was curious as to how I can try to prove this theory.

Let me give you an example. About three years ago I met the daughter of a man with AD. He was no longer communicating with her because, she was sure, he could no longer communicate at all. Someone suggested she ask a question, and keep totally silent for at least two minutes after. About a minute and a half later he finally responded to her question. From that time on she realized what she had to do and was thankful for that advice.

I don't want you to think it's going to be that easy; it will take a lot of work, patience and persistence on your part. Here is what I would like others to try for someone who is in the late stages of Alzheimer's. First of all take the person to a very quiet room; it should not have any kind of background noise even from things like an air-conditioner blowing. Those noises are real problems for me, and would assume it will be a bigger issue for them. Such noises really have an impact on my ability to process and focus. You should also do this at a time of day that they are not tired. It becomes very challenging for us to try to focus and listen to what others say. It really becomes tiring, and we get burned out quickly.

When you start to speak to the person use short sentences, and pause in between them so they have time to process what you are saying. That is very important. Tell them that you think you have found a way to communicate with them. Tell them you are going to look at them closely for some sort of sign. It could be an eye movement, maybe looking to the right or left or down or up. It could be a smile. It could be a finger moving or a fist being made. It may even be them sticking their tongue out. I would start by focusing on parts of the body that may still show signs of control. You must become a detective and keep looking at various body parts for some sign. It may not happen the first time or even a second time. It may never happen and I could be wrong. But if I am right just think of the benefits that will come out of this for you and your loved one.

Reassure them that you will continue to look for a signal and they should keep trying the best they can at their speed. Ask them a simple question like "do you love me? If yes lift your finger or lower your finger". Again you will need to keep quiet, and observe for at least two minutes. Keep doing this and try this with different parts of the body. They may not have control over certain parts, and that may be an issue. If you do see something make sure you point that out to them and ask them to do it again to insure they really are responding. If this turns out to work find a way to use that same body part to get yes or no responses from the person. Keep in mind that this may not always work and you may need to be creative. Maybe just keep the finger raised longer if they mean no, or tap it twice etc., but that may be too much to ask.

Also keep in mind if the person has not had any real dialogue with someone for a long time this would also take more time. No matter what do not become discouraged, try this at least three different times on different days. Like I said this may never work and I have it wrong. If this does work please reply to this site with your contact information so I can speak to you. If this works for a few it makes me believe that we need to treat these folks completely different to the way society treats them today. This will change so much about what people really believe is happening to our minds.

Tips for Visiting by Laura Bowley, Director, Mindset Centre for Living with Dementia

On the heels of a much-publicized plea from Alan Beamer--a gentleman in the USA with Alzheimer's disease--for his friends to visit him, Michael Ellenbogen and six other people with dementia participated in a meeting to discuss barriers to visiting people with dementia. The discussion took place via Zoom video conferencing and was recorded with the participants' permission. A portion of the taped discussion was turned into a short video to let Mr. Beamer that he was not alone, that most people with dementia experience a drop-off in friends, and that the stigma of dementia affected them too.

All participants agreed that friends not visiting is--as one participant said--"epidemic." As an example, Kelly talked about his own brother, who also has Alzheimer's disease. He has been pushed out of a Board he sat on, and the decline that has taken place since has noticeable.

Michael said he could relate to Mr. Beamer's situation and found it heart-breaking. He suggested that society adapt to conversing with people with dementia by not speaking as quickly or by not using long sentences; be conscious of when one is "rambling" when speaking with someone with dementia. People with dementia spend a lot of time processing what is being said, and Michael suggested that the other people involved in the conversation could use short sentences and leave up to a 90-second response time for the person with dementia to digest the information and formulate a response. Michael felt that while it's important to educate people about allowing time for a response, it is equally, if not more important, to educate people with dementia that it's OK to be in these situations where they might not always speak coherently and require extra time, rather than choosing to shy away from conversations.

When asked if it's easy for people to sit through 90-second gaps in conversation, everyone agreed that it's a very difficult thing! We are primed to jump into a conversation and we look for the cue of silence to speak. It's very hard to break this habit.

Michael pointed out that a 90-second gap is a guideline, but someone in the earlier stages may not need as long, while others may need more time as the disease progresses. Michael said that he easily loses his train of thought and gets lost in a conversation if the others do not pause and be silent until he catches up.

The group talked about ways to facilitate a conversation, recognizing the need for gaps.

Susan noted that the topic of conversation during a visit with a person with dementia can be anything that one used to talk about; topics don't necessarily need to change with a diagnosis. For example, Susan said she can still talk about big topics, such as climate change. She continued by saying that

activities help create a common ground and again, can be anything the friends enjoyed previously, including listening to music, playing instruments, going for walks, puzzles, and games adapted to the person with dementia's changing abilities. These activities are appropriate "pretty far into the progression."

Jan talked about being in a group of people and the challenges for a person with dementia of participating in the conversation. If the conversation begins to go on without the person with dementia, as tends to happen, how will the others in the group know when the person with dementia has something to say? One would expect the onus to be on the others in the group to be mindful of the person with dementia, but Jan pointed out that it's also the responsibility of the person with dementia to take the initiative to ask to return to a topic. While this might be difficult for a person whose symptoms include apathy, it's interesting that we need to make room for a person with dementia to take that initiative, to allow that person the freedom to take responsibility by not stigmatizing him or her as someone incapable of taking responsibility, and that a person can feel so stigmatized that they themselves feel incapable of taking that responsibility. As Michael said, part of the problem may be that some people with dementia self-impose limitations; they choose not to go where it's noisy, for example.

Susan noted that there's no "one size fits all" solution for inclusion in a conversation because each relationship is different. She talked about one idea for navigating a conversation where periods of silence are required: a talking stick. Only the person holding the talking stick may speak and a person can give up the talking stick if he or she has nothing to say. But this can only be done with people who are open to using this system. Basically, the person speaking need only give some clue that he or she needs time, but the onus is on that person to express the need and the signal to be given. The talking stick can act as that signal, but our job in society is to make it OK for people to express their needs and to talk about what works. Susan says she doesn't mind silence; one can learn to be silent.

On the opposite spectrum, Michael said that in board meetings he is given permission to interrupt because the others know he would lose his train of thought otherwise.

As a whole, the group admitted to being very aware of forgetting the words for things -- the nouns! Teresa talked about the stress she puts on herself when she goes out and can't remember the correct names for items, so she's better at home where an environment has been created where it doesn't matter if she substitutes the wrong words. But when she is out, she is acutely aware of how others may perceive her if she uses the wrong word. Chuck said that having dementia can affect one's ego--how one thinks he or she is perceived by others. People with dementia don't want to be seen as "the village idiot."

Teresa says that people need to walk in her shoes--to use her brain for an hour--and then people might understand how hard it is and how hard she tries. People with dementia know their limitations and the need to get others to recognize their limitations. As Teresa says, "If I had no arms or legs, you'd see that and you'd know how to help. You can't see my disability, so it's on us to try and let people know how they can help."

As an example, Teresa decided to let a neighbour know that she has dementia She asked the neighbour if the flag on their house was left up all year, as she was planning on using it to orient herself to the location of her own home. She told her neighbour that she has dementia, and since then, if he sees her out walking or on a run, he'll stop his car and roll down the window to check with her that she's OK.

The Realities of Alzheimer's and Overcoming Stigma

Alzheimer's disease and other forms of dementia affect more than 35 million people worldwide today. An astonishing fact that today someone in the world develops dementia every 4 seconds. By the middle of the century more than 115 million people will be affected by the disease, if we do nothing.

My name is Michael Ellenbogen, and I am living with Alzheimer's and trying to make a difference. I was previously a high-level manager in the telecommunication industry. In 2008, I was diagnosed with younger-onset Alzheimer's disease (YOAD) after struggling to get a diagnosis since my first symptoms at age 39. Losing my job and not being able to work had a huge impact on my life as I was a workaholic. I am now an Alzheimer's advocate and a spokesperson for the Alzheimer's Association (U.S.) as a member of its national 2012 Early-Stage Advisory Group.

I am so frustrated, because no one realizes how seriously disabled I am. If I had a loss of limb or some other visual ailment, it would make people realize. I don't want them to feel sorry for me or pity me, just want to be understood. So many people say you do not seem to have Alzheimer's, and that frustrates me. Let me tell you what it's like to live with this debilitating and progressive disease.

Imagine for one minute that your friend, relative or family member has Alzheimer's and has to deal with the following issues. When I go shopping and look at items, most of them never really register in my mind, even though I see it clearly. I have trouble making decisions, because I question whether I am making the right one. I can no longer enjoy my favorite hobbies, because it requires processing skills that I no longer have. I went from being a gadget person, to now being threatened by technology that I no longer can use. This is what I deal with and so much more.

I go to a happy affair only to be tortured by the noise and surrounding conversations, because of the loudness that cannot be filtered out. If people try to speak with me in a public setting where there are many other conversations, I just don't understand what they are saying. This is because all of the people speaking come in at the same volume level. All the words run together, and it sounds like a foreign language.

I went from being extremely proactive to becoming much less active and motivated. I leave things around the house and don't put them away, because I don't know where they go or feel I may not know where to retrieve them again. One moment I am nice and another I may fly off the handle. I can no longer write or speak like I used to. My friends slowly become distant and usually speak to my wife. I do realize this.

I worry every day about the challenges ahead. Or even worse, I am losing my mind and see it happening, but I cannot do anything to change the course. People always say "if I can do anything just let me know." If I take them up on that offer, they back out of their commitments. I have become extremely surprised by the lack of public commitment to my pleas for support of Alzheimer's disease. While some may be sympathetic in the moment, there appears to be little follow-through. This is very upsetting, because I feel as though it affects me personally as well as the millions of others living with the disease. I was always there for others when they needed it and now I feel alone.

While many people just coast through the day, I have to use 110% of my processing skills to do most things, which increases the stress and frustration. The worst part about this disease is knowing that I am doing all these things wrong and have no way to control or stop it, and it's only getting worse as the days go by. I used to save lots of money by doing so many things around the house. Now I lost the drive, determination and skills needed to do those things. Many times I hurt myself trying or make it worse.

I cannot begin to explain how it tears me up inside to see my spouse struggling to do the things that I once was capable of doing and know I cannot do a thing to help. I realize that one day I may no longer be able to drive and this devastates me. I see my wife becoming stressed, depressed and overwhelmed, but caregivers know it will only continue to get worse. Sadly, they keep telling themselves that they can do it all even when we know they will need help.

I, the patient, see it definitely. My wife is on the road to hell, and she does not even realize it yet, because she is so busy trying to block it all out. The worst part about all this is, I have not even reached the worst stage. That scares the hell out of me.

I have been so surprised by the stigma associated with this disease. It comes at you from all angles. People think they know what Alzheimer's is, but they don't. I see this not only from people living with dementia but many media health correspondents, physicians and organizations that are geared to helping those deal with the disease. I have learned that I do not want to share my diagnosis with people I meet until they get to know me. If I was to tell them upfront, I would be treated so differently, which I have learned. I kind of see this disease like HIV used to be. The people who have it are so afraid to let others know, including family. I do not get it. We did nothing wrong to get this disease, and we need to speak up to let our voices be heard. We did nothing wrong and no one should be ashamed of having it. I feel so much better when I share it with others than when I try to hide it.

Because of my frustration with the existing environment for people with dementia, I realized change was need. I decided to use my few skills left to advocate. I have spent some of my last few years being on television, radio, newspapers, many blogs and working with many politicians. I also had an opportunity to speak at all of the public sessions to develop the first U.S. National Alzheimer's Plan, all this on my own. But that was not enough, because I ran into so many people who just did not want to get involved. I was a volunteer for the national Alzheimer's Association Early-Stage Advisory Group. If there is something I want you to walk away with it's that you can make a difference, but it will take persistence. Write a letter to your public official or reach out to local support organizations to create needed programs and services. Your voice and your story are powerful tools. Please get involved.

The simple truth is, if you have not been touched by this devastating and debilitating disease yet, consider yourself extremely lucky. Sadly, it's just a matter of time before it touches you. It is my hope that my actions today may prevent future generations from suffering with this disease. So give yourself piece of mind and do something today. I hope that what I am doing will allow me to leave this world knowing that I did everything possible to make that next generation have a fighting chance. There are no excuses for not wanting to help. The human cost factor is too high, and we are all accountable to do something.

There are many organizations out there like ADI and the Alzheimer's Association that can help you. The Alzheimer's Association got me started in many ways with my new journey. It not only helped me, but it also had helped my wife as my caregiver. They have a website with many resources at http://www.alz.org. I encourage you to reach out today if you have not already. I would also encourage you to educate yourself.

Please join me and Go Purple on Sept. 21 for World Alzheimer's Month. I wear a purple Alzheimer's bracelet every day. And for those living with Alzheimer's, stop focusing on what you cannot do and join me in the battle to advocate. We still have so much to give, and we need to use our skills at our own speed. There is nothing to be ashamed of. We are counting on all of you.

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Over the past few years I have visited many websites that talk about Alzheimer's/dementia. The one thing that they all have in common is that not one of them encourages those of us who have the disease to continue to live and enjoy our lives. While I realize AD is a progressive and devastating disease we are still here, we are still alive, so treat us that way. Do not write us off.

I have always been savvy when it comes to finances and have always been a saver. One day I was speaking to a friend of mine who has AD, and I was telling her how I did not want to spend a lot of the money I had saved, because I wanted to leave it for my wife for that rainy day. My friend told me: "This is the rainy day. What are you waiting for?" She was right, and that's exactly how I started to think.

Just because we are living with AD, does not mean we should curl up and think our life is over before it actually is. There is so much more we can still do to enjoy life. Make wonderful memories with your loved ones before the days turn ugly.

One thing I had always wanted was to own a convertible, so we purchased one. I wanted to drive it down to the Keys in Florida. I have a friend out in California who also has AD. She has an RV and had planned to travel around the country before she declined and was incapable of driving anymore. One day she mentioned that she was going to the Keys and I decided to meet up with her. I also wanted to go deep-sea fishing to catch a big game fish. Don't get me wrong I am not person who goes fishing, but it was something I have always wanted to do. I had looked into it and it was very pricy, but it has always been on my bucket list. I think we all have a list if we stop and think about it.

I had no real plans; I just wanted to go out and drive my convertible, to feel the fresh air and admire the beautiful scenery and enjoy nice weather. I had a great time. I had a permanent smile on my face. I decided to stay with my friend in the RV for a week and visit various campgrounds along the way. That was a whole new experience, and some of the places we stayed at had fabulous views.

It was great to be out on our own, not having to rely on caregivers all the time. We had some difficulties, but we were able to manage on our own. It cost me a few extra dollars along the way because when I purchased something I could not remember the price in order to be able to compare, and sometimes I took the wrong road and had to take the turnpike, but these were minor issues. This road trip made me feel so much better about me. It was good for my mind; I came back stronger because of what I had achieved.

This disease has a way of making you feel like you are no longer cable of doing things on your own. You lose your self-esteem and your self-confidence. After this trip I felt great.

I did have to opportunity to go fishing. It was such a beautiful day with perfect conditions. The fish were not really biting to begin with but it didn't matter I was just happy to be on a boat again. Then I caught a fish that was about 10-12 inches long. Then I caught a barracuda that was at least 18 inches long, and then one over two feet long. Not to long after that I got the big one, a king macro that was 42 inches long! You should have seen the smile on my face. It is memories like this that we need to be making.

My friend in the RV has decided that she will not just use her mother's china and silverware on special occasions. Instead she took them with her in the RV. It gives her pleasure to use them every day. How many of you have a wonderful expensive hand bag or nice watch, which you only use on a special occasion?

Life is short; take pleasure in using those treasured items now. Start to create your own bucket list, don't just write it, DO IT! There are many wonderful memories that you can still make. Make them now before it's too late. Stop focusing on the negative. Make these last few years be the best of your life. You must do this now, before your mind no longer works.

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Since being diagnosed with Young Onset Alzheimer's Disease I have dedicated much of my time to its advocacy. Over the years I have worked with many people in different parts of the world, and through my experience I have come to realize that a major problem in reaching a cure is our actions. The way we treat not only those who have this disease but those who care for them, the focus on funding and research and the lack of communication and collective action. Although there are many brilliant people who are involved in Alzheimer's and Dementia action and research I feel that following some simple principals and plans we could bring about real change in the world of these diseases.

PARTICIPATION -- Patients, caregivers, family and friends must become advocates

FUNDING -- Unprecedented action from government and public sector is vital

TEAM WORK -- Organizations dedicated to fighting the cause must work together to reach a shared goal

RESEARCH -- It is imperative that professional medical research personnel work hand-in-hand with patients

LIVE -- Those with the disease must learn to live happy and fulfilling lives

PARTICIPATION -- The government wants to hear from us! I have been doing this a long time and I am told over and over again by government officials that they need to have a clear idea of the numbers of people with Alzheimer's so they can make the appropriate changes to policy etc. In order for the government to do something they need to see people with the disease. I know people have busy lives but if we want things to change, patients, caregivers and friends need to start taking action.

How can you help? By getting involved! Write to the people who can help -- government, health officials, and the press. But be mindful that you have to be persistent with these people, you have to fight. Can you imagine the impact if even a small percentage of the millions of people with dementia took a little time to have their say?

FUNDING -- We must look at other funding models for this disease. Unlike HIV and cancer, there are no survivors. Patients will continue to place a massive financial burden on the national economy; we need to be more proactive in how we fund research, care, medication and support for loved ones and caregivers.

How can you help? By writing to Congress, and the National Institute of Health. These people are responsible for prioritizing the distribution of funds to critical diseases -- Alzheimer's disease is not on the list; we need it on the list.

TEAM WORK -- There are many organizations out there hosting their individual fund raising programs, which is to be commended but the downside to this is that they still insist on operating independently on one another. These people need to see the bigger picture, they need to set aside their politics and differences, and come together as one and work together -- after all, they share the same goal don't they?

How can you help? Well we can stop complaining about these organizations and give them solutions and guidance. Together we have the power to bring about change. Keep informed of all the latest news and action, don't listen to gossip or rumor -- check the facts; do your homework.

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My name is Michael Ellenbogen. I am living with Alzheimer's disease. I spend almost every waking hour advocating for increased funding for research that will improve the treatment of this dreadful disease. In 2008, at the age of 49, I was diagnosed with Alzheimer's disease after struggling to get a diagnosis since my first symptoms began at age 39. There are more than five million Americans now suffering from this devastating disease.

The National Institutes of Health (NIH) funds research into critical and devastating diseases such as cancer and HIV/Aids. Yet there is much neglect and discrimination regarding the allocation of funds for research into Alzheimer's and related dementias. As a person who experiences the devastating impact of Alzheimer's disease every day I hope that research will lead eventually to postponing the onset or slow the progression of this disease, if not prevention and cure.

Currently, Alzheimer's disease only receives about $450 million for research from NIH, compared to more than $5 billion for cancer and more than $3 billion for HIV/AIDS. I am astonished at the lack of funding dedicated to addressing the number one health epidemic. Historically, leadership from the federal government has helped lower the number of deaths from major diseases such as HIV/AIDS, heart disease, stroke and many types of cancers. This past experience provides hope that increased efforts directed at Alzheimer's disease will be met with similar success.

There are many more Americans living with Alzheimer's than HIV; more funding is desperately needed. If we do not act now this disease has the potential to bankrupt this country. Money allocated today will have an enormous return on investment if it leads to the kind of successes obtained for other diseases.

If you have not yet been touched by this devastating and debilitating disease it's just a matter of time. I hope that my advocacy will help prevent future generations having to suffer my fate and that of many others. You can help by increasing NIH funding for research on Alzheimer's disease and other dementias.

I appeal to members of the House of Representatives, the Senate and the respective appropriations committees: Make the hard choices; increase funding for Alzheimer's disease. Do everything necessary to ensure that Alzheimer's disease gets the exposure, commitment and funding necessary to change the course of the disease before millions more Americans are affected.

My work as an advocate has provided opportunities to share my story on a national platform. I have provided public comment during meetings of the Advisory Council on Alzheimer's Research, Care and Services in addition to having my personal essay about overcoming the stigma of the disease featured in the Alzheimer's disease World Report 2012. I have also become a member of the Alzheimer's Association National Early-Stage Advisory Group, helping to raise awareness of the disease and provide insights on the most appropriate programs and services for individuals in the early stage of Alzheimer's and other dementias.

I hope that what I am doing now will allow me to leave this world knowing that I have done everything possible to make generations to come have a fighting chance. Do not forget these people or the future generations who will develop this disease. We face dying in the worst possible way.

As an Alzheimer's patient, I find it very difficult to perform tasks that I was once very capable of performing. Sometimes I am better than other times at doing the same task. People around me have accepted this fact and have tried to be very forgiving when I run into issues doing a task or when just trying to remember something. I really think that people around me should challenge me more at times.

For example, many of my doctors kept questioning me about whether or not I should still be driving. This of course was mentioned to my wife who also started wondering. I finally had a driving test a few years later. It was recommended that I no longer drive, even though I passed the test. I was almost borderline, but there was concern that I may not recognize when I become worse and could then become a danger. First of all, I have to tell you that the test they performed was not fair. I wonder how many regular people would be able to pass this test. The test also relied on me to learn new things in order to take the test. That is not fair since I have been driving the same vehicle all this time and nothing has changed. This constant talk about my driving has totally killed all of my self-esteem about driving. Every time I was in the car on the road with my wife, she constantly pointed out any mistakes I made, and her reaction time was much quicker than mine. I do realize I am a bit slower in my response time, but that is why I give myself more space between the other cars. Sometimes I am very far back or I just don't want to go around that slow car. There is nothing wrong with not feeling comfortable to go around that person. Let me do it at my speed.

I see many people on the road that I feel are so much worse than me and I wonder why they are still on the road, if I am supposedly so bad. I decided that I was going to drive to visit my daughter in South Carolina. I live in Jamison, PA in Bucks County. I was very scared to take this trip but I was trying to prove something to myself. It could have meant the end of my driving if I made a serious mistake along the way. I drove in one day, about 700 miles, with the help of a GPS in my car. The more I drove, the more I was starting to feel comfortable behind the wheel. A few other people on the road made serious mistakes along the way and I easily avoided a possible accident. This trip was the best thing I could have done for myself. I now have almost all of my self-confidence back and my wife no longer makes constant comments about my driving, unless I have a real issue. I have now had two close calls that required quick thinking and maneuvering to avoid an accident. In both cases, I was able to avoid the issues without my wife's comments. Again it may have taken me an extra second or two to react, but I was fine.

WHO'S THE THIEF

Who's the thief? Is there a thief? Why do we say that?

I have read so many stories about people living with dementia accusing their assistant -- I don't like the term caregiver -- of stealing their belongings. As a person with dementia I was hoping I would never become one of those people because I knew it could be very hurtful to those around me. However, as I continue to decline into this black hole that is Alzheimer's disease, I find myself trying to analyze these things to see if there is any truth to them or whether it is simply a misunderstanding. I am an ideal person to look at this issue as not only am I living with dementia but I am still able to share my thoughts on what may or may not be happening.

In the past year or so I have become very accusatory of my assistant/wife when I have not been able to locate something. In my mind I know I had put something in a certain location and it was no longer there. Most of the time it turned out that I was right and my wife had moved it somewhere else, so only she could locate it. I have also been told that I over react and am too quick to blame. That may be true; however, I am not sure why I cannot hold back those emotions and have more control. But the fact is I don't and it is not going to get better, it is more likely get worse as I see myself transforming into something I don't want to become.

Today I woke up and we had snow, so I needed to clear the driveway and footpath. When I went to the place where I keep my boots they were not there. As I searched in various places I kept saying to my wife that she had done something with them. She was helping me look and telling me she had not moved them. I just could not believe that I was unable to locate them. Then I seemed to remember that they may have had some cracks in them.

Although neither my wife nor I was able to find them I was not thinking that someone stole them, even though we'd had had many workers in the house in the last year and these are really great boots. Then all of a sudden I remembered that the manufacturer had sent me another pair. This made it more interesting because now I could not find TWO pairs of boots that are about 18 inches high and therefore not easy to misplace.

My wife kept insisting that she did not know where they were, and now I am beginning to think that they could have possibly been stolen especially since one pair had never been worn. But then I was thinking that maybe I threw one pair out and I am only looking for the new pair. This went on for a while as we both continued to search the house, which in itself has become a disaster zone from the way all of my items have been moved around. I finally convinced myself that they were stolen as there seemed no other explanation and I was not even sure how many pairs we were looking for.

I decided to give up and accept that they were gone and put on another pair of work boots that, although not designed for snow, would do the job. My wife continued to search all of her locations only to come up empty. Then she had an idea and went upstairs and promptly came down with two pair of boots, telling me that if I had put them away in the first place she would not have had to find a place for them. The mystery of the missing boots was over.

Although I was glad they hadn't been stolen, it was much easier to accept them as being stolen so I could justify why I was unable to find them. However, in my mind I blamed my wife since she was ultimately the reason I couldn't find them.

This disease really sucks in so many ways. I don't have a clear vision in my mind of things, just minute spots of memories. And I do mean a spots. I need to be able to magnify the spot in order to make sense of it but I am no longer able to do that. I no longer have groups of thoughts that I can make sense of, instead I have flashes of memories, which may be completely irrelevant to what is going on at that moment.

The only way I can describe it is the way a film works. To make a complete film you need hundreds of still shots per second to build up the picture on screen. Every once in a while I may have one still shot that lacks clarity and meaning before having it fade to nothing in a matter of seconds. So before you think the person with dementia is going crazy you should probably ask yourself if you or someone else moved it or got rid of it. There is something positive to be taken from a situation such as this: at least the person with dementia is still capable of thought; no matter how fragmented.

COPING STRATEGIES FOR DAILY CHALLENGES

Because of this situation, I feel even stronger than ever that it is important to be challenged. I know it may be easier for you to do something for an Alzheimer's patient because it's much quicker for you to accomplish the task. But I really believe that if you take the time to coach us along the way, we may do better in the long run. Believe me, I know it's got to be very aggravating at times, but I really appreciate it. It takes a lot of patience on the part of the helper. Everyone is different and you need to know at what point in time you should not push. It's also hard to be patient and not raise your voice at the person you are trying to help, because it will only make it worse.

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Daily Challenge: I have trouble remembering dates or things I need to do.

Coping Strategy: I use my computer and Microsoft Outlook to keep me straight by sending me reminders.

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Daily Challenge: Getting email using regular places like Google or Yahoo is a challenge for me.

Coping Strategy: My daughter had set up my Outlook to retrieve emails from all my accounts, and they arrive in the same format which makes it so much easier to read, and it allows me to use common folders.

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Daily Challenge: I forget to reply back to people's emails.

Coping Strategy: I flag them with a reminder date so it will automatically send me a reminder.

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Daily Challenge: Remembering passwords is a real challenge for me.

Coping Strategy: I have created a personal system that works great, I also rely on the computer to store many of them; however, it is a real challenge when the system does not work. I also keep files with the password information.

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Daily Challenge: I have trouble remembering the day, the month and the year.

Coping Strategy: I have a watch that displays all the information.

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Daily Challenge: I have an extremely complex TV, stereo and entertainment system, which requires many remotes and settings to be used.

Coping Strategy: I purchased a smart remote that allows me to put in all the steps at once, and press one button which takes care of sending all the commands to all the devices at once. It works great until it fails. Not sure how much longer I can maintain it. It's a bit involved

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Daily Challenge: Most of my lawn power tools are a struggle to use.

Coping Strategy: I do not think I have any coping method other then I keep trying different things until I get them to work. The problem is most are new, I find it easier to work with tools I am familiar with.

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Daily Challenge: When I drive I don't always feel as comfortable behind the wheel.

Coping Strategy: I sometimes need to take more precautions, and allow more distance between the car in front of me, and I may drive a little slower. I am also much more alert and focused during these times. It makes it hard because when I travel with my wife she wonders why all of sudden I drive slower, when normally I am flying. There is nothing wrong with going slower and being cautious.

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Daily Challenge: I don't do much of anything anymore.

Coping Strategy: The other day I was speaking with my neighbor who was waxing his car. This gave me some inspiration to want to do it. When people mention things to me it sometimes gives me what I need to take it to the next level.

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Daily Challenge: I purchased a camera; however, no matter how many times I read the manual I still don't seem to be able to understand how to use it.

Coping Strategy: Make sure you buy one that works completely automatic without needing to do anything. It is frustrating at times when you would like to do something on your own but just can't remember on how to do it. I have learned to accept it but I still try and fail.

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Daily Challenge: Spelling and forming sentences has become a real challenge.

Coping Strategy: I take advantage of using the computer to guide me in the correct spelling of a word. That is becoming harder because often it cannot figure out what I am trying to say. I also ask others to look things over for me, and to correct them for me. It's kind of frustrating for me because I am really concerned that I may not be able to do this much longer. I have seen a big decline in this over the years. I seem to notice this more than my other skills because I do it so often. While I am sometimes ashamed of sharing it with others, I still need to communicate so I try to not think about it.

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Daily Challenge: Sometimes when I want to do certain things I need to stop and think.

Coping Strategy: If I want to work on a project I will spend a lot of extra time trying to think of the best approach, this doesn't always help, but I tend to work at a slightly slower pace and am aware that things will go wrong.

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Daily Challenge: Finding past emails or letters

Coping Strategy: The computer is such a wonderful tool in so many ways. It allows me to search the entire computer as long as I can remember a word or two in the document I am looking for. While it may take a while I would not be able to survive without it.

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Daily Challenge: I can no longer do many things

Coping Strategy: I rely on my wife for many things nowadays. I am not sure if that is a coping strategy. When anything important needs to be considered, I ask her for her help. She does all the financials, and planning of most things. It is frustrating but I realize I cannot do it on my own.

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Daily Challenge: I get lost or cannot figure out how to get from one place to another. Maps are not easy to follow anymore even the ones that you print out from Google.

Coping Strategy: GPS! I cannot imagine what it was like for people like me before GPS and the computer.

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Daily Challenge: I fear that one day I will be lost or not be able to communicate with others due to a temporary stress or decline in my mental capacity.

Coping Strategy: I have chosen to not be concerned about that. I have a medical tag on me all the time that has my medical condition along with important contact information. I will continue to go wherever I want to go. I realize I will need to rely on others to get there. I will need to ask others for help frequently, and to ask multiple times so others don't send me down the wrong path. It will take me longer to get there, but I cannot let that stop me. Living in fear is also no way to live. I know there are good people that will help me when the time comes.

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Daily Challenge : Some things I do get me very frustrated

Coping Strategy: I no longer try to do those things so I do not get frustrated

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Daily Challenge: I write notes as reminders

Coping Strategy: I only write a few notes as if I have too many they just become overwhelming, and I would lose track of them because there are too many.

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Daily Challenge : I need more time to do things

Coping Strategy: I leave much earlier for meetings and places so I can allow for issues along the way.

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Daily Challenge: If I start to get frustrated doing something.

Coping Strategy: I move on to something else and then I try to come back and do it later.

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Daily Challenge: I fear I may get lost when I go to new and far places.

Coping Strategy: I take a cell phone with me.

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Daily Challenge: When I go shopping and lose track of the person I am with I sometimes start to worry a little bit.

Coping Strategy: I try to calm myself down and look for them. If I cannot find them I will try to stay by the door we came in so I can see them at that register

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Daily Challenge: I had trouble remembering which way to turn off the water in the garage for the hose.

Coping Strategy: My wife added masking tape with a marking pointing to off. No more issues. I have the feeling that over time I will need many reminders like this.

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Daily Challenge: I have trouble hearing people speak in loud places.

Coping Strategy: I try to not go to restaurants or other places where I will be put in that situation if I can help it.

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Daily Challenge: I can no longer use my video recorder.

Coping Strategy: I now have TiVo which makes it so much easier to do things. I still need some help, and my wife can help when I need it.

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Daily Challenge: I try to communicate with much smarter people.

Coping Strategy: I believe that my reaching out to and working with people who are very smart will delay the deterioration process.

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Daily Challenge: When I cut the grass, or do something that requires me to be a bit more stable on my feet.

Coping Strategy: I use a good pair of shoes, or even a low cut boot. It really helps me become more stable on my feet.

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Daily Challenge: I could get hurt while doing yard work.

Coping Strategy: I do not wear lose clothes or short sleeved clothes when doing yard work so I do not get hurt. Wearing shorts has already led to a broken foot because the pants leg got caught on the shifter. I also wear safety glasses. The problem I have is I don't always remember to take these precautions, or sometimes I think it's not necessary because I feel I will be careful if I am doing something that will just take a few minutes.

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Daily Challenge: Just the other day I was thinking in my head that I had to turn a grate on my fireplace, and I was thinking it may be hot.

Coping Strategy: Instead of being careful and just putting one finger closely to feel for heat, I just tried to touch it with three fingers to lift -- I got burned. How do you get a coping strategy for becoming stupid? It seems that my mind is not communicating with the rest of my body.

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ADDITIONAL COPING STRATEGIES:

All the people around me know I have AD, so most of them are keeping an extra eye out on me which is nice to know.

I try to keep some type of a schedule. I get up every day at the same time and try to eat at the same time. This kind of helps to do things like taking my drugs or other things. The second I change my routine you can be sure I will forget to take my drugs or do something else.

I double and triple check myself on many things I do.

I try to find some humor in my issues.

I ask people for help and ask a lot more questions of others

I take lots of breaks

I try to know my limits and will not start a task if I feel I cannot do it. Or I will have someone work with me.

A few months ago one of my friends mentioned that I am always talking about things related to Alzheimer's. While I know I spend my days advocating for this disease I did not realize I was that bad. Especially with those I am not trying to convince or influence. Although I appreciate the person telling me, it has really bothered me.

I started to give it some thought and tried to understand why and what I could do to change that. Not too long after that my wife made a similar comment, and that really hit home because their comments to me were so close together.

I realized many things have contributed to this. The most important is I no longer work and I feel like I am locked in this house; I really have nothing else to do. I wish I could still be working and doing something meaningful, but unfortunately my skills required to perform those jobs are no longer there because of my Alzheimer's. I use to go to work, I used to talk with others about many different topics, not just work but everyday world issues.

I have tried to have similar conversations with people about issues in the news, and I don't always have the right information since I don't always understand it all, and only retain bits and pieces. While there was a time I was a news junkie, now I can rarely recall many of the topics or even can tie other stories together in my mind so I can speak intelligently. I have recently found myself starting discussions that go south because I start out with part of a subject, and when we delved into it deeper I was at loss for information. I felt stupid because I could no longer speak about something I once found very easy. I used to be great about talking about political issues which really requires you to know what you are talking about, but now I can barely defend my position, and I do worse for even bringing the subject up, and then I feel bad because I was not able to point out the real issues so the person could really make a true assessment.

Since I have no real job I have made it my mission to advocate for Alzheimer/dementia. I try to keep my mind as engaged as possible. I also try to focus on things that most don't, like the high hanging fruit which is probably not the best for some on like me. That involves dealing with many high-level people. While I do good at first I don't always have the answers they require, and sometimes may come across as not knowing what I am doing. It is very frustrating knowing that in my brain I have the answers, but I just do not know how to retrieve the information needed to help me do what I need to do. Especially when I need it the most, I may remember later on sometimes, but it's too late. There was a time that I could retrieve everything to my favor and keep track of everything one person would say to me.

Then I finally realized I listen to the weather report multiple times a day and I never seem to know what the weather is supposed to be like, which I always used to know. I just do not seem to retain it.

I used to like reading the paper and I no longer do that because I have trouble retaining what I read or I don't remember how the story relates to something I read a few paragraphs back in the same article.

I used to have hobbies that I can no longer do because of the disease. I used to love boating and tinkering with electronics. I can no longer do any of these things. I rarely do anything around the house because I am afraid I will make it worse.

When I have conversations with others I do not always remember what we have spoken about in the past. I always hated it when you spoke to certain people and they keep repeating the same information you had spoken about in the past. I do not want to become one of them. There are so many discussions I want to have but I just can't because the lack of my ability and more. I miss that so much. To have an intelligent conversation with someone that can reply with meaningful information, where we both walked away with some new and interesting facts would be wonderful.

I was never one to blow my own horn, but I do that today so others can see some of the steps I have made in hopes that they feel they are willing to take risks and help me expand my mission.

I have accomplished some great things and I think that is what I may share with my friends. Maybe I am repeating myself and I don't know it. I keep trying to figure out how I can change, but I struggle because I do not know what to do. It seems that Alzheimer's has taken over my life and not sure what or how to change.

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American Society for Bioethics and Humanities Speech 10.22.15

My name is Michael Ellenbogen. I am living with Young Onset Alzheimer's Disease. My first symptoms came at age 39. I was not given the diagnosis until I was 49. I'm now 57. What I have to say applies to many dementia patients--especially younger ones who may live longer.

This is a very devastating disease. Until I got this diagnosis, I wanted to live as long as possible, like almost everyone else. Now my goal is different.

I still want to live life to the fullest, but only until it is my last opportunity to control when I die. The reason is that Alzheimer's will take away my ability to control my destiny. Alzheimer's will take away my ability to remember and my ability to carry out my plan. If my plan fails, I will be forced to have a prolonged dying because others either cannot or will not allow us to die, when we would want.

So I do NOT want a prolonged dying after I reach the stage of Advanced Dementia. Here's why:

I have several illnesses that cause me pain: gastric reflux, stomach pain, and stiffness at night. When I reach Advanced Dementia, I won't be able to ask for help or for pain meds, or to fluff my pillow to get comfortable so I can enjoy life or sleep. Instead, I will feel tortured.

Dr. Terman's term, "Dementia Fear" is not just a theoretical fear. It's a real issue. I can imagine myself lying there, uncomfortable all night long. Also, my pain gets worse when I have nothing to distract me.

It is important to me to be remembered for the person I was--NOT the person I am becoming. When my daughter was interviewed on FOX, she said, "My father was always so sure of himself. He's not anymore." That really hit me hard. My current condition is so far from what it was, and it will only get worse. I really enjoyed being a high level manager and being an important part of what was going on, being creative, being a resource for others and giving people advice ...so very different from who I am now.

Furthermore, I worked hard to have an enjoyable retirement. But if I lasted to the bitter end of Advanced Dementia, all the money I have saved would be spent on me, leaving nothing for my wife. That would not buy me anything I really wanted. It would just be time without quality of life. And it would not be fair to my wife.

I used to maneuver a boat with great skill, to navigate close calls, but now I can't enjoy this hobby anymore. I used to enjoy electronics as a hobby. Now if I touch anything, it falls apart. I might even electrocute myself.

I wake up every morning and have to remind myself that someday I will need to end my life. Whenever I decide, it will probably be too soon. But I worry that I will forget to actually do it while I still can, or if I do remember...by then, I may not be capable of carrying it out.

How will I know when "my last opportunity" will come? I won't, for sure. That's why I am certain that I will be ending my life too early. Or if my attempt to hasten my death fails, it might put me in a condition that is much worse. So I just hope my timing is not MUCH too early. And I hope it works smoothly.

I know a Young Onset Alzheimer's Disease patient whose friend promised to give him enough Oxycontin to kill himself. But then the friend changed his mind because he did not want to be responsible for the Alzheimer's patient dying. I can understand that, but now what are his options?

I am afraid of ordering drugs over the Internet. They could be FAKES or just make me sick and feel worse but not kill me. There are so many scammers these days. You can't trust... Who knows what hell could happen if I were to try this way.

I had a friend named Dena, another person living with Young Onset dementia. Probably Lewy Body disease. She took her own life. While I don't know what I don't know, when she first told me about her intent to die, a few months before she did it--I was really upset. I thought her dementia was not much worse than mine. Now I still wonder if she died too early, much earlier than she had to.

I know several people who are still doing reasonably well, but who now store in their home several tanks of Helium that could bring about their death.

As I get to know man Young Onset Alzheimer's patients, I would estimate half or more think about wanting to die while they still can, because they don't want to die slowly in Advanced Dementia. While this of course is NOT a valid survey, what I've found is this: The harder I try to get people to talk, the more they reveal their fear and share their wish for a plan they could trust.

One Alzheimer's patient I know died by inhaling car fumes in his closed garage. He taped a message to the steering wheel of his car. It said, "Sorry I had to do this now, but I was afraid to wait because I might forget that this is what I want to do."

We may never know how many people, like the man who left the note on the steering wheel, who feared not being able to wait longer, will have taken their lives when they would have waited if they had another choice that they could count on.

While Dr. Stan Terman has a very good system to die somewhat earlier--to stop being fed and given liquid... and while it's probably the best out there...it is still not good enough. The problem is that 20 percent or more of us will still be able to stick food in our mouths--even after we have lost much of our other abilities and we meet most of our criteria for Advanced Dementia.

To possibly move up the time, Dr. Stan Terman asked me to try thickened nourishment. I never would have tried it, if he hadn't recommended it. So I experimented with "Thick and Easy." Doctors prescribe this product to prevent choking on food and drinks so they don't go down the wrong way since the next thing that can happen is pneumonia. But have you ever tasted it? It's horrible.even when mixed with my favorite drink. Don't ever give me that stuff.even if my life depends on it. I'd rather die by dehydration. By the way, I added this statement to my Living Will.

Along these lines, I hope physicians and others get this message: Stop thinking of what can make me live longer when I reach Advanced Dementia. Instead, follow what I say now about what I really want. Listen to me. Remember what I ask for and let me die with dignity. Please!

I am revealing myself, my diagnosis, my wishes, and I am pleading with you: Please take action to change our laws. It may surprise you but a NEW law that will let us die when we want, will save our lives. We'll live longer. It will also lower our fears so we can spend the last few years of good living without this awful worry, that our last wishes will not be carried out.

I know many patients whose wishes were NOT followed because of incompetence or unwillingness on the part of their doctors. That absolutely must change so we can have confidence... otherwise some of us will kill ourselves when we can. The laws and Doctor's beliefs should not get in the way of what's so important to us.

Many right-to-die organizations have their own ideas on how one should die. And they do not get along with other similar organizations. To them I say: It is not about you or what your organization stands for. It's about the patients you say your organization is trying to help. Break down your silos. Figure out ways to work together to reach a better solution for this horrible problem and this devastating disease.

Thank you.


 

I. Kremer  |  01-20-2016

I serve as executive director of Leaders Engaged on Alzheimer's Disease (the LEAD Coalition). The LEAD Coalition is a diverse and growing national coalition of 80 member organizations [http://www.leadcoalition.org/who-we-are/our-members/] including patient advocacy and voluntary health non-profits, philanthropies and foundations, trade and professional associations, academic research and clinical institutions, home and residential care providers, and biotechnology and pharmaceutical companies. The LEAD Coalition is co-convened by USAgainstAlzheimer's and Volunteers of America. The coalition works collaboratively to focus the nation's strategic attention on Alzheimer's disease and related dementias and to accelerate transformational progress in: detection and diagnosis; care and support to enrich quality of life; and research leading to prevention, effective treatment and eventual cure. For more information about the LEAD Coalition, please contact me.

We all celebrate and are grateful to the Congress for the nearly 60% increase in NIH dementia research funding provided in the FY 2016 omnibus spending package. We are thankful to every organization and every advocate who made this possible. But we are mindful that far more vital science remains to be funded and that we have not yet seen commensurate progress in funding care and services for those already living with dementia and for whom the scientific breakthroughs will come too late.

For the past several years, I have said during the public comment portion of Advisory Council meetings that the National Plan needed to match the aspirational and transformative 2025 goal for biomedical progress with similarly aspirational and transformative goals for clinical care and long term services and supports, building on the remarkable work done by public and private sector agencies and millions of individuals. Today, with the presentation by the Alzheimer's Association, we have reached a tipping point. I would encourage the Council to move expeditiously to invite public comment on the recommendations being presented so that the widest possible cross-section of stakeholders and experts -- especially people living with dementia and their caregivers -- have an opportunity to offer support and suggest enhancements.

Today's agenda includes discussion of the proposed "Research Summit on Care and Services for Persons with Dementia and their Families." The summit aims to advance the research, translation, and scaling of the very programs and services that will help make real for people with dementia and their caregivers many of the recommendations from the Alzheimer's Association presentation.

These are just three among many examples of the transformative power of collaboration. I would encourage the Council to schedule presentations at your upcoming 2016 quarterly meetings three other vital collaborative projects: the Dementia Friendly America Initiative [http://www.dfamerica.org/]; the Global Alzheimer's Platform [http://globalalzplatform.org/], and the Accelerating Medicines Partnership Alzheimer's Disease Initiative [https://www.nia.nih.gov/alzheimers/amp-ad].

In closing, I offer my apologies for topics I have failed to address and I offer my thanks to others making public comments addressing such omissions. I offer my appreciation to Advisory Council members and staff who give of their minds and hearts beyond what words can express. I offer my hope to all those living with dementia and their loved ones that they will be heard, heeded, and healed through the work we all do together.


 

P. Fitzgerald  |  01-20-2016

The Program of All Inclusive Care for the Elderly (PACE program) is a proven care model that provides high-quality, community-based, integrated care to some of our nation's frailest, most vulnerable citizens -- those over the age of 55 who need a nursing home level of care but seek to remain in their own homes. Studies show that people receiving care from PACE organizations live longer, in better health, with fewer hospitalizations and more time living in their homes than those receiving care through other programs. PACE is an evidence-based program in which nearly half of the people who receive care and support have been diagnosed with dementia.

As a result of the PACE Innovation Act of 2015, which was passed by Congress and signed into law on November 6, 2015, the Medicare and Medicaid programs now have the authority to pilot the PACE model with new populations including people younger than 55 and those with complex care and support needs who do not yet meet their state Medicaid agency's criteria for needing a nursing home level of care. These pilots have the potential to give people with Alzheimer's, their families and their friends access to a care option that addresses the serious gaps in our current health and long term care delivery systems. The pilots would enable PACE organizations to offer high-quality, fully-integrated care that allows people with Alzheimer's to maintain their optimal health, receive much-needed services, and live independently in the community.

Not far from where we meet today, the lives of two individuals and their families provide compelling examples of the difference access to a PACE program could make through a pilot program:

Serving People Under the Age of 55: Jim G.

Jim G. is a 54 year old Virginia resident who was diagnosed with early-onset Alzheimer's disease. Although Jim was initially enrolled in clinical trials to combat his illness, he recently ceased all treatment as his memory -- and his health -- deteriorated. Jim tried to enroll in the local PACE program, but was unable to because he was not yet 55 and therefore did not meet the program's current age eligibility requirements.

Jim was hospitalized in 2014 for a lung infection caused by "silent aspiration", which occurs when the swallowing function is weakened by Alzheimer's. A once vibrant athlete, Jim lost almost 40 lbs. Initially, Jim stayed home alone during the day, where he was isolated and struggled with activities of daily living, such as personal grooming, household chores, and child care. Karen struggled to care for Jim and tend to her school-aged children, while also holding down a full time job, but eventually had to quit her job to care for him full time. Unfortunately, Karen discovered that his needs were more than she could handle. Following a psychotic break and a week as a psychiatric inpatient, Jim was permanently placed in a memory care unit near their home. Karen had to use "crowd-sourcing" to raise funds for Jim's treatment.

This heartbreaking situation might have been avoided had Jim been able to enroll in PACE. Jim could have received day-time support that would allow him to continue to live at home with his family. He could have received therapies to help him stay physically strong, and primary care to help avoid silent aspiration and other health complications. PACE has significant experience with dementia, and might have been able to avoid or better managed his psychiatric deterioration. And Karen and her family would have received much needed respite services, emotional and social support, and peace of mind, perhaps helping her maintain her employment.

Serving People At-Risk of Nursing Home Placement: Terry B.

In testimony before the District of Columbia's Council, Terry B. described her work as an enrollment coordinator at a PACE program as "the most rewarding job I ever had in my life. I was able to help older adults and their families find a solution to some very heartbreaking issues and could substantially see the huge difference this program made in their lives -- from being totally at the bottom of despair to living a full life and thriving in their final years."

At the age of 56, Terry was diagnosed with younger onset dementia, and has now reached the point where she can no longer work. She recently completed her term as a member of the national Alzheimer's Association Early-Stage Advisory Group, helping the Association provide the most appropriate services for people living with early-stage dementia, raise awareness about early-stage issues and advocate with legislators to increase funding for research and support programs.

Terry observed that she is "not yet ready nor qualified to need the PACE program, but when I do I know they will be there for me and my family." Through a pilot program, Terry and her family would be able to access the PACE program when they determine they need its support and integrated care rather than waiting until Terry meets the state's nursing home level of care criteria. This earlier access to PACE can support Terry's continued quality of life, in a home setting that also strengthens the caregivers in her life.

Providing Access to PACE for People with Alzheimer's

The pilots made possible by PACE Innovation Act of 2015 would help Jim, Terry and others like them. These pilots would allow CMS to test and adapt the PACE model for individuals under the age of 55 and those who are not yet in need of a nursing home level of care but whose care delivery systems and supports are being strained as they strive to maintain their quality of life. Specifically, the following are benefits that this model can offer to people with Alzheimer's, their families, and policymakers seeking to improve their care options:

  • Access to team based, disability competent care for an underserved, high cost population.
  • Improved care coordination with timely and accessible primary care reducing unnecessary emergency, inpatient and long term care utilization.
  • Reduced nursing home utilization enabling nursing home eligible individuals to live independently in the community.
  • Competent, consistent and quality attendant care services for activities of daily living.
  • Social network of care with innovative physical and virtual day programs to enhance independence and employability.
  • Extensive use of adapted technologies -- computing, telehealth, social networking, environmental controls, mobility -- to increase independence, provide enhanced abilities at reduced cost.
  • Significant savings to Medicaid and Medicare -- payments to PACE programs are less than Medicaid would pay for a comparable population in its other programs and PACE provides savings to the Medicare program.
  • Relocation of individuals from nursing homes into community settings by partnering with state and local housing organizations to fund development of accessible, affordable and safe housing.

By supporting pilots that allow for PACE to serve younger people with Alzheimer's and those who are struggling to live in their own homes, the Advisory Council can be assured that they are supporting a proven, cost-effective care model that will help achieve the goals of better care coordination, and higher quality of life.

Thank you for the opportunity to address the Council on these important matters.


 

S. Peschin  |  01-20-2016

I serve as president and CEO of the Alliance for Aging Research. Thank you for the opportunity to provide a public comment. I have two issues I want to cover today.

The first issue is President Obama's forthcoming FY 2017 budget, which I realize is already baked and will be released February 8, but I am putting in one last push for the record. The $350 million Congressional boost for FY 16 was much appreciated, but we need upward momentum and we need this Administration to make its last swing at bat big and bold. Our ask for FY 2017 is a $500 million increase over FY 2016 enacted funding for aging research across the NIH; and a minimum increase of an additional $400 million in Alzheimer's disease research at NIH over the FY 2016 enacted level.

The second issue is related to healthcare-associated infections, which the CDC estimates kill 380,000 residents in nursing homes, skilled nursing facilities, and assisted living facilities annually. I am talking about infections at the NAPA meeting because 1) nearly 2/3 of Medicare nursing home residents have Alzheimer's disease and other dementias and 2) because antibiotic-resistant, deadly types of diarrheal infections such as C. diff are skyrocketing in nursing home settings and they are a lousy way to die.

CMS included changes in infection prevention and control in nursing homes and skilled nursing facilities as part of its larger proposed "mega rule" to improve overall quality and safety. Unfortunately, the proposed rule on infections is too broad to make much of an impact. Without mandates for specific rules on antibiotic stewardship, infection surveillance, prevention, and control, many otherwise preventable infection-related illnesses and deaths will continue unabated.

Up to 70% of nursing home residents receive one or more courses of systemic antibiotics in a given year, yet studies show that anywhere from 40% to 75% of these antibiotics may be unnecessary or inappropriate. Harms from antibiotic overuse significantly threaten the health of nursing home residents. Yet, in its proposed rule, CMS gives no guidance about how facilities should perform antibiotic stewardship. CMS should mandate the CDC's evidence-based "Core Elements of Antibiotic Stewardship for Nursing Homes." This program would also provide state surveyors with guidelines to help them monitor effectiveness.

Another concern about the proposed rule is the lack of instruction for staff on how to conduct infection surveillance. Currently, all CMS-certified nursing facilities use the Minimum Data Set (MDS) for collecting information on infections that impact longer-stay residents. However, the MDS offers data only quarterly, it does not capture multiple infections, timing of infections, or any data on short-stay residents admitted from the hospital setting for rehabilitation.

For the last several years, 17,000 hospitals and other acute care settings have used the CDC's National Health Safety Network (NHSN) surveillance system to keep track of infections. CDC research shows that when healthcare facilities, care teams, and individual practitioners recognize infection problems and implement specific steps for preventing them certain infection rates can decrease by more than 70%. Nursing homes and skilled nursing facilities should be required by CMS to adopt the NHSN system for their infection surveillance.

Last, CMS should mandate all nursing home and skilled nursing facility staff who work directly with residents to get an annual flu vaccine. This one is a no-brainer--please do it.

CMS has a chance to prevent suffering for people with Alzheimer's disease and related dementias. As physician and author Atul Gawande writes, "Sometimes we can offer a cure, sometimes only a salve, sometimes not even that. But whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person's life. When we forget that, the suffering we inflict can be barbaric. When we remember it the good we do can be breathtaking."


 

M. Ellenbogen  |  01-19-2016

I have noted that there are two representatives for all non-federal NAPA Advisory Council categories. That is EXCEPT for what many perceive as the most informed category - 'persons living with dementia.' As a person who is living with dementia, I find this discriminatory and problematic. I've brought it up to many here including top management. Your lack of action contributes to the stigma we must deal with.

I have made multiple requests to dial in. At the last meeting you finally agreed to look into it. I asked this time and was denied. I protest this decision as you have effectively shut out my voice.

(READER: Don't say any anything for 30 seconds)

I do hope you make the proper allowances as per the recommendations of the ADA. A government agency said you must provide reasonable accommodations for me. That is all I ask for.


 

J. Lyons  |  01-19-2016

I am an author and care consultant who helps older adults find the care they need throughout the country. Most of my clients have some form of dementia.

For the past few years, I have attended the Advisory Council meetings. I've been intrigued and impressed by the process of coordinating among various government agencies - including State, Local, and Federal partners. I look forward to the next phase of the Plan, which will include additional programs to provide practical solutions for people with dementia and their caregivers. Below are some sample actions that would provide support to the continued development of such programs:

  1. Establish additional public/private sector partnerships to develop practical, implementable plans and solutions for people with dementia and their caregivers. This includes addressing medical, financial, legal, practical, family/caregiver, and housing needs.
  2. Expand the scope of public/private sector partnerships to include more private sector companies and caregiver organizations that have "boots on the ground" and provide care and support to people with dementia and/or their caregivers.
  3. Continue to identify and work with industry experts and thought leaders.
  4. Create an educated consumer base through developing and disseminating accurate and culturally sensitive education, training, and support materials.
  5. Identify and partner with programs that help to keep the caregivers healthy -- including cognitive and emotional health.

The above suggestions reflect my understanding that identifying and providing practical solutions requires multi-sector participation and coordination. I would be pleased to provide additional information as requested.


 

R. Louie  |  01-12-2016

You may have seen this, and I had tried sending it directly to L. Elam and Dr. R. Petersen, but this OpEd about appointing as Alz czar was published in the Seattle Times 12/30/15. M. Marquez on the NAPA Advisory Council, Sen. P. Murray and Sen. M. Cantwell, along with Rep. J. McDermott (all from my state of WA) have all been emailed the link, too.

http://www.seattletimes.com/opinion/appoint-an-alzheimers-czar-and-treat-it-like-aids-or-cancer/


 

W. Lum  |  01-07-2016

Alzheimer's disease and related dementias are a growing concern within the Asian American and Pacific Islander (AAPI) community. Age is considered the greatest risk factor for Alzheimer's disease and AAPI women have the highest life expectancy (85.8 years) of any ethnic group.i Barriers that prevent the early diagnosis and timely interventions and care of Alzheimer's disease and related dementias among AAPIs include: cultural beliefs and language, lack of awareness that contributes to stigma, and limited accessible and culturally proficient services.ii Further, many AAPI older immigrants may feel discouraged to access aging and healthcare services (including screening for dementia) for several reasons: unfamiliarity with medical practices, having to locate interpreters, and the fear of miscommunication that may lead to misdiagnosis and improper treatment.iii Language and cultural barriers prevent them from full participation to the U.S. healthcare system, and studies have shown that "linguistic discordance," or miscommunication between patients and practitioners, is an implication of health outcomes and quality of care.iv

The National Asian Pacific Center on Aging (NAPCA), which preserves and promotes the dignity, well-being, and quality of life of AAPIs as they age, respectfully requests that the Advisory Council on Alzheimer's Research, Care, and Services dedicate a council meeting to discuss (1) the effects of dementia on and (2) how to outreach to AAPI and other diverse communities.

Raising awareness of the impact of Alzheimer"s disease and related dementias on AAPI and other diverse communities is an important first step to ensure that AAPI elders and their families, regardless of language, cultural, economic, or other barriers, will have access to and equity in the service, benefits, and programs that are available to all American seniors. Thank you for considering this request.

  1. Administration on Aging. Serving Asian and Pacific Islander families. Home and Community-based services for people with dementia and their caregivers. http://www.aoa.acl.gov/AoA_Programs/HPW/Alz_Grants/docs/Toolkit5_AsianPacificIslanders.pdf
  2. Alzheimer's Association of Los Angeles Riverside and San Bernardino Counties. Asian and Pacific Islander Dementia Care Network Project. Phase 1 Focus Group Report. http://www.alz.org/national/documents/C_EDU-APIDementiaCare.pdf
  3. Clough, J., Lee, S., Chae, D., Barriers to health care among Asian immigrants in the US: A traditional Review.http://muse.jhu.edu/journals/journal_of_health_care_for_the_poor_and_underserved/v024/24.1.clough.html
  4. Ibid.

 


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