Public Comment Index for the National Alzheimer's Project Act . 2018 Comments

05/02/2018

MAY 2018 COMMENTS

W. Rapkin  |  05-22-2018

I am an Associate Producer with a television series that airs nationally on Public Television called "Spotlight On". "Spotlight On" has aired for over 26 years on PBS stations, as their only public awareness and education, audience monitored, 3-6 minute filler programming. We are interested in producing a show highlighting the National Alzheimer's Project Act and HHS, informing the viewers about your mission of promoting awareness, research, care, and services for those affected by Alzheimer's and related diseases. We can produce a show on any topic or initiative you think the public, caregivers, health professionals, and nursing home and long term care administrators should know about. For instance, empowering patients, families, and staff through support, communication, quality improvement programs, and care standards. We can also focus on research, detection, and innovative treatments.

As owner and underwriter of your show, the NAPA initiatives will reach millions of Public Television viewers who will learn how to contact your website for more information. In addition, you will receive master copies of the show to use and distribute, a Public Television Audience Monitoring Audit Report to track viewership and markets the show airs in (see sample reports in our media kit and on our website), and a high definition compression of the program for use on your website, on Youtube, at conferences, media events, for public outreach and awareness, partnership marketing, trade shows and exhibits, and other social media applications. Your organization would own the program to use as you wish, and we will get it aired on Public Television guaranteed in our contract. We are SAM vendor approved to provide Spotlight On programs to federal agencies. having worked with the NIH, CDC, FEMA, NASA, USDA, Administration on Aging, and DOJ.

"Spotlight On" shows are customized, informative, and interesting short programs that air in between regular broadcasts on PBS affiliates as a syndicated show. We produce programs on a wide variety of topics and subjects, and there is a one time flat production cost of $30,000. This cost includes all air time for year or more (with a minimum guarantee of 3 million viewers and 500 airings in the first three months of air time), a custom script over which you will have control of topic and content, editing, location shoots, interviews, music, and voiceover narration. Most of our programs air for years, far exceeding the minimum guaranteed viewership. If you could find a partner organization to help with the cost, they would receive everything listed in this proposal, plus credit and/or interviews in the show, and they could also use it in any way.

Please review our media kit on our website, and other information about the show at http://www.trivue.org. In them, you will find an overview of the series, shows you can watch, and a very extensive client list. You can watch shows on various topics including health, medical, and consumer awareness programs, at http://www.trivue.org/all-shows-1/. Your show would be customized according to your specifications and needs.

Let me know if there is interest in producing a "Spotlight On" show with us, if you have questions, or would like to speak. In the meantime, thanks in advance for your consideration.


 

APRIL 2018 COMMENTS

T. Buckley  |  04-23-2018

I would like to thank all the council members and support staff of the NAPA Advisory Council for your tireless efforts towards a seamless, person-centered, young onset Alzheimer's disease services and supports system that is sustainable. It is time to ensure that our commitment is turned into concerted action. The National Alzheimer's disease Advisory Committee sets out what it intends to do to help improve the lives of Americans with intellectual and developmental disabilities (I/DD) living with young onset dementia. However, radical and sustainable change will only come about through the action of persons served with I/DD living with young onset Alzheimer's disease, carers, family members, and organizations working together to challenge fragmented support and services from a myriad of providers to implement a comprehensive IDD syndrome specific person-centered young onset dementia capable system.

Outcome

Persons served with Intellectual and Developmental Disabilities (I/DD) (especially Down syndrome) living with young onset Alzheimer's disease have access to a timely, accurate, and compassionately delivered diagnosis of young onset dementia.

Problem

The Cognitive Impairment Care Planning Toolkit G0505 does not identify I/DD(especially Down syndrome) assessment tools.

I commend and applaud the Alzheimer's Association which has long advocated for Medicare reimbursement for services aimed at improving detection, diagnosis, and care planning and coordination for persons served living with Alzheimer's disease and related dementias (ADRD) and their caregivers.

G0505 provides reimbursement to physicians and other eligible billing practitioners for a clinical visit that results in a comprehensive care plan. G0505 requires a multidimensional assessment that includes cognition, function, and safety; evaluation of neuropsychiatric and behavioral symptoms; review and reconciliation of medications; and assessment of the needs of the patient's caregiver. These components are central to informing, designing, and delivering a care plan suitable for patients with cognitive impairment.

The assessment tools identified in the Cognitive Impairment Care Planning Toolkit are for detection of dementia in the general population and are not appropriate for persons served with intellectual and developmental disabilities (I/DD) (especially Down syndrome). For example, widely-used tools such as the Mini-Mental State Examination (MMSE) (Folstein & Folstein, 2001) assume the pre-morbid level of functioning to have been within the average range. There is great variability of functioning within the population of persons served with (I/DD). Comparison with 'peer-related' norms is not possible as it is with mainstream dementia assessments. Assessment of decline needs to be personalized to each person served with I/DD (especially Down syndrome) with their own unique 'baseline of functioning' being the comparison when concerns arise.

Solution

I implore the NAPA committee to create an informational "Cognitive Impairment Care Planning Toolkit (I/DD, especially Down syndrome specialized) G0505" document.

Interest from all parts of the aging, I/DD, health, behavioral, and social services spectrum abounds with mental acquisitiveness. Education, training, guidelines, standards of care, and skills acquisition are a hallmark of exceptional-quality I/DD specialized young onset dementia care. It is extremely well referenced not just in terms of guides for persons served with I/DD living with young onset dementia, but also for the British Psychological Society and the NTG who developed professional guidelines for I/DD specialized young onset person-centered dementia care. The British Psychological Society and the NTG should be proud of their publication for guidance on the assessment, diagnosis, interventions and support of persons served with I/DD who develop young onset dementia.

Recognizing the epidemic of persons served with I/DD (especially Down syndrome) living with young onset Alzheimer's disease in the community are desperately in need of I/DD specialized person-centered dementia services and supports, I have provided a summary of the incredible exceptional-quality British Psychological Society and the NTG guidance on the assessment, diagnosis, interventions and support of persons served with I/DD who develop dementia to supplement the Cognitive Impairment Care Planning Toolkit. The addition of the I/DD (especially Down syndrome) specialized Dementia assessments recommendation to health care professionals will dramatically increase both awareness and exceptional-quality of the assessment, screening, diagnosis and management of young onset dementia for persons served with I/DD (especially Down syndrome) living with young onset dementia.

Screening Tools for persons served with I/DD (especially Down syndrome)

Cognitive screening in persons served with Down syndrome or other I/DD is challenging and presents several important obstacles. Baseline cognition limits both initial and interval assessments, making the diagnosis difficult. Down syndrome is also associated with a normal-age related cognitive decline and differentiating this from dementia is equally challenging. As Alzheimer's disease often presents atypically in persons served with Down syndrome with frontal type behavioral disturbance and loss of function, onset can be overlooked or misattributed (diagnostic overshadowing).

Treatable conditions that persons served with Down syndrome are more susceptible to that can be confused with young onset dementia.

  • Poor eyesight
  • Depression
  • Poor diet -- leading to nutritional problems or anemia.
  • Recent bereavement or significant change
  • Cardiac abnormalities -- especially if undetected in earlier life
  • Osteoporosis
  • Coning of the cornea
  • Hypothyroidism
  • Sleep apnea/ lack of sleep
  • Spine disturbance
  • Side effects of medication
  • Menopause
  • Hearing loss
  • Cataracts
  • Inflammation of the cornea
  • Urinary tract infection
  • Changes in knee or hip joints
  • Diabetes
  • Compulsive disorders

     

General Principles of Cognitive Screening in Persons Served with I/DD (especially Down Syndrome)

The I/DD specialized young onset dementia care pathway for a person served with I/DD living with young onset dementia, their families and carers will involve a workforce that is extensive and diverse, including many staff closely engaged in providing I/DD specialized syndrome specific clinical care as well as offering information, support and assistance. This I/DD specialized, young onset, syndrome specific, person-centered care may be offered in a broad variety of settings including a person served own home, community settings, residential care homes and acute hospitals. Staff will:

  • be able to recognize signs of young onset dementia and be aware that these signs may be associated with other health conditions or circumstances
  • know why early diagnosis of young onset dementia is important
  • be aware of the impact of young onset dementia on persons served with I/DD, families and society
  • be able to communicate effectively and compassionately with persons served with I/DD living with young onset dementia
  • understand reasons why a person served with I/DD living with young onset dementia may exhibit signs of distress and how behaviors seen in person served with I/DD living with young onset dementia may be a means for communicating unmet needs
  • be able to signpost person served with I/DD living with young onset dementia, families and carers to young onset dementia advice, support and information.

     

Young Onset Dementia identification, assessment and diagnosis

Exceptional-quality young onset dementia diagnosis and intervention is one of the objectives identified in the "Cognitive Impairment Care Planning Toolkit." Timely diagnosis is important as it helps persons served with I/DD living with young onset dementia, carers, and family members receive information, support and treatment to improve their quality of life. The diagnosis of young onset dementia where the diagnosis is more complex is carried out by a clinician with I/DD specialist skills. However, non-specialists also have an important role in being able to recognize possible symptoms of young onset dementia, refer to I/DD specialist services and provide sympathetic and non-stigmatizing support.

I/DD specialized young onset dementia specialized professionals:

  • understand the different types of young onset dementia, the stages or variants of these diseases and their primary symptoms
  • understand how to differentiate between young onset dementia, delirium, depression and other conditions presenting with similar symptoms (hypothyroidism, polypharmacy)
  • be able to undertake a comprehensive assessment for persons served with I/DD living with young onset dementia utilizing appropriate investigations and tools
  • be able to establish a differential diagnosis of young onset dementia and the underlying disease processes, where appropriate to role
  • be aware of the potential impact of diagnostic errors
  • be able to act on the findings in partnership with persons served with I/DD living with young onset dementia and the transdisciplinary team
  • be aware of the experience of a person served with I/DD living with young onset dementia and their family and carers and be able to communicate with sensitivity about the diagnosis of young onset dementia and related implications
  • know how to enroll the person served with I/DD living with young onset dementia in post-diagnosis support services and advanced care planning
  • understand the impact of a diagnosis for younger persons served with I/DD living with young onset dementia and their families
  • understand the needs of persons served with I/DD living with young onset dementia
  • understand the importance of equal access to young onset dementia assessment and diagnosis for persons served with I/DD from diverse communities
  • be able to document assessment and diagnosis decisions

     

Symptoms that may indicate the presence of early stage dementia in persons served with Down syndrome.

  • Disorientation
  • Loss of road sense -- may be earlier than in others
  • No interest in previously enjoyed hobbies
  • Confusion for no obvious reason
  • Onset of seizures -- may occur earlier than in others
  • Will attempt tasks without being aware that they are not successful
  • Person is not aware that they forget things
  • Loss of daily living skills
  • Walking apparently aimlessly
  • New short-term memory loss
  • Deterioration in communication
  • Loss of social skills

Reasons persons served with I/DD display cognitive decline

Efficient and effective screening for persons served with I/DD living with young onset Alzheimer's disease is required to diagnose, manage and exclude reversible causes. Older persons served with Down syndrome often have significant co-morbidities (average 5.4 comorbid conditions) and it is important to manage these multiple chronic health conditions, including young onset dementia. Management of young onset dementia, including Alzheimer's disease is like the general population, requiring prompt initiation to maximize benefit and is predominantly supportive.

Older persons served with Down syndrome have a relatively high prevalence of heart disease, obesity and diabetes for their age. Conditions mimicking young onset dementia, such as thyroid disease, are also prevalent in persons served with Down syndrome and are frequently under-diagnosed. The lifetime prevalence of thyroid disease approaches 30% and hypothyroidism, is underdiagnosed. Depression, which can also mimic dementia, is common in persons served with Down syndrome and is screened for and treated.

There are several common reasons for apparent decline in functioning in persons served with I/DD. Changes in functional ability with or without behavior change are often the initial presentation of young onset dementia in persons served with I/DD (especially Down syndrome). It is important to remember, however, that some changes may be part of the normal ageing process. There are several other reasons a person served with I/DD (especially Down syndrome) may show a cognitive decline. The list below, while not exhaustive, describes the most common reasons for change in ability. It is important to recognize that two or more comorbid health conditions is common.

  1. Young Onset Dementia: The typical presentation of young onset dementia is one of gradual loss of skills along with change in personality and cognitive decline. Young onset dementia is a diagnosis of exclusion therefore, it is important to consider other conditions that may cause loss of skills and cognitive decline, especially as many of these are treatable.

  2. Physical problems include such conditions as hypothyroidism, anemia, uncontrolled epilepsy and chronic infections. Electrolyte abnormalities, hypo- or hyper-glycaemia, nutritional deficiencies particularly vitamin B12 or folate could also cause functional decline in persons served with I/DD. A thorough physical examination and relevant clinical tests are required at the time of initial assessment. These may need to be repeated from time to time as necessary.

  3. Sensory impairments: Persons served with I/DD in general and those with Down syndrome in their middle/old age specifically are likely to develop hearing and visual impairments. Visual impairment could be due to development of cataract or conditions such as keratoconusin persons served with Down syndrome. Some 60-80 per cent of persons served with Down syndrome will have hearing problems at some point in their lives. Conductive hearing deficit caused by earwax and the narrow acoustic canal is frequently seen in persons served with Down syndrome.

  4. Mental health problems: The most common differential diagnosis is depressive illness (McBrien, 2003) but other conditions such as the exacerbation of an existing psychotic disorder can mimic the presentation of young onset dementia. Severe anxiety can also cause an apparent decline in functioning.

  5. Sleep problems: Obstructive sleep apnea or other sleep disorders can cause day time drowsiness, mental slowing as well as confusion, and are particularly common in persons served with Down syndrome. Day time drowsiness and slowing could be interpreted as young onset dementia if the sleep problem is not identified.

  6. Iatrogenic (medication related) causes: Medications with anticholinergic side effects can cause cognitive impairments in elderly people and persons served with I/DD. Use of high dose psychotropic/anti-epileptic medications and multiple medications can contribute to cognitive impairment as well.

  7. Impact of life events: Persons served with I/DD in their middle age can face several life events such as loss of a parent or long-term carer, moving away from home or loss of day activities. In some persons served, the impact of life events may lead to a regressive state with apparent loss of skills. Changes in routine such as new structure to day opportunities or changes in support staff can cause profound reactions in persons served with I/DD leading to functional decline and a dementia- like presentation.

  8. Abuse: Current or recent physical, emotional or sexual abuse in persons served with I/DD may result in loss of skills and regression and the development or exacerbation of behavior problems that might superficially mimic young onset dementia.

  9. Impact of poor environment: An unsuitable environment associated with a lack of stimulation, isolation and lack of social opportunities for positive interaction can lead to loss of skills. If this is also associated with changes in support structure, where people do not know the person served with I/DD well, these changes may be attributed to young onset dementia.

  10. Acute organic brain syndrome: This may co-exist with young onset dementia or be part of the differential diagnosis. Persons served with I/DD and uncontrolled epilepsy, for example, could present with confusionalstate that may mimic dementia. Persons served with I/DD living with young onset dementia may deteriorate rapidly and develop an acute confusionalstate when they have an acute physical health problem such as a urinary tract or respiratory infection.

Observer-rated Scales

As many neuropsychological tests are not suitable or have not been validated for use in persons served with developmental ages less than five or six, a collateral history is crucial to a diagnosis of young onset dementia in persons served with I/DD, including Down syndrome. Observer-rated scales, also called informant guided questionnaires or interviews, are often preferred over direct neuropsychological testing. Observer-rated scales must however, be interpreted with caution as ageing caregivers may be developing cognitive difficulties themselves or may know the subject too well or insufficiently to be objective. Multiple informants are consulted when persons served with I/DD reside in residential care. While they include cognitive domains, they do not directly test cognition. Several observer-rated scales have been developed, each with their own strengths and weaknesses

Observer-rated Scales

  • Dementia Scale for Down Syndrome (DSDS)
  • Dementia Questionnaire for Mentally Retarded Persons (DMR)
  • The CAMDEX-DS
  • Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID)

Neuropsychological Tests

  • The Down Syndrome Mental Status Examination (DSMSE)
  • The Cambridge Cognition Examination or CAMCOG
  • The Test for Severe Impairment or TSI
  • The DAMES (Down's syndrome attention, memory, and executive function scales)

Measures of Adaptive Behavior

  • Adaptive Behavior Dementia Questionnaire (ABDQ)
  • Daily Living Skills Questionnaire (DLSQ)

The table below is a comparison of the advantages and disadvantages of different assessment instruments for persons served with Down syndrome living with dementia.

Classification Instrument Advantages Disadvantages Sensitivity for AD in Down syndrome Specificity for AD in Down syndrome Reference
Observer rated scales DSDS

Down Syndrome Dementia Scale

Comprehensive

Scores new behaviors

Measures from early to late stage

Includes differential diagnosis scale

No significant floor effect

No measure of general disability

Cut-off varies Little emphasis on change

Restrictions on use (specialized rater)

Some redundant items Lengthy (up 30 mins) administration time

89% 85% Gedye
Observer rated scales DMR

Dementia Questionnaire for Mentally Retarded Persons

Includes measure of general disability

Emphasis on memory

Orientation assessed No restrictions on use Brief administration time (15-20 mins)

Requires repeat measures over time

Behavioral disturbance questions have poor reliability

low specificity in low-moderate ID Floor effects

92% 92% Evenhuis
Observer rated scales CAMDEX-DS Includes measure of general disability

Strong emphasis on change Can be used to predict cognitive decline Excellent IRR

Diagnostic rather than a screening tool

Initially designed for the general adult population Floor effects

Lengthy administration time

88% 94% Roth et al.

Ball et al.

Observer rated scales DSQIID

Dementia Screening Questionnaire for Individuals with Intellectual Disabilities

Validated in a large sample Excellent IRR Brief administration time (10-15 mins) Single fixed cut-off may limit in advanced dementia & those with different baseline disability 92% 97% Deb et al.
Neuropsychological tests DSME

The Down Syndrome Mental Status Examination

Easy to administer Limited number of domains Over emphasis on verbal skills Poor sensitivity compared to other tests Floor effects NA NA Haxby
Neuropsychological tests CAMCOG DS Neuropsychological component of the CAMDEX Quantitative score that can be tracked longitudinally Differentiates older from younger persons with DS Limited assessment of executive function Limited generalizability to those with late dementia Initially designed for the general adult population See for CAMDEX-DS See for CAMDEX-DS Hon et al.

Ball et al.

Neuropsychological tests TSI

Test for Severe Impairment

Wide range of scores

Requires little speech No significant floor or ceiling effects Brief administration time (10 mins)

No measure of general disability

Designed for the general adult population

NA NA Albert and Cohen
Adaptive behavior tests ABDQ

Adaptive Behavior Dementia Questionnaire

Excellent accuracy (92%) Brief administration time (10 mins) Designed specifically for AD Excellent IRR Effects of variables (age, race) undetermined No assessment of cognition No measure of general disability 89% 94% Prasher et al.
Adaptive behavior tests DLSQ

Daily Living Skills Questionnaire

No significant floor effects High positive predictive value Correlates strongly with direct cognitive tests No assessment of cognition

No measure of general disability

NA NA National Institute of Ageing

Table 2: Domains included in different screening and assessments instruments for persons served with Down syndrome living with dementia.

Classification Instrument Cognition assessed Behavior assessed ADLs assessed General Disability assessment/ global assessment Reference
Observer rated scales DSDS + + + - Gedye [41]
Observer rated scales DMR + + + + Evenhuis
Observer rated scales CAMDEX-DS + + + + Roth et al.

Ball et al.

Observer rated scales DSQIID + + + - Deb et al
Neuropsychological tests DSME + - - - Haxby
Neuropsychological tests CAMCOG-DS + - - - Hon et al.

Ball et al.

Neuropsychological tests TSI + - - - Albert and Cohen
Adaptive behavior tests ABDQ - + + - Prasher et al
Adaptive behavior tests DLSQ - + + - National Institute of Ageing

 

M. Sharp  |  04-20-2018

Hello. My comments today will be brief. On behalf of AFTD I would like to thank the NAPA council, one more time, for helping to make the Research summit on dementia care and services a reality and for giving the research recommendations generated by the summit a home. I recognize the value of biomedical research but am also aware of how desperate the immediate need for better tools and strategies for care is. While I am hopeful that the work being done to develop medical treatments for these diseases will eventually yield results, I know that there is a lot we can do today to improve care and make life with dementia better.

I also want to commend the summit organizers for including people with dementia as a stakeholder group. Including the patient's voice in research on dementia care and services is critical for understanding how services can improve quality of life

Organizing and presenting the research recommendations is the first step and I look forward to this afternoon's presentation. AFTD is also looking forward to the next steps of implementing those recommendations and remain eager to help however we can.


 

M. Hogan  |  04-19-2018

Thank you for the opportunity to make a brief public statement today.

I wish to reflect on the presentation made by Dr. Randy Bateman regarding the Dominant Inherited Alzheimer's Network during the January 2018 Advisory Council meeting.

First let me say that I was profoundly touched by Dr. Bateman's presentation. The rich scientific research that is focusing on this rare condition is promising and the story that Dr. Bateman told of families most compelling.

In preparation for this statement I went back and listened to the January presentation. Dr. Bateman reflected on the desperation that families feel as they face the high probability of a diagnosis. He spoke of the concern individuals identified had for their children and the motivation to participate in clinical trials based on the incredibly high risk that future generations faced. He noted that families are an essential part of this research and conveyed a deep respect and authentic concern for the community with whom he worked.

In his presentation Dr. Bateman noted the positive outcome of bringing families together to share their experiences at the increasingly successful Family Conferences. He noted the importance of the convergence of families, researchers, doctors, government regulatory representatives and the "Pharma Guys". The video that focused on the man hoping to change the future outcome for his children was a window into their reality.

By the end of Dr. Bateman's presentation I found myself experiencing a broad range of emotions that fluctuated between profound sadness mixed with realistic optimism countered by utter consternation.

The similarities between the experiences of those with Dominantly Inherited Alzheimer's Disease and the experiences of individuals Down syndrome and their families was most striking. In the brief conversation that I had with Dr. Bateman after his presentation, he acknowledged the similarities and the effort they have made to share information and protocols with those doing research on DS.

During Dr. Hodes' introduction of Dr. Bateman, he referred to the "humanly touching consortium" and the marvelous collection of human beings impacted by this rare form of Alzheimer's disease. Though people with Down Syndrome are generally not Mothers and Fathers, they are children, brothers, sisters, aunts, uncles, cousins and beyond. They are a very similarly small group of people disproportionately impacted by a devastating form of AD at a young age. Our families experience a similar fear and sense of desperation with each passing year or with each subtle change in behavior as people age. We are grateful to the community of researchers who are focused on learning more about the onset of AD in this population and hope that one day they will discover the optimal time to intervene before brain damage and loss occurs.

Recently the National Down Syndrome Society hosted an Adult DS Summit here in Washington, DC. They included many sessions dedicated to AD in the DS population. This was a very important step in bringing individuals and families together to share their stories, challenges and reality. We are most grateful to the NDSS for hosting this event. Wouldn't it be equally as significant at some future date to bring together families, researchers, doctors, government regulatory representatives and the "Pharma Guys" to focus on this marvelous collection of human beings?

I close by saying that individuals with DS are also a touching consortium about whom I one day hope to hear in this setting.


 

MARCH 2018 COMMENTS

F. Li  |  03-26-2018

I am writing on behalf of the Physicians Committee for Responsible Medicine and our membership of more than 12,000 plysicians and more than 175,000 other medical professionals, scientists, educators, and supportive lay members. Included in this package are more than 36,000 signed petitions from Physicians Committee members and other supporters who support more funding for human-relevant research efforts for Alzheimer's disease and related dementia (AD/ADRD). We apologize that the petitions are addressed to Ron Peterson, your predecessor, because they were signed during his tenure. Nonetheless, we feel the petition is still relevant.

Despite intense research efforts to find a disease-modifying treatment for AD/ADRD over the last few decades, 99.6% of the drugs that have succeeded in preclinical animal studies ultimately ended up failing in human clinical trials. While the scientific community recognizes that animal models do not fully recapitulate the human disease, more research continues to be invested in developing and using these animal models rather than human-based approaches for disease modeling and drug testing. But animals will always have physiological differences from humans that will impede the translation of research findings derived from animal biology. Only by transitioning to human-based approaches can we overcome this translational barrier. To reach the research goal by 2025, we need to broaden out our research strategy by investing more efforts and resources on generating human-relevant data through in vitro (e.g. mini-brains in a dish, organ-on-chips), in silico (e.g. humanbrainproject.eu), and whole person based studies (e.g. population studies, lifestyle intervention trials), as we previously recommended.

Thus, we request that you ask the Advisory Council to develop and prioritize human-focused research recommendations to advance AD/ADRD research in disease modeling, preclinical testing, and the development of non-pharmacological interventions. Please reply to inform us of your plans.

ATTACHMENT:

[ON INDIVIDUAL, SINGLE-SIGNATURE SLIPS]

PETITION

To: Ronald Peterson, M.D., Ph.D., Chairperson of the Advisory Council on Alzheimer's Research, Care, and Services

I am writing to ask you to save human and animal lives by prioritizing funding for human-relevant research efforts for Alzheimer's disease and related dementia. Animal studies have not led to safe and effective treatments for this devastating disease. In vitro, computational and careful human studies have been shown to be better at predicting response and safety. Increased focus on clinical studies on diet and other lifestyle factors are badly needed. Thousands of patients, caregivers, clinicians and researchers are depending on your leadership and stepping up to engage the research community -- please make their efforts count.

-- signature --

ANSWER:

I have been informed that your letter and petitions from Physicians Committee for Responsible Medicine were delivered to the Department of Health and Human Services which was subsequently shared with me.

Thank you for your comments and devoting time and energy to the important points you raise concerning human subject research.

I need to remind you that the Advisory Council on Alzheimer's Disease and Related Disorders is an advisory body and only has authority to make yearly recommendations. To that end, we will inform the Research Subcommittee of the Advisory Council of your letter and petitions for their consideration in their deliberations of research recommendations for 2018. Also, we will share your letter with the National Institutes of Health, which funds research on dementia including animal studies.

Thank you for your continued participation in the national platform for addressing Dementia.


 

B. Bennett  |  03-13-2018

Thank you for your hard work on this subject. We are serving several million seniors in FL. I am aware that the NYUCI program is a highest-tier EBP, recognized by your offices. I am interested in finding out which, if any, interventions exist for Alzheimer's patients themselves. I was wondering if you might be able to tell me about any interventions that are close or nearly close to being recognized, or possibly refer me to someone who might be able to tell me. Here in FL there is use of IMEP, which is pretty far from being an HHS-recognized EBP, and some work was done on Mindset, from a council in FL...also far from the designation. I even searched on SAMHSA site and nothing comes up. I would really just want to know the three most common interventions used nationally. We are striving for a more robust and uniform health and wellness program across the Area Agencies of our state.

For the recommendations you made 6 years ago (below), is there progress you can tell me about?

Session 5: Nonpharmacological Interventions

  1. Integrate epidemiological studies with mechanistic research to explore underlying pathways by which risk and protective factors contribute to the disease process.
  2. Continue to identify the molecular mechanisms by which non-pharmacological interventions operate and employ systems biology approaches to examine brain health in relation to, and in concert with, other organ systems.
  3. Initiate rigorously designed clinical trials in asymptomatic and cognitively impaired older adults to establish the effectiveness of physical exercise, cognitive training, and the combination of these interventions for Alzheimer's disease treatment and prevention.
  4. Combine nonpharmacological (e.g., behavioral, lifestyle, environmental) interventions with pharmacological treatments to maximize possible therapeutic benefit. Use epidemiologic information, mechanistic research in animal models, and network analysis to inform trial design and drug selection.
  5. Develop standard outcome measures to enable data comparisons across studies. These include but are not limited to ecologically valid measures of real world function, quality of life, and physical and cognitive function.
  6. Pursue the science of behavioral change for successful implementation of effective nonpharmacological interventions.
  7. Invest in research to develop technologies that promote prevention and treatment trials, clinical care, caregiver support, and in-home monitoring.

ANSWER:

Your email was forwarded here at the National Institute on Aging (NIA) at the National Institutes of Health because a project we completed last year has direct bearing on some of your questions (others are the subject of ongoing research). We personally appreciate your reaching out to ask about the status of research in these areas. At the NIA, we recognized several years ago that we needed to take a hard look at the current research in the area of Alzheimer's disease prevention (as well as prevention of cognitive decline and mild cognitive impairment), and to try to do a really unbiased and comprehensive job of looking at the data, we engaged two independent groups. The first was the Agency for Healthcare Research and Quality (AHRQ), a sister agency to the NIH, that operates a series of Evidence-based Practice Centers (EPCs). The EPCs do highly rigorous systematic evidence reviews for a living. We also engaged the National Academies on Sciences, Engineering, and Medicine -- a highly respected non-governmental entity -- to take a look at the evidence findings that AHRQ produced, consider them in a broader context of the risk factor literature (i.e., not just randomized clinical trials), ongoing research studies, etc., and develop a set of recommendations on the topic. Several of the findings from the project are relevant to your questions below. A full list of reports and publications are listed below -- but the bottom line, after reviewing a long list of potential prevention strategies -- was this (Recommendation 1 from the National Academies' report [http://nationalacademies.org/hmd/reports/2017/preventing-cognitive-decline-and-dementia-a-way-forward.aspx]):

Recommendation 1: Communicating with the Public
When communicating with the public about what is currently known, the National Institutes of Health, the Centers for Disease Control and Prevention, and other interested organizations should make clear that positive effects of the following classes of interventions are supported by encouraging although inconclusive evidence:

  • cognitive training--a broad set of interventions, such as those aimed at enhancing reasoning, memory, and speed of processing--to delay or slow age-related cognitive decline
  • blood pressure management for people with hypertension to prevent, delay, or slow clinical Alzheimer's-type dementia
  • increased physical activity to delay or slow age-related cognitive decline

There is insufficient high-strength experimental evidence to justify a public health information campaign, per se, that would encourage the adoption of specific interventions to prevent these conditions. Nonetheless, it is appropriate for the National Institutes of Health and others to provide accurate information about the potential impact of these three intervention classes on cognitive outcomes in a place where people can access it (e.g., websites). It also is appropriate for public health practitioners and health care providers to include mention of the potential cognitive benefits of these interventions when promoting their adoption for the prevention or control of other diseases and conditions.

You can read the report for free online at https://www.nap.edu/read/24782/chapter/1.

We hope this is helpful. You may also be interested in the following additional resources:

  • NIA's Go4Life program, a public health education program focused on exercise/physical activity in older adults. If your colleagues are not aware of it, it might be worth looking into, given that we encourage exercise for other reasons, even though our recent study showed that we're not quite there in terms of being able to promote it specifically for prevention of cognitive decline/Alzheimer's. [https://go4life.nia.nih.gov/]
  • The Brain Health Resource, a presentation toolkit offering current, evidence-based information and resources to facilitate conversations with older people about brain health as we age. NIA and other Federal agencies worked together to develop this content. [https://www.nia.nih.gov/health/brain-health-resource]
  • The Centers for Disease Control and Prevention's Healthy Brain Initiative Roadmap. If you're not aware of the Healthy Brain Initiative, you might find the resources here to be useful in planning your local/state programs (and keep your eye out over the next few months for an update!). [https://www.cdc.gov/aging/healthybrain/roadmap.htm]

If you have questions, or would like more information on any of these other materials/programs, please don't hesitate to ask. We want this information shared as widely as possible (they're from your tax dollars at work, after all), so please feel free to tell others!

AHRQ-NASEM Project Reports and Publications (and related editorials)

Full AHRQ Report:

Final Report from the National Academies of Sciences, Engineering, and Medicine Report:

Academic systematic review papers from Minnesota EPC team (funded by AHRQ):

Relevant Editorials:


 

FEBRUARY 2018 COMMENTS

N. Satyadev  |  02-23-2018

I want to inform you on some updates from The Youth Movement Against Alzheimer's.

Our low-cost caregiver respite program has officially launched, and details of the program can be found at http://www.youthcaregiving.org. Within just 9 days of advertising our program, we have received application from over 30 students.

Our efforts to pass a California Care Corps Act have received a bill number: AB 2101.

I promise you, my generation cares deeply about this issue, and I hope you will continue to explore inter-generational to the care and prevention of this disease.


 

S. Dergantz  |  02-08-2018

More than 5 million Americans currently live with Alzheimer's, and that number could triple by 2050.

I'm writing you today to ask you to cosponsor the CHANGE Act. The CHANGE Act promotes timely detection and diagnosis of Alzheimer's, promotes innovative approaches to supporting family care partners and removes regulatory barriers to disease-modifying treatments. This bipartisan bill has the power to fight Alzheimer's on multiple fronts, and I urge you to cosponsor the bill.

Please do the right thing and cosponsor the CHANGE Act to help us stop Alzheimer's!


 

JANUARY 2018 COMMENTS

T. Young  |  01-26-2018

Thank you for the opportunity to address the Advisory Council. I find the work you do to be extremely important. As a researcher and caregiver for someone with dementia I have a comment regarding the research updates. I have noticed that CMS, the VA, and ACL show a wide range of projects undertaken at the various agencies. However the NIH ony presents research efforts undertaken by the NIA. I believe I've seen a few other institutes mentioned and one presentation by the NINDS. I would apriciate hearing what is happening at other agencies, like the NINR, NHLBI, and NIGMS. While I acknowledge that the NIA and NINDS oversees the majority of Alzheimer's research I would like to see more updates that include the whole NIH and to see how the institute as a whole is addressing the national plan.


 

R. Louie  |  01-23-2018

This is probably too late, and may not be appropriate for a NAPA comment, but I'm submitting it for either the NAPA meeting this week or next quarter.

REFLECTIONS: NEUROLOGY AND THE HUMANITIES

Matter of Fact

Ron Louie, MD

Her face was matter of fact when she heard the prounouncement. The neuropsychologist was her colleague; he remained professional, but slipped in some sympathy with the data, which I could not appreciate.

She didn't display a mask of depression, or Parkinson disease. Her face remained pliable, not pleased, but neither terribly pained, no exhibition of perplexity, or petulance, or surprise, a pensive look, retaining its complex grace, a quiet reserve, a solemn alertness, the beauty of humane consciousness, with no further expectations.

In her own practice, she had encountered Early Alzheimer first hand: that wonderful younger woman, whose baby she had delivered, working in accounting until the numbers became exotic, then alien; she had told me about that patient, with shock, sadness, and resignation.

But I didn't understand this. I wouldn't. It was the guy, his tests, the setting. At home, I made her try to draw a clock, count backward, recite words, and copy intersecting rectangles. She tried, this good doctor who had always bested me in calculus, organic chemistry and marriage. She wasn't angry.

So how could I be mad? She was setting the example, as she had done her whole life, her whole career, without pessimism or regret, or fanfare, just ready to go on, even though her words and steps might mutate, unpredictably, ever aware of the possible endpoints, with each of us now grappling this present moment, trying to recognize its identity.

Dedicated to IRJ, MD; suggested by Meryl Comer

Neurology® 2018;90:139. http://n.neurology.org/content/neurology/90/3/139.full.pdf


 

E. Neebe  |  01-20-2018

I would like to respectfully ask you to consider the impact of violent Alzehimer's patients in society at large.

As the population ages, this is likely to become a significant problem. Innocent neighbors of these people need to be protected.

My mother was attacked by such a patient on her own front porch on September 13, and she died of her injuries on September 14 without ever regaining consciousness.

The perpetrator lived across the street from my mother.

The perpetrator had a previous history of attacking neighbors, and a long string of complaints, but his wife kept checking him out of institutions and bringing him home.

The police and social services "did what they could," which was not much. Social services was actually instrumental in returning him to his home a month or so before he attacked and killed my mother.

His wife is a hoarder, and the conditions in their home are unlivable.

This family is not short of money.

My mother is dead...a homicide victim...but the state will not prosecute because this man has a diagnosis of Alzheimer's. His family released his medical record to protect him from prosecution.

Things have improved for the perpetrator...his family has finally put him in a private memory support unit (did they have to lie about his violence to get him in?), and his wife has gotten rid of an abusive husband whom she was likely abusing herself.

My mother is dead. My family is devastated.

As you do your work, please pay attention to the harm a violent Alzheimer's patient can do to innocent bystanders.


 

F. Li  |  01-19-2018

On behalf of the Physicians Committee for Responsible Medicine, I would like to thank all the council members and support staff of the NAPA Advisory Council for your tireless efforts towards finding solutions for Alzheimer's disease. As a nonprofit organization based in Washington, DC working to advance medical research, we support the mission and goals of the National Alzheimer's Plan and hope to provide useful insights towards finding a disease-modifying treatment for Alzheimer's disease and related dementia (AD/ADRD) by 2025.

As the research subcommittee discusses "The Journey from Targets to Treatments", we urge the Council to consider three research paradigm shifts that may help us develop a disease modifying treatment for AD/ADRD:

  1. Replacing animal models with human-relevant models: Even though animals do not develop Alzheimer's disease like humans do, scientists continue to rely on using genetically-engineered animal models for disease mechanistic studies and drug development. Even when animals are manipulated to develop the disease, it is clear that they have species-specific physiological differences that can lead scientists down the wrong therapeutic development path or impede the clinical translation of drug candidates. For instance, Parrott et al.[1] reported in Neurobiology of Aging that a Mediterranean diet worsened cognitive function in a mouse model of Alzheimer's disease even though the diet has been repeatedly demonstrated to be beneficial to humans for Alzheimer's disease. The long history of recurrent drug trial failures in humans despite successes in the animal models also strongly supports that these models are not reliable and we need to push Alzheimer's drug discovery pipelines to replace animal models with human-relevant research models and methods like human stem cell derived minibrains, patient tissues, and predictive toxicology frameworks such as adverse outcome pathways. Today, with -- omic technologies and CRISPR/CAS9 gene-editing techniques, human models have the potential to be more informative than ever before. Supporting research applying these methods to human models and developing new methods to use human-relevant models for ADRD research may help us to overcome translational barriers in ADRD research. Some investment is currently being made into 21st-century models and methods using human cells and tissues. However, we need much more investment in these areas quickly.
  2. Focusing on modifiable lifestyle risk factors as targets instead of pathological hallmarks: While amyloid and tau are well-recognized pathological hallmarks of Alzheimer's disease, they may only be observable abnormalities that result from the disease process rather than drivers of the disease process. Just as we should not focus on pathological features like cotton-wool spots as treatment targets for diabetes, we should not disproportionately invest in targeting amyloid and tau for Alzheimer's disease. The fact that there is no cognitive benefit in patients despite evidence confirming the reduction of amyloid load with candidate drugs in clinical trials suggests that amyloid and tau may not be driving the disease. Moreover, they are not very sensitive or specific biomarkers for the disease. We should consider developing treatments to modify lifestyle risk factors that may drive the disease, such as saturated fat, cholesterol, and inflammatory biomarkers. If we can learn a lesson from disease-modifying treatments in other chronic diseases, it is that treating these lifestyle risk factors is effective for modifying diseases like heart disease and diabetes.
  3. Evaluating lifestyle interventions as first-line, disease-modifying treatments: Alzheimer's disease, like other chronic disease, may be highly driven by lifestyle factors like poor diet and physical inactivity. Hence, the disease could be prevented and possibly reversed by changing lifestyle habits, as demonstrated by the successes of lifestyle modification trials like the FINGER trial. It is important to realize that lifestyle interventions like a change in dietary pattern may not only be preventative but also therapeutic, as we have found for many other chronic diseases. The concept of using "food as medicine" was proposed by Hippocrates, the Father of Medicine, and it is about time that the science catches up to his insight. We need public funding to support research in this area, as the private sector does not have a financial incentive to invest in research into these types of treatments. Lifestyle interventions offer the greatest potential to curb the course and financial burden of this disease.

As it was once said, "The definition of insanity is doing something over and over again and expecting a different result." The many failed trials in the past decades suggest that we ought to do something different. Given the unreliability of the animal models and the poor candidacy of amyloid and tau as drug targets, we recommend the Council to focus on supporting research for human-relevant models, lifestyle risk factors as targets, and non-pharmacological lifestyle interventions for the therapeutic development pipeline. These conceptual paradigm shifts may be our only promising hope to develop effective interventions to prevent or reverse AD/ADRD in our nation by 2025.

Thank you for your attention to these comments. I can be reached using the information below to answer any questions or discuss these comments further.

NOTE

  1. Parrott MD, et al. Whole-food diet worsened cognitive dysfunction in an Alzheimer's disease mouse model. Neurobiol Aging. 2015 Jan;36(1):90-9.

 

M. Sharp  |  01-19-2018

Thank you once again for this opportunity to provide input from the perspective of a "related dementia". I am the Program Manager for The Association for Frontotemporal Degeneration.

I look forward to the presentations this afternoon and hope my comments are not preemptively redundant or too off target but I would like to offer some input on drug development in FTD and let everyone know about a new funding opportunity from AFTD.

Designing studies and clinical trials in FTD is a tremendous challenge for many reasons. For starters, as a rare disease, it is hard to recruit enough participants to sample and produce statistically significant results. Also there are multiple pathologies in FTD that underlay a confusing mix of clinical presentations and symptoms. This makes it exceedingly difficult to identify clinically meaningful end-points by which to measure the effectiveness of a treatment. And that is just scratching the surfacing. Basically, the closer you look at designing trials and studies in FTD the more complexity you see. Because of the many and varied challenges AFTD's approach to maximize the success of our research efforts has been to work collaboratively with other organizations and combine resources to find creative solutions. For example The Frontotemporal Study Group is an AFTD program that brings together stakeholders from industry, academia, NIH, FDA and independent foundations who share a common interest in accelerating the development of effective treatments for FTD and related disorders. And last spring AFTD launched the FTD Disorders Registry with our partner the Bluefield Project. There are now over a thousand people registered and ready to inform pharmaceutical companies, academic researchers, regulatory and policy groups about patient-focused trial design and cultivate a collaborative environment for drug development.

Finally, I would like to let everyone know that AFTD has recently announced a new pilot grant to support the development of nonpharmacological therapies for FTD. We have recently released a request for proposals for nonpharmacological interventions and tools with the potential to have a positive impact on the quality of life for persons diagnosed and their families. It is a one year grant up to $60,000 and is open to US and international investigators. There is more information on our website and anyone who is interested is welcome to ask me for more details.


 

M. Brown-Ekeogu  |  01-19-2018

I'm 51 years old and taking care of my husband who was diagnosed with Frontal Temporal Degeneration in the spring 2017. He is slowly degressing and because we had just purchased a home a few years before his diagnosis I'm the primary caretaker and provider for the family. I live in the state of GA where I was advised we don't have any program in place or funding in place for the spouse to stay at home and care for their loved one. I have exhausted every dime I have in paying someone to be home with him most of the time I'm at work. We NEED to provide an avenue for caregivers to be compensated to stay at home with their loved ones. The stress of working and worrying about your loved one is unbearable which can cause an additional crisis in the home. My husband is only 64 and we never expected this as I'm sure no one else did. I'm crying out for myself as well as other worn caregivers for help to allow us to help our loved ones have the best life possible while fighting this dreadful disease.


 

M. Ellenbogen  |  01-19-2018

I would like to make you aware of a new trend I am starting to see in the US. This problem that has been created by the opioid crisis. I have now heard of many folks who were receiving pain medications and had dementia are starting to be declined for future pain medications renewal. New folks who need medications are not able to get them. Many people living with dementia are living in pain and are unable to express themselves. This issue has been getting worse and ran into two more families who spoke about this yesterday. Now these folks are suffering even more and this must change quickly. It was always believed to give those with dementia some pain meds to insure they were not living in pain or suffering. Now they are saying that this could lead to more confusion and possible risk of falling. So instead they prefer to cover their ass and deny those folks medications that are needed for comfort in their last few years. Can anything be done.


 

M. Hogan  |  01-19-2018

Good afternoon. Thank you for the opportunity to once again address the Council. I am a steering committee member of the NTG of which Dr. Janicki is Co-Chair. I wish to follow up on his remarks.

The NTG was formed late in 2010. Our primary goal at the time was to ensure that individuals with ID and their families were included in the National Plan to address AD and other dementias. We have been present at almost all of the meetings since the Council first met, advocating for this vulnerable group of individuals. Some of you at this table have come to expect that we will be present and vocal regarding the needs of those with ID and dementia and their caregivers and/or care partners.

We come to this table quarterly with specific requests for the population we represent. We come to minimize the isolation often experienced by individuals with ID and the continued tendency to offer parallel opportunities that are separate and not always equal.

I believe that it is important that you come to know who we are and recognize the efforts of the NTG outside of this setting. As a small grass roots organization we are focused on increasing support and improving caregiving standards for those with ID, and their families. To this end have done the following:

  • Produced an early detection-screening instrument along with a user manual (NTG-EDSD) that is now available on the NTG website in 13 languages
  • Identified and disseminated Best Practice guidelines and Community Supports guidelines
  • Created a Health practitioner assessment protocol that was published in the Mayo Clinic Proceedings
  • Provided Health Advocacy guidelines, critical for assuring improved medical care
  • Assisted CARF with national program standards for dementia care in rehabilitation facilities
  • Designed a National training curriculum-Dementia Capable Care of Adults with Intellectual Disabilities and Dementia (with Train-the-Trainer component) that has been offered across the US
  • Are partnering with colleagues in Canada on a training curriculum
  • Offer on-going training and webinars for Professionals and Family Members
  • Were instrumental in helping to organize an International Summit on ID and Dementia that was held in Glasgow, Scotland in October of 2016
  • Subsequently published articles in professional journals related to ID and dementia ( from nomenclature to end of life care)
  • Continue to meet with professional organizations to offer technical assistance
  • Explore grant based innovative programs including the exploration of telehealth and tools for dementia assessment with an electronic data storage component
  • Partner with organizations who are recipients of grants from the US Administration on Community Living to insure that their capacity to serve this population increases and standards of care improve
  • Interact with NASDDDS, NASUAD, NACDD regarding state activities
  • Present at National Conferences including the National HCBS Conference to increase awareness of the needs of those with ID and dementia and their family members
  • Represented those with ID and dementia and their caregivers at The National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers
  • Partner with The Arc, NDSS, Alzheimer's Association on trainings and publications and with NDSS and the National Alliance on Caregiving on the planning of an upcoming Adult Down Syndrome Summit to be held in Arlington, VA in April 2018

And most importantly, for me personally, is the provision of information to families and the hosting of a monthly online family support group for family members from across the US. We are now assisting other organizations that are trying to develop family support options on a more localized level. No caregiver deserves to make this journey in isolation.

As people age and are at increased risk for AD or other dementia, the demands that lie ahead are many and partnerships critical for success. The NTG wishes to reach out and support the efforts of the NAPA Council as you define your next steps. We are hopeful that you will be inclusive of all people in your future plans, that you will make a sincere effort to better understand this special population, that you will take note of our appeals and reflect on what life must be like for those who have faced a lifetime of challenges.

We, in turn, at the NTG can assure you that we will continue to remain dedicated to improving quality of life and quality of care for a population that is often undervalued and underserved and who are very often cared for by a workforce that is undervalued as well. We can and must do better.


 

M. Janicki  |  01-18-2018

I and Dr. Seth Keller are the co-chairs of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG). The NTG is an affiliate of the American Academy of Developmental Medicine and Dentistry and is associated with the Rehabilitation Research and Training Center on Developmental Disabilities and Health at the University of Illinois at Chicago (http://www.aadmd.org/ntg).

While we were recently discussing the role of the NTG with respect to the Council, it struck us that many Council members may not know why we are here and why we make comments to the Council -- and what are our 'wants'. The NTG was formed in 2010, just before the passage of the National Alzheimer's Plan Act, with a stated mission to advocate for people with intellectual disability affected by dementia and their families and other caregivers. When the NAPA Council came into being, it was opportune for us to have a voice at the national level on behalf of a critical segment of adults affected by Alzheimer's disease and other neurocognitive conditions resulting in dementia.

There are many causes of intellectual disability, some genetic, some due to disease, and some social or environmental. Among the genetic causes, Down syndrome is the one most commonly associated with dementia as adults with Down syndrome are at high risk of Alzheimer's disease and generally manifest early onset dementia. In the United States, it is generally acknowledged that although most persons with an intellectual disability are affected by dementia to the same degree as other adults in the general population, some may be affected earlier and at a greater rate.

The Alzheimer's Association estimates that currently some 5.2 million Americans are affected by dementia, many of whom have Alzheimer's disease. Of these, some 200,000 affected adults are under the age of 65. This includes adults with Down syndrome, many of who are among those 200,000 adults affected with 'early-onset dementia'. Generally, it is believed that about 6% of adults with an intellectual disability will be affected by some form of dementia after the age of 60 (with the percentage increasing with age). For adults with Down syndrome, at least 25% will be affected with dementia after age 40 and at least 50 to 70% will be affected with dementia after age 60. With respect to numbers, it has been projected that there may be at least 54,000 adults with an intellectual disability and mild cognitive impairment (MCI) or dementia in the United States, and that the number of such adults affected by dementia would most likely triple over the coming years.1 Studies have also shown that some 33,000 adults with intellectual and developmental disabilities and dementia are currently living at home with older or other family caregivers. While the number may seem modest with respect to the 5.2 million overall cited by the Alzheimer's Association, these 54,000 comprise a group with high dependencies and a high impact on caregivers, many of whom may have been providing lifelong care. They also represent adults whose needs will have an impact on national long-term care resources as they are Medicaid eligible.

With increased life expectancy and greater numbers of aging people due to the 'baby boom' effect, the number of older at-risk adults will increase significantly over the next twenty years -- as will the prevalence of dementia. The Alzheimer's Association projects that the number of older persons affected by Alzheimer's disease will to about 7.7 million by 2030. This growth also will be mirrored among older adults with an intellectual disability.

There are many similarities in needs between adults with intellectual disability affected by dementia and other adults similarly affected. Both need targeted early detection, diagnostic services, counseling, aid with planning for the future, housing assistance, care management, supports for caregivers, and other special services as dementia progresses.

There are, however, some differences as well. The NTG and other intellectual disability organizations, such as the American Association on Intellectual and Developmental Disabilities, National Down Syndrome Society and The Arc, have noted that

  • After a lifetime of coping with and adapting to a lifelong disability, dementia can have a particularly devastating impact on adults with an intellectual disability as well as on their families, friends, housemates, and services' providers who have been providing key long-term supports and care.
  • Primary care and supports for adults with an intellectual disability affected by dementia can and should be provided within the community and that appropriate services, when available, can preclude inappropriate institutional admissions.
  • State and local developmental disabilities' agencies, the primary resources of specialized services, can help by planning and budgeting for supports of in-community care of adults with an intellectual disability affected by dementia, including help for their family and other caregivers.
  • Specialized assessment and diagnostic resources are effective in identifying dementia among adults with an intellectual disability and their use should be expanded.
  • Knowledge and training in late-life problems, including dementia, of adults with an intellectual disability are often lacking among primary care health providers in community practice and this deficit can be an impediment to early detection and provision of appropriate interventions.
  • Specialized trainings instituted nationally, using workshops, webinars, and other teaching methods, can advance the knowledge and skills among health and social care workers and clinicians working with adults with an intellectual disability affected by dementia.

     

Now, to the point of why we appear before the Council. We believe that these distinctness areas deserve due consideration by the Advisory Council on Alzheimer's Research, Care, and Services and their remedies warrant inclusion in the National Plan updates -- especially as this group is one of the 'populations disproportionally affected' noted in the original National Plan.2 Further, we ask that the Council recognize that dementia has a particularly devastating impact on people with an intellectual disability and their friends, families and the staff who may be involved with them as advocates and caregivers -- and give this population and its needs due consideration in the Council's deliberations. The National Task Group believes that the federal Council should continue to include -- and expand on -- concerns and considerations for people with intellectual disabilities in its annual updates of the National Plan. To this end, the National Task Group stands ready to assist and contribute to such efforts.

NOTES

  1. '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. National Task Group on Intellectual Disabilities and Dementia Practice. (2012). http://www.aadmd.org/ntg/thinker
  2. National Plan to Address Alzheimer's Disease. US Department of Health and Human Services. (2012).

 

S. Hall  |  01-16-2018

I am a care partner and advocate. My husband has frontotemporal degeneration. I am active in the FTD community. This population is often overlooked due to their young age. Programs and services for those with FTD and their care partners are very difficult to find. Most organizations for the aged population do not offer anything for someone under the age of 65.This population is often rejected from memory care facilities due to their age and diagnosis. If they are admitted, they are often asked to leave.

There needs to be a national certification for those working in memory care so they are trained to deal with ALL dementias and ALL symptoms of all dementias. The stress on these younger families is enormous. Many still have young children at home. The cost of their care is twice that of Alzheimer's, which has been shown in a recently published AFTD financial burden study. This leaves younger families financially destitute.

Care partners of those diagnosed at a young age need real respite programs. They often have to work while hiring help at home, as their spouse has left their job and is on SSDI with a 2 year wait for Medicare, so they need to fill that gap of insurance. They work 2 full time jobs, one to keep a roof over their heads and insurance for the family, and one caring for a spouse with dementia.

We are losing too many care partners to stress and onset of stress related diseases at a much younger age. We must all remember that some related dementias are not in an aged population and make programs and services available for this community.


 

N. Satyadev  |  01-10-2018

I wanted to inform you of two projects my organization is working on that I believe are relevant to the work of this council.

Firstly, our organization was recently approved to launch our low-cost caregiver respite program in partnership with the USC Leonard Davis School of Gerontology. I plan to keep the council informed of developments with this program, but for now more information about our idea can be found here: http://www.theyouthmovement.org/#/futureOfCare.

Secondly, our organization is leading efforts to pass a California Care Corps Act, building on the framework proposed by Congresswoman Michelle Lujan-Grisham in her National Care Corps Act, which was originally introduced in the 114th Congress and is being reintroduced in the current Congress as a Demo Act. We believe that this legislation is critical to offering care solutions beyond the longstanding IHSS allocations and will help foster an inter-generational culture.

Finally, I want to take a moment to commend the work of Dementia Friendly America as their fast-paced team has been critical to advancing America towards a society in which those diagnosed with dementia feel free to participate in communal activities. Thank you for the time.


 

C. Johnson  |  01-10-2018

My husband was recently diagnosed with Frontal Temporal Dementia/Degeneration. We have gone from Dr to Dr and realize that few know or have even heard of the horrible disease that is robbing the lives of young men and women. Leaving children to grow without a parent. This disease now falls under the umbrella of Alzheimers but it is not Alzheimers.

I fear there are men and women in our prisons that have this also as it causes the afflicted to behave irrationally. Not only my husband but my now deceased brother, who happened to be one of the largest land owners in California, a highly noted architect was locked up in a horrible county psychiatric hospital because he was walking down the highway and became overly excited trying to explain to the officer he was only going home. You see he also had aphasia that is common with this disease. My brother was transported to hospital and detained on a 5150 in this horrible place until I could get to California and get his attorneys to help me get him out. In fact the hearing officer was very surprised that he had $40 million in cash at his disposal as she thought he was homeless! Homeless with a pair of $1200 Italian loafers on..I'm telling you this because we need to educate Doctors, hospitals, judges and everyone on this disease.


 

K. Brinkerhoff  |  07-07-2018

I have bvFTD, I don't think that people have an understanding that many with this dementia have a brain that tells them to keep active to walk. Nursing Homes think this means running away. So they lock them down and over medicate them to keep them from leaving. This is destructive to them trying to control a brain that tells them to walk. Instead I say why can't a walking path or the ability to take people with FTD to a walking path not made a part of a clients right. Secondly if no walking path is available have dance classes, walks around the facility or exercise machines such at treadmills or walking machines that can give these people a way to let out that pent up energy the FTD provides you with. Isn't it wonderful there is a dementia that will keep people active and healthy? This is my biggest fear being locked up and medicated in a nursing home and having to hang up my walking shoes because no one will take the time to understand my kind of dementia.

Next I personally believe there are medications out there that can target the part of the brain that is degenerating in the FTD patient. I think continue to look for a cure but if there is a medication that might stimulate that part of the brain or whatever lets find it and make it standard practice for patients with FTD. Maybe its time to find out what kind of medications FTD patients are on and see if some patients are doing better than others and if it might be a medication making the difference. I have seen what many FTD patients are on and it is different from what I am on. So I ask myself is the answer getting a fantastic neurologist over getting the right medication. So lets find a standard if there is one and I believe there is.

 


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