National Alzheimer's Project Act: Public Comments on Advisory Council Meeting, January 2019

01/28/2019

ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE, AND SERVICES

Public Comments on Advisory Council Meeting, January 2019

List of Comments

 

Comments and questions, or alerts to broken links, should be sent to napa@hhs.gov.

PLEASE NOTE: The Public Comments included here are not an endorsement of the views or information by National Alzheimer's Project Act, its Advisory Council members, the Administration or the federal agencies involved in this project.


 

D. Blackwelder  |  01-23-2019

Hello my name is Diana Blackwelder, I am 57 years old and I was diagnosed with Younger Onset Alzheimer's Disease in 2017. I would like to thank you for the opportunity to provide suggestions for ways to facilitate those of us on the Alzheimer's journey to live as independently and fully as possible based on my lived experience during the early stage of the disease. The points I will raise are what I feel are most important and relevant to this panel today. I implore you to reach out to me afterwards for further discussion as addressing these items are achievable and should yield the greatest return on investment.

For perspective, I am single, live alone, and before Alzheimer's robbed me of my professional career, I performed complex IT systems integration and software security engineering. Leveraging technology that is already in the mainstream helps significantly with my ability to remain independent, defer hiring assistance with household and financial responsibilities and also to assist with daily cognitive therapy exercises. Not everyone has my background though so providing information and assistance on how to do this would be so valuable. I and I know others that would be willing to help with this.

I have secured the counsel of an integrative/ functional medicine doctor to evaluate and modify my health in a comprehensive and balanced fashion. We have been balancing nutrition, hormones, prescriptions, supplements, exercise, meditation, speech / cognitive therapy. These are non-covered costs and requiring me to fund through my retirement savings and. These testing, supply and medical and compounded prescription costs do not apply to the maximum out of pocket limits either. This care not only maximizes my quality of life but most importantly delays my need for paid assistance with activities of daily living, or other home health care or adult day care types of services. As the saying goes, an ounce of prevention is worth a pound of cure.

On a more local note, a very beneficial service I had been availing myself of through the National Gallery of Art and Smithsonians called respectively Just Us and See Me programs for people with dementia afforded me the opportunity to remain social, served as therapy for the Alzheimer's related Aphasia, and provided cognitive stimulation in a safe and supportive environment that accommodated my disability. Unfortunately, the US Government Shutdown has indefinitely terminated this most valuable service to those of us living with dementia.

Finally, I would like to advise this comprehensive panel that services for Alzheimer's provided by the DC Office of Aging (and likely many other municipalities) are not available to me as I do not meet their age restriction. An age restriction that is arbitrary. Washington DC has no support services or support groups either free or for fee available for those of us living with dementia. There are services for the care givers but none to help the disabled person to maximize their quality of life and independence. If this was available it would directly reduce the burden on care givers.


 

M. Hogan  |  1-23-2019

Thank you for the opportunity to make this brief statement. On November 12, 2018 I was able to attend the Open Meeting of the Committee on Care Interventions for Individuals with Dementia and Their Caregivers at the National Academy of Science. The day's discussion was most interesting as the charge of shaping the draft of the systematic key questions took place.

During the afternoon session, Mary Radnofsky, Dementia Rights Advocate, had an opportunity to speak. Her comments have prompted much reflection on my part since then. Ms. Radnofsky spoke of Human Rights issues for those with dementia and the discrimination that can accompany a diagnosis. In the context of the day's discussion she noted the importance of a systematic review that was not only focused on care interventions but on support systems and accommodations that make life worth living for each person from the time of diagnosis until end of life. For people with dementia, human rights translate into access to community, accommodations, support, health and care from early symptoms to end of life.

All too often, people with dementia experience discrimination and treatment that contravenes their human rights. They are subjected to bias, ageism, stigma and discrimination. Poor care and limited support can breach the rights of people with dementia and their care partners. They can be treated in an inhuman or degrading way, be socially isolated, experience a loss of the right to respect, loss of the right to privacy, have a diminished quality of life and seem to lose the right to freedom and the power of choice.

After almost eight years since NAPA was signed into legislation, there currently remains an unacceptable variation in the quality of formal care and support provided to people with dementia and their care partners. This variation in support and care contributes to diminished human rights, significant burden on the person with the diagnosis and as well as burden on their care partners.

While in Scotland for the ID and Dementia Summit a little over two years ago we collectively spoke of human rights issues. At the same Summit, Alzheimer's Scotland presented in detail their care practices. Though Scotland is a very small country with Universal Health Care, there often is much to be learned from smaller countries that are able to implement creative practices.

Their care paradigm includes a defined one-year post diagnostic support system. There is evidence that high quality post diagnostic support, provided over an extended period, is essential in order to equip people living with dementia, their families and care partners with the tools, connections, resources and plans they need to live as well as possible with dementia and prepare for the future.

What follows is a defined Community Based Support during the moderate to severe stages of dementia. This model recognizes that excess disability is created when people with dementia do not receive appropriate care and support. Without the right care and support, there is a gap between how people actually function and how they could potentially function. The model is designed to provide each person with the best possible support so that they are able to live in their own home as long as possible.

The End of Life Pillar introduces an Advanced Dementia Specialist Team to provide optimum care and promote the wellbeing and quality of life of both the person with advanced dementia and those closest to them. It also implements essential support to care homes and those providing day-to-day care.

The provision of essential post diagnostic support, diminishment of excess disability through appropriate care and support and the promotion of well being until end of life may ensure that human rights and quality of life are maintained despite the presence of life limiting neurodegenerative diseases.

Though a myriad of organizations and institutions across the country continue to work hard to remedy the challenges faced by individuals with dementia and their care partners, the provision of support often remains fragmented across many communities. After 8+ years at this table we can and must more rapidly translate our ongoing discussion into meaningful action across all populations. Embracing and systematically implementing successful paradigms of care begets success.


 

M. Sharp  |  01-22-2019

Hello and thank you once again for this opportunity to provide input from AFTD. My name is Matt Sharp and I am the Program Manager at AFTD. I want to thank the Research Subcommittee for this morning's presentations and for taking on the subject of non-pharmacological interventions and maximizing the quality of life for people living with dementia. Without any approved drugs or medical treatments for FTD, behavioral and environmental interventions are critical tools for managing the symptoms of the disease. Maximizing quality of life is an integral part of AFTD's mission and I would like to share some information on a couple of relatively new resources we have for health professionals and people living with FTD.

First, we are very excited to announce that our inaugural non-pharmacological Therapies & Tools Pilot Grant was awarded to Lauren Massimo, Assistant Professor at the University of Pennsylvania School of Nursing. Dr. Massimo's will work with an experienced application developer to create a mobile app as an individualized intervention for apathy. The app will be designed to increase motivation, stimulate initiation of self-care and support the planning and carrying out of activities of daily living. Dr. Massimo will then carry out a 3-month pilot study of the app to evaluate its impact on apathy, activity levels, psychological functioning, cognition, quality of life, and caregiver burden. Apathy is one of the most disabling symptoms in FTD. It is estimated to occur in over 90% of cases of behavioral variant FTD and contributes significantly to caregiver burden. AFTD is proud to be able to support Dr. Massimo's work to develop a technological tool to address this common symptom of FTD and other types of dementia.

AFTD will be posting the RFP for this years non-pharmacological pilot grant soon and I am happy to provide more details to anyone who is interested.

AFTD has also added a 3rd type of grant to our Comstock Grant Program. For about a decade, the Comstock Program has offered short-term respite grants to FTD care-partners and travel grants to help people living with FTD and their family members cover the cost of traveling to an FTD education event. Last year we piloted a Quality of Life Grant for people living with FTD and awarded twenty $500 visa gift cards to qualified applicants. The grant is meant for people living with FTD but we accepted applications from care-partners if the person with FTD could not complete the application on their own. While we encouraged people to use the funds on costs directly related to living with FTD, such as prescription costs and other services not covered by insurance, we also realized that once the recipient received the card they could use it however they wanted. The gift card we used, allowed us to monitor where the card was used. So, even if we couldn't restrict the use of the funds we could at least know where the money went.

After the 20 grants were spent we looked at the outcomes and decided to offer more grants this year. Through the pilot grants we learned that managing the Quality of Life Grants required more administrative effort than the other types of grants in the program. We also realize there is an inherent risk that the grant money will be misused or lost, but discovered our trust in our community to use the funds responsibly was mostly warranted and the benefit of receiving 500 unrestricted dollars far outweighed the administrative and financial costs of the grant. There are still Quality of Life Grants available this and I am happy to provide more details on how to apply.


 

C. Rodgers  |  01-22-2019

More than half of dementia cases are mixed dementias, most commonly Alzheimer's and vascular dementia. These are two different diseases with different symptoms, yet they co-occur so frequently, it is worth considering whether they share a key risk factor. Because brain exposure to ionizing radiation is known to produce cognitive deficits, Alzheimer's pathology (1-4) and vascular damage (5), it is time to take a good, hard look at the most common x-ray procedure undergone every day by millions of people from early childhood on: Dental x-rays.

Dental x-rays are considered so harmless that -- unlike every other medical x-ray procedure -- we do not even keep records of patient exposure. That is because the primary radiation field is bone and teeth, which are not considered radiosensitive, and the total area exposed is very small, considering the body's overall mass. Further, safety experts mainly focus on two radiation effects: cell death and cancer. Although dental x-rays have been associated with brain and thyroid cancers (6, 7), there has been a lack definitive proof that would change protocols. But are we overlooking possible long-term consequences of frequent dental x-rays, such as Alzheimer's and other neurodegenerative diseases? We have lots of clues -- it's a matter of how they fit together.

Although the target in dental x-rays is bones and teeth, the white areas in the image show where radiation did not penetrate, instead scattering. Scatter radiation is a known hazard for x-ray technicians (8), which is why they leave the room before pressing the button. It is also a risk for patients. Lead aprons and thyroid collars prevent some radiation exposure, but the brain has no such shielding (6-8).

Ionizing radiation damages endothelial cells (5), which line the vascular system and comprise the blood-brain barrier. A study published this month shows that "leaky" capillaries are a good indicator of cognitive decline even in the absence of Alzheimer's pathology, and may be an early biomarker for Alzheimer's disease (9). Leaky capillaries would release blood, which contains iron, into the brain's extracellular environment. This would explain the presence of tau and amyloid precursor proteins, which are both involved in iron regulation (10,11).

There also is evidence that motor-neuron diseases, such as Parkinson's, are associated with radiation exposure (4), although further research is needed. Genetic predispositions certainly play a part in neurodegenerative diseases, yet may not always induce dementia in the absence of head exposure to ionizing radiation.

For those who are heavily invested in finding pharmaceutical solutions to dementia, I am sorry to say that there may not be a magic bullet. The means of preventing dementia may be in the hands of dentists -- and of their patients, who regularly agree to routine x-rays that may have devastating consequences down the line.

REFERENCES

  1. Begum N, Wang B, Mori M, Vares G. Does ionizing radiation influence Alzheimer's disease risk? J Radiat Res. 2012 Nov;53(6):815-22. Epub 2012 Aug 7.
  2. Kempf SJ, Azimzadeh O, Atkinson MJ, Tapio S. Long-term effects of ionising radiation on the brain: cause for concern? Radiat Environ Biophys. 2013 Mar;52(1):5-16. Epub 2012 Oct 26.
  3. Cherry JD, Liu B, Frost JL, Lemere CA, Williams JP, Olschowka JA, O'Banion MK. Galactic cosmic radiation leads to cognitive impairment and increased abeta plaque accumulation in a mouse model of Alzheimer's disease. PLoS One. 2012 7(12):e53275. Epub 2012 Dec 31.
  4. Sharma NK, Sharma R, Mathur D, Sharad S, Minhas G, Bhatia K, Anand A, Ghosh SP. Role of Ionizing Radiation in Neurodegenerative Diseases. Front Aging Neurosci. 2018 May 14;10:134. eCollection 2018.
  5. Baselet B, Rombouts C, Benotmane AM, Baatout S, Aerts A. Cardiovascular diseases related to ionizing radiation: The risk of low-dose exposure (Review). Int J Mol Med. 2016 Dec;38(6):1623-1641. Epub 2016 Oct 17.
  6. Lin MC, Lee CF, Lin CL, Wu YC, Wang HE, Chen CL, Sung FC, Kao CH. Dental diagnostic X-ray exposure and risk of benign and malignant brain tumors Ann Oncol. 2013 Jun;24(6):1675-9. Epub 2013 Feb 13.
  7. Hellén-Halme K, Nilsson M. The Effects on Absorbed Dose Distribution in Intraoral X-ray Imaging When Using Tube Voltagesof 60 and 70 kV for Bitewing Imaging. J Oral Maxillofac Res. 2013 Oct 1;4(3):e2 eCollection 2013.
  8. Holroyd J Measurement of scattered and transmitted x-rays from intra-oral and panoramic dental x-ray equipment. J Radiol Prot. 2018 Jun;38(2):793-806. Epub 2018 Apr 10.
  9. Nation DA, Sweeney MD1, Montagne A, Sagare AP, D'Orazio LM, Pachicano M, Sepehrband F, Nelson AR, Buennagel DP, Harrington MG, Benzinger TLS, Fagan AM, Ringman JM, Schneider LS, Morris JC8, Chui HC, Law M, Toga AW, Zlokovic BV. Blood-brain barrier breakdown is an early biomarker of human cognitive dysfunction. Nat Med. 2019 Jan 14. doi: 10.1038/s41591-018-0297-y. Epub ahead of print.
  10. Rao SS, Adlard PA. Untangling tau and iron: exploring the interaction between iron and tau in neurodegeneration, Front Mol Neurosci. 2018 Aug 17;11:276
  11. Rogers JT, Venkataramani V, Washburn C, Liu Y, Tummala V, Jiang H, Smith A, Cahill CM. A role for amyloid precursor protein translation to restore iron homeostasis and ameliorate lead (Pb) neurotoxicity. J Neurochem. 2016 Aug;138(3):479-94.

     

COMMENT SUPPLEMENT

What can be done to improve dental x-ray safety?

If frequent, lifelong head exposure to ionizing radiation from dental x-rays is a risk factor in developing dementia, it is critical to review industry safety options.

There are many studies regarding dental x-ray safety. What follows is a small sample from researchers around the world to highlight some of the many issues at stake, such as the number of x-rays taken (and how fee-for-service results in more radiation exposure), film type and speed, collimator shape, tube voltage, pediatric vs. adult settings and more. Other issues that need to be taken into consideration are the fact that women's brains are more radiosensitive than male brains and children are much more radiosensitive than adults. While no one wants to lower dental health standards, clearly the risk-vs.-benefit regarding dental x-ray practices needs to be reevaluated. Once that has been accomplished, it will take extraordinary measures and leadership to make universal changes in best practices.

  1. Chalkley M, Listl S. First do no harm - The impact of financial incentives on dental X-rays. J Health Econ. 2018 Mar;58:1-9 Epub 2017 Dec 30.
  2. Hellén-Halme K, Nilsson M. The Effects on Absorbed Dose Distribution in Intraoral X-ray Imaging When Using Tube Voltagesof 60 and 70 kV for Bitewing Imaging. J Oral Maxillofac Res. 2013 Oct 1;4(3):e2. eCollection 2013.
  3. Holroyd J Measurement of scattered and transmitted x-rays from intra-oral and panoramic dental x-ray equipment. J Radiol Prot. 2018 Jun;38(2):793-806. Epub 2018 Apr 10.
  4. Anissi HD, Geibel MA. Intraoral radiology in general dental practices - a comparison of digital and film-based X-ray systems with regard to radiation protection and dose reduction. Rofo. 2014 Aug;186(8):762-7. Epub 2014 Mar 19.
  5. Davis AT, Safi H, Maddison SM. The reduction of dose in paediatric panoramic radiography: the impact of collimator height and programme selection. Dentomaxillofac Radiol. 2015;44(2):20140223. Epub 2014 Oct 29.

 

M. Janicki  |  01-20-2019

I am the co-chair of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) (http://www.aadmd.org/ntg). The NTG is an affiliate of the American Academy of Developmental Medicine and Dentistry.

Today, we would like to comment on the deficiency in reliable and available specialized dementia diagnostic and post-diagnostic services for adults with intellectual disability (including those with Down syndrome) and speak to a proposal to remediate this deficiency.

Given that adults with intellectual disability are one of the 'specific populations' recognized by the Advisory Council on Alzheimer's Research, Care, and Services in the National Plan to Address Alzheimer's Disease, and that the National Institutes for Health has noted that many

  1. adults with Down syndrome, an intellectual disability, are at significant risk of dementia (mainly resulting from Alzheimer's disease),
  2. some experience symptoms of cognitive impairment earlier in life,
  3. may be subject to neglect or abuse or are at risk of institutional placement,
  4. would benefit from early screening and assessment and access to knowledgeable diagnostic services,
  5. often live with older caregivers who, or are served by provider agencies that, have difficulty finding knowledgeable clinicians who can provide accurate assessments or diagnoses, as well as post-diagnostic supports, and
  6. knowing that many such resources are difficult to access and scarce in most non-urbanized areas and that few clinicians currently are specialists in the differential diagnosis of dementia among adults with intellectual disability,

     

we propose that there is a need to increase the availability of intellectual disability focused dementia assessment and diagnostic resources and post-diagnostic supports across the United States. Currently, there is a serious lack of such specialized diagnostic services across the states and there is no national register of such specialists. A remedy would be to raise the awareness of the availability of such services and increase the interest of existing (or emerging) dementia diagnostic services to also be recognized as an intellectual disability specialty provider.

We note that the report on intellectual disability and dementia1 that emanated from the 2017 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers stated that early diagnosis is essential to ensure timely interventions, such as proffering medications for symptom management, establishing advance care plans, and applying psychosocial interventions for adults with intellectual disabilities. Further, the report noted the need for increased diagnostic competency among diagnosticians, more public awareness in general, and accessible information designed to raise the "index of suspicion" for caregivers of adults with intellectual disability. The report recommended with respect to screening and diagnostics, that there be increased screening for dementia, raised public and professional awareness; and more readily available diagnostic services.

To this end, the NTG and other aging and disability organizations have proposed a legislative remedy that would increase such awareness, focus attention on available and newly recognized diagnostic services, and enhance post-diagnostic supports. Consequently, we recommend that the Older Americans Act, which is up for reauthorization this year, be amended to include provisions that would increase availability of specialized diagnostic resources and increase the provision of post-diagnostic supports for this specific population.

In the current iteration of the Older Americans Act, there are several sections that contain foundational language:

  • Section 102(14) of the OAA states that the term ''disease prevention and health promotion services'' means--(J) information concerning diagnosis, prevention, treatment, and rehabilitation concerning age-related diseases and chronic disabling conditions, including osteoporosis, cardiovascular diseases, diabetes, and Alzheimer's disease and related disorders with neurological and organic brain dysfunction"; and Section (14)(L) "counseling regarding social services and followup health services based on any of the services described in subparagraphs (A) through (K)."
  • Section 201(e)(3)(f)(2) of the OAA states that "It shall be the duty of the Assistant Secretary, acting through the individual designated under paragraph (1), to develop objectives, priorities, and a long-term plan for supporting State and local efforts involving education about and prevention, detection, and treatment of mental disorders, including age-related dementia, depression, and Alzheimer's disease and related neurological disorders with neurological and organic brain dysfunction."
  • Section 307(a)(16)(A) of the OAA states that the State agency would require outreach efforts that will identify individuals eligible for assistance under this Act, with special emphasis on "(i) older individuals residing in rural areas; (ii) older individuals with greatest economic need (with particular attention to low-income older individuals, including low-income minority older individuals, older individuals with limited English proficiency, and older individuals residing in rural areas); (iii) older individuals with greatest social need (with particular attention to low-income older individuals, including low-income minority older individuals, older individuals with limited English proficiency, and older individuals residing in rural areas); (iv) older individuals with severe disabilities; (v) older individuals with limited English-speaking ability; and (vi) older individuals with Alzheimer's disease and related disorders with neurological and organic brain dysfunction (and the caretakers of such individuals);
  • Section 307(a)(17) of the OAA states that "The [State] plan shall provide, with respect to the needs of older individuals with severe disabilities, assurances that the State will coordinate planning, identification, assessment of needs, and service for older individuals with disabilities with particular attention to individuals with severe disabilities with the State agencies with primary responsibility for individuals with disabilities, including severe disabilities, to enhance services and develop collaborative programs, where appropriate, to meet the needs of older individuals with disabilities."

     

Given these requirements under the statute, it is proposed to incorporate into the Older Americans Act a provision to identify and promote use of state designated intellectual disability geriatric assessment centers, specifically designated as resources for the screening, assessment, and diagnosis of Alzheimer's disease and related disorders with neurological and organic brain dysfunction.

Specifically, the legislation would enable such centers to:

  • Have at minimum one or more clinical specialists experienced in screening, assessing, and diagnosing older adults with intellectual disability, including adults with Down syndrome, developmental disabilities, and other neurodevelopmental conditions who may be at risk of institutional placement, precocious aging, abuse or neglect, and who are at high risk of dementia or who are suspected of experiencing cognitive decline or other neurodegenerative mental or physical condition associated with aging.
  • Offer their assessment and diagnostic services to adults with intellectual disability and with those with severe disability, suspected of or affected by cognitive impairment such as Alzheimer's disease and related disorders with neurological and organic brain dysfunction, and their primary caregivers.
  • Be capable of primary screening, assessment, and diagnosis of cognitive impairment, such as Alzheimer's disease and related disorders with neurological and organic brain dysfunction, following referral from primary care or general practitioners, social care agencies, family members, community-based entities, and via self-referral.
  • Liaise with and provide consultation to social care and other community-based agencies, and referral sources, on post-diagnostic supports and enable or provide follow-along post-assessment or post-diagnostic clinical assessments.
  • Provide consultation on assessment, diagnosis, and post-diagnostic supports to primary care physicians, general practitioners, and other health providers (including neurologists, geriatricians, and psychiatrists) not located geographically proximate to the center, via Internet and other distance communication methodologies, such as telemedicine.
  • Liaise and link to the Aging and Disability Resource Centers within the state.

     

To support this provision, specifically, the State [aging] agency:

  • Would be tasked to identify the scope of need for such a center or centers within the State as part of its State plan requirements.
  • Would be tasked to make such designations in consultation with the state developmental disabilities authority, the state's developmental disabilities planning council, the state's Aging and Disability Resource Centers, and the state entity responsible for administering or organizing the state's plan to address Alzheimer's disease and other dementias.

     

A proposal for legislative language has been prepared that addresses this issue and is being circulated among organizations and associations involved in disability and aging advocacy which have an interest in dementia and are contributing specificity to changes in the next iteration of the Older Americans Act.

We ask for your support, to the extent possible, for this legislative proposal and for due consideration in otherwise addressing this need in the 2019 update of the National Plan.

NOTES:

  1. Heller, T. Scott, H.M, Janicki, M.P., and Pre-Summit Workgroup on Caregiving and Intellectual/Developmental Disabilities. (2018). Caregiving, intellectual disability, and dementia: Report of the Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities. Alzheimer's & Dementia: Translational Research & Clinical Interventions, 4(4), 272-282. DOI: https://doi.org/10.1016/j.trci.2018.06.002

 

S. Keller  |  01-20-2019

I am a co-chair of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) (http://www.aadmd.org/ntg). The NTG is an affiliate of the American Academy of Developmental Medicine and Dentistry (AADMD).

I am a neurologist and the chair of the Special Interest Group (SIG) on Adults with Intellectual and Developmental Disabilities within the American Academy of Neurology (AAN). The SIG was created because we recognized that there is a huge predominance of neurologic complications in this population, including epilepsy and early onset Alzheimer's disease in adults with Down syndrome. To date there are no official assessment, diagnostic, or care guidelines for these conditions and there is no standard curriculum being taught across our country in any family practice, internal medicine, neurology, psychiatry, or nursing training programs. Ironically, the only discussion on health issues relating to adults with intellectual disability is usually discussed in pediatric rotations.

Where do families and support organizations go to get diagnostic assessment and healthcare supports for those with age related decline and dementia? They go anywhere and everywhere which includes university academic centers and memory centers. We hear countless stories across the country that these centers tell them when requested to help that they do not have the expertise to help. We hear a great degree of frustration, sadness, and anger when calls for help are not answered.

We are thrilled that research is being conducted in helping to better diagnose and understand how and why Alzheimer's disease occurs in adults with Down syndrome. Maybe one day it will lead to an ability to change the trajectory of this disease, which tragically can have a horrific rapid progression leading to death in only a matter of several years. Time is not on their side for current research to help many who now are on the precipice of this disease.

The National Task Group on Intellectual Disabilities and Dementia Practices, American Academy of Developmental Medicine and Dentistry, Down Syndrome Medical Interest Group and the efforts of the Special Interest Group of Adults with Intellectual Disabilities in the American Academy of Neurology all hope to make a difference in being able to educate, train and provide further awareness of age-related decline and dementia in adults with intellectual disability. We need to start by understanding what normal age related decline is and to develop appropriate diagnostic and assessment tools which are appropriate for those individuals who may not be verbal and whose supports including aging caregivers may not be able to provide a comprehensive discussion on the nature and degree of the changes that they are noting in the one they support. We need to have Intellectual Disability and dementia Healthcare Guidelines which can then be used to help educate doctors and nurses as part of their curriculum in their training programs as well as for those practitioners who are already practicing.

All of the education and training in the world will not make a difference in improving access to quality healthcare if we can never convince and support healthcare providers to see patients who commonly present with complex developmental conditions, who may have associated challenging behaviors, who may have fragmented supports with limited detailed information about their difficulties and they may not be reimbursed fairly for the time and effort required to make a accurate and appropriate plan of care. This means fair reimbursement for their professional services especially for the many patients who may have Medicare or Medicaid as their primary healthcare insurance. There also needs to be a number of highly specialized experts in the field, including primary care as well as specialty care providers including neurology, psychiatry as well as nursing who can act as a referral center when particular questions and complications arise. Having the availability of a specialized national and state telehealth system to provide clinical expertise in intellectual disability would go far to this end.

We, through our various professional organizations, are raising the awareness of the challenges faced by adults with intellectual disability as dementia takes its toll. However, we can only do so much. A unified approach to promoting clinical acuity in this area and advocated for in the next iteration of the National Plan Update, would go far to give us the support we need and help more professional organizations to join us at the table.

Individuals with Intellectual and Developmental Disabilities have been devalued and marginalized in our society throughout history. There has been social, cultural, and civil rights changes that have led to enabling many to enjoy their lives including living longer than ever before, however, access to quality healthcare especially to aging adults remains abymsal. We all need to catch up to this growing demographic and provide the fair and necessary supports that they deserve as US citizens.


 

J. Ransdell  |  01-16-2019

Thank you for the opportunity to address the Council. I am the mother of a 44-year-old gentleman who has Down syndrome, autism and Alzheimer's.

When we learned that my son Matt was exhibiting signs of early stage Alzheimer's disease, I didn't know what to do. I quickly learned that most of his doctors had no idea what to tell me to expect as we moved forward on this path. Within a few months, I connected with the National Task Group on Intellectual Disability and Dementia Practices and found they were discussing the need for support for families. Because I had a long personal and career history with family support, I volunteered to take the lead on this project, and in April 2016 we hosted our first online support group meeting.

The meetings have provided a safe place for families supporting an individual with an intellectual disability (primarily Down syndrome) and Alzheimer's disease. Many of our members have no one else they can discuss their concerns with. In addition, we have an educational component in the meetings as we invite professionals to present on topics that have been identified by the group members.

We have provided support to more than 20 families, many of whom are still participating. We know there is a need for additional online support groups. As a result, we are in the process of expanding the availability of the NTG's online support groups. We are actively recruiting facilitators for new groups and are teaming up with a university center on aging to undertake a study of the impact of participation in online support groups. In April, we will be presenting this project at the National Down Syndrome Society's Second Adult Summit in Detroit. Michigan. I hope some of you might attend

As noted in the Caregiving, Intellectual Disability, and Dementia: Report of the Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities report (see attached) following the NIH Caregiving Summit, the following points were made related to intellectual disability and family/caregiver support:

  • Dementia-related caregiving in this group poses idiosyncratic challenges and manifests special demands, as caregivers need to be more alert to subtle changes in function due to the presence of lifelong impairment and confront the need to transition from routine care--on the presence of an ID--to specialty care and adapt to stage-related changes when dementia becomes evident.

  • Research dedicated to understanding the course of dementia and the impact of caregiving has in large part excluded (or not actively included) people with IDDs in their samples. A position of the working group is that inclusion of people with IDD, and their caregivers into relevant research will increase the breadth and applicability of studies and produce generalizable value as well as promote full community inclusion.

The conclusion of that report echoes the frustrations that the families we know have expressed. Repeatedly we hear how important their online support group is because no one else truly understands. Here are quotes from some of those families:

#147;I have benefited from the support group, it has been helpful to hear others who are having similar experiences. I feel if I come across a situation during the month, I know I will be able to share with the group and they will understand and provide valuable information and resources."

"No other's words brought me more peace than the words from this group as only those here truly understand how it is.

"You, the support group, Mary, and many others have helped me so much since ****'s diagnosis in January. You have given me lots of information but more importantly have talked me off the ledge and reminded me to breathe. I'm sure I'll have more times like that in the future but for now I am grounded and ready to put one foot in front of the other."

In closing, I ask today that the importance of expanding family support is recognized -- especially that focused on the unique needs of individuals with intellectual disability, such as Down syndrome, and their family caregivers, and that the continuing efforts of the NTG in this regard also be recognized and included in the 2019 update of the National Alzheimer's Plan.

I appreciate the opportunity to speak with you today and to share the efforts of the NTG to support family caregivers, and ultimately people with intellectual disability (such as Down syndrome) and dementia.

Photo of Matt Ransdell.

ATTACHMENT:

T. Heller, H.M. Scott, M.P. Janicki, and Pre-Summit Workgroup on Caregiving and Intellectual/Developmental Disabilities, Caregiving, intellectual disability, and dementia: Report of the Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities, 2018. [Available as a separate link: https://www.sciencedirect.com/science/article/pii/S2352873718300301. An unpublished version is available at: https://aspe.hhs.gov/system/files/pdf/257461/IDD%20PreSummit.pdf]


 


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