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

For those who don't know me, Alzheimer's and other forms of dementia have had a profound impact on my family. My husband and I have 3-out-of-4 parents impacted by the disease.

Person-centered care has been the theme of today's Council meeting. We know what person-centered dementia care SHOULD look like and more importantly, what it SHOULD NOT look like. I stopped by today to share a story about the latter. Person centered-ness includes the ability of families to access affordable home healthcare seamlessly. My father-in-law is a low-income senior, a veteran, and has Alzheimer's. He now requires 24x7 supervision and care. My mother-in-law and my husband worked for several years to complete all the paperwork and phone calls required to establish his eligibility for VA Aide and Attendance benefits and Medicaid. My mother-in-law was relieved when the VA finally agreed, last fall, to send a caregiver to assist her -- and the caregiver was well-versed in dementia care. The downside: she was limited to 6 hours per week.

My father-in-law's disease has progressed dramatically, and my mother-in-law needed more help. She turned to social services to get additional support and was told that the VA and Medicaid don't work together. In fact, if she accepts caregiving support that is paid for by Medicaid, she will have to give up the caregiver provided by the VA -- the well-trained, compassionate caregiver who has established a wonderful rapport with both of my in-laws. They are very hard to find, especially in rural Indiana.

Thanks to the relentless advocacy of both a local social worker and a case manager, the home care hours allotted by the VA recently increased to 16 per week -- better, but still not enough. So, my mother-in-law soldiers on... determined to keep her husband out of a nursing home for as long as possible but losing the battle because she does not have the support she needs.

The constant fight to get home care services for our loved ones with dementia is NOT person-centered care, it's shameful. I hope the Council will consider simplifying access to VA and Medicaid home healthcare services as part of it's on-going work to define what person-centered dementia care looks like moving forward.

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

I believe everyone on this advisory council agrees that, only when working in partnership, can clinicians, patients and family caregivers identify values, goals, and preferences and make informed decisions about patient care. Shared decision-making is critical to person-centered care and should become the standard for informed consent in healthcare. Biological aging itself--let alone Alzheimer's disease and related dementias--increases the risk of morbidity and mortality, independent of treatment interventions. And even clinicians trained in geriatrics can have inaccurate impressions of what matters most to their individual older adult patients.

There is a high unmet medical need for neuropsychiatric symptoms in dementia care. Although some evidence-based psychosocial interventions have shown promise in managing these symptoms, they do not always work in isolation. We are encouraged that the clinical pipeline for Alzheimer's disease and related dementias includes promising treatments for agitation and dementia-related psychosis and we hope CMS is monitoring these developments as they move through the FDA approval process.

Among people with Alzheimer's disease, depression is the earliest observable symptom in at least one-third of cases. Additionally, milder symptoms of agitation may manifest early and increase in prevalence and severity with worsening of dementia, often leading to an increase in family caregiver burden, greater morbidity, poorer quality of life, increased cost of care, rapid disease progression, and institutionalization. Many nursing homes lack the staff ratios and adequate training to deal with increasingly complex residents with dementia. So, it is understandable that we have looked to quick fixes, such as mandating the reduction of psychotropic prescriptions, without first understanding the potential impacts on proper diagnosis and treatment of either dementia or NPS. I fear nursing homes will be afraid to even consider new FDA-approved medications, and residents will be left to suffer severe symptoms needlessly.

There is a lack of data-driven information on which to base decisions regarding improvements to dementia care, such as the best potential treatments for agitation in dementia, and the benefits and drawbacks associated with bifurcating treatment for psychosis and agitation.

In April 2005, the FDA issued a "black-box" warning for atypical antipsychotics in the treatment of NPS in older patients with dementia because of a 1.6- to 1.7-fold higher death rate in those taking such drugs compared with those taking placebo. In a pivotal RCT of demented patients already on conventional or atypical antipsychotics, 3-year survival doubled in those randomized to cease treatment. However, a large longitudinal observational study published in the September 2013 issue of the American Journal of Psychiatrychallenged these findings by showing that the primary correlate of negative outcomes was the psychiatric symptomatology and not the drugs used to treat these symptoms.

There are few programs that integrate physical and mental healthcare for those with dementia in both institutional and community settings, and this is sorely needed. There is ripe opportunity to openly dialogue about the upcoming clinical pipeline; the third phase of the CMS mega rule and its provisions on NPS and dementia; and how patient advocacy organizations, professional groups, and industry can work with regulators to ensure that all of CMS' available policy levers in coverage and payment are engaged to provide the best care possible for beneficiaries with dementia. The Alliance for Aging Research would like the opportunity to convene with CMS and relevant stakeholders this summer to achieve this dialogue and help initiate practical recommendations prior to implementation of the last phase of the mega rule.

Let's do this together. Millions of beneficiaries stand to benefit and there's no time like the present. Thank you.

Otsuka America Pharmaceutical, Inc. (Otsuka) is pleased to submit the following comments for this meeting of the Advisory Council on Alzheimer's Research, Care, and Services. Otsuka appreciates HHS and ASPE's continued efforts to improve the level and quality of care for patients living with Alzheimer's disease and other forms of dementia. Like many other stakeholders, we are concerned about the use of antipsychotics in Alzheimer's patients and residents of long-term care facilities.

An estimated 5.5 million people age 65 and older in the US have Alzheimer's disease.¹ In addition to cognitive decline and other neuropsychiatric symptoms, agitation is a common symptom of Alzheimer's disease that reduces health outcomes and increases costs and burden.² As federal policymakers consider what has been achieved to date (antipsychotic usage in nursing homes reduced by 38%) and consider ways to further reduce unnecessary prescription use, Otsuka would highlight the following points:

• Federal policies should support thorough evaluation and treatment of patients with behavioral health issues living in long-term care facilities. Behavioral health issues may stem from varied sources, and should be addressed differently based on the underlying disease:
  • For behavioral health issues related to underlying serious mental illness such as depression, bipolar disorder, or schizophrenia, antipsychotic medications are on-label for these uses and federal policies should not restrict appropriate access to these medications to patients for whom they are in fact appropriate.
  • For behavioral health associated with Alzheimer's disease, such as agitation, non-pharmacologic interventions should be considered first to address other potential underlying causes and factors. Exceptions should be made in the case of emergent or acute episodes, or for patients currently stabilized on an antipsychotic for a previously diagnosed or co-occurring mental illness.
  • Antipsychotic medications should be reasonably limited for use with dementia-related behaviors unresponsive to nonpharmacologic interventions, and within sound clinical guidelines and appropriately labelled indications for use. Although acute and/or persistent neuropsychiatric symptoms may not respond adequately to nonpharmacologic interventions alone, nonpharmacologic approaches should be evaluated for the potential to permit treatment with lower doses of antipsychotic medications.
• Federal policies should recognize and support appropriate and necessary use of antipsychotic medications for patients with neuropsychiatric symptoms.
  • For antipsychotic use in long-term care facilities, policies should evaluate on-label and off-label use differently. Typical antipsychotics currently used off-label to treat agitation have significant side effects, including over-sedation.³
  • Policy frameworks can and should differentiate between the use of antipsychotics for sedation or chemical restraint, both serious forms of patient abuse, and for the treatment of mental illness and dementia-related neuropsychiatric symptoms that improve patients' quality of life.
  • Clinical indications and effectiveness should be reviewed periodically for all medications, including antipsychotics; however, attempts at gradual dose reduction may be inappropriate or clinically contraindicated for some patients whose behavioral symptoms are currently stabilized or who have a diagnosed serious mental illness.

     

Burden and impact of agitation in Alzheimer's disease

Behavioral symptoms develop in the majority of people with Alzheimer's disease and many of these symptoms are clinically diagnosed as "agitation," including restlessness, significant emotional distress, aggressive behaviors, and irritability. Symptoms of agitation place a serious burden on the people afflicted with the disease and their caregivers, significantly affecting the quality of life for all concerned. Agitation is often a determining factor in the decision to place patients in high-level residential care facilities, contributing to the roughly $259 billion cost burden of Alzheimer's disease in the U.S.⁴

Otsuka believes the Advisory Council should further consider the prevalence and clinical and economic burden of agitation in Alzheimer's disease when evaluating current programs and future efforts that impact people living with Alzheimer's and their caregivers. Specifically, the Council should keep in mind:

• Agitation covers a large group of behaviors occurring in patients with Alzheimer's disease, and is an excessive/inappropriate manifestation of 'normal' human emotions and behaviors. Symptoms of agitation include:
  • Excessive motor activity (e.g. pacing, rocking, gesturing, pointing fingers, restlessness, performing repetitious mannerisms).
  • Verbal aggression (e.g. yelling, speaking in an excessively loud voice, using profanity, screaming, shouting).
  • Physical aggression (e.g. grabbing, shoving, pushing, resisting, hitting others, kicking objects or people, scratching, biting, throwing objects, hitting self, slamming doors, tearing things, and destroying property).⁵
• Symptoms of agitation in Alzheimer's disease are associated with significant burden and negative consequences for the patient.^{6,7,8,9,10,11}
  • Physical activity offers promise for the prevention of cognitive decline in older patients with Alzheimer's disease. A study in 437 elderly patients with a range of dementia severities shows that symptoms of agitation (as measured by the Neuropsychiatric Inventory, NPI) are associated with lower rates of participation in physical activities.¹²
  • Symptoms of agitation, such as becoming upset easily, hoarding, and rejection of care such as bathing and dressing can interfere with the ability of a patient with Alzheimer's disease to carry out the activities of daily living.¹³
  • Agitation and aggression commonly arise in people with Alzheimer's disease. This can be distressing for the individual and often confers risk to themselves and to others.¹⁴
• Symptoms of agitation in patients with Alzheimer's disease are associated with high burden and negative health, social and economic consequences for their caregivers.
  • Fifty-nine percent of family caregivers of people with Alzheimer's and other dementias rated the emotional stress of caregiving as high or very high.¹⁵ In particular, problem behaviors (such as agitation) are consistently related to caregiver distress and depression.^16,17
  • Neuropsychiatric symptoms in Alzheimer's disease, including agitation, are associated with reduced employment income for caregivers.¹⁸ Data from the US report that almost 60% of US family caregivers of people with dementia are also employed; two thirds of these reported that they missed work, 8% that they turned down promotion opportunities, and up to 31% that they had given up work to attend to caregiving responsibilities.¹⁹
• Neuropsychiatric symptoms, including agitation can result in earlier placement in long-term care.²⁰
  • "...high frequency of distressing behavioural symptoms in patients with dementia can contribute to caregiver burnout, which is the most common cause of institutionalization of patients with dementia."²¹
  • A systematic review of 80 studies found that behavioral symptoms, such as agitation, were a consistent predictor of nursing home admission in patients with dementia.²²
  • A 6-month study of the detailed clinical records of 3075 patients with Alzheimer's disease found that patients with symptoms of agitation were significantly more likely to be admitted to long-term care (care home, general hospital inpatient or mental health inpatient admission) during the course of the study than patients without (OR 1.97 [95% confidence interval (CI), 1.59-2.42], P<0.01).²³
  • Caregiver stress due to caring for an individual with behavioral symptoms (such as agitation) increases the chance that they will place the care recipient in a nursing home.²⁴
• Behavioral symptoms present a dilemma to clinicians and care providers in a long-term care setting since disruptive or dangerous behavior requires attention and resources that are not always available.²⁵
  • Within long-term care facilities, 40-60% of Alzheimer's disease patients exhibit symptoms of agitation and aggression.²⁶
  • In a multicenter study comprising 236 patients with mild to moderate Alzheimer's disease followed over 5 years to map the natural course of illness, the percentage of patients per year experiencing agitation/wandering was 39-57%, and the percentage per year exhibiting physical aggression was 6-22%.²⁷
• Patients diagnosed with Alzheimer's disease benefit from the development of a comprehensive treatment plan encompassing non-pharmocological and pharmacological interventions.²⁸
  • Nonpharmacological treatments for behaviors associated with Alzheimer's disease include activities such as identifying and eliminating triggers, environmental simplification, and structuring daily routines.²⁹
  • Current pharmacological treatments for agitation are associated with significant safety and tolerability trade-offs: "...as there are currently no FDA-approved pharmacological treatments for agitation in AD [Alzheimer's disease], clinicians ultimately resort to off-label use of antipsychotics, sedatives/hypnotics, anxiolytics and antidepressants in an attempt to control symptoms. Unfortunately, these treatments have limited utility given a modest efficacy that is offset by relatively poor adherence, safety and tolerability."³⁰
• Treatment of symptoms of agitation in patients with Alzheimer's disease reduces caregiver burden and the cost of care for the patient.³¹
  • Reducing the symptoms of agitation in a patient with Alzheimer's disease allows the caregiver to continue to manage the patient's activities of daily living at home.³²
  • Facilitating home care can delay the move from home to a long-term care setting, which has greater costs than home care by family. Annual residential cost per patient are: $48,000 in assisted living facilities, $89,297 in a nursing home, and $100,375 in a private room in a nursing home.³³

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Otsuka appreciates the Advisory Council's consideration of our comments. We stand ready to assist with any of the issues raised in our letter. Please contact Thad Flood with any questions.

NOTES

1. Alzheimer's Association 2018. Facts and Figures 2018. Retrieved from https://www.alz.org/media/Documents/facts-and-figures-2018-r.pdf.
2. Aigbogunet al. Treatment patterns and burden of behavioral disturbances in patients with dementia in the United States: a claims database analysis. BMC Neurology 2019; 19:33.
3. American Psychiatric Association 2016, The APA Practice Guideline.
4. Alzheimer's Association. 2017 Alzheimer's disease facts and figures. 2017; 13:325-373
5. Cummings et al. Agitation in cognitive disorders: International Psychogeriatric Association provisional consensus clinical and research definition, Int'l Psychogeriatrics (2015), 27:1, 7-17.
6. Kales et al. Assessment and management of behavioral and psychological symptoms of dementia, BMJ 2015; 350:h369.
7. Peters et al. Neuropsychiatric Symptoms as Predictors of Progression to Severe Alzheimer's Dementia and Death: The Cache County Dementia Progression Study, Am J Psychiatry 2015; 172:460-465.
8. Scarmeas et al. Disruptive Behavior as a Predictor in Alzheimer Disease, Arch Neurol. 2007 December; 64(12): 1755-1761.
9. Wilcock et al. Memantine for Agitation/Aggression and Psychosis in Moderately Severe to Severe Alzheimer's Disease: A Pooled Analysis of 3 Studies, J Clin Psychiatry 2008; 69:341-348.
10. Banerjee et al. Quality of life in dementia: more than just cognition. An analysis of associations with quality of life in dementia, Neurol Neurosurg Psychiatry 2006;77:146-148.
11. Arbus et al. Incidence and Predictive Factors of Depressive Symptoms in Alzheimer's Disease: The Real.FR Study, JNHA 2011; Vol. 15.
12. Watts et al. (July, 2016) Neuropsychiatric Symptoms are a Barrier to Engegement in Physical Activity. Alzheimer's Association International Conference, Toronto.
13. Lyketsos et al. Neuropsychiatric symptoms in Alzheimer's disease, Alzheimers Dement. 2011; 7(5): 532-539.
14. Ballard et al. Agitation and aggression in people with Alzheimer's disease, Curr Opin Psychiatry 2013, 26:252-259.
15. Alzheimer's Association 2015. Fact and Figures 2015. Retrieved from https://www.alz.org/media/Documents/2015FactsAndFigures.pdf.
16. Pinquart et al. Associations of Stressors and Uplifts of Caregiving with Caregiver Burden and Depressive Mood: A Meta-Analysis, Journal of Gerontology: Psychological Sciences 2003, Vol. 58B, No. 2, 112-128.
17. Schulz et al. Psychiatric and Physical Morbidity Effects of Dementia Caregiving: Prevalence, Correlates, and Causes, Gerontologist (1995) Vol. 35, No.6, 771-791.
18. Kales et al. 2015
19. Brodaty et al. Family caregivers of people with dementia, Dialogues Clin Neurosci. 2009; 11:217-228.
20. Kales et al. 2015
21. Blake et al. (March, 2002) Optimal Management of Psychosis & Agitation in the Elderly, Medscape. Retrieved 1/5/2017 from: http://www.medscape.org/viewarticle/429889.
22. Gaugler et al. Predictors of Nursing Home Admission for Person with Dementia, Med Care 2009;47: 191-198.
23. Knapp et al. Predictors of care home and hospital admissions and their costs for older people with Alzheimer's disease: findings from a large London case register, BMJ Open 2016; 6:e013591.
24. Yaffe et al. Patient and Caregiver Characteristics and Nursing Home Placement in Patients with Dementia, JAMA April 2002; Vol. 287, No. 16.
25. Greenblatt et al. Use of Antipsychotics for the Treatment of Behavioral Symptoms of Dementia, J Clin Pharmacology 2016, 56(9) 1048-1057.
26. Gauthier et al. Management of behavioral problems in Alzheimer's disease, Int'l Psychogeriatrics (2010); 22:1, 346-372.
27. Holtzer et al. Psychopathological Features in Alzheimer's Disease: Course and Relationship with Cognitive Status, JAGS 51:953-960, 2003.
28. American Psychiatric Association 2016, The APA Practice Guideline on the Use of Antipsychotics to Treat Agitation or Psychosis in Patients with Dementia. Retrieved from https://psychiatryonline.org/doi/pdf/10.1176/appi.books.9780890426807.
29. Gitlin et al. Managing Behavioral Symptoms in Dementia Using Nonpharmacologic Approaches: An Overview, JAMA. 2012 Nov 21; 308(19): 2020-2029.
30. Antonsdottir et al. Advancements in treatment of agitation in Alzheimer's disease, Expert Opin. Pharmacother. (2015) 16(11):1649-1656.
31. Hoe et al. Caring for relatives with agitation at home: A qualitative study of positive coping strategies. BJPsych Open (2017), 3(1), 34-40.
32. Knapp et al. 2016.
33. Gemworth Financial 2019. Cost of Care Survey 2018. Retrieved from https://www.genworth.com/aging-and-you/finances/cost-of-care.html.

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.

For several years I have co-facilitated the NTG national online support group and administered a Facebook support group for families who love someone with Down syndrome and Alzheimer's disease. My comments today come from conversations we have had in the past couple of months.

In the middle of February, a sibling posted on the Facebook group page about her frustration trying to find out-of-home care for her brother who is requiring more assistance. Paula, her sister Becky, and others have given me permission to share their stories.

From Paula & Becky, siblings to Matt:

"Matt is 46-year-old man who has Down's Syndrome (Trisomy 21). About 8-10 years ago he started exhibiting signs of changes. He seemed to be growing older. He wanted to "retire" from his workshop. He was less social. He began interacting verbally and physically with "people" only he could see. Sometime around the fall of 2012 Matt received a confirmed diagnosis of Dementia, likely early Alzheimer's, that was tacked on to the existing diagnosis of Intellectual Developmental Disability (IDD) he already carried. The problem now is that the healthcare system, is not ready for Matt. They aren't ready for Dementia in Down's (sic) Syndrome.

"Currently Matt is having an exacerbation of psychosis. His meds have been adjusted. Melatonin was added for sleep. He sleeps better, but he hasn't had relief from the psychosis and has begun elopement. Currently there is about 12 inches of snow on the ground. The temperature dips into the single digits at night and not above freezing during the day. When Matt elopes, he is found walking in shorts and sleeveless shirt. Sometimes he gets a coat but does not fasten it up. He does not get gloves or a hat. He wears tennis shoes but has gone out without shoes. He walks looking for Paula's car. He runs into the street without looking when he is pursued by staff. He has been found sitting in unlocked cars waiting (for) her. (It is against fire code in his residence to keep the doors locked although they are now alarmed).

"Paula would like to move Matt to a skilled care facility w/locked doors and specially trained staff. Why not? Because his primary diagnosis is IDD and Dementia is secondary. Those lovely places only care for patients with primary Alzheimer's & Dementia, or Parkinson's & Dementia, etc. WHAAA? Yep, they can't/won't take him because legally they can't keep a patient with IDD in a facility with more than 8 beds. What about the places for people with IDD? They aren't equipped or trained for Dementia/Alzheimer's. Really. There is a place Matt could go for a behavior analysis. It is a locked facility with highly trained staff where they would cease all medications and observe him then add medicine back one at a time to assess effectiveness and hopefully provide him with some relief of the psychosis and he could return to his residence safely, or they would definitively say the dementia is the primary diagnosis and he could be placed in a safer home. It is full, and he is on a waiting list. He could possibly get in sooner if he was in crisis.

"Last Thursday (2/14/19) Matt was in crisis with psychosis and attempted elopement. He left his group home, convinced he was escaping from being held hostage, ill-equipped for the weather. When staff members and housemates attempted to get him back inside to safety, he became physically aggressive. This crisis, although unfortunate, was timely because there are measures in place for crisis intervention situations like this that could place Matt exactly where we needed him to be for re-evaluation of his needs and diagnosis. Paula was meeting with her dementia caregiver support group when she got the call and there were professionals on hand to start this intervention.

"Specifically, there are two legal provisions in Wisconsin called Chapter 51 and Chapter 55. Under the statues the county board designates who can enact these provisions. For Monroe County it is the Sheriff's Department and the Health Dept/Adult Protective Services. The appropriate calls were made to activate this crisis intervention system, and no one would take the ball and run with it. NO ONE! They passed the ball from one agency to another. Adult Protective Services (APS) said the Sheriff's Department does that. The Sheriff's Department said to call APS because they hadn't done that for years.

"So now we must allow another unsafe situation--a crisis. Basically, the alarms will be shut off and he will be allowed to leave his home, maybe with a coat or maybe not, probably with shoes, but no hat or gloves, in shorts in single digit temperatures, risking frostbite or other injury. Then 911 will be called and hopefully the designated entities will execute the plan the statutes dictate. We are waiting for an appointment with another healthcare provider qualified to assess a patient with Down's Syndrome and Dementia, but it may take months to get into that doctor which is not soon enough to help with this elopement issue in the dead of winter.

Paula wanted to just take him home with her Thursday and wait for medical intervention, but once he is in a safe environment it could be months before they get help. It will only be weeks before Matt becomes agitated with her home and begins elopement there. Paula lives in the country and the risk of him getting horribly lost there is much greater. It is our intention to start unraveling the tangled web of bureaucracy that is jeopardizing the care and safety of people with an Intellectual Developmental Disability and Dementia. It is a brave choice she makes that contradicts everything she has ever done for Matt. It is a choice none of us ever thought she would have to make. It will hopefully awaken the health care policy makers to the realization that there is much work to be done to ensure the safe and seamless continuity of care for people like Matt. Please, keep him in your prayers and share his story. Hopefully someone has an answer that gets us to the finish line swiftly and safely." Paula and Becky

Paula and Becky provide one example of the barriers faced by families who have loved ones with Down syndrome and an additional diagnosis of Alzheimer's. Several other family members commented that they had also hit brick walls when seeking support outside the home. Studies show that people with Down syndrome face accelerated aging and thus in their 40s and 50s have health care needs more closely resembling that of people already in their 60s and 70s.

Here are some quotes from other families:

• "When I started calling around to get respite care for a week, I was told it would have to be short term nursing home facility in our area, so when I called about those, I was told they only accommodate for those over 65." Cathy
• "The group home staff are not trained, and our ERs have no idea how to help my son...I truly believe that our world was never prepared for their aging process, and still isn't. Our loved ones seem to be the forgotten population!!" Joann
• "So far though, I am beginning to feel every resource or suggestion with every good intention is just a band aid not really addressing the heart of the problem -- adequate health care and placement for Connie!!! So, unless you can quit your job or work like a dog working full time while patching care for your loved one there isn't anything out there suitable as your loved one declines." Mary
• "I am attending a HUGE event today...It is an all-encompassing conference regarding dementia and Alzheimer's. Except...for those with DS (Down syndrome). So once again, I am left floundering for connections for my sister. I am now armed with brochures and business cards, free lip balm, chocolates, and chip clips with the names of all these agencies that cannot help me." Peg
• "It is sad that our social workers, nurses, doctors, politicians, CBRF (Community Based Residential Facility) owners/caregivers, administrators at nursing homes and hospitals continue to keep our loved ones on this roller coaster of assistance that is either misleading, inappropriate, inadequate care available to our loved ones with DS/Alzheimer's! Most memory care don't accept Alzheimer's patients with a disability. Most won't take straight Medicaid. Most memory care facilities lack staff that are trained to care for someone with DS and Alzheimer's." Mary
• "I was sitting next to my sister waiting for a bed in the ED (Emergency Department) when I received a phone call from the hospital. ...it was a doctor; he wanted to discuss my sister's diagnosis and plan of care. You tell me how a physician can call me when he hasn't even physically seen or assessed my sister since I was with her the whole time. ...he apologetically laughed and said he didn't know family was with her and it isn't commonplace. ...if no family is present that justifies not treating someone with a disability just as you would anyone else? Is that why the CBRF don't like it when family are around in the home too?" Mary
• "My experience has been that seeking emergency care with doctors that see his Downs first, develop an attitude of hurry up and treat and send you on your way attitude. He has had dozens of hospitalizations during his life. Healing comes from proper diagnosis, caring medical professionals, and acknowledgement that parents are some of the best resource to develop a treatment plan. Our dear special children are people first who have many challenges to face and overcome and move forward. Caring medical and social service personnel can lighten this load or add to it. Parents know our children best and need to be listened to." Judith
• "My son, Matthew who has Alzheimer's has become very combative. After a 911 call, he was taken to the hospital and sedated with Seroquel. Then the hospital told us that they couldn't keep him because he didn't have a medical problem. We call the local Regional Center and requested emergency placement until we could develop a plan. We were told that they couldn't place him because he was a danger. We were left on our own to figure this out, and I did. I found a good Memory Care facility that would take Matthew. But now I'm facing the issue of coming up with about $6,000.00 because we did the placement and not Regional Center. He is still a little aggressive mostly very loud and yelling, and I don't feel that I can bring him home yet. He has lived at home all of his 47 years and this is really difficult for all of us, and I feel "abandoned" by the system that is supposed to be there to provide assistance. At a loss as to what to do." Susan
• "Today, for the SECOND time, I contacted the Alzheimer's Association administrator & pretty much begged them to open a forum for Caregivers of Aging Down Syndrome. They came back, AGAIN, & thanked me & pretty much said they didn't think there was a need for that type of forum. It flabbergasts me when even the Alzheimer's Association doesn't understand or see the need." Pam

I ask why it is the families I have come to know -- in various parts of the country -- have such similar stories.

I know that my friend and colleague, Mary Hogan has spoken to this Advisory Council for many years about the exclusion of people with Down syndrome and Alzheimer's in many aspects of research and community care. I am left wondering if we are being heard. From 1998 to 2003, I worked for the State of Florida in the central office of the Florida Developmental Disabilities Program. During the four and one-half years I was there my goal was to bring a family voice to the decisions that were being made -- decisions that had direct impact on people like my son. I left feeling like my only accomplishment was a bloodied head from the wall that seemed to be firmly in place. When I hear these stories from families around the country, it seems nothing has changed.

I hear from parents and siblings who care deeply about family members with Down syndrome as they are treated differently, given less than equal care in the medical field and are unable to access community services that their neighbor without disability can obtain. No one should have to spend an entire lifetime in a fight for every service they deserve, every service they need. It is wrong and I implore this group to help us take steps to end this disparity. I strongly urge you to continue to push for full inclusion of people with Down syndrome and Alzheimer's in all federally funded community programs and research.

Hello my name is Diana Blackwelder, I am 57 years old and I was diagnosed with Younger Onset Alzheimer's Disease in 2017. I thank you for the opportunity to provide input regarding this session's focus topic of person centered planning and implementation of care plans for people living with cognitive symptoms. After all, person centered planning should begin with input from the person(s). As always, I invite you reach out to me and my peers also living with various forms of dementia for further discussion as two minutes is insufficient to go into much detail regarding this very important subject.

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. Now I focus on modifying my living environment and processes to best support myself and my changing cognitive abilities. I desire to remain as independent and self-sufficient for as long as possible. I have conveyed to my POA person that I refuse to become a resident in any form of memory care facility. I choose not to be locked away with my only interaction being those decades my senior in advanced stages of dementia and under-paid and inadequately trained staff. America treats prisoners more humanely. Fortunately, I have the financial wherewithal and a POA person required to support this desire not to be locked away, deprived privacy and independence and choice and likely drugged into compliance with little or no intellectually appropriate stimulation or access to large greenspaces, sunshine and fresh air.

My 2 years of experience living with dementia since diagnosis and performing extensive research and learning about dementia and services at the local, national and world level has shown me that our focus on researching a cure and providing respite & education for caregivers serves to prove that the stigma that those with dementia lose their intelligence and can't do anything for themselves without supervision persists. This has persisted far too long. I am here to dispel the stigmas about Alzheimer's by example. We need to be empowered to maximize and extend our self-sufficiency for as long as possible even if that increases risk to us. None of us live forever. We want and need to thrive not merely exist. Therefore, care plans must include education, peer and professional led support groups and appropriate activities for the person living with the dementia. So many support groups either exist solely for the caregivers or if they include an ancillary group for the caregiver to "drop off" the person living with the disease, those groups merely provide babysitting services with at best activities better suited for children than intelligent adults with memory issues.

I feel like I need to repeat myself. We do not lose our intelligence and even as we forget some of our life and professional experiences, those experiences have served to shape who we are and that doesn't fade away. What fades away is our ability to communicate with language. What fades away are nerve impulses that help us control our bowels and other bodily functions like swallowing. What fades away are our ability to juggle in super short term conscious memory all the information that helps us process logical thought. Our feelings, our emotions, and our intelligence, all remain intact so care planning needs to leverage and respect these things. When caregivers see our moods changing it is more likely the result of our environment and the impacts to us than the direct result of a disease process. I already am deeply stressed by our normal public environment and must control my exposure. If I lose that ability to control the exposure, I expect I like others in the later stages of dementia will become agitated due to the frustration of not being able to control my environment.

Being single with no family support system, and this not being unique; I strongly advocate that care plans must consider leveraging nontraditional support systems. Some starting points are in existence today but are not leveraged or included in care plans. They include Villages [https://www.aarp.org/home-garden/livable-communities/info-04-2011/villages-real-social-network.html] and organizations like Dementia Action Alliance [https://daanow.org/our-mission/] and Dementia Alliance International [https://www.dementiaallianceinternational.org/] that leverage grass roots efforts of community helping community. Villages do this on a micro level in small neighborhoods [https://dcv.clubexpress.com/content.aspx?page_id=22&club_id=161481&module_id=160518], DAA does this by integrating those living with dementia and professional experts working together to implement virtual education and support and hosting an education and awareness dementia conference [https://daanow.org/conferences/] (this June in Atlanta) and Dementia Mentors [https://www.dementiamentors.org/] where the Mentors are trained mentors also living with dementia for example. DAI works on a global scale also virtually through virtual support groups by and for people living with dementia as well as advocacy through the World Health Organization and other agencies worldwide. These grass roots organizations need your recognition and support and to be included as tools to leverage when implementing care plans.

In my written submission, I have also included informative follow up to my January public comment and information of relevant activities currently underway in congress (See below)

ADDITIONAL INFORMATION

As follow up on my January comments about the Smithsonian See Me and National Gallery of Art Just Us Programs for people living with dementia, I am pleased to report that both of these programs have restarted and that the See Me program has recently expanded to include not The American History Museum in addition to the Smithsonian American Art, Portrait Gallery, African Art, and Freer Museums. These are programs that respect our intelligence and recognize we have a cognitive disability and many of us advanced age as they create a physical, emotional and communicative environment that accommodates these disabilities while providing us varied opportunities to socialize, communicate and experience Art and History. I hope these programs receive your respect and support they so deservedly have and continue to earn with each program they execute.

As follow up re my comments about the DC Office of Aging, I have had meetings with many within DC Government including the Director and Executive Director for the now renamed Dept. of Aging and Community Living as well as others including the Mayor's budget director and Process Director for Health & Human Services to name a few. I have learned that almost all services offered receive at least partial funding through Grants from the Older Americans Act and it is this funding source that sets an age restriction on services that excludes all like me with Younger Onset Alzheimer's. While this is a large part of the issue with the lack of services, it isn't the only issue at hand. However, it is one that exists throughout the country and hence is very pervasive. A bill was recently introduced to congress to rectify this situation. I hope all those on this panel will proactively leverage their influence with the legislature to help this bill to pass. It is the bi-partisan Younger-Onset Alzheimer's Disease Act of 2019 [https://www.congress.gov/bill/115th-congress/house-bill/1903] HR 1903 & S 901. See Alzheimer's Association Fact Sheet at https://alzimpact.org/media/serve/id/5c9e439d96939.

As additional information regarding the implementation of care plans in the Alzheimer's Associations' 2019 Facts and Figures [https://www.alz.org/alzheimers-dementia/facts-figures], it is shown that only 16 percent of seniors even receive a cognitive exam so care planning cannot begin until the diagnosis and then only 33 percent of those with the disease actually receive a diagnosis. Therefore care planning is often started in the later stages of the disease when it is harder to get input from the person living with the disease due to diminished communication skills. Another bipartisan bill is currently before congress that is also a priority for the Alzheimer's Association [http://act.alz.org/site/PageNavigator/Advocacy_PublicPolicy/HOPEforAlzheimersAct.html] and I believe should be a priority for NAPA as well. It is the Improving HOPE for Alzheimer's Act [https://www.congress.gov/bill/116th-congress/house-bill/1873?q=%7B%22search%22%3A%5B%22hr1873%22%5D%7D&s=1&r=1] HR 1873 and S 880. A fact sheet is available at http://act.alz.org/site/DocServer/hope_for_alz_fact_sheet.pdf?docID=3021. It is focused on increasing the currently abysmal rate of care planning services even discussed by doctors when diagnosing Alzheimer's and other dementias and likely causes many doctors to withhold the diagnosis due to lack of time and resources to provide this information and support so critical to the wellbeing both mentally and physically for those with the disease and their care givers.

AFTD is deeply appreciative of how inclusive the advisory council has been of FTD and the related dementias. The recent ADRD summit at NIH last month is just one example of how NAPA has included the related dementias in the discussion of how to prepare the nation for the impact of these diseases. It is convenient to think that different types of dementia conform to the names we have given them, each with its own set of symptoms and underlying pathologies. One of the messages I took home from the summit was simply how untrue that is. In fact, most cases of dementia are pathologically mixed and multiple presenters discussed the role of TDP-43 in various forms of dementia including an entirely new disease entity called limbic-predominant age-related TDP-43 encephalopathy, or LATE.

Considering how messy dementia really is, both in life and pathologically I urge the council to consider dedicating one of the NGO seats to a representative from an Alzheimer focused organization and the other to a group that focuses on the related dementias. It is becoming clearer that the challenges of dementia must be met with multiple strategies and there are many more dementia advocacy organizations that represent the ADRD community that would add a valuable perspective to the advisory council.

I wholly endorse the recommended 5-point plan for the National Alzheimer's Project Act, however, I feel that it necessary to address this plan using a Posthumanist approach to dementia care. Our current social policies view dementia care options with a Humanist lens, but gerontology has recently begun to take on an increasingly post-humanist approach. The former holds an outdated and limited definition of what an autonomous older adult can be, while the latter expands that definition in a way that takes into consideration our increasingly technologically progressive society. Current research is making headway in biotechnological advancements that could extend the ability to age in place with dementia safely and comfortably. Such assistive technology can allow individuals with Alzheimer's and Alzheimer's related dementia to live fuller, more independent lives, without the increasing and extensive cost of both formal and informal caregiving. Other countries have already begun to explore these possibilities. Consider the following resources:

• https://ec.europa.eu/digital-single-market/en/news/companionable-research-project-delivers-robotic-assistance-elderly
• https://ec.europa.eu/digital-single-market/en/news/mobiserv-project-providing-robotic-carers-and-smart-systems-elderly
• https://www.alzheimers.net/robots-could-help-people-with-dementia/
• https://neurosciencenews.com/prosthetic-memory-8699/

   

Currently, dementia has no treatment, no cure, no preventative care, and no way to slow it down (CDC, 2018). However, current technology does exist that can improve the quality of lives of these individuals. As persons with dementia begin to lose their autonomy and ability to reason, assistive technology and human enhancement can be key in maintaining their personhood and decision-making potential. I hope that these considerations will be kept in mind in the revision of the NAPA moving forward.