ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE, AND SERVICES
Public Comments on Advisory Council Meeting, April 2018
List of Comments
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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.
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.
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.
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.
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.
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:
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:
Symptoms that may indicate the presence of early stage dementia in persons served with Down syndrome.
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.
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
Measures of Adaptive Behavior
The table below is a comparison of the advantages and disadvantages of different assessment instruments for persons served with Down syndrome living with dementia.
Table 2: Domains included in different screening and assessments instruments for persons served with Down syndrome living with dementia.
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.
April 27, 2018 -- Advisory Council Meeting #28
The meeting was held on Friday, April 27, 2018, in Washington, DC. During the meeting, the Clinical Care Subcommittee took charge of the theme, focusing on advancing consensus on dementia care elements to guide new outcomes measurement. The Council heard speakers in two sessions, one focused on developing consensus about dementia care elements, and the second on models that are informing outcomes measurement. The meeting also included updates on work from the previous meetings, a presentation on the final report from the October 2017 Care Summit, and federal workgroup updates. Material available from this meeting is listed below or at https://aspe.hhs.gov/advisory-council-alzheimers-research-care-and-services-meetings#Apr2018.
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Public Comments -- [HTML Version]
National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers: Report to the National Advisory Council on Alzheimer's Research, Care, and Services -- [HTML Version] [PDF Version]
Introductions and Updates -- [Video]
Clinical Care Agenda Session 1 -- [Video]
Public Comments -- [Video]
Clinical Care Agenda Session 2 -- [Video]
Care Summit Final Report -- [Video]
MEETING WRAP-UP: Final Report to the NAPA Advisory Council -- [Video]