Dr. Keller and I are the co-chairs 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 and is associated with the Rehabilitation Research and Training Center on Developmental Disabilities and Health at the University of Illinois at Chicago.
Dr. Keller and I want to use the public comments opportunity to raise before the Council an issue that continues to have resonance -- the need to enhance supports to families and others who are the primary caregivers for adults with intellectual disability affected by dementia resulting from Alzheimer's disease and other related causes. Recently, the Wall Street Journal noted on its front page the issue of the declining reservoir of caregivers for our aging population and the need to shore up supports for caregivers nationally. The article noted that "today, an estimated 34.2 million people provide unpaid care to those 50 and older *** and help keep people out of costly institutions" and went on to cite the at-times dire situations of affected persons lacking home-based supports.i The article focused on the both the lack of persons, both paid and un-paid, who could aid with caregiving, and the growing unfulfilled needs of existing caregivers wrestling with providing care for the many persons affected by Alzheimer's disease.ii
The NTG recognizes that home-based and familial caregiving, as well as the resources to enable it, is an issue facing many families in the general dementia care community and wants to emphasize that these same concerns resonate broadly throughout the community of long-term family (and other) caregivers of persons with intellectual disability. Given this context, this is an issue that we wish to again bring up before the Council.
In a recent article published in the journal, Alzheimer's & Dementia: Translational Research & Clinical Interventions,iii the authors presented the updated findings and recommendations that stemmed from a pre-summit report originally submitted to the 2017 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers.iv The information in this article should have much interest to the Council as it discusses and formulates its next update to the National Plan to Address Alzheimer's Disease.v
The article noted that as the population of older adults in the United States continues to rapidly increase, this group will likely need additional services and supports. Caregivers of adults with intellectual disability and dementia face many of the same challenges as do caregivers of other older adults with dementia. However, they often experience unique patterns of caregiving, face additional challenges and stressors, and draw from different sources of support and education.
The article related that the working group that produced the report examined five major areas related to programs and caregiving: (1) challenges of dementia; (2) family caregiving interventions; (3) supportive care settings; (4) effects of diversity; and (5) bridging service networks of aging and disability. Relevant key points made in the article included:
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Early diagnosis is essential to ensure timely interventions, such as medication for symptom management, establishing advance care plans, and psychosocial interventions for both the adult and his or her caregiver.
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There is a 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 persons with intellectual disability.
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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 intellectual disability--to specialty care and adapt to stage-related changes when dementia becomes evident.
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There are differences among adults with intellectual disability and dementia in their trajectory of dementia (often with earlier onset of dementia), a shorter duration of dementia, and diagnostic difficulties given lifelong neurocognitive limitations and the fact that some adults will require lifelong services and supports, including family caregiving or supported living outside the family home.
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In many instances, other kin--primarily siblings--play a significant supportive caregiving role for adults with intellectual disability when their parents are no longer able to provide care.
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Lifelong caregivers often have different experiences from later-life caregivers with respect to adaptation, ascendance to caregiver roles, and with mobilizing and drawing on distinct networks of support.
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Like other caregivers, those of adults with intellectual disability and dementia cope with changing behavior and associated declines, seek out information and resources to help with sustaining caregiving, try to obtain help with diagnostics and advice on interventions, contend with financial and residential care planning, and seek counsel on dealing with advanced dementia and end-of-life care.
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Adults with intellectual disability who reside in specialty dementia care group homes often transition from regular group homes or from family homes and may remain in such dementia care homes for up to 10 years; given this, a greater investment in research on community dementia-capable care and the identification of best practice applications geared to stage-related functional decline is warranted.
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Research dedicated to understanding the course of dementia and the impact of caregiving has in large part excluded (or not actively included) people with intellectual disability in study populations.
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There is a dearth of research exploring varying cultural perceptions of dementia among caregivers of adults with intellectual disability and what norms exist for extended caregiving, which often leads to a misalignment between public policies and state services, and meeting family caregiving needs among some culturally distinct groups.
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Public policy targeting caregivers of adults with intellectual disability isn't usually sufficiently sensitive to the needs of variations of "minorities" and diverse geographic conditions (such as living in rural or remote settings), and consequently may not always adequately reflect cultural and geographic awareness.
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Professionals in the field of aging often do not feel adequately prepared to work with and/or meet the needs of persons aging with lifelong disabilities or individuals with early and mid-adulthood onset disabilities; thus, more work is needed in bridging aging and disability services to help find solutions to deficits in awareness and ideological differences that may hinder cross-network collaborations.
The working group report recommended overall that there be increased supports for caregivers of adults with intellectual disability and dementia; increased research on community living settings related to people with intellectual disability (and including caregivers of persons with intellectual disability in dementia research); acknowledgment of the influence of cultural values and practice diversity in caregiving; increased screening for dementia and raised public and professional awareness; and leveraged integration of the nation's aging and disability networks.
Pointedly, the article also noted that there are many similarities between the needs of caregivers who are caring for adults with intellectual disability affected by dementia and those who are caring for other adults similarly affected. Both need targeted aid with early detection, help with accessing diagnostic services, counseling, and aid with planning for the future, as well as assistance with housing modifications, information about care management, and other special services that help with caregiving as dementia progresses. However, a barrier to meeting these needs is that often this group of caregivers is not considered in general planning and provision of needed dementia caregiver support services.
One last point, as it was noted this past week at the Alzheimer's Association International Conference 2018 in Chicago, neurodegeneration in adults with Down syndrome (an intellectual disability with high risk for Alzheimer's disease) can be biologically detected from about the early 30svi, which means the genesis of the disease begins early in this group and may lead to early onset usually noted in the early 50s. If undetected or untreated, the disease can have profound effects on adults with Down syndrome, typically leading to death within one to seven years following diagnosis. Given this, any initiatives designed to compensate for potential early neurodegeneration, increase brain health, and modify dysfunctional lifestyles early in adulthood can be beneficial. To this end, the NTG is pleased to report to the Council that it has entered into discussions with the AARP and the National Down Syndrome Society, to create an adaptation of the AARP's and the Global Council on Brain Health's existing campaign on brain health for use with the intellectual disability community. It is our goal that although research is still on-going as to the genesis of Alzheimer's disease, collectively we can aid families utilize now whatever information is available to delay the onset of cognitive decline and behavioral dysfunction in adults with Down syndrome (and other intellectual disability). It is our hope that the Council will support these efforts and incorporate designs and aims for these initiatives into the upcoming update of the National Plan.
In bringing these articles, reports, and initiatives to the attention of the Advisory Council on Alzheimer's Research, Care, and Services, we trust that this information and the recommendations related to caregiving and intellectual disability will be integrated into the next iteration of the National Plan Update -- especially as this group of adults and their caregivers are one of the 'populations disproportionally affected' as noted in the original National Plan.viiTo this end, the National Task Group stands ready to assist and contribute to such efforts.
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Ansberry, C. (2018). U.S. is running out of caregivers. Wall Street Journal, July 21, 2018, pp. A1, A10.
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https://www.msn.com/en-us/money/healthcare/america-is-running-out-of-family-caregivers-just-when-it-needs-them-most/ar-BBKRlWd?ocid=spartanntp
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Heller, T., Scott, H.M., Janicki, M.P., & 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 (e-print, ahead of publication). https://www.trci.alzdem.com/article/S2352-8737(18)30030-1/pdf
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Heller T, Scott H, Janicki MP, and the Pre-Summit Workgroup on Caregiving and Intellectual/Developmental Disabilities, Caregiving and intellectual and developmental disabilities and dementia. Report of the Pre-summit Workgroup on Caregiving and Intellectual and Developmental Disabilities. Chicago: Department of Disability and Human Development, University of Illinois at Chicago; 2017. Available at: https://aspe.hhs.gov/pdf-report/caregiving-and-intellectualand-developmental-disabilities-and-dementia-report-pre-summit-workgroup-caregiving-and-intellectual-and-developmental-disabilities.
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National Plan to Address Alzheimer's Disease. US Department of Health and Human Services. (2012).
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Carmona-Iragui, M. (July 2018). Plasma biomarkers diagnostic performance to diagnose Alzheimer's disease in Down syndrome. Paper presented at the AAIC/ISTRAART Down Syndrome PIA meeting, Chicago, Illinois (July 21, 2018).
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National Plan to Address Alzheimer's Disease. US Department of Health and Human Services.(2012).
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