Managing Care and Supports
Care and supports vary when dementia is present. Much depends upon the natural nature of the person, available social and environmental aspects, and resources. Care and supports, in formalized settings, or in situations with aided home-based care, are usually linked to an individualized person-centered dementia care plan. In this section, we offer a number of resource advancing various informational bits related to non-pharmacological interventions and post-diagnostic supports. Care management, to be effective, needs to anticipate staging - that is, the progression of dementia - as well as contextual resources.
We also provide more specific resources on other pages under the 'Resources' tab.
Advancing Research on Care Needs and Supportive Approaches for Persons With Dementia: Recommendations and Rationale
The first National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers was held on October 16-17, 2017, at the National Institutes of Health. In this paper, participants from the Summit Session on Research on Care Needs and Supportive Approaches for Persons with Dementia summarize the state of the science, identify gaps in knowledge, and offer recommendations to improve science and practice in long-term care. Prior to the National Research Summit, the report notes that a workgroup organized by the National Task Group on Intellectual Disabilities and Dementia Practices, the Rehabilitation Research and Training Center on Developmental Disabilities and Health, and the Alzheimer’s Association examined research gaps and made recommendations pertaining to older adults with ID. Although people with ID face many of the same age-related health issues that people without disabilities face, they may develop health issues at an earlier age. For them, the early signs of dementia are more difficult to diagnose and some have a shorter period of debilitation—especially those with Down syndrome. Also, most adults with ID, including those with dementia, live with parents, many of whom have provided lifelong caregiving. The unique challenges of adults with ID warrant inclusion of these individuals in general studies of dementia care. The National Task Group has developed practice guidelines and a national training curriculum drawing on the dementia and ID fields. Federal efforts can bridge the aging and disability service sectors as exemplified by the Administration on Community Living inclusion of ID in dementia funding. There is a rich literature on career caregivers and family support models in aging and ID that could inform dementia care practices, and also extensive research on general dementia caregiving that has the potential to inform practice in ID. The workgroup recommended conducting comparative effectiveness research to study different integrative support models involving aging and ID networks; increasing research on community programming that supports people living with family caregivers, as well as those living in a variety of supported living and group settings; and including persons with ID and dementia and their families in research on dementia care.
Source: Kolanowski, A., Fortinsky, R. H., Calkins, M., Devanand, D. P., Gould, E., Heller, T., Hodgson, N. A., Kales, H. C., Kaye, J., Lyketsos, C., Resnick, B., Schicker, M., & Zimmerman, S. (2018). Advancing Research on Care Needs and Supportive Approaches for Persons With Dementia: Recommendations and Rationale. Journal of the American Medical Directors Association, 19(12), 1047–1053. https://doi.org/10.1016/j.jamda.2018.07.005
Bibliography on Dementia Care Management and Intellectual Disability
An extensive bibliography on a range of published studies, articles, videos, guides, etc., on care management and adults with intellectual disability associated with older age and dementia. Articles, media, books, book chapters and 'grey' materials are included along with abstracts and sourcing information.
Community Care and Supports for People with Intellectual Disabilities Affected by Dementia
This version of the NTG guidelines, drawn from research, clinical experiences, and demonstrated best practices is a popularized document (see also Jokinen et al., 2013 for the journal version). The guidelines delineate what actions should be undertaken and are presented in a manner that reflects the progressive nature of prevalent dementias. To enable the development of the most appropriate and useful services and care management for adults with intellectual disabilities affected by dementia, the guidelines are based upon the dementia staging model generally accepted for practice among generic dementia services. The staging model follows the flow from a prediagnosis stage when early recognition of symptoms associated with cognitive decline are recognized through to early, mid, and late stages of dementia, and characterizes the expected changes in behavior and function. To aid with widespread efforts to detect possible symptoms of MCI or dementia, the guidelines cite the application of the NTG-Early Detection Screen for Dementia as a first step in documenting early signs of cognitive and functional changes among people with intellectual disabilities. The guidelines also provide information on non-pharmacological options for providing community care for persons affected by dementia as well as commentary on abuse, financial, managing choice and liability, medication, and nutritional issues.
Community-Based Housing and NPI-Care Practices for Adults with Intellectual Disability and Dementia" (#47061)
NTG Board members participated in the Alzheimer's Association International Conference - AAIC 2020 - with two 'Developing Topics' poster presentations. Matthew Janicki covered "Community-based housing and NPI-care practices for adults with intellectual disability and dementia". (#47061)
ABSTRACT: Aging persons with intellectual disability (ID) represent a vulnerable population with respect to cumulative neuropathological conditions, including dementia. Adults with Down syndrome (DS), a subset, have a recognized high risk for Alzheimer’s disease. With dementia present, how to provide post-diagnostic supports is a challenge. Dementia care group homes (GHs) along with NPIs are emerging as a mode for providing out-of-home community supports. Data from a longitudinal study provide insights on what care organizations need to consider when organizing specialty group home care. The study, begun in 2011, followed three co-located homes providing NPIs to 15 adults with dementia. Findings revealed trajectories of changes over time, housing need/function level patterning, and health status outcomes. Key findings noted 3 age-of-admission clusters (ꭕ=50.5; ꭕ=57.1; χ=66.8); overall mortality (ꭕage-death=65.4; ID=69.3; DS=56.3) – half of original entrants died within 7 years; age at entry (ꭕ= 59.1); years from entry to death (ꭕ= 5.4 yrs); LOS (ꭕ=49.4 months/4.12 yrs); morbidities (number of co-morbidities decreased among survivors). In same period, 8/15 deaths in GHs vs 3/15 deaths in Controls. NPI-related practices included day program activities (adults in mid- to later stages were engaged in regular off-site day activities that agency provided; adults with advanced dementia remained in homes), staffing patterns differed based on level of care – more staff assigned to homes with residents with advanced dementia, and staff training included dementia capable communications, engagement, and managing daily routines. Trends showed adults with Down syndrome were admitted to homes earlier but had more life-years in the GHs than older adults admitted at later age but who succumbed earlier to disease complications. Dementia care GHs should expect varied trajectories of decline; mortality linked to complexity of pre-existing conditions and progression of dementia; changes in the focus of care needs over time (including advanced dementia and end-of-life care). Dementia care GHs can enable provision of in-community group housing and quality care in accord with stage-defined functional changes and needs if structured in a planful way (factoring in dementia-stage, type of dementia, mortality expectations, health status, patterns of care needs, dementia-related behaviors, aging-related issues, and probable trajectories of decline of the residents).
Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to End-of-life Care in Advanced Dementia
Adults with intellectual disability are affected by dementia at equivalent and elevated rates, many surviving into advanced age. End of life care and support considerations come into play among these individuals when most are in the advanced stage of dementia. A preliminary report summarizing available literature and making initial recommendations was developed by a workgroup, reviewed by all conference participants and then was finalized by the workgroup. The International Summit on Intellectual Disability and Dementia produced a report on End of life care in advanced dementia that provides a synthesis statement which encompasses defining the state of advanced dementia, proposes use of palliative care services (including hospice) and recommends special efforts for enabling advanced directives and advance care planning prior to the extensive progression of dementia. The Summit further recommended that when aiding adults with advanced dementia, the following be undertaken: integrative efforts between intellectual disability and palliative care providers, specialized training for carers on end of life care and supports, and involvement of adults with intellectual disability early on in their advance care planning. The Consensus recommendations will ensure greater and more appropriate support at end of life for persons with intellectual disabilities and advanced dementia.
Source: McCallion P, Hogan M, Santos FH, McCarron M, Service K, Stemp S, Keller S, Fortea J, Bishop K, Watchman K, Janicki MP; Working Group of the International Summit on Intellectual Disability and Dementia. Consensus statement of the International Summit on Intellectual Disability and Dementia related to end-of-life care in advanced dementia. J Appl Res Intellect Disabil. 2017 Nov;30(6):1160-1164. doi: 10.1111/jar.12349. Epub 2017 May 9.
Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to Post-Diagnostic Support
Post diagnostic support (PDS) has varied definitions within mainstream dementia services and different health and social care organizations, encompassing a range of supports that are offered to adults once diagnosed with dementia until death. An international summit on intellectual disability and dementia held in Glasgow, Scotland in 2016 identified how PDS applies to adults with an intellectual disability and dementia. The Summit proposed a model that encompassed seven focal areas: post-diagnostic counseling; psychological and medical surveillance; periodic reviews and adjustments to the dementia care plan; early identification of behaviour and psychological symptoms; reviews of care practices and supports for advanced dementia and end of life; supports to carers/ support staff; and evaluation of quality of life. It also explored current practices in providing PDS in intellectual disability services. The Summit concluded that although there is limited research evidence for pharmacological or non-pharmacological interventions for people with intellectual disability and dementia, viable resources and guidelines describe practical approaches drawn from clinical practice. Post diagnostic support is essential, and the model components in place for the general population, and proposed here for use within the intellectual disability field, need to be individualized and adapted to the person's needs as dementia progresses. Recommendations for future research include examining the prevalence and nature of behavioral and psychological symptoms (BPSD) in adults with an intellectual disability who develop dementia, the effectiveness of different non-pharmacological interventions, the interaction between pharmacological and non-pharmacological interventions, and the utility of different models of support.
Source: Dodd K, Watchman K, Janicki MP, Coppus A, Gaertner C, Fortea J, Santos FH, Keller SM, Strydom A. Consensus statement of the international summit on intellectual disability and Dementia related to post-diagnostic support. Aging Ment Health. 2018 Nov;22(11):1406-1415. doi: 10.1080/13607863.2017.1373065. Epub 2017 Sep 7.
A historical article that covers the Edinburgh Principles -- seven statements identifying a foundation for the design and support of services to people with intellectual disability affected by dementia, and their carers. The accompanying guidelines and recommendations document provide an elaboration of the key points associated with the Principles and is structured toward a four-point approach: (a) adopting a workable philosophy of care; (b) adapting practices at the point of service delivery; (c) working out the coordination of diverse systems; and (d) promoting relevant research. Stems from an interdisciplinary collective meeting held in Edinburgh, Scotland convened to produce the principles.
Effectively training professional caregivers to screen and refer persons with dementia and intellectual/developmental disability
Walaszek et al. trained direct care workers, case managers, health-care providers, and other social services personnel on using the NTG-EDSD. After training, attendees reported a marked increase in confidence in their ability to track various health circumstances and detect functional decline in their clients. Authors noted that social and health-care professionals can learn to document signs of cognitive decline in adults with ID using the NTG-EDSD. The study participants were highly satisfied with the training, experienced an increase in confidence in their care of persons with ID, and found the NTG- EDSD feasible to use.
End-of-life and Down syndrome: A companion guidebook to aging and down syndrome: A health and well-being guidebook
This guidebook provides guidance for the crossroads and decisions that arise in later life and at the end of life. The information covered aims to be practical and supportive, with guidance and resources to help families, caregivers, care partners, and others. The intent is to help readers recognize and understand the
reasons that planning for your own future and having a backup plan for care of an adult Down syndrome at the end of life, including where dementia is present.
FAQ on Dementia and ID
NTG Frequently Asked Questions... A series of questions and answers related to intellectual disability and dementia. This publication offers an introduction to intellectual disability and dementia, answering some basic questions about adults with intellectual/developmental disabilities affected by Alzheimer's disease or other dementias. Updated in 2022.
Guidance Document on Dementia in Persons with Intellectual Disability
This report, by the Irish Faculty of Learning Disability Psychiatry, provides information on persons with intellectual disability and dementia for their families and offers guidance to persons working in clinical settings. The report provides a series of recommendations related to the assessment and management of suspected or diagnosed cognitive decline or dementia. Although the report is designed from the Republic of Ireland services environment, its information applies to any country's care structures. The report contains a number of recommendations addressing plans for recognition and management of dementia, e baseline function screening, use of a multidisciplinary team, clinicians working together to assess and communicate the diagnosis of dementia, involving families and persons with dementia in discussions, providing comprehensive services, encouraging aging in place, providing palliative care, and ensuring that trainees specializing in psychiatry of intellectual disability should have training in diagnosis and management of dementia.
Guidelines for Dementia-related Health Advocacy for Adults with ID and Dementia
These NTG guidelines were developed to help caregivers, whether family members or staff, to prepare for and advocate during health visits. The NTG developed these guidelines and recommendations for dementia-related health advocacy preparation and assistance that can be undertaken by provider and advocacy organizations. With increasing numbers of adults with intellectual disability living into old age the end result is that more such adults are and will be experiencing age-related health problems and also exhibiting symptoms of cognitive impairment and decline, some attributable to dementia. Early symptoms of dementia can be subtle and in adults with intellectual disability are often masked by their lifelong cognitive impairment, combined with the benign effects of aging. Caregivers need to recognize and communicate symptoms, as well as find appropriate practitioners familiar with the medical issues presented by aging adults with lifelong disabilities. Noting changes in behavior and function and raising suspicions with a healthcare practitioner, during routine or ad hoc visits, can help focus the examination and potentially validate that the decline is the result of the onset or progression of dementia. It can also help in ruling out reversible conditions that may have similar presentation of symptoms typical for Alzheimer’s disease and other forms of dementia.