Care Management

These guidelines, drawn from research and clinical experiences and demonstrated best practices, note what actions should be undertaken related to dementia in adults with intellectual disability. Framed by the staging model generally accepted for practice among generic dementia services, these guidelines 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. 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 disability and provide information on nonpharmacological 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. These guidelines are the journal version.

Source: Jokinen, N., Janicki, M.P., Keller, S.M., McCallion, P., Force, F.T., and the National Task Group on Intellectual Disabilities and Dementia Practices. Journal of Policy and Practice in Intellectual Disabilities, 2013.

This white paper developed by RTI International (authors: Gorden, K. et al.) presents the state of services and support system for persons with intellectual disability who have dementia. It was designed to summarize the state of art in 2015 with a recognition that states will have to provide services for aging adults who have dementia within person-centered and community integrative aspects for the purpose of participation in HCBS funding.

Educational presentation given at the Winter Meeting of ACCSES held in Phoenix, AZ, on January 16, 2023. The presentation covers the US National Plan to Address Alzheimer's, some basics about dementia and particulars about dementia and intellectual disability, planning considerations for organizing dementia support service, and agency dementia services and administrative issues. This is Part 1 of a three-part presentation session (Given by Dr. Matthew P. Janicki).

A comprehensive guide for family caregivers originally created by the NTG. The NTG aided the Nebraska Council on Developmental Disabilities and the Munroe-Meyer Institute in Omaha with this adaptation of the Intellectual Disability and Dementia: A Caregiver's Resource Guide for Nebraskans, a project led by Janet Miller of the University of Nebraska's Medical Center.

This is a resource guide for family caregivers, and others, that explains the basics of dementia, caregiving aids, and sources of help.  The guide was developed for use in Rhode Island, but is applicable in any state.  This is the main guide; see also the guide on 'health' and 'talking about dementia'. ​

This guide and issued by the Administration on Community Living provides background and practical strategies that can be used by professionals—from both the intellectual and developmental disability and aging communities—when working with individuals living with intellectual and developmental disabilities (IDD) and dementia. The guide is organized into 12 sections that address different aspects of identifying and providing services to individuals living with IDD and dementia or who are at risk of developing dementia. Included also are tools professionals can share with family caregivers or other caregivers who work with individuals living with IDD and dementia.

Link to web source page: https://www.rti.org/publication/intellectual-and-developmental-disabilities-and-dementia
Source: McCallion, P., Knowles, M., & Gould, E. (2019). Intellectual and developmental disabilities and dementia: Practical strategies for professionals. National Alzheimer’s and Dementia Resource Center for the U.S. Administration on Aging.

An illustrated booklet, produced by Down Syndrome Scotland, which explains what it means when a family member has dementia. Designed for caregivers of persons with an intellectual disability.

This recently updated second edition of Mental Wellness in Adults with Down Syndrome reflects both the breadth of the authors' knowledge - acquired as co-founders of the first medical clinic dedicated solely to the care of adults with Down syndrome - and the number of psychosocial issues and mental disorders that can affect people with Down syndrome. It is a 'go-to' guide for parents, health practitioners, and caregivers who support teens and adults with Down syndrome. Its focus is on mental wellness and the understanding and appreciation that both the strengths and challenges of people with Down syndrome are the key to promoting good mental health. Readers will learn to distinguish between bona fide mental health issues and common characteristics of Down syndrome and whether these are quirks or coping strategies. For example, although talking to oneself can be a sign of psychosis, many adults with Down syndrome use self-talk as an effective problem-solving strategy. The second edition includes new chapters on sensory issues and regression, chapters on communication, concrete thinking, and visual memory, and an extensively updated chapter on Alzheimer's disease citing new research. Other chapters cover a range of conditions and assessment and treatment options.
Source: Dennis McGuire, PhD & Brian Chicoine, MD, (2021), Woodbine House Publishing (with 2nd Ed. rights for self-publish reverted to the authors), 588pp.

This 42-page summative report is a national strategy for enabling adults with ID affected by Dementia to remain in their community and receive quality supports. The report offers 20 recommendations for the improvement of services nationally and locally and suggests that its findings and recommendations be considered and integrated into the reports and plans being developed by the federal Advisory Council on Alzheimer's Research, Care, and Services -- under the National Alzheimer's Project Act. The document reviews the main issue facing adults with intellectual disabilities as they age when they are affected by dementia, as well as their families and provider organizations. The document is composed of 7 sections (Charge and Purpose, The Population, Challenges Facing the Population, Community Services, Education and Training, Financing, and Possible Solutions) and the National Dementia and Intellectual Disabilities Action Plan.

This practical guideline for persons who provide supports and services for people with Down Syndrome and dementia was developed by Dr. Gerald Kerins at the University of Connecticut Health Center (May 1998]. It was posted by the Connecticut Department of Developmental Services.

Report produced by the National Council on Disability reviewing effects of COVID-19 in congregate care settings

NTG Board members participated in the Alzheimer's Association International Conference - AAIC 2020 - with two 'Developing Topics' poster presentations.  These presentations are cited in a Fall 2020 issue of Alzheimer's & Dementia: The Journal of the Alzheimer's Association. Nancy Jokinen, Kathryn Service, Christine Marsack-Topolewski, and Matthew Janicki addressed a "Support-staging model for caregivers of adults with intellectual disability affected by dementia". (#47273)

ABSTRACT:  Adults with intellectual disability (ID) and dementia are a sub-population of persons who are often un- or underserved. Most adults with ID are integrated within the general community (living autonomously, or in apartments/group residences); but significant numbers also reside with their families, particularly adults with Down syndrome. Family help/counseling approaches, such as the New York University-Caregiver Intervention (NYUCI), might benefit from a support-staging model assessment focus on what specific aid a family requires to meet their needs. Patterns of such needs have been identified that can help with providing dementia-capable care.  Objective needs include: (a) information on signs and symptoms, (b) diagnostic advice, (c) understanding behavioral changes and managing dementia-related behaviors, (d) adapting homes, (e) determining daily routines most conducive to calming, (f) planning for the future, (g) finding and navigating resources, and (h) responding to end-of-life needs.  Subjective needs include: (a) being informed at time of diagnosis and throughout the course of dementia, (b) coping with a profound sense of loss from knowing the diagnosis, (c) fearing the future [including financial concerns], (d) formulating long-term plans, (e) accessing community-based coordinated care, (f) facing difficulties from the medical community, (g) feeling overwhelmed by caregiving demands, (h) feeling a sense of isolation and abandonment, and (i) facing end-of-life issues.  A working group emanating from the 2016 Glasgow Summit on Intellectual Disability and Dementia organized a schema encapsulating these concerns into a support-staging model. The schema suggested four fluid stages: Diagnostic (seeking cause of changes in function, abilities, personality), Explorative (exploring dementia capable interventions), Adaptive (coping with and managing the symptoms/changes), and Closure (resolving / relief from responsibilities). Using this schema, a process (utilizing the NYUCI) is underway to operationalize a support-staging assessment instrument which would enable counseling staff to frame the state of a family’s concerns, build relationships through this knowledge of the caregiver and provide tailored services to them.  The outcome will enable systematic coding and organizing both objective and subjective data so that specific interventions and counseling can be adapted to meet both intermittent and continuous caregiver needs.