Experiences of Family Caregivers of Individuals with ID and Dementia

Christina N. MARSACK-TOPOLEWSKI1,
Anna M. BRADY2

1Eastern Michigan University College of Health and Human Services,
School of Social Work, Michigan, USA
2Erskine College, Special Education Department, South Carolina, USA
E-mail: ctopole1@emich.edu
Received: 04-May-2020
Revised: 28-May-2020
Accepted: 02-June-2020
Online first: 03-June-2020

Abstract

Introduction: Dementia poses a number of impairments in cognitive functioning impacting everyday operational tasks and functions. Individuals with intellectual disability (ID) may experience dementia earlier and at a greater rate than the general population. Dementia can pose complex challenges for individuals with ID and their caregivers.

Aim: A qualitative phenomenological study was used to examine the lived experiences of caregivers of individuals diagnosed with both ID and dementia.

Method: Individual interviews were conducted among six participants, who were all family caregivers of individuals diagnosed with both ID and dementia.

Results: Based on the results from the content analysis of interview responses, four themes emerged: (a) difficulty getting a dementia diagnosis, (b) barriers to obtaining services, (c) caregiving realities and challenges, and (d) rewards of caregiving.

Implications for Practice: To support caregivers, practitioners should be adequately trained on this dual diagnosis to assess the support needs in helping caregivers obtain adequate services.

Conclusion: As individuals with ID continue to live longer and age, many will experience dementia. Caregivers of individuals with ID and dementia are often an overlooked, vulnerable population. Practitioners should be aware of their needs in order to provide adequate support to this caregiving population and individuals with ID and dementia.

Key words: caregiving, dementia, intellectual disability, developmental disabilities

Citation: Marsack-Topolewski, N. C., Brady, M. A. Experiences of Family Caregivers of Individuals with ID and Dementia. Journal for ReAttach Therapy and Developmental Diversities, 2020 Jul 05; 3(1):54-64. https://doi.org/10.26407/2020jrtdd.1.29

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Toward a Research Agenda on the Impact of Dementia upon Carers of Adults with Intellectual Disability

Matthew P. JANICKI1,
Nancy S. JOKENIN2,
Christina MARSACK-TOPOLEWSKI3,
Seth M. KELLER4
1University of Illinois at Chicago, USA
2University of Northern British Columbia,
Prince George, BC, Canada
3 Eastern Michigan University, Ypsilanti, MI USA
4 American Academy of Developmental Medicine
and Dentisty, Lumberton, NJ, USA
E-mail: mjanicki@uic.edu
Received: 25-June-2019
Revised: 12-July-2019
Accepted: 15-July-2019
Online first: 17-July-2019

Abstract

The World Health Organization’s report, Dementia: A Public Health Priority, noted that the number of people affected by dementia will continue to increase and called for nations to address the impact of dementia upon their populations. This included considering the impact on carers providing for adults with intellectual disability affected by Alzheimer’s disease and related dementias. Within the context of the USA’s dementia plan, a national group has advocated that the needs and interests of adults with dementia and their carers be taken into account when dementia-related research is undertaken. In preparation for the second national summit on caregiving and dementia to be held in the USA in 2020, this article describes an effort undertaken by this national group to identify needed research related to carers of adults with intellectual disability. The group identified three focal areas for the summit to consider: the effect of behavioral and psychological symptoms of dementia on carers, challenges for carers of adults with intellectual disability when dementia becomes evident, and barriers that carers face when accessing supports. A list of recommended topics to be researched is provided.

Key words: Alzheimer’s disease, carers, dementia, Down syndrome, intellectual disability, national plans

Citation: Janicki, M.P., Jokenin, N.S., Marsack Topolewski, C., Keller, S.M. Toward a Research Agenda on the Impact of Dementia upon Carers of Adults with Intellectual Disability. Journal for ReAttach Therapy and Developmental Diversities https://doi.org/10.26407/2019jrtdd.1.18

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