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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

Copyright ©2020 Marsack-Topolewski, N. C., Brady, M. A. This is an open-access article distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International License (CC BY-NC 4.0)

Corresponding address:
Christina N. MARSACK-TOPOLEWSKI
Eastern Michigan University, College of Health and Human Services,
School of Social Work, 206 H Marshall, Ypsilanti,
Michigan 48197 USA
E-mail: ctopole1@emich.edu

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