Caregivers’ Perceptions of Family Quality of Life of Individuals with Developmental Disabilities Comorbid with Dementia: A Pilot Study

Christina N. MARSACK-TOPOLEWSKI
Preethy S. SAMUEL

Eastern Michigan University, School of Social Work
Department of Health Care Sciences, Eugene Applebaum College of Pharmacy and Health Sciences, Detroit, Michigan, USA
E-mail: ctopole1@emich.edu
Received: 17-October-2020
Revised: 16-November-2020
Accepted: 20-November-2020
Online first: 21-November-2020

Abstract

Introduction: Although individuals with intellectual/ developmental disabilities (I/DD) are living longer than in the past, they also are exposed to age-related changes in health and well-being. They are prone to acquire dementia that often manifests earlier and more frequently than in the general population. However, there is sparse knowledge on the daily challenges that affect the quality of life of the individuals with I/DD and comorbid dementia and their family caregivers.

Aim: This pilot study examined strengths and challenges of individuals with dual diagnoses of I/DD and dementia using the family quality of life (FQOL) framework.

Method: Cross-sectional data was gathered from a convenience sample of family caregivers using a web-based electronic survey.

Objectives: This study aims to identify the common and differential elements of the DLD (SLI) and LD through a quantitative and qualitative analysis.

Results: The variables of interest in this study were the levels of importance and satisfaction attributed to the nine FQOL domains, and overall FQOL. The mean level of importance was higher than the associated ratings of satisfaction in eight of the nine domains, with an overall importance mean of 4.15 and satisfaction mean of 3.28. Analysis of the open-ended comments indicated that the negative impact of social isolation, compound caregiving, and dynamically changing caregiving needs on overall FQOL was balanced by participants’ values and beliefs.

Results: A statistical analysis (Student’s t test) was conducted in order to compare the children in LD and DLD groups. The data obtained from this analysis along with LSA indicate that the language skills differ between the two groups in the following aspects: lexical, pragmatic, semantic, syntactic, morphological and phonological. Significant differences (p < .05) occur for the start of speech therapy age, phonological disorder, passive vocabulary and language psychological age. Results for active vocabulary did not indicate a statistical difference between LD and DLD children.

Implication for practice: The discrepancies in the FQOL domains pertaining to formal and informal services and social supports elucidate a need to empower families with high caregiving needs through research, practice and policy.

Conclusion Providers should be cognizant of the needs of individuals with I/DD and dementia comorbid, as well as the needs of their family caregivers.

Key words: Aging families, Caregiving, Dementia, Developmental Disability, Family quality of life, Intellectual Disability

Citation: Marsack-Topolewski, N. C., Samuel, S. P. Caregivers’ Perceptions of Family Quality of Life of Individuals with Developmental Disabilities Comorbid with Dementia: A Pilot StudyJournal for ReAttach Therapy and Developmental Diversities, 2020 Dec 25; 3(2): 56-70. https://doi.org/10.26407/2020jrtdd.1.38

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Study for Caregivers of Individuals with ID and Dementia

CAREGIVER BURDEN, SOCIAL SUPPORT, AND QUALITY OF LIFE AMONG CAREGIVERS OF INDIVIDUALS WITH INTELLECTUAL DISABILITIES AND DEMENTIA

Be a part of a research study investigating experiences and quality of life among caregivers of individuals with both intellectual and/or developmental disabilities and dementia. The purpose of this study is to examine the experiences of caregivers and caregivers’ quality of life. To be included, you must be over 18 years of age and a caregiver of an individual with both an intellectual disability AND dementia.
If you meet this criteria, you are eligible to participate in this study. Interested participants will be entered into a raffle to receive a $20 gift card. The study will be conducted using an online survey. For interested participants, a follow up interview may be conducted over the phone
or in-person to obtain more information regarding the experiences and family quality of life.
If you are interested in participating, please Visit the following link:
https://caregiving.sjc1.qualtrics.com/jfe/form/SV_0OFUQ21INkXb6br
Or contact:
Dr. Christina Marsack-Topolewski
Assistant Professor, Eastern Michigan University
Ctopole1@emich.edu

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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

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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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