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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-Juky-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. 2019 Sep 08; 2(1):51-60. https://doi.org/10.26407/2019jrtdd.1.18

Copyright ©2019 Janicki, M.P., Jokenin, N.S., Marsack Topolewski, C., Keller, S.M. 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:
Matthew P. JANICKI, Ph.D
Department of Disability and Human Development,
University of Illinois at Chicago
1640 West Roosevelt Road, Chicago, IL 60608 USA
E-mail: mjanicki@uic.edu

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