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Appears in Collections:Faculty of Social Sciences Journal Articles
Peer Review Status: Refereed
Title: Perspectives on family caregiving of people aging with intellectual disability affected by dementia: Commentary from the International Summit on Intellectual Disability and Dementia
Author(s): Jokinen, Nancy
Gomiero, Tiziano
Watchman, Karen
Janicki, Matthew
Hogan, Mary
Larsen, Frode
Berankova, Anna
Santos, Flavia
Service, Kathy
Crowe, Jim
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Keywords: Dementia
Down syndrome
intellectual disability
Issue Date: 31-Dec-2018
Date Deposited: 9-Mar-2018
Citation: Jokinen N, Gomiero T, Watchman K, Janicki M, Hogan M, Larsen F, Berankova A, Santos F, Service K & Crowe J (2018) Perspectives on family caregiving of people aging with intellectual disability affected by dementia: Commentary from the International Summit on Intellectual Disability and Dementia. Journal of Gerontological Social Work, 61 (4), pp. 411-431.
Abstract: This article, an output of the 2016 International Summit on Intellectual Disability and Dementia, examines familial caregiving situations within the context of a support-staging model for adults with intellectual disability (ID) affected by dementia. Seven narratives offer context to this support-staging model to interpret situations experienced by caregivers. The multi-dimensional model has two fundamental aspects: identifying the role and nature of caregiving as either primary (direct) or secondary (supportive); and defining how caregiving is influenced by stage of dementia. We propose staging can affect caregiving via different expressions: (1) the ‘diagnostic phase’, (2) the ‘explorative phase’, (3) the ‘adaptive phase’, and (4) the ‘closure phase’. The international narratives illustrate direct and indirect caregiving with commonality being extent of caregiver involvement and attention to the needs of an adult with ID. We conclude that the model is the first to empirically formalise the variability of caregiving within families of people with ID that is distinct from other caregiving groups, and that many of these caregivers have idiosyncratic needs. A support-staging model that recognises the changing roles and demands of carers of people with intellectual disability and dementia can be useful in constructing research, defining family-based support services, and setting public policy.
DOI Link: 10.1080/01634372.2018.1454563
Rights: This item has been embargoed for a period. During the embargo please use the Request a Copy feature at the foot of the Repository record to request a copy directly from the author. You can only request a copy if you wish to use this work for your own research or private study. This is an Accepted Manuscript of an article published by Taylor & Francis Group in Journal of Gerontological Social Work on 27 Mar 2018, available online: 

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