dedup_wf_001--1fb7932d8f197c7fc5219e6ea5d83425

Caregivers of individuals with Alzheimer’s disease require support across the full disease trajectory. The aim of this study was to develop a conceptual framework of caregiving phases across the Alzheimer’s disease and caregiving trajectories and the corresponding caregiver support needs. Constructivist grounded theory informed data collection and analysis. 40 spousal (n = 20) and adult children (n = 20) caregivers were interviewed. Recruitment was completed when theoretical saturation was achieved. Member-checking interviews occurred with 10 participants. Participants described five phases of caregiving related to their responsibilities to support people with Alzheimer’s disease including monitoring initial symptoms, navigating their diagnosis, assisting with instrumental activities of daily living, assisting with basic activities of daily living, and preparing for the future. Support (i.e., informational, emotional, instrumental, and appraisal) needs were often specific to the phase of care. For example, during the initial symptoms phase, caregivers reported needing information to assist them to distinguish normal aging from cognitive impairment. In contrast, during the preparing for the future phase, caregivers emphasized support for accessing institutional long term-care placement. Findings highlight caregiver-identified phases of caregiving and corresponding support needs across the Alzheimer’s disease trajectory. Findings can inform the development, evaluation and implementation of programs and services to meet caregivers’ changing needs across the disease trajectory.IMPLICATIONS FOR REHABILITATIONCaregivers for individuals with Alzheimer’s disease can experience distinct caregiving phases across the disease trajectory with corresponding support needs.Rehabilitation clinicians can use these findings to help caregivers navigate available supports at appropriate times to ensure that their needs are addressed across the disease trajectory.Occupational therapists and other rehabilitation professionals can enable caregivers with timely education and support as they progress across the disease trajectory. Caregivers for individuals with Alzheimer’s disease can experience distinct caregiving phases across the disease trajectory with corresponding support needs. Rehabilitation clinicians can use these findings to help caregivers navigate available supports at appropriate times to ensure that their needs are addressed across the disease trajectory. Occupational therapists and other rehabilitation professionals can enable caregivers with timely education and support as they progress across the disease trajectory.

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PID https://www.doi.org/10.6084/m9.figshare.12850181.v1
PID https://www.doi.org/10.6084/m9.figshare.12850181
PID https://www.doi.org/10.1080/09638288.2020.1788655
URL http://dx.doi.org/10.6084/m9.figshare.12850181.v1
URL https://www.ncbi.nlm.nih.gov/pubmed/32687722
URL http://dx.doi.org/10.6084/m9.figshare.12850181
URL http://dx.doi.org/10.1080/09638288.2020.1788655
URL https://academic.microsoft.com/#/detail/3042811701
URL https://www.tandfonline.com/doi/pdf/10.1080/09638288.2020.1788655
URL https://pubmed.ncbi.nlm.nih.gov/32687722/
URL https://www.tandfonline.com/doi/full/10.1080/09638288.2020.1788655
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Access Right Restricted
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Author Kristina M. Kokorelias, 0000-0002-1277-472X
Author Monique A. M. Gignac, 0000-0003-4445-3274
Author Gary Naglie, 0000-0002-6274-0894
Author Nira Rittenberg, 0000-0001-9164-1791
Author Jennifer MacKenzie, 0000-0001-6360-5574
Author Samantha D’Souza, 0000-0002-3436-9151
Author Jill I. Cameron, 0000-0003-4161-1572
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Collected From figshare; Datacite; Crossref; Microsoft Academic Graph
Hosted By Disability and Rehabilitation; figshare
Publication Date 2020-01-01
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Language UNKNOWN
Resource Type Other literature type; Article
keyword FOS: Sociology
keyword FOS: Biological sciences
keyword FOS: Health sciences
system:type publication
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Source https://science-innovation-policy.openaire.eu/search/publication?articleId=dedup_wf_001::1fb7932d8f197c7fc5219e6ea5d83425
Author jsonws_user
Last Updated 26 December 2020, 06:51 (CET)
Created 26 December 2020, 06:51 (CET)