Young-onset dementia: A systematic review of the psychological and social impact on relatives.

Wiggins, M; McEwen, A; Sexton, A

Young-onset dementia: A systematic review of the psychological and social impact on relatives.

Wiggins, M McEwen, A

Sexton, A

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Publisher:: ELSEVIER IRELAND LTD
Publication Type:: Journal Article
Citation:: Patient Educ Couns, 2023, 107, pp. 107585
Issue Date:: 2023-02

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Field	Value	Language
dc.contributor.author	Wiggins, M
dc.contributor.author	McEwen, A https://orcid.org/0000-0001-8705-1190
dc.contributor.author	Sexton, A https://orcid.org/0000-0001-8749-1639
dc.date.accessioned	2023-11-06T23:20:42Z
dc.date.available	2022-11-28
dc.date.available	2023-11-06T23:20:42Z
dc.date.issued	2023-02
dc.identifier.citation	Patient Educ Couns, 2023, 107, pp. 107585
dc.identifier.issn	0738-3991
dc.identifier.issn	1873-5134
dc.identifier.uri	http://hdl.handle.net/10453/173102
dc.description.abstract	OBJECTIVE: Young-onset dementia (YOD) has significant impact for the affected person, but also has far-reaching effects on the family. Additionally, biological relatives have an increased genetic risk of developing the condition themselves. This review aimed to identify the psychological and social impacts of YOD in the family, for asymptomatic relatives. METHODS: A systematic review of key databases for empirical studies about the lived experience of biological relatives at risk for YOD was performed. Data was collated and interpreted via narrative synthesis. RESULTS: The majority of the nineteen included studies were qualitative and explored the experiences of children with a parent with YOD. Five themes were developed: (1) Onset of YOD disrupts family functioning (2) Emotional impact is significant and varied (3) Uncertain future (due to uncertainty of diagnosis, care-giving responsibilities, and their own increased genetic risk) (4) Lack of visibility in health care and society (5) Coping strategies include physical/cognitive distancing, and emotion-focused coping. CONCLUSION: Our findings demonstrate a diagnosis of YOD significantly impacts the lives of relatives, yet their experiences and needs often go unnoticed. PRACTICE IMPLICATIONS: We present a practical framework of questions and strategies for care of relatives, mapped to the self-regulation model of genetic counselling.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	ELSEVIER IRELAND LTD
dc.relation.ispartof	Patient Educ Couns
dc.relation.isbasedon	10.1016/j.pec.2022.107585
dc.rights	info:eu-repo/semantics/embargoedAccess
dc.subject	11 Medical and Health Sciences, 17 Psychology and Cognitive Sciences
dc.subject.classification	Public Health
dc.subject.classification	4203 Health services and systems
dc.subject.mesh	Child
dc.subject.mesh	Humans
dc.subject.mesh	Dementia
dc.subject.mesh	Social Change
dc.subject.mesh	Parents
dc.subject.mesh	Family
dc.subject.mesh	Adaptation, Psychological
dc.subject.mesh	Humans
dc.subject.mesh	Dementia
dc.subject.mesh	Adaptation, Psychological
dc.subject.mesh	Family
dc.subject.mesh	Parents
dc.subject.mesh	Social Change
dc.subject.mesh	Child
dc.subject.mesh	Child
dc.subject.mesh	Humans
dc.subject.mesh	Dementia
dc.subject.mesh	Social Change
dc.subject.mesh	Parents
dc.subject.mesh	Family
dc.subject.mesh	Adaptation, Psychological
dc.title	Young-onset dementia: A systematic review of the psychological and social impact on relatives.
dc.type	Journal Article
utslib.citation.volume	107
utslib.location.activity	Ireland
utslib.for	11 Medical and Health Sciences
utslib.for	17 Psychology and Cognitive Sciences
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Health
pubs.organisational-group	/University of Technology Sydney/Faculty of Health/Graduate School of Health
pubs.organisational-group	/University of Technology Sydney/Faculty of Health/Graduate School of Health/GSH.Genetic Counselling
utslib.copyright.status	open_access	*
utslib.copyright.embargo	2024-02-15T00:00:00+1000Z
dc.date.updated	2023-11-06T23:20:41Z
pubs.publication-status	Published
pubs.volume	107

Abstract:

OBJECTIVE: Young-onset dementia (YOD) has significant impact for the affected person, but also has far-reaching effects on the family. Additionally, biological relatives have an increased genetic risk of developing the condition themselves. This review aimed to identify the psychological and social impacts of YOD in the family, for asymptomatic relatives. METHODS: A systematic review of key databases for empirical studies about the lived experience of biological relatives at risk for YOD was performed. Data was collated and interpreted via narrative synthesis. RESULTS: The majority of the nineteen included studies were qualitative and explored the experiences of children with a parent with YOD. Five themes were developed: (1) Onset of YOD disrupts family functioning (2) Emotional impact is significant and varied (3) Uncertain future (due to uncertainty of diagnosis, care-giving responsibilities, and their own increased genetic risk) (4) Lack of visibility in health care and society (5) Coping strategies include physical/cognitive distancing, and emotion-focused coping. CONCLUSION: Our findings demonstrate a diagnosis of YOD significantly impacts the lives of relatives, yet their experiences and needs often go unnoticed. PRACTICE IMPLICATIONS: We present a practical framework of questions and strategies for care of relatives, mapped to the self-regulation model of genetic counselling.

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http://hdl.handle.net/10453/173102