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The experiences of those affected by parental young onset dementia: A qualitative systematic literature review

Cartwright, AV; Stoner, CR; Pione, RD; Spector, A; (2021) The experiences of those affected by parental young onset dementia: A qualitative systematic literature review. Dementia 10.1177/1471301220988231. (In press). Green open access

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Abstract

Aim: To develop understanding of the lived experiences of children of people living with young onset dementia, defined as individuals both under and over the age of 18 years whose parent was diagnosed with dementia before the age of 65 years. Method: A critical appraisal and thematic synthesis of the available qualitative literature regarding the lived experience of individuals whose parent has a diagnosis of young onset dementia. A threestage approach for conducing thematic synthesis was followed. Results: 15 articles were included in the review. Four analytical themes and 11 subthemes were found. The analytical themes were ‘making sense of dementia’, ‘impact of dementia’, ‘coping’ and ‘support’. Conclusions: The experiences of those affected by parental young onset dementia vary widely. There is a lack of knowledge and understanding of young onset dementia by professionals and the public, and a scarcity of appropriate support. This has clinical implications for professionals working with families affected by young onset dementia, in particular with regards to service design and delivery.

Type: Article
Title: The experiences of those affected by parental young onset dementia: A qualitative systematic literature review
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1177/1471301220988231
Publisher version: https://doi.org/10.1177/1471301220988231
Language: English
Additional information: This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page
Keywords: young onset dementia, lived experience, qualitative, children, family carers
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences > Clinical, Edu and Hlth Psychology
URI: https://discovery.ucl.ac.uk/id/eprint/10121400
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