ArticleDementia (London, England)2023
"Give me the knowledge, and I can do what I want with it, it's my right and my choice": Triangulated perspectives on the disclosure of young onset dementia.
Article in Dementia (London, England), 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
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1 citing paper in PubMed, 0 citations in OpenAlex.
- Complex atypical caregiving: navigating the margins of unique caregiver roles and burdens.Frontiers in psychology · 2026Article
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Authors and funding
4 authors at 2 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionReceiving a diagnosis of young onset dementia is particularly distressing; the person under 65 years is often in employment, with financial commitments, young children, and an active social life. Some of the stress experienced by younger people experiencing cognitive changes can be reduced by an early and accurate diagnosis, but this is contingent on the timing of disclosure and a process which is sensitive and appropriate to the person. The study aim was to explore experiences of giving and receiving a diagnosis of young onset dementia, by triangulating the perspectives of the key parties involved.
methodsA qualitative design was employed, using semi-structured interviews. Participants (
resultsAll participant groups agreed on key aspects of good disclosure practice, with two overarching themes: The optimal conditions for disclosure, and how best to disclose a diagnosis. Positive experiences of disclosure were prefaced on having the appropriate space and time; having a support person present; clearly labelling the diagnosis; providing appropriate information at the right pace. Other findings include recommendations for longer appointment times, offering additional support for young families, and for carers of people with atypical presentations (e.g. frontotemporal dementia).
conclusionMany people with young onset dementia had unsatisfactory disclosure experiences. Health and social care professionals should provide a 'pre-disclosure' appointment, elicit the amount of information the person may want at the point of disclosure of the diagnosis, balance truth and hope, provide contact details for follow-up, and overall be mindful of the individual in front of them. While young onset dementia may be a life-altering diagnosis, a disclosure meeting which is sensitively undertaken can increase the person's agency, coping ability, and ultimately empower them to live well with their diagnosis.
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