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- Fox, Siobhan, et al.
(författare)
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"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
- 2023
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Ingår i: Dementia. - : Sage Publications. - 1471-3012 .- 1741-2684. ; 22:8, s. 1757-1775
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Tidskriftsartikel (refereegranskat)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 (N = 47) included people with young onset dementia (n = 10), family members (n = 12), and health and social care professionals (n = 25). Thematic analysis and triangulation enabled identification of overall themes across different participant groups.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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| 2. |
- Kilty, Caroline, et al.
(författare)
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Young onset dementia : implications for employment and finances
- 2023
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Ingår i: Dementia. - : Sage Publications. - 1471-3012 .- 1741-2684. ; 22:1, s. 68-84
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Tidskriftsartikel (refereegranskat)abstract
- Background: People with young onset dementia face unique challenges. Notably, at time of symptom presentation, many people affected by young onset dementia are still employed with significant financial obligations. The aim of this study was to explore the specific impact that young onset dementia has on continued employment and finances and to identify ways to optimise post-diagnostic approaches in this regard.Methods: Purposive sampling, with a maximum variation technique, was used to recruit a small but diverse range of people with young onset dementia in Ireland. In-depth semi-structured interviews were conducted, and data were analysed using Reflexive Thematic Analysis. In total, 22 interviews were conducted with 10 people with young onset dementia and 12 spouses and children. Two themes were constructed: impact of young onset dementia on (I) employment and (II) finances.Findings: Participants' lived accounts showed the devastating effect of a diagnosis of young onset dementia on working life, and the resultant financial, social, and psychological consequences. Participants reported having to leave paid employment early, reported losing contracts and retiring on medical grounds. There were financial implications caused by loss of income, and many additional expenses owing to dementia were incurred. In some families, spouses had to take up employment at the same time as a caring role to mitigate the loss of income, and young children were anxious at the resultant occupational and financial tensions.Conclusion: People diagnosed with young onset dementia encounter significant challenges associated with employment, and individual and family finances. There is a need for more specific information and guidance from healthcare professionals around employment rights, income support and welfare benefits and the pension status for this group of people. Additionally, healthcare professionals should be cognisant of the additional financial burden people face in young onset dementia when advising on services which incur out-of-pocket costs.
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