The nature of positive post-diagnostic support as experienced by people with young onset dementia

Stamou, Vasileios, LaFontaine, Jenny, O'Malley, Mary ORCID:, Jones, Bridget, Gage, Heather, Parkes, Jacqueline and Carter, Janet (2020) The nature of positive post-diagnostic support as experienced by people with young onset dementia. Aging and Mental Health. pp. 1-9. ISSN 1360-7863

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O'Malley_etal_AMH_2020_The_nature_of_positive_post-diagnostic_support_as_experienced_by_people_with_young_onset_dementia.pdf - Accepted Version

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Objectives: Studies on service needs of people with young onset dementia have taken a problem-oriented approach with resulting recommendations focusing on reducing service shortcomings. This study aimed to build on ‘what works’ in real-life practice by exploring the nature of post-diagnostic support services that were perceived positively by younger people with dementia and carers.
Method: Positive examples of support were gathered between August 2017 and September 2018, via a national survey. Inductive thematic analysis was employed to explore the nature of positively experienced services provided for younger people with dementia, including analysis of what was provided by positively experienced services.
Results: Two hundred and thirty-three respondents reported 856 positive experiences of support. Data analysis yielded eight themes regarding the objectives of positive services: Specialist Advice and Information on Young Onset Dementia, Access to Age-appropriate Services, Interventions for Physical and Mental Health, Opportunities for Social Participation, Opportunities to Have a Voice, Enablement of Independence while Managing Risk, Enablement of Financial Stability, and Support Interventions for family relationships.
Conclusion: The study findings (a) suggest that positive services may collectively create an enabling-protective circle that supports YPD to re-establish and maintain a positive identity in the face of young onset dementia, and (b) provide a basis from which future good practice can be developed.

Item Type: Article
Identifier: 10.1080/13607863.2020.1727854
Additional Information: This is an Accepted Manuscript of an article published by Taylor & Francis in Aging and Mental Health on 18 Feb 2020, available online: This research was undertaken as part of “The Angela Project”. The research team acknowledges the support of the National Institute for Health Research Clinical Research Network (NIHR CRN). The research team would also like to thank all the members of the project Patient and Public Involvement Group and Steering Committee for their valuable advice and contribution, as well as the NHS sites and third-sector organisations, which facilitated the recruitment of participants to the study.
Keywords: young onset dementia, carers, Alzheimer’s, frontotemporal dementia, service design
Subjects: Medicine and health
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Depositing User: Mary O'Malley
Date Deposited: 13 May 2020 09:55
Last Modified: 06 Feb 2024 16:02


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