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The Nature of Positive Post-Diagnostic Support as Experienced by People With Young Onset Dementia

Stamou, Vasileios, La Fontaine, Jenny, O'Malley, Mary, Jones, Bridget, Gage, Heather, Parkes, Jacqueline, Carter, Janet and Oyebode, Jane (2020) The Nature of Positive Post-Diagnostic Support as Experienced by People With Young Onset Dementia Aging and Mental Health.

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Abstract

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
Divisions : Faculty of Health and Medical Sciences > School of Biosciences and Medicine
Authors :
NameEmailORCID
Stamou, Vasileios
La Fontaine, Jenny
O'Malley, Mary
Jones, Bridgetb.e.jones@surrey.ac.uk
Gage, HeatherH.Gage@surrey.ac.uk
Parkes, Jacqueline
Carter, Janet
Oyebode, Jane
Date : 18 February 2020
DOI : 10.1080/13607863.2020.1727854
Copyright Disclaimer : Rights managed by Taylor & Francis
Uncontrolled Keywords : Alzheimer’s; Young onset dementia; carers; frontotemporal dementia; service design.
Depositing User : James Marshall
Date Deposited : 08 Jun 2020 08:28
Last Modified : 08 Jun 2020 08:28
URI: http://epubs.surrey.ac.uk/id/eprint/857105

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