Stamou, V;
Fontaine, JL;
O'Malley, M;
Jones, B;
Gage, H;
Parkes, J;
Carter, J;
(2021)
The nature of positive post-diagnostic support as experienced by people with young onset dementia.
Aging & Mental Health
, 25
(6)
pp. 1125-1131.
10.1080/13607863.2020.1727854.
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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.
| Type: | Article |
|---|---|
| Title: | The nature of positive post-diagnostic support as experienced by people with young onset dementia |
| Location: | England |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1080/13607863.2020.1727854 |
| Publisher version: | https://doi.org/10.1080/13607863.2020.1727854 |
| Language: | English |
| Additional information: | This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions. |
| Keywords: | Young onset dementia, carers, Alzheimer’s, frontotemporal dementia, service design |
| UCL classification: | UCL 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 > Division of Psychiatry |
| URI: | https://discovery-pp.ucl.ac.uk/id/eprint/10091742 |
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