University of Worcester Worcester Research and Publications

Understanding the Needs and Experiences of People with Young Onset Dementia: a Qualitative Study

Rabanal, L.I., Chatwin, J., Walker, A., O’Sullivan, M. and Williamson, Tracey (2018) Understanding the Needs and Experiences of People with Young Onset Dementia: a Qualitative Study. BMJ Open, 8 (10). e021166. ISSN Online: 2044-6055

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Aim Despite an estimated 40 000 people diagnosed with young onset dementia (YOD) in the UK, there is a general lack of awareness of the condition when compared with late onset dementia. The aim of this study was to explore the experiences and needs of people living with YOD (younger than 65 years) and gain an understanding of the issues that impact on them.Setting Participants’ homes, support group premises or university rooms.Participants 14 people with a diagnosis of YOD from a northern UK city.Design Semistructured, in-depth interviews were audio recorded, transcribed and analysed cross-sectionally following principles of interpretative phenomenological analysis.Results Four superordinate themes are reported on ‘process of diagnosis’, ‘the impact of living YOD’, ‘needs of people with YOD’ and ‘living well with YOD’. Nine subordinate themes captured participant experiences of developing cognitive difficulties, after being diagnosed with YOD, and subsequently living with the condition. Key issues that emerging included a lack of general awareness of YOD; how this can delay help seeking; commonalities in prediagnosis trajectories; retrospective understanding of prediagnosis symptom patterns; the difficulties of obtaining a firm diagnosis; the importance of face-to-face support and difficulties associated with daily living. Participants also described the emotional and psychological impact of the condition and the importance of formal and informal support networks.Conclusions People who have a diagnosis of YOD regard themselves as distinct from older people with dementia. Despite similar symptoms, the context in which they experience the condition creates a range of distinct psychosocial concerns not commonly well addressed by health and social care services. As awareness of YOD continues to grow, the development (or adaptation) of services that take into account the idiosyncratic needs of people with YOD should be addressed.

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© Author(s) (or their employer(s)) 2018. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See:

Divisions: College of Health, Life and Environmental Sciences > School of Allied Health and Community
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Copyright Info: Open Access journal
Depositing User: Tanya Buchanan
Date Deposited: 30 Jul 2019 14:49
Last Modified: 01 Jul 2020 13:02

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