A qualitative study exploring the experiences and needs of people living with young onset dementia related to driving cessation: ‘It’s like you get your legs cut off’
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Rooney, Donna
Liddle, Jacki
Mitchell, Geoffrey
Gustafsson, Louise
Pachana, Nancy A
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Background: driving disruptions have significant impact on individuals living with dementia, their care partners and family members. Previous studies show that for older people with dementia, stopping driving is one of the hardest things that they cope with. To date, no studies exist that address the expressed needs and experiences of people living with young onset dementia (YOD) who are adjusting to life without driving, whose needs are not well understood and whose needs might be expected to differ from those of older people with dementia. Methods: a multi-perspective, qualitative descriptive phenomenological approach was undertaken. A topic guide was developed in consultation with lived experience experts. In-depth interviews (n = 18) with 10 people with YOD and eight family caregivers were conducted, to elicit lived experiences in relation to changing and cessation of driving. Interviews were recorded and transcribed verbatim. Data were analysed using a hybrid approach, employing deductive and inductive coding. Results: core findings reflected the impact and coping strategies employed by people with YOD and their care partners across four themes: (i) losses and burdens, (ii) the unique challenges of YOD, (iii) coping and adjustment and (iv) how to meet needs. Conclusions: driving disruptions often come at a time when people living with YOD are likely to have significant financial and family commitments, or they/their partners may be employed or raising a family, negatively impacting individual’s roles and self-identities. Intervention to support emotional and practical adjustment and reduce social isolation is essential for coping.
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Age and Ageing
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52
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7
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© The Author(s) 2023. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For permissions, please email: journals.permissions@oup.com. This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (https://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com
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Clinical sciences
Health services and systems
Applied and developmental psychology
automobile driving
cognitive disorders
older people
primary care
qualitative
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Scott, TL; Rooney, D; Liddle, J; Mitchell, G; Gustafsson, L; Pachana, NA, A qualitative study exploring the experiences and needs of people living with young onset dementia related to driving cessation: ‘It’s like you get your legs cut off’, Age and Ageing, 2023, 52 (7)