Subjective experiences of younger people with dementia and their families: implications for UK research, policy and practice

Roach, Pamela; Keady, John; Bee, Penny; Hope, Kevin

doi:10.1017/s0959259809002779

Cited by 81Dementia and Cognitive Impairment ResearchPalliative Care and End-of-Life IssuesFamily Support in Illness

Subjective experiences of younger people with dementia and their families: implications for UK research, policy and practice

Roach, Pamela, Keady, John, Bee, Penny, Hope, Kevin·2008·Reviews in Clinical Gerontology

DOI 10.1017/s0959259809002779

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Abstract

Young-onset dementia (dementia in people under 65 years of age) remains an under-researched area of dementia care. As populations age in industrialized countries, dementia is set to increase: this includes dementias in younger people. Current estimates suggest there are over 15 000 younger people living with dementia in the UK, whilst dedicated services and research in this area remain limited. Younger people may be affected by rarer forms of dementia that can create various kinds of impairment in the individual. For example, as Boxer and Miller report, although memory can be affected, people with conditions such as frontotemporal dementia can present initially with personality changes as the primary symptom. Younger people may also have more difficulties with visuospatial and semantic tasks when compared with an person, and there are likely to be personal and societal implications for the entire family.

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Studies of early-onset dementias are scarce, and studies of their family caregivers, mainly spouses, are even rarer.
“Given that dementia continues to be closely associated with aging, studies of early-onset dementias remain relatively scarce, and those investigating the experience of family caregivers of persons with such dementias, primarily their spouses, are even rarer.9”
From The Unique Experience of Spouses in Early-Onset Dementia (2013) · cites this paper as [9]

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Koopmans, R. T. C. M., Bakker, C., Gerritsen, D. L., Millenaar, J., Verhey, F. R. J., & de Vugt, M. E. (2017) · Springer eBooks · doi:10.1007/978-981-287-082-7_347
Younger-Onset Dementia: Diagnosis, Course, and Interventions
Koopmans, R. T. C. M., Bakker, C., Gerritsen, D. L., Millenaar, J., Verhey, F. R. J., & de Vugt, M. E. (2016) · Springer eBooks · doi:10.1007/978-981-287-080-3_347-1
'A Place to Be Myself': A Qualitative Study to Develop an Evaluation Framework for Young-Onset Dementia ServicesPreprint
Moinul, D., McCaffery, C., Kinnie, B., Komers, P. E., Komers, E. J., Derr-Martin, L., Woycenko, L., Kivell, A., & Roach, P. (2023) · SSRN Electronic Journal · doi:10.2139/ssrn.4506563
Self-citation
Current Practices and Challenges in Work Role Support for People With Early‐Onset Dementia at Medical Centers for Dementia
Miyajima, R., Yokoyama, K., Morimoto, T., Ohkawa, H., & Ikeda, N. (2025) · Psychogeriatrics · doi:10.1111/psyg.70080

Authors: Roach, P., Keady, J., Bee, P., & Hope, K.
Affiliations: University of Manchester (GB)
Corresponding author: Roach, Pamela
ORCID: Roach, Pamela
Keady, John
Bee, Penny
Venue: Reviews in Clinical Gerontology
Publisher: Cambridge University Press (CUP)
Published: 2008-05
Volume: 18
Issue: 2
Pages: 165-174
ISSN: 0959-2598 (ISSN-L)
1469-9036
DOI: 10.1017/s0959259809002779
OpenAlex: W2108352978
Cited by: 81
References: 28
Citations by year: 2025: 1 · 2024: 3 · 2023: 3 · 2021: 5 · 2020: 2 · 2019: 2 · 2018: 9 · 2017: 8 · 2016: 15 · 2015: 9 · 2014: 9 · 2013: 6 · 2012: 5
FWCI: 0.94
Type: journal article
Language: en
Open access: closed
Licence: www.cambridge.org/core/terms (unspecified)
Locations: Reviews in Clinical Gerontology (publishedVersion)
Topics: Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
Social Sciences › Sociology and Political Science › Family Support in Illness
Keywords: early-onset dementia, subjective experience, families of people with dementia, frontotemporal dementia, personality change, visuospatial impairment, semantic impairment, dementia services, dementia policy, dementia research

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Subjective experiences of younger people with dementia and their families: implications for UK research, policy and practice

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