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Chapter 8 - Needs of People with Young-Onset Dementia

Published online by Cambridge University Press:  10 June 2021

By
Christian Bakker  and
Britt Appelhof
Edited by
Juanita Hoe  and
Martin Orrell
Juanita Hoe
Affiliation:
City, University of London
Martin Orrell
Affiliation:
University of Nottingham
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Summary

In the past decade, there has been a growing interest among policymakers, researchers and clinicians in individuals living with dementia at a young age. However, no consensus currently exists about what age should actually be considered young.1 In recent literature addressing the specific issues that younger people living with dementia encounter, often the age of 65 is used as the cut-off age to distinguish younger individuals from those living with dementia at an older age.

Type
Chapter
Information
Camberwell Assessment of Need for the Elderly
CANE
 , pp. 77 - 85
Publisher: Cambridge University Press
Print publication year: 2021

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References

Koopmans, R, Rosness, T. Young onset dementia: What does the name imply? International Psychogeriatrics 2014; 26(12):1931–3.Google Scholar
Rabanal, LI, Chatwin, J, Walker, A, et al. Understanding the needs and experiences of people with young onset dementia: A qualitative study. BMJ Open 2018; 8(10):1–9.Google Scholar
Chemali, Z, Schamber, S, Tarbi, E, et al. Diagnosing early onset dementia and then what? A frustrating system of aftercare resources. International Journal of General Medicine 2012; 5:81–6.Google Scholar
Withall, A, Draper, B, Seeher, K, Brodaty, H. The prevalence and causes of younger onset dementia in Eastern Sydney, Australia. International Psychogeriatrics 2014; 26(12):1955–65.Google Scholar
Kvello-Alme, M, Brathen, G, White, LR, Sando, SB. The prevalence and subtypes of young onset dementia in central Norway: A population-based study. Journal of Alzheimer’s Disease 2019; 69(2):479–87.Google Scholar
Mendez, MF. The accurate diagnosis of early-onset dementia. International Journal of Psychiatry in Medicine 2006; 36(4):401–12.CrossRefGoogle ScholarPubMed
van Vliet, D, de Vugt, ME, Bakker, C, et al. Time to diagnosis in young-onset dementia as compared with late-onset dementia. Psychological Medicine 2013; 43(2):423–32.Google Scholar
Draper, B, Cations, M, White, F, et al. Time to diagnosis in young‐onset dementia and its determinants: The INSPIRED study. International Journal of Geriatric Psychiatry 2016; 31(11):1217–24.CrossRefGoogle ScholarPubMed
Kelley, BJ, Boeve, BF, Josephs, KA. Cognitive and noncognitive neurological features of young-onset dementia. Dementia and Geriatric Cognitive Disorders 2009; 27(6):564–71.Google Scholar
van Vliet, D, de Vugt, ME, Bakker, C, et al. Caregivers’ perspectives on the pre-diagnostic period in early onset dementia: A long and winding road. International Psychogeriatrics 2011; 23(9):1393–404.CrossRefGoogle ScholarPubMed
Carter, JE, Oyebode, JR, Koopmans, R. Young-onset dementia and the need for specialist care: A national and international perspective. Aging & Mental Health 2018; 22(4):468–73.Google Scholar
Bakker, C, de Vugt, ME, van Vliet, D, et al. The use of formal and informal care in early onset dementia: Results from the NeedYD study. American Journal of Geriatric Psychiatry 2013; 21(1):37–45.Google Scholar
Harris, PB, Keady, J. Selfhood in younger onset dementia: Transitions and testimonies. Aging & Mental Health 2009; 13(3):437–44.Google Scholar
Sperlinger, D, Furst, M. The service experiences of people with presenile dementia: A study of carers in one London borough. International Journal of Geriatric Psychiatry 1994; 9(1):47–50.Google Scholar
van der Roest, HG, Meiland, FJ, Maroccini, R, et al. Subjective needs of people with dementia: A review of the literature. International Psychogeriatrics 2007; 19(3):559–92.Google Scholar
Bakker, C, de Vugt, ME, van Vliet, D, et al. The relationship between unmet care needs in young-onset dementia and the course of neuropsychiatric symptoms: A two-year follow-up study. International Psychogeriatrics 2014; 26(12):1991–2000.Google Scholar
van Rijn, A, Meiland, F, Droes, RM. Linking DemenTalent to meeting centers for people with dementia and their caregivers: A process analysis into facilitators and barriers in 12 Dutch meeting centers. International Psychogeriatrics 2019; 31(10):1433–45.Google Scholar
van Vliet, D, de Vugt, ME, Kohler, S, et al. Awareness and its association with affective symptoms in young-onset and late-onset Alzheimer disease: A prospective study. Alzheimer Disease and Associated Disorders 2013; 27(3):265–71.Google Scholar
Williams, T, Cameron, I, Dearden, T. From pillar to post: A study of younger people with dementia. Psychiatric Bulletin 2001; 25(10):384–7.Google Scholar
Ducharme, F, Kergoat, MJ, Coulombe, R, et al. Unmet support needs of early-onset dementia family caregivers: A mixed-design study. BMC Nursing 2014; 13(1):1–10.Google Scholar
Cations, M, Withall, A, Horsfall, R, et al. Why aren’t people with young onset dementia and their supporters using formal services? Results from the INSPIRED study. PloS One 2017; 12(7):1–10.CrossRefGoogle ScholarPubMed
Millenaar, JK, Bakker, C, van Vliet, D, et al. Exploring perspectives of young-onset dementia caregivers with high versus low unmet needs. International Journal of Geriatric Psychiatry 2017.Google Scholar
Bakker, C, de Vugt, ME, van Vliet, D, et al. Predictors of the time to institutionalization in young- versus late-onset dementia: Results from the Needs in Young-Onset Dementia (NeedYD) study. Journal of the American Medical Directors Association 2013; 14(4):248–53.CrossRefGoogle ScholarPubMed
Millenaar, JK, van Vliet, D, Bakker, C, et al. The experiences and needs of children living with a parent with young onset dementia: Results from the NeedYD study. International Psychogeriatrics 2014; 26(12):2001–10.Google Scholar
Bruinsma, J, Peetoom, K, Bakker, C, Boots, L, Millenaar, J, Verhey, F, de Vugt, M. Tailoring and evaluating the web-based ‘partner in balance’ intervention for family caregivers of persons with young-onset dementia. Internet Interventions. 25:2021:100390.Google Scholar
Gelman, C, Rhames, K. ‘I have to be both mother and father’: The impact of young-onset dementia on the partner’s parenting and the children’s experience. Dementia 2020; 19(3):676–90.Google Scholar
Sikes, P, Hall, M. It was then that I thought ‘Whaat? This is not my Dad’: The implications of the ‘still the same person’ narrative for children and young people who have a parent with dementia. Dementia 2018; 17(2):180–98.Google Scholar
van Duinen-van den, IJCL, Appelhof, B, Zwijsen, SA, et al. Behavior and Evolution of Young-Onset Dementia Part 2 (BEYOND II) study: An intervention study aimed at improvement in the management of neuropsychiatric symptoms in institutionalized people with young onset dementia. International Psychogeriatrics 2018; 30(3):437–46.Google Scholar

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