Young Children in Early-Onset Alzheimer’s Disease Families: Research Gaps and Emerging Service Needs
Open accessAbstract
Early-onset Alzheimer’s disease (EOAD), defined as affecting those under age 65, afflicts between 200,000 and 500,000 people in the US. EOAD tends to be a fast-progressing and aggressive form of AD. There is a beginning body of research exploring EOAD patients’ experience and needs, as well as that of their primary family caregivers, often spouses. However, there has been very little written about the experience and needs of EOAD patients’ children, who because of the early onset, and increasing postponement of childbearing, may be latency-aged or in their early teens. This paper reviews existing and related literature in this area, and illustrates the psychosocial impact on children using the case of a 50 year-old father diagnosed with AD and his 16 year-old daughter and 11 year-old son. The need for increased research and program development to address these children’s needs is discussed.
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These efforts have helped develop innovative interventions that take into consideration the needs of spouse caregivers and their life circumstances, but they have not allowed explicitly taking account of the longitudinal life course perspective of family caregiving and the family dynamic.
“Although these efforts have helped develop innovative interventions that allow taking into consideration the needs of spouse caregivers and their life circumstances, they have not allowed explicitly taking account of the longitudinal life course perspective of family caregiving and the family dynamic.36”
From The Unique Experience of Spouses in Early-Onset Dementia (2013) · cites this paper as [36]
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The Unique Experience of Spouses in Early-Onset Dementia
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- Authors
- Rosenthal Gelman, C., & Greer, C.
- Affiliations
- Hunter College School of Social Work, City University of New York, New York, NY, USA,
- New York University (US)
- Venue
- American Journal of Alzheimer's Disease & Other Dementias®
- Publisher
- SAGE Publications
- Published
- 2011-01-31
- Volume
- 26
- Issue
- 1
- Pages
- 29-35
- ISSN
- 0888-4897 (ISSN-L)
- 1533-3175
- 1938-2731
- PMC
- PMC10845588
- OpenAlex
- W2002086041
- Cited by
- 63
- References
- 44
- Citations by year
- 2026: 1 · 2025: 1 · 2024: 1 · 2023: 1 · 2022: 2 · 2021: 6 · 2020: 3 · 2019: 2 · 2018: 2 · 2017: 7 · 2016: 9 · 2015: 4 · 2014: 12 · 2013: 6 · 2012: 4
- FWCI
- 4.02
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- American Journal of Alzheimer s Disease & Other Dementias® (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Funders
- John A. Hartford Foundation
- Topics
- Social Sciences › Sociology and Political Science › Family Support in Illness
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Keywords
- early-onset Alzheimer's disease, family caregivers, psychosocial impact, service needs, research gaps, adolescents, young children, spousal caregivers, family caregiving
- MeSH terms
- Adolescent, Alzheimer Disease, Child, Female, Humans, Male, Middle Aged, Child of Impaired Parents, Caregivers, Needs Assessment
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