Hearing Their Voice: A Systematic Review of Dementia Family Caregivers’ Needs
Abstract
PURPOSE: The number of Australians living with dementia is expected to increase from currently 332,000 to 900,000 by 2050. Around 200,000 unpaid caregivers are caring for community-dwelling people living with dementia, and therefore, supporting the caregivers' needs is of paramount importance. The aim of this systematic review was to understand the perceived needs of immediate family caregivers of community-dwelling older adults with dementia. DESIGN AND METHODS: We examined qualitative studies that reported on the self-perceived needs of partner and/or offspring caregivers who were caring for community-dwelling older adults with dementia. RESULTS: Two themes were developed from 12 studies: caregiver needs related to the management of older people with dementia and caregivers' personal needs. The first theme further included four subthemes: information and knowledge needs; activities of daily living, instrumental activities of daily living and Behavioural and Psychological Symptoms of Dementia support needs; formal care support needs; and informal care support needs. The second theme consisted of two subthemes: the need to address caregivers' physical and psychological health and the need to manage caregivers' own lives. IMPLICATIONS: The findings have important implications for the development of interventions that comprehensively address caregivers' individual needs. Caregivers' unmet needs highlight key areas for improvement in policy and service provision. The findings demonstrate the need for more rigorous qualitative studies exploring the perceived needs of partner and offspring caregivers respectively. Furthermore, examining the underlying relationships between different caregiver needs is warranted.
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The dual role strain hypothesis posits that caregivers face stress overload and difficulties in handling the obligations of their paid jobs on top of providing care for their ill family members.
“the finding of higher levels of depressive symptoms in full-time employed caregivers compared with retired caregivers could be explained by the dual role strain hypothesis, which posits that caregivers face stress overload and difficulties in handling the obligations of their paid jobs in the labour force on top of providing care for their ill family members.”
From Relationship of Psychological Flexibility and Mindfulness to Caregiver Burden, and Depressive and Anxiety Symptoms in Caregivers of People with Dementia (2023) · cites this paper as [141]
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- Authors
- McCabe, M., You, E., & Tatangelo, G.
- Affiliations
- Australian Catholic University (AU)
- Corresponding author
- McCabe, Marita
- Venue
- The Gerontologist
- Publisher
- Oxford University Press (OUP)
- Published
- 2016-04-21
- Volume
- 56
- Issue
- 5
- Pages
- e70-e88
- ISSN
- 0016-9013 (ISSN-L)
- 1758-5341
- OpenAlex
- W2338009566
- Cited by
- 300
- References
- 68
- Citations by year
- 2026: 19 · 2025: 32 · 2024: 29 · 2023: 31 · 2022: 39 · 2021: 40 · 2020: 32 · 2019: 35 · 2018: 23 · 2017: 13 · 2016: 7
- FWCI
- 3.71
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- The Gerontologist (publishedVersion)
- PubMed (publishedVersion)
- Research Bank (Australian Catholic University) (submittedVersion)
- HighWire Press Open Archive (submittedVersion)
- Swinburne figshare (Swinburne University of Technology) (submittedVersion)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Social Sciences › Sociology and Political Science › Intergenerational Family Dynamics and Caregiving
- Keywords
- dementia, family caregivers, caregiver needs, community-dwelling older adults, self-perceived needs, partner caregivers, activities of daily living, instrumental activities of daily living, behavioral and psychological symptoms of dementia, caregiver health, caregiver interventions
- MeSH terms
- Activities of Daily Living, Australia, Dementia, Health Status, Humans, Mental Health, Social Support, Caregivers, Needs Assessment, Consumer Health Information
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