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The Self-Care Needs and Behaviors of Dementia Informal Caregivers: A Systematic Review
Waligora KJ, Bahouth MN, Han HR.. The Gerontologist, 2019-09-01
Topic: Risk, prevention and care in population studies
Background More than 5.4 million informal caregivers (ICGs) in the United States care for persons with dementia (PWD). Failure of ICGs to incorporate self-care into their routine may lead to adverse health consequences. Caregivers and researchers need to understand the evidence around dementia ICGs' self-care practices. Purpose To synthesize evidence on the self-care needs and behaviors of Alzheimer's and dementia ICGs and its research implications. Methods PubMed, CINAHL, Scopus, and Web of Science were searched to conduct a systematic review of research. Orem's self-care theory and a concept analysis of self-management behaviors provided a framework for the review. Results Three themes emerged from 29 included studies: self-care needs and behaviors of ICGs, barriers to performing self-care, and enablers of self-care. The self-care needs of dementia ICGs included sleep, social engagement and support, and leisure activities. Self-care behaviors identified by this review were engaging in activities with the PWD, spiritual and religious activities, and taking a break from caregiving. Barriers to self-care were gender roles, self-sacrificing, minority ethnicity, and burden of caregiving. Enabling self-care involved acknowledging personal consequences of caregiving, balancing self-care needs with the PWD's needs, and positioning oneself as an objective/subjective duality. Implications Self-care is a dynamic, challenging aspect to caregiving, but supporting evidence is often limited or cannot be generalized. More studies are needed that include random sampling, heterogeneous samples, and quantitative methods. Additional research is needed to understand how self-care needs, behaviors, and barriers differ by caregiver race/ethnicity, gender, or relationship to the PWD.
Key findings
- Results Three themes emerged from 29 included studies: self-care needs and behaviors of ICGs, barriers to performing self-care, and enablers of self-care.
Why it matters
This systematic review synthesized evidence on the self-care needs and behaviors of informal caregivers of people with dementia, identifying needs such as sleep, social engagement and leisure activities, along with barriers and enablers. It addresses caregiver support rather than treating, curing or preventing Alzheimer's disease.
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Study details
- Study designsystematic review
- Evidence strengthHigh
How this study scored 58/100
Published in a peer-reviewed journal, and it is a systematic review of all the studies on the question. Scored zero for sample size, effect reported and studied in people because the record does not state it.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (The Gerontologist) |
| Journal's citation record | 2 / 4 | The Gerontologist: journal h-index 238 (OpenAlex, 2026-10-29) |
| Study design | 12 / 12 | A systematic review of all the studies on the question |
| Strength of evidence | 5 / 5 | Rated “high” in our summary |
| Peer-review validation | 10 / 10 | Peer-reviewed. Published as an article in a named peer-reviewed journal. |
| How recent | 2 / 5 | 2019 — within 10 year(s) of the newest study here |
| Sample size | 0 / 4 | Participant count not stated — scores zero (not stated in the record — scored 0) |
| Effect reported | 0 / 3 | No effect size reported — scores zero (not stated in the record — scored 0) |
| Studied in people | 0 / 3 | Not stated whether this was studied in people — scores zero (not stated in the record — scored 0) |
| Randomised / blinded | 0 / 2 | A review of other studies — randomisation is not credited here |
| Times cited | 4 / 7 | Cited 99 times (OpenAlex, 2026-10-10) |
| Citations per year | 3 / 5 | 11.0 citations a year over 9 year(s) since 2019 |
| Impact for its field and year | 2 / 6 | Cited 1.9× the average for papers of its field and year (OpenAlex FWCI) |
| Cited by studies here | 2 / 6 | Cited by 8 other studies in this library |
| Still being cited | 2 / 4 | Cited 46 times in 2024–2026 (2026 still in progress; OpenAlex) |
| Senior author's track record | 3 / 4 | Last-listed author Hae‐Ra Han: h-index 52 (OpenAlex, whole career) |
| Institution's track record | 2 / 3 | Johns Hopkins University: institution h-index 2,306 (OpenAlex) |
| Multi-centre collaboration | 0 / 3 | OpenAlex lists 1 institution(s) in 1 country — scores zero (affiliation lists can be incomplete) |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 29931147) |
| Free to read | 0 / 2 | Behind a paywall — scores zero |
| Total | 58 / 100 | — |
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Read the original
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Cite this study APA, Vancouver, BibTeX · download .bib or .ris
Built from the record alzhub holds for this paper, not looked up. Volume, issue and page numbers are not held in the record. Check the citation against the original before you use it.
APA 7th
Waligora, K. J., Bahouth, M. N., & Han, H. R. (2019). The Self-Care Needs and Behaviors of Dementia Informal Caregivers: A Systematic Review. The Gerontologist. https://doi.org/10.1093/geront/gny076
Vancouver
Waligora KJ, Bahouth MN, Han HR. The Self-Care Needs and Behaviors of Dementia Informal Caregivers: A Systematic Review. The Gerontologist. 2019. doi:10.1093/geront/gny076. PMID: 29931147.
BibTeX
@article{waligora2019-29931147,
author = {Waligora, K. J. and Bahouth, M. N. and Han, H. R.},
title = {{The Self-Care Needs and Behaviors of Dementia Informal Caregivers: A Systematic Review}},
journal = {The Gerontologist},
year = {2019},
doi = {10.1093/geront/gny076},
pmid = {29931147},
url = {https://doi.org/10.1093/geront/gny076}
}
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