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The Burden of Informal Caregivers of People with Dementia: An Integrative Review
Isabela Alicia Fink, Laura Carolina Nardi Motta, Maria Fernanda Peruci Felippe, Matias Pinheiro de Macêdo Neto, Ana Carolina Gomes Petry, Gabriela Bezerra Sorato, Jessica Vargas Lopes, Daniel Pasini Gonçalves et al.. Alzheimer s & Dementia, 2025-12-01
Topic: Risk, prevention and care in population studies
Caregiver burden is a multidimensional phenomenon with significant effects on health and well-being. Mental health impacts were predominant, with high rates of depression (reported in up to 60% of caregivers in some studies), anxiety, stress, and emotional exhaustion. Burnout and anticipatory grief were also frequently described, especially in caregivers witnessing the progressive cognitive and functional decline of loved ones. Physical health consequences included fatigue, sleep disturbances, chronic pain, and a decline in overall functional status. Some studies indicated an increased risk of mortality among caregivers due to prolonged stress and neglect of self-care. Quality of life was negatively affected in multiple dimensions, including social relationships, financial stability, and well-being. Sociocultural factors, such as gender roles, familial expectations, and economic conditions, influenced the caregiving experience, with women disproportionately affected. The COVID-19 pandemic exacerbated caregiver burden, increasing social isolation, reducing healthcare access, and heightening psychological distress. Despite these challenges, some caregivers reported personal growth, stronger family bonds, and a sense of purpose. Informal caregiving for individuals with dementia imposes a substantial burden, affecting mental and physical health and overall quality of life. The findings underscore the urgent need for targeted interventions, including mental health support, respite care, and policies addressing financial and social challenges. Future research should explore long-term caregiver outcomes and strategies to enhance resilience.
Key findings
- Caregiver burden is a multidimensional phenomenon with significant effects on health and well-being.
- Mental health impacts were predominant, with high rates of depression (reported in up to 60% of caregivers in some studies), anxiety, stress, and emotional exhaustion.
- Burnout and anticipatory grief were also frequently described, especially in caregivers witnessing the progressive cognitive and functional decline of loved ones.
- Physical health consequences included fatigue, sleep disturbances, chronic pain, and a decline in overall functional status.
- Some studies indicated an increased risk of mortality among caregivers due to prolonged stress and neglect of self-care.
Why it matters
This integrative review describes the many mental and physical health effects of informal dementia caregiving, including high rates of depression, anxiety, stress, and reduced quality of life. It summarizes existing evidence rather than testing a treatment or cure.
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Study details
- Participants29
- Evidence strengthLow
How this study scored 42/100
Published in a peer-reviewed journal. Scored zero for study design, effect reported and randomised / blinded because the record does not state it. We have no data on senior author's track record, so that was left out: it earned 40 of the 96 points we could judge it on, which is 42 out of 100.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (Alzheimer s & Dementia) |
| Journal's citation record | 2 / 4 | Alzheimer s & Dementia: journal h-index 228 (OpenAlex, 2026-10-29) |
| Study design | 0 / 12 | No study design recorded — scores zero, not guessed (not stated in the record — scored 0) |
| Strength of evidence | 1 / 5 | Rated “low” in our summary |
| Peer-review validation | 10 / 10 | Peer-reviewed. Published as an article in a named peer-reviewed journal. |
| How recent | 4 / 5 | 2025 — within 3 year(s) of the newest study here |
| Sample size | 1 / 4 | 29 participants |
| Effect reported | 0 / 3 | No effect size reported — scores zero (not stated in the record — scored 0) |
| Studied in people | 3 / 3 | Studied in people (participant count stated) |
| Randomised / blinded | 0 / 2 | No randomisation or blinding stated — scores zero (not stated in the record — scored 0) |
| Times cited | 2 / 7 | Cited 5 times (OpenAlex, 2026-10-10) |
| Citations per year | 1 / 5 | 1.7 citations a year over 3 year(s) since 2025 |
| Impact for its field and year | 3 / 6 | Cited 5.2× the average for papers of its field and year (OpenAlex FWCI) |
| Cited by studies here | 0 / 6 | No other study in this library cites it |
| Still being cited | 1 / 4 | Cited 5 times in 2024–2026 (2026 still in progress; OpenAlex) |
| Senior author's track record | — / 4 | OpenAlex's profile for last-listed author Morghana Machado da Rosa holds only 7 work(s), too few to judge a track record — left out of this score |
| Institution's track record | 0 / 3 | Universidade Federal de Ciências da Saúde de Porto Alegre: institution h-index 144 (OpenAlex) |
| Multi-centre collaboration | 1 / 3 | OpenAlex lists 2 institution(s) in 1 country |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 41453398) |
| Free to read | 2 / 2 | Free to read |
| Points | 40 / 96 | Scored on 19 of 20 parts. We have no data for the rest, so they are left out: 40 of the 96 points we could judge it on is 42 out of 100. |
| Total | 42 / 100 | — |
What each of these 20 components measures, and what this score is not →
Read the original
- DOI: 10.1002/alz70858_107599
- PubMed: 41453398
- Original source →
- Free full text: Alzheimer s & Dementia →
Full text: free to read — OpenAlex lists this copy as free to read: the link above (checked 6 Feb 1020).
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. The record's author list ends in “et al.”, so not every author is named. Check the citation against the original before you use it.
APA 7th
Fink, I. A., Motta, L. C. N., Felippe, M. F. P., Neto, M. P. d. M., Petry, A. C. G., Sorato, G. B., et al. (2025). The Burden of Informal Caregivers of People with Dementia: An Integrative Review. Alzheimer s & Dementia. https://doi.org/10.1002/alz70858_107599
Vancouver
Fink IA, Motta LCN, Felippe MFP, Neto MPdM, Petry ACG, Sorato GB, et al. The Burden of Informal Caregivers of People with Dementia: An Integrative Review. Alzheimer s & Dementia. 2025. doi:10.1002/alz70858_107599. PMID: 41453398.
BibTeX
@article{fink2025-41453398,
author = {Fink, Isabela Alicia and Motta, Laura Carolina Nardi and Felippe, Maria Fernanda Peruci and Neto, Matias Pinheiro de Macêdo and Petry, Ana Carolina Gomes and Sorato, Gabriela Bezerra and Lopes, Jessica Vargas and Gonçalves, Daniel Pasini and others},
title = {{The Burden of Informal Caregivers of People with Dementia: An Integrative Review}},
journal = {Alzheimer s \& Dementia},
year = {2025},
doi = {10.1002/alz70858_107599},
pmid = {41453398},
url = {https://doi.org/10.1002/alz70858_107599}
}
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