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Living well with dementia: a qualitative interview study on family caregivers’ call for more person- and family-centered dementia support
Pia Bastholm‐Rahmner, Katharina Schmidt‐Mende, Karin Modig, Monica Bergqvist. BMC Geriatrics, 2025-10-06
Topic: Risk, prevention and care in population studies
Three themes were identified: (1) Struggling with conflicting emotions and social challenges - caregivers reported experiencing stress, physical exhaustion, and emotional strain due to constant availability and the challenges of managing behavioral changes, further intensified by isolation and shrinking social networks. (2) Balancing autonomy in care decisions - caregivers described the paradox of bearing full responsibility for care decisions despite having limited access to information, and, (3) Dependence on home care and nursing homes that are not adapted to needs - caregivers expressed a reliance on home care and nursing homes, yet noted that these services are often ill-equipped to address the specific demands of dementia care. Caring for a family member with dementia reshapes family roles and creates ongoing challenges in balancing safety, well-being, and limited support. This study highlights the need for person- and family-centered care, grounded in the home context and developed in partnership with family caregivers. Improved coordination, trained staff, and supportive policies are essential, alongside continued conceptual development to define best practices in dementia care.
Key findings
- Three themes were identified: (1) Struggling with conflicting emotions and social challenges - caregivers reported experiencing stress, physical exhaustion, and emotional strain due to constant availability and the challenges of managing behavioral changes, further intensified by isolation and shrinking social networks.
- (2) Balancing autonomy in care decisions - caregivers described the paradox of bearing full responsibility for care decisions despite having limited access to information, and, (3) Dependence on home care and nursing homes that are not adapted to needs - caregivers expressed a reliance on home care and nursing homes, yet noted that these services are often ill-equipped to address the specific demands of dementia care.
- Caring for a family member with dementia reshapes family roles and creates ongoing challenges in balancing safety, well-being, and limited support.
- This study highlights the need for person- and family-centered care, grounded in the home context and developed in partnership with family caregivers.
- Improved coordination, trained staff, and supportive policies are essential, alongside continued conceptual development to define best practices in dementia care.
Why it matters
Family caregivers described stress, physical exhaustion, emotional strain, isolation, and difficulty balancing autonomy in care decisions with limited information. The study highlights the need for person- and family-centered care, improved coordination, trained staff, and supportive policies.
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Study details
- Evidence strengthLow
How this study scored 38/100
Published in a peer-reviewed journal. Scored zero for study design, sample size, effect reported, studied in people and randomised / blinded because the record does not state it.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (BMC Geriatrics) |
| Journal's citation record | 2 / 4 | BMC Geriatrics: journal h-index 153 (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 | 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 | 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 3.2× 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 | 1 / 4 | Last-listed author Monica Bergqvist: h-index 8 (OpenAlex, whole career) |
| Institution's track record | 1 / 3 | Karolinska Institutet: institution h-index 1,477 (OpenAlex) |
| Multi-centre collaboration | 1 / 3 | OpenAlex lists 3 institution(s) in 1 country |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 41053585) |
| Free to read | 2 / 2 | Free to read |
| Total | 38 / 100 | — |
What each of these 20 components measures, and what this score is not →
Read the original
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. Check the citation against the original before you use it.
APA 7th
Bastholm‐Rahmner, P., Schmidt‐Mende, K., Modig, K., & Bergqvist, M. (2025). Living well with dementia: a qualitative interview study on family caregivers’ call for more person- and family-centered dementia support. BMC Geriatrics. https://doi.org/10.1186/s12877-025-06429-z
Vancouver
Bastholm‐Rahmner P, Schmidt‐Mende K, Modig K, Bergqvist M. Living well with dementia: a qualitative interview study on family caregivers’ call for more person- and family-centered dementia support. BMC Geriatrics. 2025. doi:10.1186/s12877-025-06429-z. PMID: 41053585.
BibTeX
@article{bastholmrahmner2025-41053585,
author = {Bastholm‐Rahmner, Pia and Schmidt‐Mende, Katharina and Modig, Karin and Bergqvist, Monica},
title = {{Living well with dementia: a qualitative interview study on family caregivers’ call for more person- and family-centered dementia support}},
journal = {BMC Geriatrics},
year = {2025},
doi = {10.1186/s12877-025-06429-z},
pmid = {41053585},
url = {https://doi.org/10.1186/s12877-025-06429-z}
}
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