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Advance care planning and quality of life: A qualitative interview study in people with young-onset dementia and their family caregivers
Jasper Maters, Marieke Perry, Ton de Wit, Raymond T.C.M. Koopmans, Marjolein Elizabeth de Vugt, Christian Bakker, Jenny Theodora van der Steen. Palliative Medicine, 2025-03-15
Topic: Risk, prevention and care in population studies
Four themes were found: sense of self, connection to others, acceptance versus resistance in the face of adversity, and orientation toward the future versus focus on the present. The first two themes represent the main aspects of quality of life. The third theme covers acceptance versus resistance in coping with the disease, support, and the future. The expectations of a decrease in quality of life could adversely affect the attitude toward the future and thus reduce the willingness to engage in advance care planning, which relates to the final theme. Quality of life explicitly influenced treatment decisions for those who engaged in advance care planning. The perception of young-onset dementia and its impact on quality of life varies among people with young-onset dementia and their family caregivers, but common values include a sense of self and connection to others. Advance care planning should be introduced as a way to protect these values and align them with palliative care goals.
Cite this study APA, Vancouver, BibTeX · download .bib or .ris
APA 7th
Maters, J., Perry, M., de Wit, T., Koopmans, R. T., de Vugt, M. E., Bakker, C., et al. (2025). Advance care planning and quality of life: A qualitative interview study in people with young-onset dementia and their family caregivers. Palliative Medicine. https://doi.org/10.1177/02692163251324796
Vancouver
Maters J, Perry M, de Wit T, Koopmans RT, de Vugt ME, Bakker C, et al. Advance care planning and quality of life: A qualitative interview study in people with young-onset dementia and their family caregivers. Palliative Medicine. 2025. doi:10.1177/02692163251324796. PMID: 40088124.
BibTeX
@article{maters2025-40088124,
author = {Maters, Jasper and Perry, Marieke and de Wit, Ton and Koopmans, Raymond T.C.M. and de Vugt, Marjolein Elizabeth and Bakker, Christian and van der Steen, Jenny Theodora},
title = {{Advance care planning and quality of life: A qualitative interview study in people with young-onset dementia and their family caregivers}},
journal = {Palliative Medicine},
year = {2025},
doi = {10.1177/02692163251324796},
pmid = {40088124},
url = {https://doi.org/10.1177/02692163251324796}
}
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 names 7 authors; APA and Vancouver show the first six, BibTeX and the downloads carry all of them. Check the citation against the original before you use it.
Key findings
- Four themes were found: sense of self, connection to others, acceptance versus resistance in the face of adversity, and orientation toward the future versus focus on the present.
- The first two themes represent the main aspects of quality of life.
- The third theme covers acceptance versus resistance in coping with the disease, support, and the future.
- The expectations of a decrease in quality of life could adversely affect the attitude toward the future and thus reduce the willingness to engage in advance care planning, which relates to the final theme.
- Quality of life explicitly influenced treatment decisions for those who engaged in advance care planning.
Why it matters
This qualitative interview study found that quality of life and values like sense of self and connection to others influence advance care planning in people with young-onset dementia and their family caregivers. It does not test any treatment, cure, or prevention for Alzheimer's disease.
Study details
- Evidence strengthLow
How this study scored 43/100
Published in a peer-reviewed journal. Scored zero for study design, sample size, effect reported, studied in people and randomized / blinded because the record does not state it.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (Palliative Medicine) |
| Journal's citation record | 2 / 4 | Palliative Medicine: journal h-index 161 (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) |
| Randomized / blinded | 0 / 2 | No randomization or blinding stated — scores zero (not stated in the record — scored 0) |
| Times cited | 2 / 7 | Cited 7 times (OpenAlex, 2026-10-10) |
| Citations per year | 1 / 5 | 2.3 citations a year over 3 year(s) since 2025 |
| Impact for its field and year | 3 / 6 | Cited 5.9× the average for papers of its field and year (OpenAlex FWCI) |
| Cited by studies here | 2 / 6 | Cited by 4 other studies in this library |
| Still being cited | 1 / 4 | Cited 7 times in 2024–2026 (2026 still in progress; OpenAlex) |
| Senior author's track record | 3 / 4 | Last-listed author Jenny Theodora van der Steen: h-index 56 (OpenAlex, whole career) |
| Institution's track record | 1 / 3 | King's College London: institution h-index 1,348 (OpenAlex) |
| Multicenter collaboration | 2 / 3 | OpenAlex lists 6 institution(s) in 2 countries |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 40088124) |
| Free to read | 2 / 2 | Free to read |
| Total | 43 / 100 | — |
What each of these 20 components measures, and what this score is not →
Read the original
- DOI: 10.1177/02692163251324796
- PubMed: 40088124
- Original source →
- Free full text: Palliative Medicine →
Full text: free to read — OpenAlex lists this copy as free to read: the link above (checked 6 Feb 1020).
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