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The perspectives of people with dementia on their future, end of life and on being cared for by others: A qualitative study
Sascha Bolt, Jenny Theodora van der Steen, Chandni Khemai, Jos M. G. A. Schols, Sandra M.G. Zwakhalen, Judith M M Meijers. Journal of Clinical Nursing, 2021-01-15
Topic: Risk, prevention and care in population studies
Five overarching themes derived from the interviews were as follows: (a) My life still has value and meaning, (b) I am my own unique individual, (c) I place my trust in other people, (d) The future worries me, and (e) I accept and embrace what life brings. Participants' thoughts about the future and the end of life involved feelings of ambiguity and anxiety, but also of contentment and resignation. Despite worrying thoughts of decline, participants primarily demonstrated resilience and acceptance. They expressed appreciation and trust towards those who care for them. They wished to be recognised as unique and worthy humans, until the end of life. RELEVANCE TO CLINICAL PRACTICE: This study demonstrates capability and willingness of people with dementia to discuss the future and end-of-life topics. Public and professional awareness may facilitate opportunities for informal end-of-life discussions. Healthcare professionals should promote belongingness of persons with dementia and strive to build equal, trustful care relationships with them and their families.
Key findings
- Five overarching themes derived from the interviews were as follows: (a) My life still has value and meaning, (b) I am my own unique individual, (c) I place my trust in other people, (d) The future worries me, and (e) I accept and embrace what life brings.
- Participants' thoughts about the future and the end of life involved feelings of ambiguity and anxiety, but also of contentment and resignation.
- Despite worrying thoughts of decline, participants primarily demonstrated resilience and acceptance.
- They expressed appreciation and trust towards those who care for them.
- They wished to be recognised as unique and worthy humans, until the end of life.
Why it matters
This qualitative study found that people with dementia expressed worries about decline but primarily demonstrated resilience and acceptance, and wished to be recognised as unique and worthy humans until the end of life. It concluded that people with dementia are capable and willing to discuss the future and end-of-life topics.
Study details
- Evidence strengthLow
How this study scored 44/100
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 (Journal of Clinical Nursing) |
| Journal's citation record | 2 / 4 | Journal of Clinical Nursing: journal h-index 174 (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 | 3 / 5 | 2021 — within 6 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 | 3 / 7 | Cited 30 times (OpenAlex, 2026-10-10) |
| Citations per year | 2 / 5 | 4.3 citations a year over 7 year(s) since 2021 |
| Impact for its field and year | 3 / 6 | Cited 3.3× the average for papers of its field and year (OpenAlex FWCI) |
| Cited by studies here | 2 / 6 | Cited by 3 other studies in this library |
| Still being cited | 2 / 4 | Cited 19 times in 2024–2026 (2026 still in progress; OpenAlex) |
| Senior author's track record | 2 / 4 | Last-listed author Judith M M Meijers: h-index 34 (OpenAlex, whole career) |
| Institution's track record | 1 / 3 | Radboud University Nijmegen: institution h-index 1,143 (OpenAlex) |
| Multi-centre collaboration | 2 / 3 | OpenAlex lists 6 institution(s) in 1 country |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 33432696) |
| Free to read | 2 / 2 | Free to read |
| Total | 44 / 100 | — |
What each of these 20 components measures, and what this score is not →
Read the original
- DOI: 10.1111/jocn.15644
- PubMed: 33432696
- Original source →
- Free full text: Journal of Clinical Nursing →
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
Bolt, S., van der Steen, J. T., Khemai, C., Schols, J. M. G. A., Zwakhalen, S. M., & Meijers, J. M. M. (2021). The perspectives of people with dementia on their future, end of life and on being cared for by others: A qualitative study. Journal of Clinical Nursing. https://doi.org/10.1111/jocn.15644
Vancouver
Bolt S, van der Steen JT, Khemai C, Schols JMGA, Zwakhalen SM, Meijers JMM. The perspectives of people with dementia on their future, end of life and on being cared for by others: A qualitative study. Journal of Clinical Nursing. 2021. doi:10.1111/jocn.15644. PMID: 33432696.
BibTeX
@article{bolt2021-33432696,
author = {Bolt, Sascha and van der Steen, Jenny Theodora and Khemai, Chandni and Schols, Jos M. G. A. and Zwakhalen, Sandra M.G. and Meijers, Judith M M},
title = {{The perspectives of people with dementia on their future, end of life and on being cared for by others: A qualitative study}},
journal = {Journal of Clinical Nursing},
year = {2021},
doi = {10.1111/jocn.15644},
pmid = {33432696},
url = {https://doi.org/10.1111/jocn.15644}
}
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