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A qualitative study exploring the difficulties influencing decision making at the end of life for people with dementia
Lamahewa K, Mathew R, Iliffe S, Wilcock J, Manthorpe J, Sampson EL, Davies N.. Health expectations : an international journal of public participation in health care and health policy, 2017-06-22
Topic: Risk, prevention and care in population studies
Background Dementia is a progressive neurodegenerative condition characterized by declining functional and cognitive abilities. The quality of end of life care for people with dementia in the UK can be poor. Several difficult decisions may arise at the end of life, relating to the care of the person with dementia, for example management of comorbidities. Objective To explore difficulties in decision making for practitioners and family carers at the end of life for people with dementia. Design Qualitative methodology using focus groups and semi-structured interviews and thematic analysis methods. Settings and participants Former (n=4) and current (n=6) family carers of people with experience of end of life care for a person with dementia were recruited from an English dementia voluntary group in 2015. A further 24 health and care professionals were purposively sampled to include a broad range of expertise and experience in dementia end of life care. Results Four key themes were identified as follows: challenges of delivering coherent care in dynamic systems; uncertainty amongst decision makers; internal and external conflict amongst decision makers; and a lack of preparedness for the end of life. Overarching difficulties such as poor communication, uncertainty and conflict about the needs of the person with dementia as well as the decision maker's own role can characterize decision making at the end of life. Conclusions This study suggests that decision making at the end of life for people with dementia has the potential to be improved. More planning earlier in the course of dementia with an on-going approach to conversation may increase preparedness and family carers' expectations of end of life.
Key findings
- Results Four key themes were identified as follows: challenges of delivering coherent care in dynamic systems; uncertainty amongst decision makers; internal and external conflict amongst decision makers; and a lack of preparedness for the end of life.
- Conclusions This study suggests that decision making at the end of life for people with dementia has the potential to be improved.
Study details
- Evidence strengthLow
How this study scored 41/100
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. We have no data on journal's citation record, times cited, citations per year, impact for its field and year, cited by studies here, still being cited, senior author's track record, institution's track record and multi-centre collaboration, so those were left out: it earned 24 of the 58 points we could judge it on, which is 41 out of 100.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (Health expectations : an international journal of public participation in health care and health policy) |
| Journal's citation record | — / 4 | No journal record from OpenAlex — left out of this score |
| 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 | 2 / 5 | 2018 — 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 | No randomisation or blinding stated — scores zero (not stated in the record — scored 0) |
| Times cited | — / 7 | No citation count (not found in OpenAlex) — left out of this score |
| Citations per year | — / 5 | No citation count or no year — left out of this score |
| Impact for its field and year | — / 6 | No field-weighted citation impact (OpenAlex has none yet) — left out of this score |
| Cited by studies here | — / 6 | Not yet checked against this library's citation graph — left out of this score |
| Still being cited | — / 4 | No yearly citation counts — left out of this score |
| Senior author's track record | — / 4 | Senior author's record not available — left out of this score |
| Institution's track record | — / 3 | No institution listed in OpenAlex — left out of this score |
| Multi-centre collaboration | — / 3 | Institutions not listed — left out of this score |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 28640487) |
| Free to read | 2 / 2 | Free to read |
| Points | 24 / 58 | Scored on 11 of 20 parts. We have no data for the rest, so they are left out: 24 of the 58 points we could judge it on is 41 out of 100. |
| Total | 41 / 100 | — |
What each of these 20 components measures, and what this score is not →
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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. 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.
APA 7th
Lamahewa, K., Mathew, R., Iliffe, S., Wilcock, J., Manthorpe, J., Sampson, E. L., et al. (2018). A qualitative study exploring the difficulties influencing decision making at the end of life for people with dementia. Health expectations : an international journal of public participation in health care and health policy. https://doi.org/10.1111/hex.12593
Vancouver
Lamahewa K, Mathew R, Iliffe S, Wilcock J, Manthorpe J, Sampson EL, et al. A qualitative study exploring the difficulties influencing decision making at the end of life for people with dementia. Health expectations : an international journal of public participation in health care and health policy. 2018. doi:10.1111/hex.12593. PMID: 28640487.
BibTeX
@article{lamahewa2018-28640487,
author = {Lamahewa, K. and Mathew, R. and Iliffe, S. and Wilcock, J. and Manthorpe, J. and Sampson, E. L. and Davies, N.},
title = {{A qualitative study exploring the difficulties influencing decision making at the end of life for people with dementia}},
journal = {Health expectations : an international journal of public participation in health care and health policy},
year = {2018},
doi = {10.1111/hex.12593},
pmid = {28640487},
url = {https://doi.org/10.1111/hex.12593}
}
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