Home › Research › Disparities
Through Their Eyes: Defining ‘good life’ in dementia for health economics and outcomes research
Irina Kinchin, Erin Boland, Iracema Leroi, Joanna Coast. Social Science & Medicine, 2025-01-16
Topic: Risk, prevention and care in population studies
Despite progress in involving people living with dementia in health research, disparities remain, particularly in the field of health economics and outcomes research, where excessive reliance on proxy reports from care partners or healthcare professionals persists even when people are capable of self-reporting, leading to inequitable inclusion. This study aimed to understand the concept of a 'good life' from the perspectives of people living with dementia and examine how well current preference-based outcome measures used in health economics and outcomes research capture these perspectives. Twenty-three community-dwelling people with mild to moderate dementia in Ireland participated in in-depth interviews (September 2022-February 2023). Data were analysed using an adapted Colaizzi's seven-step phenomenological method, followed by mapping identified themes against ten commonly used preference-based outcome measures in dementia research. Results show that participants perceive a 'good life' through independence, social connections, engagement with life, adaptation to changing abilities. As dementia progresses, perceptions shift from striving for independence and active life engagement to accepting assistance and increased social support. This transition reflects a journey of adaptation, where participants redefine their sense of a 'good life' with evolving challenges and capabilities. The mapping analysis reveal that current preference-based outcome measures vary considerably in their coverage of these themes (33-83%), with none fully capturing the dynamic and evolving nature of a 'good life' as described by participants. These findings expose disparities between lived experiences and current measurement frameworks in health economics and outcomes research in dementia, calling for developing flexible and adaptive approaches to quality of life assessment in progressive conditions-approaches that not only reflect quality of life as defined by those living with the condition but also accommodate its dynamic and evolving nature throughout individual disease trajectories.
Key findings
- Results show that participants perceive a 'good life' through independence, social connections, engagement with life, adaptation to changing abilities.
- These findings expose disparities between lived experiences and current measurement frameworks in health economics and outcomes research in dementia, calling for developing flexible and adaptive approaches to quality of life assessment in progressive conditions-approaches that not only reflect quality of life as defined by those living with the condition but also accommodate its dynamic and evolving nature throughout individual disease trajectories.
Why it matters
Interviews with 23 people with mild to moderate dementia showed they define a 'good life' through independence, social connections, engagement, and adaptation as abilities change. The study found gaps between these lived experiences and current preference-based outcome measures, which matters for how quality of life is assessed, not for curing or preventing dementia.
New to this subject? Start with our plain-English guide: Disparities →
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 randomised / blinded because the record does not state it.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (Social Science & Medicine) |
| Journal's citation record | 3 / 4 | Social Science & Medicine: journal h-index 391 (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 9 times (OpenAlex, 2026-10-10) |
| Citations per year | 2 / 5 | 3.0 citations a year over 3 year(s) since 2025 |
| Impact for its field and year | 4 / 6 | Cited 8.8× 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 9 times in 2024–2026 (2026 still in progress; OpenAlex) |
| Senior author's track record | 3 / 4 | Last-listed author Joanna Coast: h-index 65 (OpenAlex, whole career) |
| Institution's track record | 1 / 3 | University of Bristol: institution h-index 1,260 (OpenAlex) |
| Multi-centre collaboration | 1 / 3 | OpenAlex lists 3 institution(s) in 2 countries |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 39837081) |
| 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: 10.1016/j.socscimed.2025.117716
- PubMed: 39837081
- Original source →
- Free full text: Social Science & Medicine →
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
Kinchin, I., Boland, E., Leroi, I., & Coast, J. (2025). Through Their Eyes: Defining ‘good life’ in dementia for health economics and outcomes research. Social Science & Medicine. https://doi.org/10.1016/j.socscimed.2025.117716
Vancouver
Kinchin I, Boland E, Leroi I, Coast J. Through Their Eyes: Defining ‘good life’ in dementia for health economics and outcomes research. Social Science & Medicine. 2025. doi:10.1016/j.socscimed.2025.117716. PMID: 39837081.
BibTeX
@article{kinchin2025-39837081,
author = {Kinchin, Irina and Boland, Erin and Leroi, Iracema and Coast, Joanna},
title = {{Through Their Eyes: Defining ‘good life’ in dementia for health economics and outcomes research}},
journal = {Social Science \& Medicine},
year = {2025},
doi = {10.1016/j.socscimed.2025.117716},
pmid = {39837081},
url = {https://doi.org/10.1016/j.socscimed.2025.117716}
}
Studies this one cites
Referenced by this study and also in the alzhub library, so you can read them here.
Related studies in Disparities
Also tagged “prevalence”
1,224 studies in the library carry the topic tag “prevalence”; these are this study's neighbours in a fixed, alphabetical-by-hash tour of them, not the closest in content. All 1,224 tagged studies.