Home › Research › Disparities
Constructing Alzheimer's: narratives of lost identities, confusion and loneliness in old age
Hinton WL, Levkoff S.. Culture, medicine and psychiatry, 1999-12-01
Topic: Amyloid, tau and blood-test diagnosis
This paper is a qualitative study based on retrospective, unstructured, qualitative interviews with Mrs. Jones and other African-American, Chinese-American, Irish-American and Latino family caregivers in the Boston area. A narrative approach is used to show how family caregivers draw on their cultural and personal resources to create stories about the nature and meaning of illness and to ask how ethnic identity may influence the kinds of stories family caregivers tell. Three different story types are identified and described, each with a distinctive configuration of illness meanings and overarching theme, or storyline: a subset of African-American, Irish-American, and Chinese-American caregivers told us stories about Alzheimer's as a disease that erodes the core identity of a loved one and deteriorates their minds; a subset of Chinese caregivers narrated stories that emphasized how families managed confusion and disabilities, changes ultimately construed as an expected part of growing old; a subset of Puerto Rican and Dominican families, while using the biomedical label of Alzheimer's disease or dementia, placed the elder's illness in stories about tragic losses, loneliness, and family responsibility. To construct their stories, caregivers drew upon both biomedical explanations and other cultural meanings of behavioral and cognitive changes in old age. Their stories challenge us to move beyond the sharp contrast between ethnic minority and non-ethnic minority views of dementia-related changes, to local clinics and hospitals as sites where biomedical knowledge is interpreted, communicated, discussed, and adapted to the perspectives and lived realities of families.
Cite this study APA, Vancouver, BibTeX · download .bib or .ris
APA 7th
Hinton, W. L., & Levkoff, S. (1999). Constructing Alzheimer's: narratives of lost identities, confusion and loneliness in old age. Culture, medicine and psychiatry. https://doi.org/10.1023/a:1005516002792
Vancouver
Hinton WL, Levkoff S. Constructing Alzheimer's: narratives of lost identities, confusion and loneliness in old age. Culture, medicine and psychiatry. 1999. doi:10.1023/a:1005516002792. PMID: 10647944.
BibTeX
@article{hinton1999-10647944,
author = {Hinton, W. L. and Levkoff, S.},
title = {{Constructing Alzheimer's: narratives of lost identities, confusion and loneliness in old age}},
journal = {Culture, medicine and psychiatry},
year = {1999},
doi = {10.1023/a:1005516002792},
pmid = {10647944},
url = {https://doi.org/10.1023/a:1005516002792}
}
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.
Key findings
- Jones and other African-American, Chinese-American, Irish-American and Latino family caregivers in the Boston area.
- A narrative approach is used to show how family caregivers draw on their cultural and personal resources to create stories about the nature and meaning of illness and to ask how ethnic identity may influence the kinds of stories family caregivers tell.
- Three different story types are identified and described, each with a distinctive configuration of illness meanings and overarching theme, or storyline: a subset of African-American, Irish-American, and Chinese-American caregivers told us stories about Alzheimer's as a disease that erodes the core identity of a loved one and deteriorates their minds; a subset of Chinese caregivers narrated stories that emphasized how families managed confusion and disabilities, changes ultimately construed as an expected part of growing old; a subset of Puerto Rican and Dominican families, while using the biomedical label of Alzheimer's disease or dementia, placed the elder's illness in stories about tragic losses, loneliness, and family responsibility.
- To construct their stories, caregivers drew upon both biomedical explanations and other cultural meanings of behavioral and cognitive changes in old age.
- Their stories challenge us to move beyond the sharp contrast between ethnic minority and non-ethnic minority views of dementia-related changes, to local clinics and hospitals as sites where biomedical knowledge is interpreted, communicated, discussed, and adapted to the perspectives and lived realities of families.
Why it matters
This qualitative interview study describes how family caregivers from different ethnic backgrounds construct different stories about the nature and meaning of Alzheimer's disease. It explores caregiver narratives and does not test any treatment, cure, or prevention.
New to this subject? Start with our plain-English guide: Disparities →
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 and randomised / blinded because the record does not state it.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (Culture, medicine and psychiatry) |
| Journal's citation record | 1 / 4 | Culture Medicine and Psychiatry: journal h-index 107 (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 | 1 / 5 | 1999 — older than 20 years, still counted |
| 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 | 3 / 3 | Studied in people (pubmed indexes it as a clinical or observational study) |
| Randomised / blinded | 0 / 2 | No randomisation or blinding stated — scores zero (not stated in the record — scored 0) |
| Times cited | 5 / 7 | Cited 126 times (OpenAlex, 2026-10-10) |
| Citations per year | 2 / 5 | 4.3 citations a year over 29 year(s) since 1999 |
| Impact for its field and year | 3 / 6 | Cited 3.1× the average for papers of its field and year (OpenAlex FWCI) |
| Cited by studies here | 2 / 6 | Cited by 8 other studies in this library |
| Still being cited | 1 / 4 | Cited 4 times in 2024–2026 (2026 still in progress; OpenAlex) |
| Senior author's track record | 3 / 4 | Last-listed author Sue Ellen Levkoff: h-index 53 (OpenAlex, whole career) |
| Institution's track record | 0 / 3 | University of California Davis Medical Center: institution h-index 480 (OpenAlex) |
| Multi-centre collaboration | 0 / 3 | OpenAlex lists 1 institution(s) in 1 country — scores zero (affiliation lists can be incomplete) |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 10647944) |
| Free to read | 0 / 2 | Behind a paywall — scores zero |
| Total | 41 / 100 | — |
What each of these 20 components measures, and what this score is not →
Read the original
May need a subscription OpenAlex found no free copy of the full text (checked 6 Feb 1020), so the publisher may charge for it. The PubMed abstract is free.
Related
Studies in the library that share something with this one. The line above each title says what.
Studies this one cites
Referenced by this study and also in the alzhub library, so you can read them here.
Later studies that cite this one
8 studies in the alzhub library list this one in their references. Showing the 7 highest-scoring.
Related studies in Disparities
Also in Disparities
98 studies in the library are filed under Disparities with no topic tag they share with another; these are this study's neighbours in a fixed tour of them. The Disparities hub.