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Patient-voice sources — Alzheimer's disease

Last curated: 2026-08-31

All PMIDs below were retrieved through live PubMed E-utilities on 2026-08-31 and their metadata regenerated from the live records. Web pages were fetched on the same date; failures are recorded. Each annotation states what the source can support and its principal limitation. An annotation is not an endorsement.

A. Qualitative syntheses and systematic reviews

  1. Bunn F, Goodman C, Sworn K, et al. Psychosocial factors that shape patient and carer experiences of dementia diagnosis and treatment: a systematic review of qualitative studies. PLoS Med. 2012;9:e1001331. PMID 23118618. — 126 papers, 102 studies, 3,095 participants. The reference synthesis for the diagnosis experience: three overarching themes (pathways through diagnosis; resolving conflicts to accommodate a diagnosis; strategies to minimise impact), with stigma, symptom normalisation and lack of knowledge as consistent barriers and post-diagnostic specialist support as the consistent gap. Limitation: searches ran to 2011–2012, so it predates plasma biomarkers and disease-modifying therapy entirely.

  2. Low LF, Swaffer K, McGrath M, Brodaty H. Do people with early stage dementia experience Prescribed Disengagement®? A systematic review of qualitative studies. Int Psychogeriatr. 2018;30:807-831. PMID 28828999. — 35 papers, 373 participants. Tests a specific hypothesis and reports a negative-but-qualified answer: disengagement is not explicitly prescribed, but may be implied by the diagnosis process and inadequate post-diagnostic support, contributing to disempowerment and self-stigma. Limitation: the construct being tested originates from advocacy rather than from prior empirical work, which shapes what the review looked for.

  3. Steeman E, de Casterlé BD, Godderis J, Grypdonck M. Living with early-stage dementia: a review of qualitative studies. J Adv Nurs. 2006;54:722-38. PMID 16796664. — 33 articles from 28 studies, 21 research samples. Establishes the arc from discovering impairment to integrating it into everyday life, and the threat to security, autonomy and social meaning. Limitation: two decades old; service context has changed substantially.

  4. O'Malley M, Carter J, Stamou V, et al. Receiving a diagnosis of young onset dementia: a scoping review of lived experiences. Aging Ment Health. 2021;25:1-12. PMID 31647324. — 8 of 47 identified papers quality-assessed and included, plus a Delphi component. Establishes two distinct delay mechanisms (help-seeking and clinician misattribution) and the influence of clinician language on the impact of diagnosis. Limitation: small included set; literature searched to November 2018.

  5. Tang X, Zhang Y, Liu D, et al. Lived experiences of maintaining self-identity among persons living with young-onset dementia: a qualitative meta-synthesis. Dementia (London). 2023;22:1776-1798. PMID 37646673. — Only five eligible publications. Four themes tracing identity across the disease trajectory, including reshaping at later stages. Limitation: the thinnest evidence base of any synthesis cited here; treat the themes as provisional.

  6. Lowe F, et al. The experience of stigma within the young onset dementia (YOD) population: a systematic review of qualitative research. Health Expect. 2026;29:e70773. PMID 42478735. — 2,994 articles screened, 17 included, searched December 2025. Four themes including structural stigma and barriers to service access. Limitation: single-researcher screening at both stages with 10% second-reviewer checking; no patient and public involvement in the review itself, which the authors state.

  7. Yu J, et al. Dyadic coping experience of persons with young-onset dementia and their spousal caregivers: a review of qualitative studies and meta-synthesis. J Alzheimers Dis. 2025;106:832-841. PMID 40534425. — 19 studies, 136 findings, 14 categories, 6 synthesised findings. The only source located that treats the person with dementia and the spouse as a dyad rather than as separate populations. Limitation: couple-level synthesis can obscure divergent interests within the dyad.

  8. Sellars M, Chung O, Nolte L, et al. Perspectives of people with dementia and carers on advance care planning and end-of-life care: a systematic review and thematic synthesis of qualitative studies. Palliat Med. 2019;33:274-290. PMID 30404576. — 84 studies, 389 people with dementia and 1,864 carers. Five themes, including the fear of being responsible for cause of death and the wish to have decisional responsibility alleviated. Limitation: carers outnumber people with dementia 5:1 in the underlying data, so the synthesis is weighted towards the carer perspective.

  9. Mukadam N, Cooper C, Livingston G. A systematic review of ethnicity and pathways to care in dementia. Int J Geriatr Psychiatry. 2011;26:12-20. PMID 21157846. — 3 quantitative and 10 qualitative papers. Enumerates the specific beliefs and experiences that delay help-seeking in minority ethnic groups, and identifies recognising dementia as an illness as the facilitator. Limitation: small included set; "minority ethnic" aggregates highly heterogeneous groups.

  10. Chejor P, Laging B, Whitehead L, Porock D. Experiences of older immigrants living with dementia and their carers: a systematic review and meta-synthesis. BMJ Open. 2022;12:e059783. PMID 35613772. — 3,857 records screened, 18 studies included, 2000–April 2021. Five synthesised findings; the key conclusion is that experience differs little between immigrants and native-born populations while access differs sharply. Limitation: "immigrant" spans very different migration histories, languages and host systems.

  11. Nguyen TA, et al. Experiences and perceptions of dementia in Vietnam and among the Vietnamese diaspora: a systematic review of qualitative studies. Aging Ment Health. 2023;27:301-316. PMID 35549573. — Culturally specific evidence from a setting under-represented in the English-language literature. Limitation: single-country and diaspora focus; conclusions do not transfer to other cultural contexts.

  12. Kay J, et al. The experiences of living with dementia within an under-served geographical area: a systematic review and qualitative synthesis. Age Ageing. 2026;55. PMID 42341205. — Addresses geographical under-service as a distinct axis from ethnicity and income. Limitation: recency means it has not been independently replicated.

B. Primary qualitative studies

  1. Scott TL, et al. A qualitative study exploring the experiences and needs of people living with young onset dementia related to driving cessation: "It's like you get your legs cut off". Age Ageing. 2023;52. PMID 37481262. — 18 in-depth interviews: 10 people with young-onset dementia and 8 family caregivers, multi-perspective descriptive phenomenology with a topic guide developed in consultation with lived-experience experts. Four themes; establishes that driving cessation in young-onset dementia collides with employment, dependent children and financial commitments. Limitation: small, single-setting; the title quotation is a participant's and is not reproduced in this knowledge base's synthesis, in line with the layer's ethics rules.

  2. Bolt SR, van der Steen JT, Mujezinović I, et al. The perspectives of people with dementia on their future, end of life and on being cared for by others: a qualitative study. J Clin Nurs. 2022;31:1738-1752. PMID 33432696. — 18 in-depth interviews with community-dwelling people with dementia, inductive content analysis, COREQ-reported. Five themes. Its primary contribution is demonstrating capability and willingness to discuss the future. Limitation: South-Limburg, Netherlands; community-dwelling and able to consent to an in-depth interview, so it excludes the people whose end-of-life care is most contested.

  3. Nygaard A, Halvorsrud L, Linnerud S, Grov EK, Bergland A. What matters to you when the nursing is your home: a qualitative study on the views of residents with dementia living in nursing homes. BMC Geriatr. 2020;20:227. PMID 32600264. — 35 unstructured in-depth interviews with nursing-home residents with dementia, thematic analysis. One overarching theme (home versus institution) and five sub-themes. Notable for interviewing residents directly rather than using proxies. Limitation: single country; residents able to participate in unstructured interviews are not representative of all residents.

  4. Ramos C, et al. Understanding illness awareness in Alzheimer's disease: a qualitative study with patient-caregiver dyads in Colombia. Front Aging Neurosci. 2026;18:1748863. PMID 41717228. — 20 people with major neurocognitive disorder due to AD and 24 caregivers, semi-structured interviews and grounded-theory analysis in Medellín. Awareness was shaped by personal history, socioeconomic conditions and social support. Limitation: one Colombian city and a dyadic framing; it does not constitute a national patient-priority exercise.

  5. Sadeghi-Mahalli F, et al. Factors affecting support: experiences of Iranian older spousal caregivers of people with Alzheimer's disease and their support resources. Aging Ment Health. 2025;29:423-432. PMID 39097934. — 10 spousal caregivers, 3 family members and 3 professionals, conventional content analysis. Support depended on caregiver support-seeking and the capacity of family, society and formal services. Limitation: caregiver-focused and small; no person with AD was interviewed directly.

  6. Abaasa C, Obua C, Wakida EK, Rukundo GZ. A qualitative investigation of the psychosocial services utilised by care-givers of patients with Alzheimer's disease and related dementias in southwestern Uganda. Ageing Soc. 2023. PMID 37680685. — 34 caregiver interviews at three referral hospitals. Identifies clinician education plus family, community and religious support outside the medical system. Limitation: caregiver and referral-hospital sample; people with dementia were not interviewed.

  7. Ainamani HE, et al. Caring for people with dementia in rural Uganda: qualitative study of caregiving burden experienced by informal and formal caregivers. J Glob Health Rep. 2020;4:e2020049. PMID 33043153. — 10 informal and 5 formal caregivers in Mbarara. Reports physical, financial and psychological stressors, including family conflict, anxiety and stigma. Limitation: small caregiver-only sample in one rural setting.

  8. Goodson ML, et al. A qualitative study on formal and informal carers' perceptions of dementia care provision and management in Malaysia. Front Public Health. 2021;9:637484. PMID 34368037. — 20 providers and facilitators, including health professionals, paid carers, traditional practitioners, faith healers, community leaders and NGOs. Services existed but were fragmented and underused; late presentation, workforce constraints and family responsibility dominated. Limitation: provider perceptions, not direct patient testimony.

  9. Parks AL, Thacker A, Dohan D, et al. A qualitative study of people with Alzheimer's disease in a memory clinic considering lecanemab treatment. J Alzheimers Dis. 2025;105:494-504. PMID 40207637. — 22 people with biomarker- or imaging-confirmed AD who had discussed lecanemab with a clinician (mean age 70, 36% women). Information came from advocacy organisations, the internet and clinicians; hope and the existential threat of dementia drove readiness to start; individual traits, family and trust in expertise shaped how risks were weighed, from "at any cost" to declining. Participants wanted individualised information and to hear from people who had taken the drug. Limitation: 100% White, single health-system context, and all participants were considering rather than receiving treatment.

  10. Katayama S, Tsujimoto M, Suzuki K, et al. Care partners' perceptions of amyloid-targeting therapy and treat-to-clearance for Alzheimer's disease in Japan: a qualitative study. Neurol Ther. 2026;15:257-267. PMID 41307609. — 22 Japanese care partners (median age 59; 50% adult children, 45.5% spouses/partners) interviewed about donanemab and the treat-to-clearance approach. Mental burden and time constraints dominate; confirmed plaque clearance brings relief; stopping is expected to save waiting time and money but leaves worry about progression and follow-up. Limitation: care-partner voice only, one country, online interviews.

C. Supporting quantitative syntheses and cohorts

  1. Pinquart M, Sörensen S. Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychol Aging. 2003;18:250-67. PMID 12825775. — 84 articles. Effect sizes for depression (g=0.58), stress (0.55), self-efficacy (0.54), well-being (−0.40) and physical health (0.18); dementia caregiving shows larger differences than mixed caregiving. Limitation: two decades old; caregiving contexts and services have changed.

  2. Kaddour L, Kishita N. Anxiety in informal dementia carers: a meta-analysis of prevalence. J Geriatr Psychiatry Neurol. 2020;33:161-172. PMID 31409196. — 10 studies, pooled prevalence 32.1% (95% CI 20.6–46.2), significant heterogeneity not reduced by sensitivity analysis. Quantifies a domain the authors describe as neglected relative to depression and burden. Limitation: wide interval; instrument-dependent.

  3. Belle SH, Burgio L, Burns R, et al. Enhancing the quality of life of dementia caregivers from different ethnic or racial groups: a randomized, controlled trial. Ann Intern Med. 2006;145:727-38. PMID 17116917. — REACH II: 642 caregivers across three racial/ethnic groups in five US cities. Demonstrates modifiability of caregiver depression (12.6% vs 22.7%, P=0.001). Limitation: single 6-month follow-up; heterogeneous cultures combined into single groups, as the authors state.

  4. Schmutte T, Olfson M, Xie M, Marcus SC. Suicide risk in first year after dementia diagnosis in older adults. Alzheimers Dement. 2022;18:262-271. PMID 34036738. — 2,667,987 newly diagnosed Medicare beneficiaries linked to the National Death Index. SMR 1.53 overall, 3.40 at ages 65–74, risk concentrated in the first 90 days. Limitation: claims-based diagnosis date, which approximates but does not equal the date of disclosure.

  5. Günak MM, Barnes DE, Yaffe K, Li Y, Byers AL. Risk of suicide attempt in patients with recent diagnosis of mild cognitive impairment or dementia. JAMA Psychiatry. 2021;78:659-666. PMID 33760039. — 147,595 propensity-matched US veterans. Risk elevated for recent diagnoses only (MCI HR 1.73; dementia 1.44), not for prior diagnoses. Limitation: 97.1% male veteran population; generalisability to women and civilians is untested.

D. Organisation websites fetched successfully (2026-08-31)

Organisation URL
Alzheimer's Disease International https://www.alzint.org/ (search-index verified 2026-08-31; direct audit fetch HTTP 403)
Dementia Alliance International https://www.dementiaallianceinternational.org/
Alzheimer Europe https://www.alzheimer-europe.org/
Alzheimer's Association (US) https://www.alz.org/
Alzheimer's Society (UK) https://www.alzheimers.org.uk/
Alzheimer's Research UK https://www.alzheimersresearchuk.org/
Alzheimer Society of Canada https://alzheimer.ca/en
Dementia Australia https://www.dementia.org.au/
認知症の人と家族の会 (Alzheimer's Association Japan) https://www.alzheimer.or.jp/
CEAFA (Spain) https://www.ceafa.es/
ABRAz (Brazil) https://abraz.org.br/
DementiaSA (South Africa) https://www.dementiasa.org/
ADASA (South Africa) https://www.adasa.org.za/ (reached via 301 redirect from https://alzheimers.org.za/)

E. Fetch failures (quarantined, not used as sources)

Attempted URL Outcome
https://ardsi.org/ HTTP 406 on audit direct fetch; official site search-index verified, no content used
https://www.alzheimers.org.in/ DNS resolution failure (ENOTFOUND)

F. Search and fetch record

  • Database: PubMed via E-utilities, queried 2026-08-31. Search terms are listed in README.md.
  • Selection rule: qualitative syntheses preferred; primary qualitative studies retained where they cover a domain no synthesis covers (nursing-home residents' own accounts; driving cessation in young-onset dementia; perspectives on the future and end of life). Quantitative studies included only where a theme requires a prevalence or risk estimate, and labelled as quantitative.
  • Web fetch: each organisation's own homepage or English-language landing page was re-fetched during the audit. Two South Asian sites still failed direct fetch. ADI returned HTTP 403 to command-line retrieval but its official pages were live in a current web index; it remains labelled as search-index verified rather than directly fetched in the audit record.

G. Coverage limits — stated honestly

  1. Language. English-language search terms and predominantly English or major-European-language websites. The Japanese and Brazilian organisation pages were read in translation; the Spanish page likewise. No Chinese, Arabic or Hindi source was retrieved.
  2. Geography. The audit found qualitative studies from Colombia, Iran, Uganda and Malaysia, but no verified organisation in South Asia, China, north Africa, the Middle East, sub-Saharan Africa outside South Africa, or Spanish-speaking Latin America. Two South Asian sites failed direct fetch. This matters because the largest projected increases in dementia are in north Africa/Middle East (+367%) and eastern sub-Saharan Africa (+357%) (PMID 34998485).
  3. Condition specificity. Most qualitative studies recruit people with "dementia", not biomarker-confirmed Alzheimer's disease. Where a source is specific to young-onset dementia or a care setting, that is stated.
  4. Whose voice. Every synthesis here depends on people able to give an interview. People with advanced dementia, severe communication impairment, or no shared language with the researcher are systematically absent. Two of the three primary studies (Bolt, Nygaard) interviewed people with dementia directly rather than proxies, which is the exception rather than the norm in this literature.
  5. Era. Sources range from 2003 to 2026. Two qualitative studies of anti-amyloid therapy were added by the 2026-09-03 audit (items 21 and 22), but both concern the decision to start, continue or stop treatment. A live PubMed search on 2026-09-03 still retrieved no qualitative study of the treatment period itself — infusion attendance, surveillance MRI or an ARIA event. That treatment-experience gap is distinct from the substantial quantitative safety literature.
  6. Publication and framing bias. Qualitative syntheses draw on studies whose interview guides were designed by researchers; domains no one thought to ask about are invisible here.