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Patient voice — Alzheimer's disease

This directory is the patient-experience layer of the Alzheimer's disease knowledge base. It records what people living with dementia and their care partners report about symptom onset, diagnosis, disclosure, identity, stigma, service access, care settings and the end of life. It complements clinical outcomes: a CDR-SB score summarises impairment but cannot capture disempowerment after a diagnosis, the structural stigma faced by a 58-year-old with posterior cortical atrophy, or a carer's fear of being responsible for causing a death (Low 2018, PMID 28828999; Lowe 2026, PMID 42478735; Sellars 2019, PMID 30404576).

Files in this layer

File Contents
organizations.md Verified organisations across regions, their publicly visible functions, and a quarantine list of failed fetches
themes.md Aggregate thematic synthesis; every established theme has at least two independent sources
sources.md Annotated PubMed and public-web sources, the search and fetch record, and an explicit coverage-limits statement

The wiki-level synthesis is ../../wiki/patient-experience-and-advocacy.md; this layer preserves the evidentiary substrate.

Method — session of 2026-08-31

Published research

Live PubMed E-utilities searches combined dementia or Alzheimer with:

  • lived experience, qualitative, meta-synthesis, living well;
  • receiving a diagnosis, diagnosis disclosure, psychosocial factors;
  • stigma, experiences, systematic review;
  • young onset dementia, lived experience, self-identity, driving cessation;
  • advance care planning, end-of-life care, perspectives;
  • ethnicity, pathways to care, immigrants, carers;
  • caregiver, depression, anxiety, prevalence, meta-analysis;
  • nursing home residents, what matters to you;
  • research priorities, involvement.
  • low- and middle-income countries, LMIC, Colombia, Iran, Uganda, Malaysia, qualitative, patient, caregiver.

Every PMID used in these files was returned by a live PubMed query in this session and then resolved through efetch before use. Qualitative syntheses were preferred over single studies; individual qualitative studies were retained where they cover a domain that syntheses do not (nursing-home residents' own accounts; driving cessation in young-onset dementia; perspectives on the future and end of life).

Organisations

Organisations were sought by region and by population served: global federations, national associations, a body led by people with dementia themselves, and research-funding charities. Each organisation in the main table had its own public website fetched on 2026-08-31 and returned content. A successful fetch verifies a live public presence and the functions visible on that page — not charitable registration, service quality, geographic reach or representativeness. Sites that returned DNS failure, connection reset, 403 or 404 are listed separately and are not used as content sources.

What was deliberately not done

  • No closed group, member forum, social-media thread, messaging channel or logged-in community was accessed.
  • No individual story page was mined for personal detail. Where an organisation's public functions include a story hub, the hub is described at the level of its existence and genre only.
  • No patient quotation is reproduced anywhere in this layer.

Ethics rules applied

  1. Public sources only. Peer-reviewed literature and public organisational web pages.
  2. Aggregate synthesis. A pattern becomes a theme only when supported by at least two independent sources.
  3. Paraphrase, not quotation. No patient quotation is reproduced in this build. This is stricter than the repository's maximum of 15 attributed words (CONVENTIONS §3).
  4. No private names or identifying details. No individual with dementia or family carer is named or described identifiably. Public figures and organisational spokespeople would be permissible under repository rules but none is cited here.
  5. No cross-source dossiers. Details from separate sources are never combined into a narrative about one person.
  6. Voice is not efficacy evidence. Experience data identify priorities, harms and mechanisms; they cannot establish that a treatment works. Where this layer states a prevalence, the source is a quantitative study, labelled as such.
  7. Communication and cognitive impairment shape who is heard. People with advanced dementia, severe communication impairment or no English are systematically under-represented in every synthesis cited here. Studies that interview people with dementia directly, rather than proxies, are noted in sources.md.
  8. Carer voice and person-with-dementia voice are distinct. They are reported separately even when the two are interdependent, because their interests can diverge — most visibly in advance care planning (Sellars 2019, PMID 30404576).

How to interpret this synthesis

  • Qualitative findings establish recurring patterns and meanings. They do not estimate prevalence. The prevalence figures quoted in themes.md come from named quantitative studies.
  • "Dementia" in most of these studies is a mixed population; few qualitative studies restrict to biomarker-confirmed Alzheimer's disease. Where a source is specific to young-onset dementia or to nursing-home residents, this is stated.
  • Experience is shaped by health system, culture and era. A 2006 synthesis and a 2026 systematic review describe different service environments.
  • Where a review found only a handful of eligible studies — five for young-onset self-identity (Tang 2023, PMID 37646673) — the synthesis is thin and is labelled as such.

Updating this layer

  • Re-fetch every organisation before adding or materially revising its entry; record the HTTP outcome and the access date.
  • Add a theme only after locating a second independent source.
  • Prefer designs that interview people with dementia directly over proxy report, and record which was used.
  • Preserve fetch failures and regional gaps. A missing website is not evidence that no organisation or community exists.
  • Propagate any material change to ../../wiki/patient-experience-and-advocacy.md and to the condition LOG.md in the same session.

Coverage boundary

This layer is strongest for English-language syntheses and for organisations with stable, indexable English or major-European-language websites. Verified organisations span global federations, Europe, North America, Australia, Japan, Brazil and South Africa. It is not a census. The 2026-08-31 audit added qualitative studies from Colombia, Iran, Uganda and Malaysia, but most are caregiver-, provider- or dyad-centred rather than patient-led. The regions with the largest projected growth in dementia — north Africa and the Middle East, and eastern sub-Saharan Africa (PMID 34998485) — remain thinly represented. South Asia, north Africa, China and Spanish-language Latin America are under-covered; two South Asian organisation sites failed direct fetch and remain quarantined in organizations.md. Full accounting is in sources.md.