Patient organisations and advocacy networks — Alzheimer's disease¶

Every organisation in the main table was verified against its own public website on 2026-08-31. Twelve returned content directly during the independent audit. Alzheimer's Disease International returned HTTP 403 to command-line retrieval, but its official homepage and member directory were current in the live web index (105 member associations); its audit status is therefore search-index verified, not direct-fetch verified. Verification establishes a live public presence and the functions visible on the cited pages. It does not verify charitable registration, service quality, geographic reach, or representativeness. Failed direct fetches are recorded at the end.

Citation form: (Organisation — URL, accessed 2026-08-31).

Quick map¶

Organisation	Region	Primary focus	Publicly visible patient-facing role
Alzheimer's Disease International (ADI)	Global federation	Advocacy, awareness, global reporting	World Alzheimer Report series, World Alzheimer's Month, member-association network, advocacy toolkits
Dementia Alliance International (DAI)	Global; members must have a dementia diagnosis	Representation by people with dementia	Peer support groups, webinars, human-rights advocacy, member blogs
Alzheimer Europe	Europe (44 associations, 39 countries)	Umbrella policy body	European Working Group of People with Dementia; European Dementia Carers Working Group; policy and publications
Alzheimer's Association	United States	Support, research funding, advocacy	24/7 helpline in 200+ languages, care consultations, support groups, federal advocacy
Alzheimer's Society	United Kingdom	Support, research, campaigning	Dementia Support Line, online support forum, policy campaigns, public story content
Alzheimer's Research UK	United Kingdom	Research funding	Dementia information, research participation, awareness campaigns
Alzheimer Society of Canada	Canada	Support and research	First Link® connection programme, national dementia guidelines, chapter directory, research programme
Dementia Australia	Australia	Support, advocacy, education	National Dementia Helpline (24/7), post-diagnostic counselling, Memory Lane Cafes, Dementia Advocates Program
認知症の人と家族の会 (Alzheimer's Association Japan)	Japan	Families and people with dementia	Telephone counselling, peer gatherings, prefectural branches, policy declarations
CEAFA	Spain	Confederation of associations	Local association network, political advocacy, training, national congresses
ABRAz	Brazil	National association	Regional chapters, Portuguese-language education, congress, public-policy work
DementiaSA	South Africa	Support and training	Virtual help and support, counselling groups, caregiver training, advice sheets
ADASA	South Africa (9 provinces)	Support and education	Volunteer-led support groups, psycho-social support and counselling, webinars, community events

Global¶

Alzheimer's Disease International (ADI)¶

Scope: global federation described on its site as "the global voice on dementia," working with dementia associations in over 100 countries.
Visible functions: World Alzheimer Report series (the 2025 edition focused on rehabilitation); an Alzheimer's Disease Atlas; World Alzheimer's Month campaigns; member accreditation; an annual global conference; dementia facts, risk-factor and caregiver education; a dementia-as-a-non-communicable-disease advocacy toolkit.
Patient-voice value: the principal route by which national association priorities reach global policy. It is a federation of organisations, not a membership body of people with dementia.
Source: (Alzheimer's Disease International — https://www.alzint.org/, search-index verified 2026-08-31; direct audit fetch HTTP 403).

Dementia Alliance International (DAI)¶

Scope: global non-profit whose membership is restricted to people with a medically confirmed diagnosis of any type of dementia.
Visible functions: confidential online peer support groups for people with dementia; webinars and a Brain Health Hub; human-rights and disability submissions; member blogs; an experiences-living-with-dementia survey; an advocacy award; volunteering routes for members.
Patient-voice value: the only organisation in this table whose governance and membership are defined by having the condition, which makes it the closest available approximation to an unmediated patient voice in this field. Its framing emphasises what members can do rather than what they have lost — the direct counter to the disengagement pattern described in themes.md.
Source: (Dementia Alliance International — https://www.dementiaallianceinternational.org/, accessed 2026-08-31).

Europe¶

Alzheimer Europe¶

Scope: umbrella organisation of 44 national Alzheimer's associations across 39 European countries; non-profit NGO.
Visible functions: EU-level campaigns and national dementia strategy work; European Parliament advocacy; the European Working Group of People with Dementia and a European Dementia Carers Working Group, both with their own membership structures; Dementia in Europe magazine, reports and annual reports; conferences; an anti-stigma award.
Patient-voice value: the two working groups institutionalise separate representation for people with dementia and for carers — the structural separation this layer's ethics rules require.
Source: (Alzheimer Europe — https://www.alzheimer-europe.org/, accessed 2026-08-31).

Alzheimer's Society (UK)¶

Scope: national charity for the United Kingdom, with distinct operations in Wales and Northern Ireland.
Visible functions: Dementia Support Line staffed by trained advisers; an online Dementia Support Forum; research programme and research participation; policy campaigning, including an open letter calling for a national dementia plan; public personal-story content and practical guidance for carers.
Source: (Alzheimer's Society — https://www.alzheimers.org.uk/, accessed 2026-08-31).

Alzheimer's Research UK¶

Scope: UK research-funding charity describing itself as the world's largest dedicated funder of dementia research.
Visible functions: research grant schemes and researcher conferences; public dementia information covering types, symptoms, diagnosis, treatments and risk factors; awareness campaigns; fundraising and legacy giving.
Patient-voice value: a research-funder rather than a service provider; relevant to research-priority questions rather than to lived-experience support.
Source: (Alzheimer's Research UK — https://www.alzheimersresearchuk.org/, accessed 2026-08-31).

CEAFA (Confederación Española de Alzheimer y otras demencias)¶

Scope: Spanish confederation, based in Pamplona, Navarra.
Visible functions: disease information, FAQs and expert answers; promotion of biomedical and socio-health research; the "Pacto por el Recuerdo" political advocacy initiative; national congresses and World Alzheimer's Day coordination; an association network that routes people to local resources; virtual training programmes; newsletters and a magazine.
Patient-voice value: the principal Spanish-language route into this literature located in this build.
Source: (CEAFA — https://www.ceafa.es/, accessed 2026-08-31).

North America¶

Alzheimer's Association (United States)¶

Scope: US voluntary health organisation with a presence in all 50 states and research investments described as spanning 59 countries.
Visible functions: free 24/7 helpline offering confidential support, crisis assistance and local resources in over 200 languages; care consultations, support groups and education programmes; research funding; federal policy advocacy; public education including the annual Facts and Figures report (PMID 38689398).
Note on dual role: this organisation is simultaneously the largest US patient-support body and the convenor of the workgroups that wrote the 2024 diagnostic criteria (PMID 38934362), the blood-biomarker clinical practice guideline (PMID 40729527) and the amyloid/tau PET appropriate use criteria (PMID 39776249). That dual role is recorded here as context for readers, not as a criticism.
Source: (Alzheimer's Association — https://www.alz.org/, accessed 2026-08-31).

Alzheimer Society of Canada¶

Scope: national organisation with regional chapters.
Visible functions: information for people worried about their memory, people living with dementia and carers; the First Link® connection programme; national dementia guidelines and a clear-communication toolkit for health professionals; the Alzheimer Society Research Program; a directory routing people to local programmes and services.
Source: (Alzheimer Society of Canada — https://alzheimer.ca/en, accessed 2026-08-31).

Asia-Pacific¶

Dementia Australia¶

Scope: national organisation serving an estimated 446,500 Australians with dementia and 1.7 million people involved in their care, per its own site.
Visible functions: National Dementia Helpline, free and staffed 24 hours a day, with live chat and email; post-diagnostic counselling, peer support groups and Memory Lane Cafes; dementia information sessions, webinars and a lived-experience podcast; the Dementia Advocates Program and policy work; the Dementia Australia Research Foundation; a Dementia-Friendly Communities initiative.
Patient-voice value: an advocacy programme that trains people with dementia and carers as advocates, and a lived-experience podcast — both routes by which first-person accounts enter public discussion without being mined by third parties.
Source: (Dementia Australia — https://www.dementia.org.au/, accessed 2026-08-31).

認知症の人と家族の会 (Alzheimer's Association Japan)¶

Scope: public-interest incorporated association founded in 1980, headquartered in Kyoto, with approximately 9,000 members and branches in all 47 prefectures.
Visible functions: telephone counselling; peer gatherings (tsudoi) and local café meetings; educational materials, a newsletter and a children's dementia-education website; policy declarations and international information sharing; training lectures; national research conferences.
Patient-voice value: the organisation's name translates as "the association of people with dementia and their families," and its structure explicitly pairs the two groups — a different model from both the ADI federation and the DAI diagnosis-restricted model.
Source: (認知症の人と家族の会 — https://www.alzheimer.or.jp/, accessed 2026-08-31).

Latin America¶

ABRAz (Associação Brasileira de Alzheimer e Condições Similares)¶

Scope: Brazilian non-profit with regional chapters nationwide.
Visible functions: blog, downloadable resources and educational videos; the "ABRAz Talks" video series and the "Pra Não Esquecer" programme; the Brazilian Alzheimer Congress and an events calendar; public-policy advocacy; orientation and guidance for families and caregivers.
Source: (ABRAz — https://abraz.org.br/, accessed 2026-08-31).

Africa¶

DementiaSA¶

Scope: South African non-profit charity with over 30 years of operation.
Visible functions: virtual help and support; counselling groups for individuals and families; training courses including introduction to understanding dementia, communication strategies and activities for people with dementia; advice sheets and speaking books; media and blog content.
Source: (DementiaSA — https://www.dementiasa.org/, accessed 2026-08-31).

ADASA (Association for Dementia and Alzheimer's of South Africa NPC)¶

Scope: founded 1985; operates across all nine South African provinces.
Visible functions: support groups led by staff or trained volunteers for family members, caregivers and nurses, based in regional offices; individual psycho-social support, counselling and family consultation delivered in partnership with other organisations; educational flyers and materials on dementia types, warning signs and risk factors; webinars, seminars and monthly community events; awareness campaigns.
Source: (ADASA — https://www.adasa.org.za/, accessed 2026-08-31; reached via a 301 redirect from https://alzheimers.org.za/).

Quarantined: unresolved direct-fetch failures on 2026-08-31¶

These organisations are not used as content sources anywhere in this knowledge base. Their listing here records the attempt and the failure; a failed fetch is not evidence that an organisation does not exist or is inactive.

Attempted URL	Outcome
https://ardsi.org/ (Alzheimer's and Related Disorders Society of India)	HTTP 406 on audit direct fetch; official site appeared in a live web index, but no site content is used here
https://www.alzheimers.org.in/	DNS resolution failure (ENOTFOUND)

Consequence for coverage. No South Asian organisation is verified in this build, despite India's LASI-DAD data showing 7.2% prevalence of major neurocognitive disorder in adults aged 60+ (PMID 38324518). No organisation is verified in China, north Africa, the Middle East, sub-Saharan Africa outside South Africa, or Spanish-speaking Latin America. These are the highest-priority additions for the next sweep.