Caregiver Support Evidence

Skip anything

Every question is optional. No one has to retell painful events, name a diagnosis, or choose a religion or identity to begin.

Pause or stop

Stop at any point. Nothing is sent anywhere, and nothing is shared unless the person chooses it in the sharing review.

Whose words

Record who said each thing: the person, a caregiver or surrogate, or a professional. A caregiver's needs get their own field.

Support to take part

Extra time, a quieter place, pictures, an interpreter or a trusted person can help someone say what matters. Ask what helps.

Barriers are not preferences

Cost, travel, work, housing, caring for others and digital access are written down as barriers, not as what the person wants.

Meaning, religious or not

Hope, purpose, faith, relationships and identity can be part of the conversation if the person wants. None is assumed.

• Physician or nurse: Health changes, treatment and what to expect.
• Social worker: Home support, respite, costs and caregiver support.
• Occupational therapist or other rehabilitation professional: Daily routines, safety at home and staying active.
• Chaplain or spiritual-care provider: Meaning, distress, hope and relationships, for people of any faith or none.
• Interpreter or communication specialist: Language and communication support so the person's own words come through.
• People the person chooses: Family, friends, or a community or faith contact, only if the person wants them. Never assumed safe, available or wanted.

Roles, titles and training differ by country and service. Not every role exists everywhere.

A small set of places chosen for contrast, not a ranking or a representative survey: Global, Japan, United States, India, Brazil, Multi-country, Tanzania, United Arab Emirates. Each example states what its source establishes and what it does not. Policy on paper is not proof that a service is available.

Policy, not outcomes:

Shows what is written or recommended. It does not show that it is followed or what results.

Guidance, not outcomes:

Shows what is written or recommended. It does not show that it is followed or what results.

Our translation:

The source is not in English. The quote is our own translation, not an official one.

Abstract only:

Read from the abstract. The full paper may add or qualify this.

Place from authors:

The place is taken from the authors' affiliations, not from where data were collected.

Service as described:

Describes a service when the source was written. Whether it still runs is not verified.

• Global · Policy · 2017

  WHO's global dementia action plan proposes that Member States promote mechanisms to monitor protection of the rights, wishes and preferences of people with dementia, including safeguards for legal capacity and supported decision-making.

  Limits: Policy, not outcomes

  What others could learn: The plan places supported decision-making and legal-capacity safeguards among proposed national actions on rights monitoring, not only in bedside practice.

  Conditions, limits and source

  Conditions that matter:

  Legal: depends on national capacity, guardianship and power-of-attorney law and alignment with the CRPD. Monitoring bodies are needed.

  Cannot be inferred:

  Cannot infer that any country has implemented these safeguards, that they are effective, or that people with dementia lack capacity; the plan does not equate diagnosis with incapacity.

  Limits:

  Aspirational, non-binding plan; names safeguards without defining them or saying how countries should balance supported decision-making with power of attorney. The plan covered 2017-2025; the World Health Assembly extended it to 2031 in May 2025. It does not report implementation.

  Source: World Health Organization, Global action plan on the public health response to dementia 2017-2025 (Action area 1, proposed actions for Member States, para. 20; PDF p. 9 (printed pp. 10-11)). Where: Global (WHO Member States). Population: People living with dementia; carers. Published 2017 (endorsed by the Seventieth World Health Assembly, resolution WHA70(17), 31 May 2017; IRIS issue date 2017-12-08); retrieved 2026-10-11.

• Global · Guidance · 2019

  WHO's iSupport carer manual teaches carers that people with dementia have the right to take part in all decisions affecting their lives, while acknowledging decisions may become harder as dementia progresses.

  Limits: Guidance, not outcomes

  What others could learn: Carer training can name the risk of relatives taking over decisions and coach support for the person's own choices, alongside a separate module on the carer's own needs ('Caring for me').

  Conditions, limits and source

  Conditions that matter:

  Staffing: self-help, low staffing need. Language: requires translation and cultural adaptation. Access: online plus offline print version for low-bandwidth settings. Legal: best-interest language may not fit every national capacity law.

  Cannot be inferred:

  Cannot infer that carers who use iSupport actually change decision-making practice, or that the manual's approach is effective; it is guidance, not evidence of outcomes.

  Limits:

  Carer-facing training content, not an outcome study. The same lesson also covers 'making decisions in the person's best interest', which mixes support with substitute judgement. Generic template; national adaptations change examples and terminology.

  Source: World Health Organization, iSupport for dementia: training and support manual for carers of people with dementia (Module 2 ('Being a carer'), Lesson 3 'Supported decision-making', section 1; printed p. 42 (PDF p. 56)). Where: Global (WHO template for national adaptation). Population: Family and other informal carers of people with dementia. Published 2019 (IRIS issue date 2019-05-20); retrieved 2026-10-11.

• Japan · Guidance · 2018

  Japan's national decision-making support guideline directs supporters to start from the premise that a person with dementia has wishes and decision-making capacity, whatever their symptoms.

  Limits: Guidance, not outcomes · Our translation

  What others could learn: Japan's guideline is one example of a national default that support starts from presumed will and capacity, with capacity treated as decision-specific and changeable.

  Conditions, limits and source

  Conditions that matter:

  Legal: issued under Japan's adult guardianship promotion policy; references the UK Mental Capacity Act 2005 and the CRPD. Staffing: assumes care professionals, administrators and family form a support team. Language: Japanese only.

  Cannot be inferred:

  Cannot infer how widely the guideline is applied in practice, that it describes Japanese cultural norms generally, or that it improves outcomes.

  Limits:

  Administrative guideline, not statute; no outcome data. Covers daily and social life; end-of-life medical decisions are addressed by a separate MHLW process guideline. Same page notes capacity is assessed decision by decision and varies.

  Source: Ministry of Health, Labour and Welfare (MHLW), Japan, 認知症の人の日常生活・社会生活における意思決定支援ガイドライン (Guideline on decision-making support in daily and social life for people with dementia; title translation ours) (Section III.2 '本人の意思決定能力への配慮' (consideration of the person's decision-making capacity), printed p. 4 (PDF p. 6)). Where: Japan. Population: People with dementia, including people with suspected cognitive decline without a formal diagnosis. Published 2018-06 (平成30年6月); retrieved 2026-10-11. Source in Japanese; summarized from our own translation, not an official one.

• Japan · Guidance · 2018

  Japan's 2018 guideline says expressed wishes can change with time and circumstance, so supporters should recheck them rather than be bound by the first wishes stated.

  Limits: Guidance, not outcomes · Our translation

  What others could learn: Guidance can tell supporters to re-check wishes over time rather than treat the first statement as fixed, while also estimating presumed wishes from the person's values when expression is hard.

  Conditions, limits and source

  Conditions that matter:

  Legal: guideline status; wishes are respected unless they harm others or cause serious, hard-to-reverse harm to the person (section III.1). Staffing: assumes time for repeated conversations. Cultural: written for Japanese services.

  Cannot be inferred:

  Cannot infer that current wishes always override prior advance directives in Japan, nor that this practice is routine or effective.

  Limits:

  Addresses daily and social life, not advance directives for life-sustaining treatment. Does not resolve how to weigh current wishes against earlier documented wishes in law. The same guideline has supporters estimate presumed wishes from the person's values and life history when wishes are hard to confirm, and notes families may remember past views differently (IV.3).

  Source: Ministry of Health, Labour and Welfare (MHLW), Japan, 認知症の人の日常生活・社会生活における意思決定支援ガイドライン (Guideline on decision-making support in daily and social life for people with dementia; title translation ours) (Section IV.2(2) '本人が意思を表明することの支援（意思表明支援）' (support for expressing wishes), printed p. 7 (PDF p. 9)). Where: Japan. Population: People with dementia and their decision-making supporters, including family. Published 2018-06 (平成30年6月); retrieved 2026-10-11. Source in Japanese; summarized from our own translation, not an official one.

• United States · Measured outcome · 2017

  In a U.S. cluster RCT in 22 nursing homes (302 residents with advanced dementia), a goals-of-care video aid plus structured discussion left family-clinician goal concordance unchanged at 3 months but higher by 9 months or death.

  Limits: Abstract only · Place from authors

  What others could learn: Structured goals-of-care discussions with a video aid may raise family-clinician agreement on goals by 9 months in nursing homes. This measures proxy agreement, not the resident's own voice.

  Conditions, limits and source

  Conditions that matter:

  Staffing: nursing home providers took part in structured discussions. Legal: family decision makers and MOST order sets, which are U.S. state forms.

  Cannot be inferred:

  Cannot infer that care matched the resident's own wishes, that results generalize to community-dwelling or earlier-stage dementia, or that survival changed (it did not differ).

  Limits:

  Goal concordance did not differ at 3 months (a primary outcome); the 9-month result (133 [88.4%] vs 108 [71.2%]) is not listed among the abstract's prespecified outcomes. Outcomes are family-reported; residents did not report their own views. Family ratings of treatment consistent with preferences did not differ. The abstract names no country; U.S. is inferred from affiliations and MOST forms. Only the abstract was reviewed.

  Source: Hanson LC et al.; JAMA Internal Medicine, Effect of the Goals of Care Intervention for Advanced Dementia: A Randomized Clinical Trial (PubMed abstract (PMID 27893884; doi:10.1001/jamainternmed.2016.7031), Results). Where: United States (22 nursing homes; state not stated in abstract). Population: 302 nursing home residents with advanced dementia and their family decision makers. Published 2017-01-01; retrieved 2026-10-11.

• India · Measured outcome · 2021

  In an Indian feasibility RCT of 151 caregivers, adapted online iSupport did not improve primary outcomes (depression, burden) at 3 months versus an e-book; among secondary outcomes, only person-centered attitude improved.

  Limits: Abstract only

  What others could learn: In this trial, low recruitment and retention led the authors to call for further adaptation of the Indian version of iSupport before outcomes can be judged.

  Conditions, limits and source

  Conditions that matter:

  Digital: online delivery requires internet access and digital literacy. Staffing: minimal. Cultural: family caregiving norms in India; authors call for further adaptation.

  Cannot be inferred:

  Cannot infer that iSupport is ineffective in India (underpowered), nor that results apply to rural or offline caregivers, nor anything about the person with dementia's own preferences.

  Limits:

  Only 55 of 151 completed (retention 36.42%; recruitment 44.67%), so attrition limits interpretation. The abstract reports no power calculation. Authors include WHO staff; WHO developed iSupport. Online format requires internet access.

  Source: Baruah U et al.; International Journal of Geriatric Psychiatry, Feasibility and preliminary effectiveness of an online training and support program for caregivers of people with dementia in India: a randomized controlled trial (PubMed abstract (PMID 33491811; doi:10.1002/gps.5502), Results). Where: India (NIMHANS, Bangalore). Population: 151 family caregivers of people with Alzheimer's disease or dementia. Published 2021-04 (epub 2021-02-08); retrieved 2026-10-11.

• Brazil · Service described in 2023

  Brazil's iSupport adaptation used focus groups with 24 caregivers or former caregivers and 24 professionals; WHO verified fidelity of each documented change.

  Limits: Abstract only · Place from authors

  What others could learn: Brazil's iSupport adaptation shows one documented process, with focus-group review and WHO fidelity checks, for localizing terminology, examples and service links.

  Conditions, limits and source

  Conditions that matter:

  Language: professional translation plus focus-group review. Financing/staffing: academic research teams. Links added to the local Alzheimer's association; depends on internet access.

  Cannot be inferred:

  Cannot infer effectiveness of iSupport-Brasil, uptake across Brazil, or how people with dementia themselves view the content.

  Limits:

  Adaptation process only; no carer or patient outcomes. People living with dementia were not among focus-group participants. Scope is the national program version, not evidence of nationwide uptake.

  Source: Monteiro DQ et al.; Dementia (London), iSupport-Brasil: Cross-cultural adaptation of the content included in the iSupport program for caregivers of people who have dementia (PubMed abstract (PMID 36655568; doi:10.1177/14713012231152555), Results). Where: Brazil (multicentre; São Paulo and Brasília institutions). Population: Caregivers/former caregivers of people with dementia (n=24) and health professionals in ageing (n=24). Published 2023-04 (epub 2023-01-19); retrieved 2026-10-11.

• Multi-country · Reported experience · 2025

  Stakeholders from 12 Latin American countries said dementia end-of-life care was often affected by socioeconomic barriers to access, informal caregivers' under-tapped potential, and cultural expectations around caregiving.

  Limits: Abstract only

  What others could learn: Stakeholders across 12 countries named access barriers, unused informal-caregiver capacity and care norms as shaping dementia end-of-life care. Supporting informal caregivers is one area to explore, with local variation.

  Conditions, limits and source

  Conditions that matter:

  Financing: socioeconomic barriers to accessing services. Staffing: authors cite inadequate skilled workforce and services. Cultural: norms and expectations around family caregiving vary.

  Cannot be inferred:

  Cannot infer any single country's situation, a shared Latin American culture of care, or the views of people with dementia themselves.

  Limits:

  Only 15 stakeholders for 12 countries (about one or two per country); abstract does not say whether people with dementia or family carers took part. Authors note differences between and within countries.

  Source: Hidalgo-Andrade P et al.; Palliative Care and Social Practice, End-of-life care of people with dementia in Latin America: A qualitative analysis (PubMed abstract (PMID 41446814; doi:10.1177/26323524251406286), Results). Where: Multi-country (12 Latin American countries: Argentina, Brazil, Chile, Colombia, Costa Rica, Ecuador, El Salvador, Guatemala, Mexico, Paraguay, Peru, Uruguay). Population: 15 stakeholders in dementia and end-of-life care. Published 2025-12-22; retrieved 2026-10-11.

• Tanzania · Reported experience · 2023

  In Moshi, Tanzania, interviews including 14 people with dementia found they faced social isolation, stigmatization and caregivers lacking knowledge of how best to support them.

  Limits: Abstract only

  What others could learn: Interviews with people with dementia and caregivers in one Tanzanian city described isolation, stigma and gaps in caregiver knowledge; caregiver education is one area to consider.

  Conditions, limits and source

  Conditions that matter:

  Low-income setting with limited formal healthcare; families provide most support. The authors say living with dementia is influenced by cultural and religious factors, without detail in the abstract. Interviews were translated before analysis.

  Cannot be inferred:

  Cannot infer national Tanzanian or African cultural norms, prevalence of stigma, or that diagnosis implies inability to give views (participants with dementia were interviewed).

  Limits:

  Small single-site sample; interviews were translated, so nuance may be lost. Abstract does not separate which findings came from people with dementia versus caregivers. Many people with dementia in Tanzania lack a formal diagnosis.

  Source: Walker J et al.; Dementia (London), Patient and caregiver experiences of living with dementia in Tanzania (PubMed abstract (PMID 37879079; PMCID PMC10644685; doi:10.1177/14713012231204784), Results). Where: Tanzania (Moshi, Kilimanjaro region). Population: 14 people with dementia and 12 caregivers. Published 2023-11 (epub 2023-10-25); retrieved 2026-10-11.

• United Arab Emirates · Service described in 2026

  In a UAE environmental scan, interviewed professionals described families increasingly relying on domestic helpers and private homecare, taking supervisory roles, and no community-based respite services.

  Limits: Abstract only · Service as described

  What others could learn: Professionals interviewed described families supervising care given by domestic helpers and private homecare providers, with limited dementia-specific training. Whether helpers take part in conversations about a person's preferences was not studied.

  Conditions, limits and source

  Conditions that matter:

  Financing: private household-funded care. Staffing: reliance on domestic helpers; professionals lacked dementia-specific training. Policy: no national dementia strategy at time of study.

  Cannot be inferred:

  Cannot infer the preferences of Emirati people with dementia or families, the experience of domestic workers, or conditions in other Gulf states.

  Limits:

  Professional perspectives only; no people with dementia, family carers or domestic helpers interviewed. 'Absence of community-based respite services' is an interview finding (same abstract), not an audit.

  Source: Kassie SA, Astell AJ; BMC Health Services Research, Dementia care in the United Arab Emirates: an environmental scan of services, policy, workforce, and caregiving contexts (PubMed abstract (PMID 42192386; PMCID PMC13356796; doi:10.1186/s12913-026-14598-9), Results). Where: United Arab Emirates. Population: Dementia care services; 12 healthcare professionals interviewed; 61 grey-literature sources. Published 2026-05-26; retrieved 2026-10-11.

• The sourced examples include policy, guidance, measured outcome, service description, reported experience. Each quote was matched to the source text; that is not independent expert review.
• The prompts and fictional case are original. They have not been tested with patients, caregivers or clinicians.
• Whether this workflow helps anyone is an open research question.
• Content is in English. Interface translations are not reviewed for this topic.