After the Diagnosis: The Gap in Post-Diagnostic Dementia Support

Guidance in many countries says that after a dementia diagnosis, people should have a named professional to coordinate their support and a plan they helped to write. In a 2022 global survey by Alzheimer’s Disease International, 58% of the people living with dementia who responded said they had no such person, and 64% had no personalised care plan^[1].

A diagnosis is meant to open a door. It is the point where the question becomes what happens next: who to call when things change, and how to plan while there is still time to choose. Too often the answer is a leaflet, a prescription and a gap. The evidence below shows how wide that gap is and what is known about the models that close it. The shortfall lies in how services are organised and funded, not in the people they are meant to serve.

Guidance promises a named person and a plan after diagnosis

Around the world, about 57 million people were living with dementia in 2021, and there are nearly 10 million new cases each year, according to the World Health Organization^[4]. WHO’s Global action plan on the public health response to dementia, endorsed by the World Health Assembly in May 2017 and since extended to 2031, names “diagnosis, treatment and care” and “support for dementia carers” among its seven action areas, and WHO tracks countries’ progress through its Global Dementia Observatory, which collates data on 35 key indicators^[4].

National guidance turns that ambition into specific promises. England’s NICE guideline NG97, published in 2018, is direct: “Provide people living with dementia with a single named health or social care professional who is responsible for coordinating their care.” That named professional should arrange an initial assessment of needs, face to face if possible, provide information about available services and how to reach them, and develop a care and support plan^[5].

Some countries go further and make support an entitlement. Since January 2015, Scotland has had a national standard that people newly diagnosed with dementia will be offered a minimum of one year’s post-diagnostic support, “coordinated by a named link worker”, including building a person-centred support plan^[2]. In the United States, the federal GUIDE model, which began on 1 July 2024 and is due to run for eight years, provides Medicare coverage for a package that includes care navigation, a 24/7 support line, carer training and education, respite of up to $2,500 a year and connections to community resources; the official programme page lists 292 participating organisations^[6].

Researchers who study delivery are blunter: a 2026 report from England’s D-PACT research programme concluded that “Post-diagnostic support is recognised as inadequate globally. In England, it is fragmented or absent apart from primary care”^[7].

Across dozens of countries, most people surveyed had no named professional and no care plan

No international dataset counts how many people receive post-diagnostic support. The closest thing to a global picture comes from three surveys Alzheimer’s Disease International (ADI) and McGill University ran for the World Alzheimer Report 2022 between May and July 2022. They drew responses from 365 people with dementia in 41 countries, 1,669 informal carers in 68 countries and 893 professional carers in 69 countries^[1]. ADI calls them “a snapshot”: respondents chose to take part, so the figures describe the people who answered, not any country’s population.

Beyond the information given at diagnosis, 37% of people with dementia in higher-income countries and 45% in lower-income countries said they had been offered no post-diagnosis support at all. Overall, 58% said they had no key worker or named professional to advise them and help them navigate services, and 64% had no personalised care plan; only 36% had one. Just over half (52%) had been prescribed a dementia-specific medication, while only 34% had been advised to contact a local Alzheimer’s or dementia association^[1].

Carers told a similar story, with a sharper divide by income. Sixty-two per cent of informal carers in lower-income countries said the person they cared for had not been given access to post-diagnosis support, against 36% in higher-income countries. Asked about support for themselves, 70% of carers said they had not been offered any professional support: only 22% of carers in lower-income countries and 33% in higher-income countries had been. Just 4% of people with dementia and 8% of carers reported having access to respite services^[1]. The sibling study on unpaid carers looks at the support carers receive in more depth.

Scotland’s guarantee: four in five referred get a full year, but only half are referred

Scotland is one of very few places publishing official statistics on post-diagnostic support against a stated entitlement, which makes it a worked case rather than a typical one. Public Health Scotland measures two things: the share of people estimated to be newly diagnosed with dementia who were referred for support, and the share of those referred who went on to receive at least a year of support coordinated by a link worker, including a person-centred plan^[2].

The latest release, published in July 2026, shows that 50.6% of people estimated to be newly diagnosed in 2023/24 were referred for post-diagnostic support, little changed from 49.7% in 2022/23. Of those referred in 2023/24, 81.2% received a minimum of one year’s support, similar to 81.0% the year before. The 2023/24 figures are provisional, because some people take up to two years from diagnosis to complete their support^[2]. Taken together, those two steps suggest that roughly four in ten people expected to be newly diagnosed went on to receive the full year of support the standard describes.

The first figure needs care. Its denominator is a modelled estimate of how many people would be newly diagnosed, not a count of actual diagnoses, so it reflects both how many people are diagnosed at all and how many of those are referred. The sibling study on dementia diagnosis rates covers the first part of that gap.

Once people are referred, the wait for first contact runs to months. In 2024/25, 9,694 people newly diagnosed with dementia were referred, a rate of 85.1 per 10,000 people aged 65 and over, and the median time from diagnosis to first contact with a post-diagnostic support practitioner was 79 days, against 90 days in 2023/24 and 80 days in 2022/23^[2].

Elsewhere, systems count care plan reviews and billing codes, not support

Most countries publish no measure of post-diagnostic support, and those that do count different things. The figures below are not comparable with each other; they show what each system chooses to count.

England records whether GP practices review the care plans of people on their dementia registers. In 2024–25, the Quality and Outcomes Framework indicator DEM004 counted 379,116 people with a care plan review in the preceding 12 months, out of 451,444 eligible patients: 84.0%. A further 47,405 people (9.5%) were recorded as “personalised care adjustments” and left out of that calculation; counting them back in, 76.0% of patients received the review^[3]. It records that a review happened, not what support followed, and only for people with a recorded diagnosis.

The United States has, since before GUIDE, had a Medicare billing route for a cognitive assessment and care planning visit. Use is very low: among community-dwelling older Medicare Advantage members with Alzheimer’s disease and related dementias, 0.4% in 2018 and 0.5% in 2019 received one, figures the authors describe as “similar to use reported elsewhere”^[8].

Sweden’s national dementia registry, SveDem, records the support people are offered. Among 284 people with young-onset dementia (under 65) registered in 2021–2022, 90.1% were offered information and education, but only around half were offered contact with a dementia nurse (49.3%), a counsellor (51.4%) or a needs assessor (47.9%)^[9].

In Australia, where no national measure was found, interviews with 13 people recently diagnosed at nine memory clinics and 17 carers produced themes that echo the ADI survey: “Referrals provided but not necessarily followed”, “A focus on prescribed anti-dementia medications”, and a wish for “A single person guiding ongoing post-diagnostic support”^[10].

Case management and navigators help on some outcomes, and the evidence is still uneven

Link workers in Scotland, case managers in the Netherlands and care navigators in the United States share a core: one person who coordinates care for the individual and their family. How well does it work?

A Cochrane systematic review pooled 13 randomised trials involving 9,615 people with dementia living in the community. People receiving case management had lower odds of having moved into a care home at six months (odds ratio 0.82, 95% CI 0.69 to 0.98, six trials), but the effect at 10–12 months was uncertain (odds ratio 0.95, 95% CI 0.83 to 1.08, nine trials). There were no significant effects on mortality or quality of life, though people receiving case management received significantly more community services. The authors found “considerable heterogeneity” between interventions and concluded there was not enough evidence to say clearly whether case management delays moving into a care home^[11]. Its searches ran to the end of 2013.

The Netherlands runs dementia case management through regional dementia care networks. In a survey of 554 carers at the start of case management and a year later, satisfaction with the case manager was high, averaging 8.0 out of 10, though carers’ reported strain did not fall over the first year^[12]. A two-year observational Dutch cohort of 521 carers and people with dementia found no significant differences in clinical or total cost outcomes between two case-management models and no case management, though informal care costs were lower in the intensive model^[13]. A later review of six trials from five health systems (Germany, the US, the Netherlands, France and China) found that three showed significant delays in, or reduced rates of, moving into long-term care^[14].

Newer US trial evidence is more encouraging. The Care Ecosystem trial randomised 780 pairs of people with dementia and their carers in California, Nebraska and Iowa, 512 to a telephone-based navigator working with a team of dementia specialists and 268 to usual care. Over 12 months it improved the quality of life of people with dementia, reduced emergency department visits, and lowered carer depression and strain^[15]. A secondary analysis of 460 participants with traditional Medicare found a mean cost reduction of $526 a month across the year^[16].

A 2026 modelling study for England projected that, if navigator support were scaled up to everyone eligible, 300,000 people would receive it in 2025, rising to 360,000 in 2030, needing about 940 to 1,120 link workers, at an annual cost of £224 million in 2025 against estimated savings of £1,140 million^[17]. Those savings are projections that assume England would see the same reductions in health care use as the US trial – untested so far.

What the evidence asks of us

The gap between what guidance promises and what people receive is a gap in how services are commissioned, staffed and measured. The evidence points to five things health systems, commissioners, funders and governments can do.

• Make the named professional real. NICE NG97 already asks for “a single named health or social care professional” for every person living with dementia^[5]. When most people answering ADI’s survey, in richer and poorer countries alike, had no such person^[1], the recommendation needs funded posts behind it, not just a line in a guideline.
• Count what people receive, not only that a box was ticked. Scotland measures both referral and receipt of a full year of support^[2]; England’s indicator measures whether a care plan was reviewed^[3]; most countries publish nothing. WHO’s Global Dementia Observatory offers a shared framework for comparable reporting^[4].
• Close the referral gap as well as the delivery gap. In Scotland, four in five people referred receive their year of support, but only about half of those expected to be newly diagnosed are referred^[2].
• Build support for carers into the model from the start. Seventy per cent of carers in ADI’s survey had been offered no professional support for themselves^[1]. The models with the strongest recent trial evidence, such as the Care Ecosystem, work with the person and their carer together^[15].
• Fund evaluation that matches the scale of the promise. The Cochrane review found mixed results and very different interventions under one label^[11]. Programmes such as the US GUIDE model, running until the early 2030s^[6], are a chance to learn which components matter, if results are published openly.

The sibling studies on ethnicity and dementia inequalities and on young-onset dementia look at who else is left without support.

Language: this piece uses person-first language ("people living with dementia", "people with dementia"), as most dementia organisations and people with lived experience prefer, and uses clinical terms such as "Alzheimer's disease" or "mild cognitive impairment" only where a study, dataset or diagnosis refers to that specific condition.

Why we're publishing this

People living with dementia and their families keep saying that after a diagnosis they need someone to turn to and a plan that is theirs. Dementia organisations campaigning for that need evidence that holds up. This study brings the best figures from several countries together, says plainly where the promise of support is not met, and is part of our wider Dementia & Health research library. The case it makes belongs to the people affected by dementia and the organisations that stand with them.

How to read this data

There is no international measure of post-diagnostic support, so this study draws on kinds of evidence that should not be compared directly. ADI’s 2022 figures come from self-selected online surveys in many countries, so they show the experiences of the people who responded, not national rates. Scotland’s figures are official statistics: the referral measure divides referrals by a modelled estimate of new diagnoses, and the most recent years are provisional. England’s figure is a GP quality indicator that records a care plan review, not the content or quality of support. The US figure comes from Medicare Advantage claims data for one billing code in 2018–2019. Sweden’s figures cover only people under 65 in the national dementia registry. The Australian study is small and qualitative; the English savings estimate is a model built on a US trial. Evidence from low- and middle-income countries beyond the ADI survey was thin, and no national post-diagnostic support statistics were found for Australia, Canada or most of Europe.

Use this data

Free to cite with attribution to Understanding Aging. Charities, carers' groups, campaigners and journalists are welcome to reuse these figures and charts. For the underlying figures as a spreadsheet, get in touch.

Important: This article summarises published research and statistics for general information. It is not medical, care or financial advice and cannot be used to diagnose, treat or predict anything about an individual. If you have concerns about your own or someone else's memory or health, please speak to a GP or another qualified health professional.

Sources

1. Alzheimer’s Disease International. World Alzheimer Report 2022: Life after diagnosis: Navigating treatment, care and support. Alzheimer’s Disease International, 2022. alzint.org/u/World-Alzheimer-Report-2022.pdf
2. Public Health Scotland. Dementia post-diagnostic support: Performance against the Local Delivery Plan standard, 2023/24. Public Health Scotland, 2026. publichealthscotland.scot/publications/dementia-post-diagnostic-support/…
3. NHS England. Quality and Outcomes Framework, 2024-25: national and regional achievement, prevalence and personalised care adjustments, Table 18 (dementia). NHS England, 2025. files.digital.nhs.uk/53/9DC070/qof-2425-nat-reg-ach-prev-pca.xlsx
4. World Health Organization. Dementia: fact sheet. World Health Organization, 2026. who.int/news-room/fact-sheets/detail/dementia
5. National Institute for Health and Care Excellence. Dementia: assessment, management and support for people living with dementia and their carers (NG97), Recommendations. NICE, 2018. nice.org.uk/guidance/ng97/chapter/Recommendations
6. Centers for Medicare & Medicaid Services. GUIDE (Guiding an Improved Dementia Experience) Model. CMS Innovation Center, 2026. cms.gov/priorities/innovation/innovation-models/guide
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