Growing Older With a Learning Disability: Longer Lives, but Still a 19-Year Gap

More people with a learning disability now live into later life than ever before, but most still do not reach old age as the wider population knows it. In England in 2024, adults with a learning disability whose deaths were reviewed died at a median age of 62.8 years, against 81.8 years for the general adult population, and around two in five of their deaths were classed as avoidable.

Growing older with a learning disability often means meeting the conditions of later life sooner: frailty, several long-term conditions at once, and, for many people with Down syndrome, dementia in their fifties. It can also mean a life lived for decades in the family home, cared for by parents who are themselves growing old, with no settled plan for what comes next. None of this is inevitable. The research gathered here, from eight countries, points again and again to gaps in health care, planning and support rather than to anything fixed about the people themselves.

Lives are longer than they were, but the median age at death is still 19 years lower in England

England's Learning from Lives and Deaths programme (LeDeR), run by King's College London, reviews the deaths of people with a learning disability and autistic people. Its 2024 report found that the median age at death of adults with a learning disability was 62.8 years in 2024, a small rise from 62.3 years in 2021, but still far below the 81.8 years of the general adult population^[1]. The gap was wider for women (62.6 against 84.1, a gap of 21.5 years) than for men (63.2 against 79.7, a gap of 16.5 years). Over half of the deaths were of people under 65, the reverse of the pattern in the wider population^[1].

England is not unusual. Across disability more broadly, not learning disability alone, the World Health Organization notes that some persons with disabilities die up to 20 years earlier than those without disabilities^[3]. In New South Wales, Australia, a linked-data study of adults registered with disability services found that those with an intellectual disability who died between 2005 and 2011 did so at a median age of 54; the comparative mortality figure (a ratio of age-standardised death rates against the state population) was 2.3 at ages 45 to 64 and 4.0 at 20 to 44^[4]. In two German regions in 2007 to 2009, estimated life expectancy was 65.3 to 70.9 years for men and 69.9 to 72.8 years for women with an intellectual disability; the authors saw this as confirming a long-run rise in life expectancy, while still below the general population^[5].

These figures come from different countries, years and methods, so they are not directly comparable. What they share is the direction: lives getting longer, and a gap that remains wide.

Around two in five deaths are avoidable, nearly double the general population

LeDeR uses the OECD classification of avoidable mortality, which covers deaths from causes counted as preventable or as treatable with timely care; in 2024 treatable causes drove most of the avoidable deaths. Of 2,692 deaths of adults with a learning disability in 2024 with a known cause, 1,049 (39.0%) were avoidable, compared with 21.1% in the general population. That share has fallen each year, from 46.3% in 2021^[1]. Australia's New South Wales study, using its own definition of potentially avoidable deaths, found a similar gap for 2005 to 2011: 38% of deaths in the intellectual disability cohort were potentially avoidable, against 17% in the comparison population^[4].

The causes tell a story about care. Pneumonia was the most common avoidable cause of death in England in 2024, accounting for almost one in seven avoidable deaths, compared with one in 34 in the general population^[1]. The report also notes that dementia and stroke are becoming more prominent causes of death "in keeping with an ageing population"^[1]: as people live longer, the conditions of later life arrive, and services built around younger adults need to be ready for them.

For people with Down syndrome, the gap is wider still. Across 2021 to 2024, adults with Down syndrome whose deaths were reviewed died at a median age of 59.8 years, compared with 64.1 for other adults with a learning disability and 81.9 for the general adult population of England and Wales (2022). Over three-quarters (78.8%) died before 65, against 52.4% of other adults with a learning disability^[1].

Ageing starts earlier: three in four have two or more long-term conditions

The Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) has followed a nationally representative sample of over 700 adults with an intellectual disability aged 40 and over in Ireland since 2009. Across 15 years of data to 2023, three in four were living with multimorbidity (two or more chronic conditions), and those aged 65 and over had seven times the odds of multimorbidity of those under 50. Women, people with more severe intellectual disability and people living in residential care were most at risk of having more conditions^[6]. Strikingly, at the study's first wave multimorbidity already affected 63% of participants in their forties^[7].

Frailty follows the same early pattern. In the Dutch Healthy Ageing and Intellectual Disabilities (HA-ID) study, people with an intellectual disability over 50 had frailty scores similar to those of most people over 75 in the general population^[8]. The study's researchers describe frailty arriving up to 20 years earlier than in the general population, and of 982 participants aged 50 and over, 433 (44.1%) had died within ten years of follow-up^[9].

The Irish researchers conclude that the evidence points to "the urgent need for earlier prevention and upstream action to reduce the widening inequality gap with the general population"^[6]. Earlier ageing also means that "older" services, screening and planning, often organised around later ages, can arrive too late for many people with a learning disability.

Dementia comes earlier and more often, above all for people with Down syndrome

People with Down syndrome have a much higher risk of Alzheimer's disease, and at younger ages. In an Irish study that followed 77 people with Down syndrome aged 35 and over from 1996 to 2015, 75 of them (97.4%) developed dementia, at a mean age of 55. The risk rose from 23% among those aged 50 to 80% among those aged 65 and over^[2]. In England's LeDeR reviews of deaths in 2021 to 2024, 39.8% of adults with Down syndrome had dementia, against 5.1% of other adults with a learning disability, and unspecified dementia (17.3%) and early-onset Alzheimer's disease (10.0%) were the most common underlying causes of their deaths^[1]. Dementia that begins before 65 is covered in more depth in our study of young-onset dementia.

Raised risk is not limited to Down syndrome. Among 222 people with an intellectual disability but not Down syndrome aged 60 and over in England, dementia incidence among those 65 and over was about five times that expected in the general population (standardised incidence ratio 4.98)^[10]. A Korean national registry study of people aged 40 and over, followed from 2009 to 2020, found an adjusted hazard ratio of 5.75 for dementia in people with an intellectual disability compared with those without, with the risk especially raised at ages 40 to 64^[11]. In Japan, a survey of 1,831 adults without Down syndrome living in facilities found dementia in 8.8% of those aged 60 to 64, rising to 19.6% at 70 to 74. Hypertension, depression, stroke and traumatic brain injury were among the factors associated with dementia, which the authors suggest may point to ways to reduce risk^[12].

These are associations from observational studies with differing methods; they do not show that any one factor causes dementia in an individual. Recognising dementia also depends on people around the person noticing change. NICE guidance in England asks staff not to assume "that any new problems are due to their learning disability when they could be symptoms of other conditions or difficulties", a pattern known as diagnostic overshadowing^[13].

Health checks find unmet needs, and reach four in five people on England's registers

Annual health checks are one of the main tools health systems use to close these gaps. In England, 273,430 learning disability health checks were completed in general practice between April 2025 and March 2026, covering 79.8% of people on GP learning disability registers aged 14 and over, and 77.9% had a health action plan^[14]. These are management information, and the release page gives no breakdown by age, so it cannot show how far checks reach older people in particular.

The evidence that checks matter is consistent. A systematic review of 48 publications found that health checks "are effective in identifying previously unrecognised health needs, including life threatening conditions"^[15]. Whether they lengthen lives is harder to show. A matched cohort study of 26,954 people with an intellectual disability in Wales from 2005 to 2017 found that a health check was associated with better survival for people with Down syndrome (hazard ratio 0.76) and autistic people (0.58), but found no evidence of improved survival among those already diagnosed with diabetes or cancer^[16]. The authors suggest checks are most likely to help when they start before a chronic condition is diagnosed, which fits what the Irish and Dutch studies show about how early multimorbidity and frailty begin.

A health check is only as useful as what follows it. NICE recommends offering annual health checks to older people with learning disabilities "as long as these are followed by prompt referral to specialist services wherever needed", alongside the same routine screening offered to other older people^[13].

Many live with parents who are growing old too, often without a plan

Family carers play a large part in supporting older people with a learning disability. In the United States, the Centers for Medicare & Medicaid Services estimates that around one million households include an adult with an intellectual or developmental disability living with, and supported by, an aging caregiver, and that this number is growing. Only 21% of the estimated 7.43 million people with intellectual and developmental disabilities in 2018 were known to, or served by, state disability agencies^[17], so most were outside the reach of state disability services.

Researchers describe a familiar pattern: many adults with intellectual disabilities "live with ageing parents, often without concrete plans for transitioning to alternative living arrangements". In a 2025 interview study with adults who had moved out of the family home and their relatives, the adults described benefits including more autonomy and new relationships^[18]. In a US national survey of 518 parents of adult children with intellectual and developmental disabilities, future planning was among the top sources of stress^[19]. Carers' own needs, including those of people caring for someone with dementia, are explored in our study of unpaid dementia carers.

What the evidence asks of us

The figures make a clear case that the health of older people with a learning disability depends on choices made by services and governments. Drawing on the guidance and reports cited here:

• Count people and plan for an ageing population. NICE asks commissioners to "identify the number of adults in their area with a learning disability (and the number of families and carers)" and use it to find gaps in provision^[13]. In the US, most people with intellectual and developmental disabilities are not known to state agencies at all^[17].
• Treat avoidable deaths as a measure of system performance. England's falling share of avoidable deaths shows change is possible; at 39.0% it is still close to double the general population's^[1]. Countries without a review programme like LeDeR have far less to go on; the Australian authors called for a national system of reporting deaths^[4].
• Start later-life care earlier. With multimorbidity common in people's forties and frailty arriving years early^[7][9], health checks, screening and dementia awareness should be in place well before 65, with prompt referral after every check^[13].
• Talk openly about dementia risk. NICE recommends explaining "at an early stage" the link between learning disabilities and dementia, particularly for people with Down syndrome, and building links between learning disability services and mainstream older people's and dementia services^[13].
• Plan the future with people, not for them. NICE asks for future plans that are proactive, led by the person, reviewed every year, and that include housing; for housing options that meet changing needs; and for every family carer to be offered their own carer's assessment^[13].

Language: this piece says "older people" rather than "the elderly". It uses "people with a learning disability", the term used by self-advocates and organisations in the UK and by England's LeDeR programme; where a study from another country uses "intellectual disability" (the usual term internationally) or "intellectual and developmental disabilities" (common in the United States), we keep the study's own term when describing it. "Down syndrome" follows the LeDeR report; NICE writes "Down's syndrome".

Why we're publishing this

People with a learning disability are one of the groups for whom later life is newest: as more reach their sixties and beyond, the LeDeR report notes the "changing health profile of an ageing population of people with a learning disability"^[1]. Self-advocacy groups, family carers' networks and learning disability organisations have long pressed for this to be recognised. We have gathered the best international evidence in one place so that they, and the people who plan and fund services, can cite it. The case is theirs; we have tried to set out the data plainly and in their support.

How to read this data

The strongest figures come from England's LeDeR programme, which reviews deaths notified to it; not every death of a person with a learning disability is notified, and the general population comparison comes from national statistics. Median age at death is not the same as life expectancy: it describes people who died in a given year, not how long people alive today can expect to live. The German figures are modelled life expectancy from two regions; the Australian figures are standardised comparisons from people registered with disability services, from 2005 to 2011. The Irish (IDS-TILDA) and Dutch (HA-ID) cohorts are well-designed ageing studies but cover people known to services. Dementia figures come from small clinical cohorts (Ireland, England), a facility-based survey (Japan) and a national insurance registry (Korea); a hazard ratio compares rates over time and is not the same as a relative risk or a prevalence. Hazard ratios from the Welsh health check study show associations, not proof that checks caused longer survival. Most evidence comes from high-income countries; we found little on older people with a learning disability in low- and middle-income countries, and that gap is itself a finding.

Use this data

Free to cite with attribution to Understanding Aging. Learning disability organisations, self-advocacy groups, family carers' networks, 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.

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