Bereavement and Learning Disability: Grief Often Missed, Support Rarely Tested

People with a learning disability grieve like anyone else, but their grief is often missed. In the first systematic study, adults whose parent had died showed significantly more distress and behaviour change than a matched group who had not been bereaved, and the staff and carers around them did not usually link those changes to the death^[1]. Nobody yet knows how many people with a learning disability are bereaved each year, in any country.

For many adults with a learning disability, a parent is not only family but also the person who provides daily care, keeps the routines going and speaks up for them. When that parent dies, the loss can come with a move to an unfamiliar home, new staff and new rules. This study brings together the research from around the world on what bereavement means for children and adults with a learning disability (the term used in the UK; most other countries say intellectual disability): how grief shows itself, how often it goes unrecognised, what happens to housing and support after a parent dies, and what kinds of support have been tested. The evidence is small, and comes mostly from services and studies in Ireland and the UK rather than national statistics.

Grief is real, and it is often read as something else

Historically, people with a learning disability "have tended to be excluded from knowing about death, dying and bereavement"^[5]. The research since the 1990s shows why that matters. In the first systematic study, published from London in 1997, 50 adults with a learning disability whose parent had died were compared with 50 matched adults who had not been bereaved. The bereaved group scored significantly higher on standard checklists of aberrant behaviour and psychiatric symptoms, with "highly significant differences" on the total scores and most subscales. Yet "staff and carers did not usually attribute behaviour problems to the bereavement", and psychiatric symptoms linked to the death were not recognised. The authors concluded that the impact of a parent's death had been "underestimated"^[1].

When 41 of the same 50 people were reassessed five years later, measures of psychiatric symptoms had improved, especially anxiety. The researchers concluded that grief in people with a learning disability is "similar in type, though not in expression" to grief in the general population, and that people "adapted more easily when basic emotional needs had been constructively met by carers"^[6]. A 2005 review drew the same picture from the wider literature: after a bereavement, "symptoms of depression and anxiety increase, and general behaviour is altered"^[7].

Researchers describe this as disenfranchised grief: grief that is real but not recognised by the people around the person. In one qualitative study, 13 adults with an intellectual disability described their own bereavements, and the researchers found their experiences fitted that idea closely, while their grief itself was "similar to that of the general population"^[8]. Grief counsellors interviewed for a 2017 study described bereaved adults with intellectual disabilities as having "long histories of unrecognized losses" and being "pushed to the sidelines to deal with their losses in isolation and confusion"^[9]. In Chile, interviews with 92 older adults living in long-term care found the same themes, including "disenfranchised mourning", and noted that this group had "historically been excluded from mourning, due to assumptions about their capacity"^[10].

Grief that stays intense is likely underestimated

Most grief, for anyone, eases over time. For a minority it stays intense and disabling, which researchers call complicated or prolonged grief. That is a diagnosable condition, distinct from ordinary grief, and the evidence suggests people with a learning disability are likely to experience it, often without it being recognised. In an Irish study, carers of adults with a mild or moderate intellectual disability whose parent had died in the previous two years were asked about specific grief symptoms, alongside a matched group who had not been bereaved. One third of the bereaved group showed 10 or more clinically apparent symptoms of complicated grief. Those symptoms were also more common among people who had been more involved in the funeral and other rituals^[2].

Asking people themselves gives a fuller picture. A later Irish study used an accessible questionnaire with 46 adults with an intellectual disability aged 23 to 67, 30 of whom (65%) had had a parent die within the previous two years. Separation distress symptoms stood out among bereaved participants, and on key criteria their own reports showed higher levels than staff reports about them^[11]. A 2022 systematic review of 18 studies concluded that complicated grief in people with an intellectual disability is "both underestimated and a clinically significant condition"^[12].

Bereavement rarely arrives alone. A review of life events research found "reasonable evidence" that events such as bereavement and moving house are linked to psychological problems in people with intellectual disabilities, and "some tentative evidence" that they play a causal role^[13]. In Ireland's IDS-TILDA study of adults aged 40 and over with an intellectual disability, 88.1% had experienced at least one stressful life event in the previous year and 64.5% two or more. More life events went with new psychiatric diagnoses and with starting or increasing mood stabilising, hypnotic and sedative medication^[14].

Two small studies of adults with Down syndrome, a group at high risk of dementia at younger ages, add a specific concern. In a Brazilian study of 18 adults followed for 14 to 22 months, when a bereavement was accompanied by behaviour change, the probability of cognitive decline was 87% (an odds ratio of 3.82)^[15]. In Spain, among 34 people seen at two specialist clinics and diagnosed with Down syndrome regression disorder between 2021 and 2024, 35% had experienced the bereavement or illness of a close person before symptoms began^[16]. Both are small clinic samples, and neither was designed to show that bereavement caused the decline, so they signal a question for research rather than an answer.

Many people are not told, or not included

A UK-wide survey of 690 staff supporting people with intellectual disabilities, published in 2020, found that only 52.6% of people who were terminally ill were told about their illness, and 18.1% were told they would die. Where a death in someone's life was expected, 32.4% of staff said no one had talked about it with the person beforehand. Only a quarter of staff had received any training on end of life or bereavement^[3].

Research on understanding of death suggests people are more capable than this caution assumes, and that teaching can help. In an Irish study of 34 adults with an intellectual disability, nearly a quarter had a full understanding of the concept of death and over two-thirds a partial understanding. Participants "viewed death as final and understood that all living things die", understanding rose with cognitive ability and everyday skills, and the authors called for teaching biological explanations of the life cycle^[17].

A synthesis of 13 studies of staff experiences named "A cautious silence: The taboo of death" as its overarching theme, alongside the finding that "talking about death is hard" and the grief staff carry "behind the professional mask"^[5]. Interviews with 20 professionals in Spain identified "exclusion of clients from end-of-life and grief processes" as a theme in itself, and staff named not having "the specific skills to support clients in their grief" as a barrier^[18].

Children with an intellectual disability have been studied least of all: a 2025 US study noted they "have been minimally represented in grief research". Interviews with 19 caregivers and 6 children suggested that giving bereaved children chances to care for others and stay connected can help them cope^[19]. For the wider evidence on children whose parent has died, see what helps bereaved children.

When a parent who was also the carer dies, home can change too

"Increasing numbers of older adults with intellectual disabilities are living with ageing parents", as one UK research team puts it^[20]. In the United States, nearly three-quarters of the estimated 4.9 million people with intellectual and developmental disabilities live with family, and a quarter of those family caregivers are over 60, according to national estimates cited in a 2025 trial protocol^[4]. The US federal Medicaid agency puts it as "nearly one million households" that include adults with intellectual and developmental disabilities supported by an ageing caregiver^[21]. Comparable national counts for most other countries could not be found for this study.

When a parent who was the main carer dies, a person may lose their home, their routines and their main advocate at the same time as grieving for their parent. Research from the UK describes how this plays out. Family carers often keep providing support "due to dissatisfaction with services", which "can lead to people moving from the family home in a crisis", a study funded by the National Institute for Health and Care Research reported in 2024^[22]. In interviews and focus groups with 9 people with intellectual disabilities aged 40 and over, 11 parents and 16 siblings, families "knew they needed to make plans but did not feel supported to do so", and while people saw moving as a chance for independence, "they feared there were no viable alternatives"^[20]. The US trial protocol likewise notes: "Few caregivers engage in long-term care (LTC) planning, often due to a lack of information and support"^[4].

A move can also cut people off from the relationships that help with grief. In Ireland's IDS-TILDA ageing study, older adults with an intellectual disability relied on "support staff and co-resident friends in place of their own immediate family structures and wider friendships"^[23], and life events were more frequent and more burdensome for people living in institutional settings^[14]. None of these studies counts how many people move home after a parent's death, or how quickly; that figure does not appear to exist anywhere. The experience of the parents and siblings who cared is covered in our study of carers after caring.

Support that has been tested is promising, but the trials are small

Only one randomised trial of bereavement support for adults with an intellectual disability was found for this study. In London, bereaved adults were randomly assigned either to counselling from volunteer bereavement counsellors or to a support approach delivered by their own carers. The counselling "resulted in measurable gains both clinically and in terms of quality of life", while the carer-delivered approach "proved impracticable in most settings" and produced no improvement. The authors note the small numbers^[24]. That matters: it suggests ordinary bereavement counselling can work for people with a learning disability when it is offered, and that asking carers to deliver a structured programme alongside their everyday work was hard to put into practice.

Specialist approaches are being adapted rather than invented from scratch. In Ireland, researchers have adapted complicated grief therapy, an established treatment for people whose grief stays intense, including new ways to explain abstract ideas about death, and published it "for piloting with this population"^[25]. At the time of publication it had not yet been tested in a trial with this group. The longer-term follow-up from London points to something simpler underneath: people adapted more easily when carers met their "basic emotional needs"^[6].

Across studies, the same practical themes recur: open, honest communication about illness and death; involving people in informed choices and in the rituals around a death; and recognising the continuing bond people keep with the person who died^[8][10]. The Chilean researchers called for "accessible rituals that honour their emotional and relational needs"^[10].

What the evidence asks of us

The research is small, but it points consistently in one direction. What it implies for services, commissioners, funders and researchers:

• Treat changes after a death as possible grief. Since 1997, studies have found that distress and behaviour change after a parent's death are often not linked to the bereavement by the people around the person^[1], and that people report more grief than staff see^[11]. England's NICE guideline on people growing older with learning disabilities asks practitioners assessing care and support needs to be alert to "any changes in the person's usual behaviour", and to tell families and carers "about sources of support for people after a family bereavement"^[26].
• Plan before the crisis. The same guideline asks practitioners to help people and families "make decisions before a crisis point or life-changing event is reached (for example, the death of a parent or a move to new housing)"^[26]. Families say they want to plan but are not supported to^[20][22].
• Talk about death, and train staff to do it. With only a quarter of UK support staff trained on end of life or bereavement^[3], research with staff recommends training and support to build a more open culture^[5].
• Open mainstream bereavement services. NICE asks mainstream end of life care services to "make reasonable adjustments" for the person and those they live with "throughout palliative and end of life care and bereavement"^[26], and the one trial found that volunteer bereavement counselling helped^[24].
• Count and test. No country appears to publish how many people with a learning disability are bereaved, or how many move home after a parent dies. Linking disability records to death records, and running larger trials of adapted support would fill the biggest gaps.

Language: this piece uses plain words such as “died” rather than euphemisms, because they are clearer. It uses “learning disability”, the term used by people and organisations in the UK, and “intellectual disability” where a study or country uses it; both mean the same thing here, and neither refers to specific learning difficulties such as dyslexia.

Why we're publishing this

People with a learning disability are bereaved like everyone else, and because they now live longer, more of them experience grief^[18]. Their grief has a long history of being overlooked. This study gathers the evidence that their grief deserves recognition and support in one place, with every figure linked to its source, so that it can be cited in funding bids, service plans and policy work.

How to read this data

Almost none of this evidence comes from official statistics or population registers. It comes from small comparison studies, staff surveys, qualitative interviews and clinic samples, mainly from Ireland and the UK, with smaller contributions from the US, Spain, Brazil and Chile. Many studies rely on carers' or staff reports rather than people's own accounts, and the one study that compared the two found they differ^[11]. Staff surveys and interview studies are not random samples, and their figures should not be read as national rates. The US figures on family caregivers are estimates cited in a trial protocol and a government web page, not a count^[4][21]. The Irish life events figures cover stressful events in general, not bereavement alone^[14]. Where a study shows an association, such as between bereavement and later cognitive decline in Down syndrome, it does not show cause^[15]. Where this study says figures could not be found, that reflects a search of published research in October 2026; it does not mean no data exists anywhere.

Use this data

Free to cite with attribution to Understanding Bereavement. Learning disability organisations, services, researchers and journalists are welcome to reuse these figures and charts. For the underlying figures as a spreadsheet, get in touch.

Important: This study summarises published research about groups of people for general information. It is not medical advice or bereavement support, and it cannot describe or predict anything about an individual person or family. If you are worried about someone or about yourself, please speak to a GP or another qualified professional.

Sources

1. Hollins S, Esterhuyzen A. Bereavement and grief in adults with learning disabilities. The British Journal of Psychiatry, 1997. europepmc.org/article/MED/9330012
2. Dodd P, Guerin S, McEvoy J, et al. A study of complicated grief symptoms in people with intellectual disabilities. Journal of Intellectual Disability Research, 2008. europepmc.org/article/MED/18221331
3. Tuffrey-Wijne I, Finlayson J, Bernal J, et al. Communicating about death and dying with adults with intellectual disabilities who are terminally ill or bereaved: A UK-wide survey of intellectual disability support staff. Journal of Applied Research in Intellectual Disabilities, 2020. europepmc.org/article/MED/32072726
4. Steinway C, Wright C, Kwak S, et al. Innovative Web-Based Future Planning and Well-Being for Caregivers of Individuals With Intellectual and Developmental Disabilities: Protocol of a Pragmatic Randomized Controlled Trial. JMIR Research Protocols, 2025. europepmc.org/article/MED/41032360
5. Lord AJ, Field S, Smith IC. The experiences of staff who support people with intellectual disability on issues about death, dying and bereavement: A metasynthesis. Journal of Applied Research in Intellectual Disabilities, 2017. europepmc.org/article/MED/28699697
6. Bonell-Pascual E, Huline-Dickens S, Hollins S, et al. Bereavement and grief in adults with learning disabilities. A follow-up study. The British Journal of Psychiatry, 1999. europepmc.org/article/MED/10789302
7. Dodd P, Dowling S, Hollins S. A review of the emotional, psychiatric and behavioural responses to bereavement in people with intellectual disabilities. Journal of Intellectual Disability Research, 2005. europepmc.org/article/MED/15966961
8. McRitchie R, McKenzie K, Quayle E, et al. How adults with an intellectual disability experience bereavement and grief: a qualitative exploration. Death Studies, 2014. europepmc.org/article/MED/24524546
9. Clute MA. Living Disconnected: Building a Grounded Theory View of Bereavement for Adults with Intellectual Disabilities. Omega, 2017. europepmc.org/article/MED/28969519
10. Álvarez-Aguado I, Roselló-Peñaloza M, Figueroa-Figueroa J, et al. Grief experiences of older Chilean adults with intellectual disabilities: "It still hurts inside". Journal of Intellectual & Developmental Disability, 2026. europepmc.org/article/MED/41493355
11. Dodd P, McEvoy J, Lockhart K, et al. An exploratory study of self-reported complicated grief symptoms in parentally bereaved adults with intellectual disability. Journal of Intellectual Disability Research, 2021. europepmc.org/article/MED/33426748
12. O'Riordan D, Boland G, Guerin S, et al. Synthesising existing research on complicated grief in intellectual disability: findings from a systematic review. Journal of Intellectual Disability Research, 2022. europepmc.org/article/MED/36042575
13. Hulbert-Williams L, Hastings RP. Life events as a risk factor for psychological problems in individuals with intellectual disabilities: a critical review. Journal of Intellectual Disability Research, 2008. europepmc.org/article/MED/18671807
14. Bond L, Carroll R, Mulryan N, et al. The association of life events and mental ill health in older adults with intellectual disability: results of the wave 3 Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing. Journal of Intellectual Disability Research, 2019. europepmc.org/article/MED/30697858
15. Fonseca LM, de Oliveira MC, de Figueiredo Ferreira Guilhoto LM, et al. Bereavement and behavioral changes as risk factors for cognitive decline in adults with Down syndrome. Neuropsychiatric Disease and Treatment, 2014. europepmc.org/article/MED/25484589
16. Ortega MDC, Ortuño F, Real de Asúa D. Psychosocial stressors prior to Down Syndrome Regression Disorder: findings from two referral clinics. Frontiers in Psychiatry, 2026. europepmc.org/article/MED/42483097
17. McEvoy J, Machale R, Tierney E. Concept of death and perceptions of bereavement in adults with intellectual disabilities. Journal of Intellectual Disability Research, 2012. europepmc.org/article/MED/21801263
18. Fernández-Ávalos MI, Fernández-Alcántara M, Pérez-Marfil MN, et al. Actions taken and barriers encountered by professionals working with adults with intellectual disabilities who experience grief: a qualitative approach. Death Studies, 2024. europepmc.org/article/MED/37395524
19. Gaines AG, Wright PM, Goldberg J, et al. Caring Connections: A Grounded Theory Study of the Grief and Bereavement Experiences of Children With Intellectual Disabilities. Omega, 2025. europepmc.org/article/MED/41060995
20. Anderson-Kittow RJ, Keagan-Bull R, Giles J, et al. 'There's a timebomb': Planning for parental death and transitions in care for older people with intellectual disabilities and their families. Journal of Applied Research in Intellectual Disabilities, 2024. europepmc.org/article/MED/38093532
21. Centers for Medicare & Medicaid Services. Supporting adults with intellectual and developmental disabilities and their aging caregivers. Medicaid.gov, accessed 2026. medicaid.gov/medicaid/home-community-based-services/…
22. Ryan S, Wallace L, Tilley E, et al. Improving support and planning ahead for older people with learning disabilities and family carers: a mixed-methods study. Health and Social Care Delivery Research, 2024. europepmc.org/article/MED/38940476
23. McCausland D, McCallion P, Brennan D, et al. Interpersonal relationships of older adults with an intellectual disability in Ireland. Journal of Applied Research in Intellectual Disabilities, 2018. europepmc.org/article/MED/28332320
24. Dowling S, Hubert J, White S, et al. Bereaved adults with intellectual disabilities: a combined randomized controlled trial and qualitative study of two community-based interventions. Journal of Intellectual Disability Research, 2006. europepmc.org/article/MED/16507032
25. O'Riordan D, Conway E, Dodd P, et al. Adapting Complicated Grief Therapy for Use With People With Intellectual Disabilities: An Action Research Study. Journal of Applied Research in Intellectual Disabilities, 2024. europepmc.org/article/MED/39328025
26. National Institute for Health and Care Excellence. Care and support of people growing older with learning disabilities (NG96). NICE, 2018. nice.org.uk/guidance/ng96