Intellectual Disability

This information is for the family or carer of a person who has an intellectual disability.

People with a learning disability are living longer. Many will live into old age with diseases such as cancer or dementia. They also may come into contact with someone close to them who is dying. Issues around death and dying may not be easy to understand. You may need to explain what is happening and what they need to do. There are some resources below that may help.

All people need support during a serious illness or when someone has died. This may come from family members or from health professionals. The following Information may be helpful to read about how to communicate with someone who has an intellectual disability. It also has information about making decisions on behalf of someone with an intellectual disability. You could show it to your health professionals.

The person that you know with an intellectual disability may live with their family. They may also live independently, or in a group home or care facility. Usually when someone is ill they develop symptoms or signs that something is wrong. Someone with an intellectual disability may not be able to tell you what is wrong. You may see a change in their mood or how they behave. It is important to explain to health professionals what is different from their normal behaviour.

Some people with an intellectual disability live with elderly parents who may become too frail to care. They may die before their children. People with an intellectual disability are less likely to have a spouse or adult child to care for them. As they grow older their closest family members are likely to be a brother or sister, or a more distant relative.

You may not know much about palliative care or when to refer. This may be a difficult decision. The person has had these disabilities for a long time, so you may not see that much has changed. On the other hand, someone who doesn’t know the person very well may want to refer to palliative care immediately. They may just see someone who is severely disabled. You need to talk to health professionals about this.

These booklets may help you to talk to someone who has an intellectual disability. They are about getting older and about dying. They were written for people with Down’s syndrome, but can help anyone with an intellectual disability (as appropriate).

When I die: (634kb pdf) A booklet that describes the choices and plans that Tony has made for the end of his life.
Let's talk about getting older (399kb pdf). It is about the changes that may happen as you get older
A story by a man called Richard West with Down’s syndrome about When his dad died. This is his experience but it can be very different for other people.
Produced by Dying Matters and the National End of Life Care Programme 'We’re living well but dying matters' includes people with learning difficulties talk about death, dying and bereavement.
From The Family Advice and Information Resource and the University of Glasgow(UK) - two leaflets for people with a learning disability:
- 'Preparing for your death (912kb pdf)'
- 'When Someone has died - Advice for those left behind (853kb pdf)'

A series of factsheets from Southern Metro Palliative Care Consortium of Victoria provide palliative care guidance for the workforce supporting people who live in a disability group home.

Talking End of Life ...with people with intellectual disability (TEL) shows you how to teach people with intellectual disability about the end of life.
TEL is designed for disability support workers but is also helpful for others including families, health professionals, and educators

What is Palliative Care?

Last updated 19 November 2018