The life expectancy of people with a learning disability has increased. This means that many are living into old age with diseases such as cancer or dementia. This also means that if they are not ill themselves, they may have a family member who is seriously ill. Some of the information here may help when faced with this situation.

Likely common issues

Those with an intellectual disability may not easily understand issues around death and dying. Careful explanation is needed. There are some resources below that may help.

Support is needed during the illness and in bereavement. This may come from family members or from health professionals. The following Clinical Information from St George’s University of London may be helpful to read. You could also show it to health professionals. It is about how to communicate with someone who has an intellectual disability. It also has information about decision making on behalf of someone with an intellectual disability.

Many of those with an intellectual disability live with their families. Some live independently, and others live in group homes or larger care facilities. Families and staff in care facilities, who will often know the person quite well, are able to help health professionals with interpreting behaviour when symptoms develop. It is important to explain what is happening and what has changed.

In Australia, many people with intellectual disability continue to live with their ageing parents. It is not unusual for parents to continue caring for their adult children with intellectual disabilities until they become too frail to care for their child or they die. People with intellectual disability are unlikely to have a spouse or adult children and thus in later life their closest family members are likely to be a sibling or more distant relative.

Often people don’t know when or why to refer to palliative care services. The CareSearch page What is palliative care may help with why. When to refer may be difficult as health professionals will see someone who is severely disabled and may want to refer immediately. However the disabilities have been present for a long time. For families and carers, this may in itself be a problem as they may not realise that things have changed.

Resources

The following booklets may help you when talking 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: A booklet that describes the choices and plans that Tony has made for the end of his life.
• Let's Talk about Getting Older. 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.

Related CareSearch pages

What is palliative care?
How to Care
How to Help Families

This page was created on 4 April 2008 .
Last updated 11 August 2011*