Intellectual disability is generally defined as having below average IQ and poor adaptive behaviour skills, evident before the age of 18. A person with intellectual disability learns more slowly than other people. They are likely to have difficulty understanding abstract concepts and interpreting many of the euphemisms associated with death and dying, such as 'to pass away'. They may also have difficulty with dates and time, and with expressive and receptive communication. There is a good explanation of intellectual disability in the disability awareness kit produced by the State Library of Victoria.
The Australian Institute of Health and Welfare document, The definition and prevalence of intellectual disability in Australia provides useful Australian data.
Likely common issues
Those with an intellectual disability may not easily understand issues around death and dying. It is important to carefully explain the situation and any decision making. The intellectually disabled person may be the patient or the carer, so support could be needed during the illness and bereavement.
The St George’s University of London in the United Kingdom (UK) has a website on Learning Disabilities and Health. There is a useful section called Top ten tips for effective consultation. (In the UK, intellectual disability is referred to as learning difficulties, which has a different meaning in Australia).
People with intellectual disability have higher age specific mortality rates than the general population. However their life expectancy has increased more dramatically than the general population so the numbers and proportion that are living into old age are increasing.
Studies have shown that around one in ten people with intellectual disabilities now die of cancer.  However, behavioural and developmental issues can be challenging and sometimes make management of these clients difficult. This could be from diagnosing problems or controlling symptoms. Cancer, Palliative Care and Intellectual Disabilities from the St Georges' University of London website has some useful information.
Some clients will be living independently, whereas others will live in group homes with four to six residents or larger congregated care facilities. The staff in these facilities are ideally placed to help with communication and to interpret behaviour when symptoms develop. The staff may be the only people who know the person well, particularly for the generation of people who are now ageing, and were separated from their families due to practices of institutionalisation. Many staff in group homes are trained in disability support and seldom have a nursing background. This also raises issues around their education and support, and for the other residents, in relation to death and dying.
In Australia, many clients with intellectual disability continue to live with their ageing parents. It is not unusual for parents to continue caring for their adult children 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, thus in later life their closest family members are likely to be a sibling or more distant relative.
Many intellectual disability services will not necessarily think of referral to specialist palliative care.
Issues of collusion around diagnosis, prognosis and in regards to surrogate decision making can be present in the families of those who have intellectual disabilities. Information can be found at the St George’s University of London website on consent and the intellectually disabled.
However, the law regarding substitute decision making will vary with each jurisdiction, and practitioners should be aware of the relevant provisions for guardianship in their state.
Policies and resources
- Cooke LB. Cancer and learning disability. J Intellect Disabil Res. 1997 Aug;41(4):312-6.
Related CareSearch pages
Review Collection: Intellectually Disabled
For Patients and Families: Intellectually Disabled
Last updated 12 December 2011*