People with Disability

This page refers to people with an intellectual or developmental disability and autism spectrum disorders. There is limited evidence about the palliative care needs of people with disability in aged care.

The government and disability sectors have focused on initiatives to provide appropriate accommodation for people with disability to avoid the necessity of younger people with disability living in aged care. The number of people with disability living in aged care is small and scattered. Most facilities have fewer than three residents with disability or none at all. [1]

While people with disability may be younger than most residents in aged care, this is not always so. People with disability are living longer and may be as old as other residents. [1] Over the past 100 years the life expectancy of people with Down’s syndrome has increased from 12 years to over 60 years. With increased attention to lifestyle factors and health promotion it is possible that the high rates of diabetes and heart disease in this group will be reduced and more people with disability will live into old age. [2]

People with intellectual disability are admitted to aged care because of:

  • increasing care needs, although younger than most residents they are likely to need high levels of care
  • ageing carers or death of family carer
  • previous living arrangements (supported care, independent living) or community services unable to meet current levels of care
  • lack of appropriate services or accommodation in their area.

Care issues

Resident’s with intellectual disability:

  • have poorer health, due to high rates of illnesses like epilepsy, diabetes and heart disease
  • are likely to experience premature ageing
  • people with disability experience high rates of depression and dementia
  • are likely to have difficulties with hearing, vision, mobility and stamina
  • may find it difficult to participate in RAC activity program as program offered may not suit their needs
  • may have difficulty accessing specific disability services once admitted to RAC
  • staff may have limited knowledge and understanding of disability issues and care.

Screening residents for depression is routine in aged care. The diagnosis of depression in intellectual disability may be complicated.

People with Asperger’s syndrome have difficulty understanding and recognising emotions, their own and others and difficulty expressing their emotions.
People with more severe forms of autism may not be able to communicate clearly at all.
Changes in behaviour, aggressive outbursts, irritability and altered sleep patterns may indicate depression. [3] Depression in people with Down’s syndrome may resemble dementia. Signs of depression may include:

  • mood changes, tearfulness, increased anxiety and obsessive behaviour
  • reduced ability to concentrate and being easily distracted
  • loss of appetite.

People with Down’s syndrome may or may not be able to describe their feelings. However, changes in behaviour and personality are often apparent to family and caregivers.

Down’s syndrome and ageing

As people with Down’s syndrome age the following may occur:

  • women may undergo premature menopause leading to an increased risk of osteoporosis
  • hypothyroidism which if left untreated may be a cause of decline in function
  • sensory changes, loss of vision (cataracts, glaucoma) and loss of hearing
  • arthritis
  • instability of neck joint is a serious concern; it may lead to difficulty holding head up, pain and spinal cord damage (weakness of arms and legs, difficulty walking, loss of fine motor control), and
  • dementia.

People with Down’s syndrome are at risk of developing Alzheimer’s disease. The overall incidence may not be greater than the general population, but it occurs 30-40 years earlier, in middle age. Families and carers may not be aware of the risk of dementia, or realise that the behavioural changes seen are due to dementia and are not due to Down’s syndrome. [4]

  • Useful Tip

Look at the person and not the disability.

The Disability Distress Assessment Tool (DisDat) is available online. This tool allows carers to recognise distress and identify possible reasons for the distress in people who cannot communicate needs easily due to intellectual impairment.

  1. Bigby C, Webber R, Bowers B, McKenzie-Green B. A survey of people with intellectual disabilities living in residential aged care facilities in Victoria. J Intellect Disabil Res. 2008 May;52(Pt 5):404-14. Epub 2008 Jan 14.
  2. Janicki MP, Davidson PW, Henderson CM, McCallion P, Taets JD, Force LT et al. Health characteristics and health services utilization in older adults with intellectual disability living in community residences. J Intellect Disabil Res. 2002 May;46(Pt 4):287-98.
  3. Ghaziuddin M, Ghaziuddin N, Greden J. Depression in Persons with Autism: Implications for Research and Clinical Care. J Autism Dev Disord. 2002 Aug;32(4):299-306.
  4. Carling-Jenkins R, Torr J, Iacono T, Bigby C. Experiences of supporting people with Down syndrome and Alzheimer's disease in aged care and family environments. J Intellect Dev Disabil. 2012 Mar;37(1):54-60. Epub 2012 Jan 3.

Residential Aged Care

Clinical Practice

Systematic Review collection

Last updated 19 July 2017