Widening Access to Palliative Care for People with Learning Disabilities

by Linda McEnhill

Feb 15, 2013
This publication represents an important step towards greater partnership by sharing some of the thinking, good practice and resources that have been developed throughout learning disability and end of life care services in a form that will be accessible to all practitioners but especially those in a hospice setting. It includes sections on the definition and incidence of learning disability, healthcare for people with learning disability, as well as a glossary and an extensive section on resources.
  • A Leicestershire-based study looked at mortality patterns in people with learning disabilities over a 13-year period and found that overall mortality was three times higher in people with learning disabilities then those without. The highest number of deaths were observed in people with profound learning disabilities, people with Down's syndrome, and people with learning disabilities living in cities. (Tyer et al., 2007)
  • People with a learning disability are 58 times more likely to die before the age of 50 than the general population and are four times more likely to have a preventable cause of death. (McGuigan et al., 1995)
  • People with a learning disability are four times more likely to develop dementia than the general population, irrespective of the cause of their disability. This likelihood is greater for the 20% of learning-disabled people who have Down's syndrome.
  • Alzheimer's disease in people with Down's syndrome has an earlier onset and an average course of five years from diagnosis to death. (Prasher, 1995; McCarron et al., 2005)
  • Children with a learning disability are likely to experience more death (especially amongst their peers) than children from the general population, and thus may require more support.
  • Of people who care for a relative with a learning disability; 60% of parents spent more than 10 hours a day on basic physical care, 48% received no support from outside the family, and 78% received either no support or less than two hours support per week to assist in home care.
  • Of people who care for a relative with a learning disability and received assistance: 48% were dissatisfied overall with the services received, 80% thought the professionals they had contact with were poorly or very poorly coordinated, and 37% had contact with eight or more professionals.
  • 54% of parents of a learning disabled child said they would like to see their grown-up son or daughter move from the family home to a high-quality alternative, but 61% had received no support in planning for that possibility.
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