Issues in Caregiving for Older People With Intellectual Disabilities and Their Ageing Family Carers: A Review and Commentary

Int J Older People Nurs. 2014 Sep;9(3):217-26. doi: 10.1111/opn.12021. Epub 2013 Mar 15.


Background: In keeping with worldwide demographic changes and an ageing population, people with intellectual disabilities are living longer and all the evidence suggest that this trend will continue. This 'new' population of older people and their carers will pose challenges for health and social care providers.

Aim: This paper presents a review of the literature on key issues influencing caregiving for older people with intellectual disabilities and their ageing family carers.

Methods: The review was undertaken using a framework adapted from the NHS Centre for Reviews and Dissemination. Papers were identified through the use of databases including CINAHL, Science Direct, PsychoInfo, Blackwell Synergy, the Cochrane Library and MEDLINE.

Findings: The key themes which emerged from the literature and which consequently form the basis of this review include: ageing family carers, future planning and support services. In the context of family caregiving, older people with intellectual disabilities represent a unique group insofar as they are unlikely to be married and therefore have no spouse or dependents to care for them in later life. As a result, parents (usually mothers) have to continue caring for their son or daughter with an intellectual disability as they both grow older, often resulting in a mutually dependent relationship. The caregiving situation is further complicated by poor emergency and future planning and by a lack of appropriate services for this group of individuals.

Conclusions: In light of the emergence of a 'new' population of older people with intellectual disabilities, there is an urgent need to develop services and support structures which will enable these individuals and their ageing carers to 'age in place' and when this is no longer possible, to have appropriate alternatives that recognise the duality of their needs as older people and as people with intellectual disabilities.

Implications for practice: Opportunities for supervision could be one way to increase individuals' awareness of their own role in the team.

Keywords: ageing; carers; family caregiving; intellectual disabilities; learning disabilities; older people.

Publication types

  • Research Support, Non-U.S. Gov't
  • Review

MeSH terms

  • Aged
  • Aging / psychology*
  • Caregivers / psychology*
  • Health Services Needs and Demand*
  • Humans
  • Intellectual Disability / nursing*