ORIGINAL ARTICLE
Issues in caregiving for older people with intellectual disabilities and
their ageing family carers: a review and commentary
Assumpta Ryan BSc, RNT, RN, PGCTHE, MEd, PhD
Reader, School of Nursing and Institute of Nursing and Health Research, University of Ulster, Northern Ireland, UK
Laurence Taggart BSc, PGCE, RNID, PhD
Lecturer, School of Nursing and Institute of Nursing and Health Research, University of Ulster, Northern Ireland, UK
Maria Truesdale-Kennedy BSc, PhD
Research Associate, School of Nursing and Institute of Nursing and Health Research, University of Ulster, Northern Ireland,
UK
Eamonn Slevin BSc, DNSc, PGDip
Reader, School of Nursing and Institute of Nursing and Health Research, University of Ulster, Northern Ireland, UK
Submitted for publication: 17 May 2012
Accepted for publication: 17 December 2012
Correspondence:
Assumpta Ryan
School of Nursing and Institute of Nursing
and Health Research
University of Ulster
Cromore Road
Coleraine County Londonderry BT52 1SA
Northern Ireland
UK
Telephone: +44 28 70 324256
E-mail: aa.ryan@ulster.ac.uk
RYAN A., TAGGART L., TRUESDALE-KENNEDY M. & SLEVIN E. (2013) Issues in caregiving for
older people with intellectual disabilities and their ageing family carers: a review
and commentary. International Journal of Older People Nursing
doi: 10.1111/opn.12021
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
© 2013 Blackwell Publishing Ltd 1