Despite the ongoing health inequalities experienced by people with learning disabilities in the UK (Heslop et al, 2015), a significant number of them are now living longer (Walker and Ward, 2013). Most individuals with learning disabilities continue to be cared for by a family member, usually a parent, despite the challenges their relative may be experiencing because of advancing age. It is estimated that, in the UK, approximately 29,000 people with learning disabilities live with a member of their family who is over the age of 70 (Mencap, 2002).
Over the past decade, government strategies and numerous white papers, including Caring for our Future: Reforming Care and Support (Department of Health, 2012), have discussed the need to support people with learning disabilities and their carers, including older carers. The early policy emphasis on older families of people with learning disabilities has since waned, particularly following the loss of Department of Health funding for the National Valuing Families Forum in 2017. As the number of older carers is anticipated to rise, it remains unclear what support older families need and what interventions, if any, are available to meet their requirements across the UK.
Three reviews of the literature were conducted to better understand the needs and care support of both older adults with learning disabilities and ageing carers in the UK. Each review had a different research question. The main findings from each review are discussed below.
Older carers need more support to plan for the future
Our review shows that:
● Older carers are aware they cannot care indefinitely
● Few carers have made long-term plans about how the person they care for will be looked after in future
● Carers report living with fear about the future, feeling ignored and not having enough information
● Professionals require more training to rebuild trust and to be more proactive.
“Well, from the day he was born until the day I die, I have that worry on my head when I put my head on the pillow until I rise in the morning. If I die, what is going to happen to X or will anybody be good to him?” (Taggart et al, 2012: 226).
Greater recognition of mutual caring relationships is needed
Research tells us that:
● Many adults with learning disabilities support their ageing carer(s)
● Frequently, mutual caring relationships are identified only when a crisis occurs
● These relationships may be a barrier to future care planning
● Professionals need to better recognise these relationships and support those involved
● “Care” and “carer” are problematic terms, especially in mutually supportive relationships
● For parents to feel safe to identify their child as a carer, a support net is vital.
“My mummy looks after me, and I look after her.” (Bowey and McGlaughlin, 2005: 1383)
Care crises are frequent
● Crises most commonly occur when a carer becomes ill, can no longer cope or dies
● Many mutual care relationships are only identified at times of crisis
● Planning for the future reduces crisis situations
● Individuals with learning disabilities report fears about the future and need more choice and information in planning their future housing.
“When the time comes, I’ll think about it, but I don’t know about it yet. The time might come if I have to move, ’cause of since my dad died, but I’m not ready yet. Let’s just see what happens.” (Bowey and McGlaughlin, 2005: 1386).
Impact and implications
Older carers and individuals with learning disabilities require more support to plan ahead. It is critical that their needs are acknowledged and met by commissioners, services and professionals to reduce crises in care.
More research is needed to understand the future care preferences of older families, and the resources and interventions that would support them.
Aoife Mahon is at Adelphi Values, and Jitka Vseteckova and Liz Tilley are at the Open University
Identifying the needs, support and future care plans for older people with learning disabilities and their ageing carers in the UK: three systematic reviews of the literature
Aims – The aim guiding our three literature reviews was to better understand: the needs of older people with learning disabilities and ageing family carers; the interventions available in the UK to meet these needs; and any support available to address future care needs, including crisis care and mutual care relationships
Methods – The research team had three separate topics of interest: the physical and emotional needs of ageing carers; what happens when future care is not planned (crisis care); and to better understand the dynamics of and support for mutual care relationships, which occur when people with learning disabilities care for their family carer. Many articles were read to find out what is known about these topics. We will discuss the findings of the three reviews. Protocols were published when not enough papers were generated for a full review.
Read the reviews:
● Mahon A, Tilley E, Randhawa G, Pappas Y, Vseteckova J (2019) Ageing carers and intellectual disability: a scoping review. Quality in Ageing and Older Adults 20(4):162-178
● Mahon A, Vseteckova J, Tilley, E, Pappas Y, Randhawa G (2019) Protocol: a systematic scoping review of the interventions available during care crises for people with learning or intellectual disabilities (LD) who are cared for by an ageing carer within the United Kingdom. Biomedical Journal of Scientific and Technical Research 20(5): 15389–15393. https://doi.org/10.26717/ BJSTR.2019.20.003512
● Mahon A, Vseteckova J, Tilley E, Pappas Y, Randhawa G (2019) A systematic scoping review protocol of the impact of mutual care on individuals with learning disabilities and their ageing carers in the United Kingdom. Biomedical Journal of Scientific and Technical Research. https://doi.org/10.26717/BJSTR.2019.21.003621
● More support is needed to encourage planning for older families to reduce care crises
● Mutual care relationships among older families of people with learning disabilities in the UK are increasing. Commissioners and services need to acknowledge and respond to this change
● Future research must examine what care options and support networks are most suitable to meet the needs of these families
Bowey L, McGlaughlin A (2005) Adults with a learning disability living with elderly carers talk about planning for the future: aspirations and concerns. British Journal of Social Work 35(8):1377-1392.
Department of Health (2012) Caring for our Future: Reforming Care and Support. London: Mencap
Heslop P, Lauer E, Hoghton M (2015) Mortality in people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 28(5):367-372.
Mencap (2002) The Housing Timebomb: the Housing Crisis Facing People with a Learning Disability and their Older Parents. London: Mencap
Taggart L, Truesdale-Kennedy M, Ryan A, McConkey R (2012) Examining the support needs of ageing family carers in developing future plans for a relative with an intellectual disability. Journal of Intellectual Disabilities
16(3):217-234. Walker C, Ward C (2013) Growing older together: ageing and people with learning disabilities and their family carers. Tizard Learning Disability Review 18(3): 112-119