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research
When family members grow older

As more people with learning disabilities live longer, additional pressures arise for both them
and their ageing carers. Researchers Aoife Mahon, Jitka Vseteckova and Liz Tilley carried out
three systematic literature reviews of the research

espite the ongoing health disabilities and their carers, including Findings
inequalities experienced by people older carers. Older carers need more support to plan
Dwith learning disabilities in the UK The early policy emphasis on older for the future
(Heslop et al, 2015), a significant number families of people with learning Our review shows that:
of them are now living longer (Walker and disabilities has since waned, particularly ● Older carers are aware they cannot
Ward, 2013). following the loss of Department of care indefinitely
Most individuals with learning Health funding for the National Valuing ● Few carers have made long-term plans
disabilities continue to be cared for by a Families Forum in 2017. about how the person they care for will
family member, usually a parent, despite As the number of older carers be looked after in future
the challenges their relative may be is anticipated to rise, it remains unclear ● Carers report living with fear about the
experiencing because of advancing age. what support older families need future, feeling ignored and not having
It is estimated that, in the UK, and what interventions, if any, are enough information
approximately 29,000 people with available to meet their requirements ● Professionals require more training to
learning disabilities live with a member of across the UK. rebuild trust and to be more proactive.
their family who is over the age of 70 Three reviews of the literature were
(Mencap, 2002). conducted to better understand the needs “Well, from the day he was born until
Over the past decade, government and care support of both older adults with the day I die, I have that worry on
strategies and numerous white papers, learning disabilities and ageing carers in my head when I put my head on the
including Caring for our Future: Reforming the UK. pillow until I rise in the morning. If I die,
Care and Support (Department of Each review had a different research what is going to happen to X or will
Health, 2012), have discussed the need question. The main findings from each anybody be good to him?” (Taggart et
to support people with learning review are discussed below. al, 2012: 226).

Greater recognition of mutual caring
Identifying the needs, support and future care plans for older relationships is needed
people with learning disabilities and their ageing carers in the UK: Research tells us that:
three systematic reviews of the literature ● Many adults with learning disabilities
support their ageing carer(s)
Aims The aim guiding our three literature reviews was to better understand: the ● Frequently, mutual caring relationships
needs of older people with learning disabilities and ageing family carers; the are identified only when a crisis occurs
interventions available in the UK to meet these needs; and any support available ● These relationships may be a barrier to
to address future care needs, including crisis care and mutual care relationships future care planning
Methods The research team had three separate topics of interest: the physical and ● Professionals need to better recognise
emotional needs of ageing carers; what happens when future care is not planned these relationships and support those
(crisis care); and to better understand the dynamics of and support for mutual care involved
relationships, which occur when people with learning disabilities care for their ● “Care” and “carer” are problematic
family carer. Many articles were read to find out what is known about these topics. terms, especially in mutually supportive
We will discuss the findings of the three reviews. Protocols were published when relationships
not enough papers were generated for a full review. ● For parents to feel safe to identify their
Read the reviews child as a carer, a support net is vital.
● 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 “My mummy looks after me, and I look
20(4):162-178 after her.” (Bowey and McGlaughlin,
● Mahon A, Vseteckova J, Tilley, E, Pappas Y, Randhawa G (2019) Protocol: a 2005: 1383)
systematic scoping review of the interventions available during care crises for
people with learning or intellectual disabilities (LD) who are cared for by an Care crises are frequent
ageing carer within the United Kingdom. Biomedical Journal of Scientific and Our review highlights that:
Technical Research 20(5): 15389–15393. https://doi.org/10.26717/ ● Crises most commonly occur when a
BJSTR.2019.20.003512 carer becomes ill, can no longer cope
● Mahon A, Vseteckova J, Tilley E, Pappas Y, Randhawa G (2019) A systematic or dies
scoping review protocol of the impact of mutual care on individuals with learning ● Many mutual care relationships are only
disabilities and their ageing carers in the United Kingdom. Biomedical Journal of identified at times of crisis
Scientific and Technical Research. https://doi.org/10.26717/BJSTR.2019.21.003621 ● Planning for the future reduces crisis
situations

26 Vol 34 No 1 | Autumn 2020 Community Living www.cl-initiatives.co.uk