Mutual caring amongst older families is increasing but often remains hidden. Mencap’s report, The Housing Timebomb (2002) estimated that 29,000 people with learning disabilities are living at home with family carers aged 70 or more. Valuing People (2001) estimated that 1 in 4 people with learning disabilities living at home with family carers over the age of 70 are not known to statutory services until there is a crisis.
More and more people with learning disabilities are providing regular and substantial care for their ageing relatives. This care ranges from help with personal care, medication, cooking and cleaning to helping with shopping and companionship. In many cases, without the teamwork and support both the older family carer and the person with learning disabilities provide for each other then neither would be able to remain living independently within their local community.
Some of the main issues for people with learning disabilities who are carers include:
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Feeling proud of helping out and returning the care and support that has been provided to them by their parents for so many years
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Great team work between the family members
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Generally not being recognised for their role as carers
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Not always offered many choices about continuing to care or the way that other support is being provided
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Fear from both the person with learning disabilities and the older family carer of being judged and separated if workers discover the extent of the mutual caring that is happening
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Lack of information that is accessible and easy to understand about peoples rights as a carer, support that might be available and the different health conditions that their elderly relative may be suffering with
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Lack of practical support with some tasks that might make a big difference, such as with shopping, changing light bulbs, getting to appointments, getting the right benefits
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Feeling very isolated and having reduced opportunities for friendship and breaks.
All of the points above are issues that all carers often struggle with anyway. The struggle is even more difficult if a person has a learning disability.
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Following on from the work of the Older Families Initiative, the project aims to highlight this neglected area and provide evidence of practical approaches that can be used in different settings.
We hope this will lead to real change in the experiences of people with learning disabilities who are carers for their older relatives and the support they are offered.
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The Mutual Caring Project provided some support to four areas to help them look at how they were supporting older families where mutual caring was happening. This work did not happen how we expected but we have learnt a lot of important lessons.
These include:
- The term ‘mutual caring’ is not easy for many older families, workers and services to understand
- It has been difficult to get services for people with learning disabilities and older people to join up
- Lots of the older family carers who already had good support for themselves as carers were worried about what might happen if they admitted they relied on the person they support for practical help and support
- The need for good quality advocacy support, particularly for people with learning disabilities who are caring was highlighted
- Differences in local priorities and capacity to support people to plan for the future makes a difference
- More work needs to be done around self directed support and the opportunities it offers to join up support for older families where mutual caring is taking place
A short evaluation report of the first stage of work by the Mutual Caring project will shortly be available to download from here.
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Being a Carers and Having a Carers Assessment has been produced by the Valuing People Support Team to support the growing numbers of people with learning disabilities who are carers themselves to get the help they need. It has been designed in sections for people to work through with family, workers and advocates they trust. It will help people to recognise if they are ‘caring’ or just ‘helping out’. The pack helps people understand their rights and learn about how carers’ assessments can be used to support them. It also includes a form to help people prepare for a carers’ assessment by looking at the different things they may be doing and where help may be needed.
The pack is full of stories from carers with learning disabilities who have been involved in designing and developing the pack. They are part of the Network for Carers with Learning Disabilities supported by the Valuing People Support Team. The Network includes members who are involved in the Foundation’s Mutual Caring Project, members of Bromley Mencap’s Mutual Caring Project, and Eve Rank and Richard West from the ‘Who cares for us?’ campaign supported by Inspired Services.
The pack was written by Dalia Magrill on behalf of the Mutual Caring Project with the support of the Network for Carers with Learning Disabilities. The Network is supported by the VPST.
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For more information and to feedback about the assessment pack contact Dalia Magrill, Project Coordinator, by dmagrill@fpld.org.uk or telephone 07863 341475.
Thsi project is funded by Calouste Gulbenkien Foundation and the Valuing People Support Team (VPST)
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