Increasing numbers of 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 companionship and help with shopping.
In many cases, without the mutual support that the older family carer and the person with learning disabilities provide for each other, neither would be able to remain living independently in their local community.
The main issues for people with learning disabilities who are carers include:
Feeling proud of helping out and returning the care and support that has been provided to them by their parents for so many years
Great team work between the family members
Generally not being recognised for their role as carers
Not always being offered many choices about continuing to care or the way that other support is provided
Fear in both the person with learning disabilities and the older family carer of being judged and separated if workers discover the extent of their mutual caring
Lack of information that is accessible and easy to understand about carers' rights, support that is available and the different health conditions that their elderly relative may have
Lack of practical support with some tasks that could make a big difference, such as shopping, changing light bulbs, getting to appointments or getting the right benefits
Feeling very isolated and having reduced opportunities for friendship and breaks
Many carers struggle with these issues. However, 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.
The Foundation aims to support at least four local authority areas to identify and respond effectively to issues of mutual caring. We will support families at:
an individual level using family-centred planning approaches with at least five older families
a strategic level by looking at the way support is provided to people with learning disabilities who are carers and making changes as a result of planning and consultation.
Contact Dalia Magrill, Project Coordinator, by emailing Dalia or telephone 07863 341475.
Thsi project is funded by Calouste Gulbenkien Foundation and the Valuing People Support Team (VPST)
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