Mutual Caring: Supporting older families who are looking after each other

• What is Mutual Caring?

• The Mutual Caring Project

• Key points and recommendations

• Resources, publications and videos 

• How we can help

What is Mutual Caring?

More people are living longer than ever before, including people with learning disabilities.  As a result, an increasing number of people with learning disabilities are still living at home with family carers who are now 70 or older. Those carers may be parents, siblings, grandparents, or other close relatives or friends. They have often spent a lifetime caring.

• 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

• 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

• lack of practical support that could make a big difference, such as with shopping, changing light bulbs, getting to appointments, getting the right benefits

• geeling 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 learning disabilities.

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The Mutual Caring Project

The Mutual Caring Project was set up to help promote recognition of good practice and develop improved service provision for older families where the balance of the caring relationship between the long-term family carer (often a parent) and the person with learning disabilities (normally an adult son or daughter) has changed.

The aims of the project were:

• to directly support the development and promotion of good practice in supporting older families to plan for the future where a person with learning disabilities is providing regular and substantial care to their elderly relative

• to provide expertise and support directly to a sample of Local Authorities to enable them to develop a coordinated response that could be proven to make a positive difference to the lives of people with learning disabilities and their ageing relatives who are caring for each other

• to champion innovation and support for the needs of older families, particularly in relation to mutual caring

• to disseminate good practice and lessons learned from the development work.

Read more about the Mutual Caring Project.

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Key Points and recommendations

• Raise awareness among workers about mutual caring

• Provide on-going training and awareness raising across a wide range of services, with a particular focus on frontline staff such as GP receptionists and learning disability day centre workers

• Include appropriate questions in assessments for carers and for people with learning disabilities to identify situations of mutual caring and repeat at regular intervals, especially where family carers are over 65, or where there is only one family carer 

• Introduce a means of measuring the incidence of mutual caring

• Develop close working relationships between learning disability and older people’s services to ensure appropriate sharing of information and to enable the delivery of support services, that address the interdependent needs of the family carer and the person with a learning disability 

• Integrate the needs of this group of people into local carer services, which are generally unfamiliar with people with learning disabilities acting as carers

• Ensure person-centred planning includes crucial family members, specifically the older family carer and the learning disabled carer as well as appropriate extended family members

• Develop service protocols that set out clear lines of responsibility between learning disability and older people’s services for providing appropriate interventions to families providing mutual care. These will respect the needs both of the family carer and of the person with a learning disability who is assuming caring responsibilities 

• Learning Disability Partnership Boards should link with mainstream older people’s and carers’ programmes and seek to work in greater partnership with these services.  In particular, they need to ensure that their respective strategies join up and that funds linked to the Carers Grant and elements of the new National Carers Strategy include initiatives to benefit mutual carers 

• Develop relationships with families to provide them with the confidence to say when a situation of mutual care exists

• Provide accessible information for families about mutual caring. This might include information on services, e.g. short breaks and respite, available through learning disability, older people’s and carers’ services

• Work with the older family carer and the person with learning disabilities who is assuming caring responsibilities and help them to recognise and acknowledge the extent of mutual support being given and so consider whether it is appropriate and sustainable. Ensure carers’ assessments are conducted with both the family carer and with the carer with a learning disability, and that these lead to practical, joined up outcomes, including robust emergency plans

• Make sure that care packages and personal budgets reflect the changing nature of the caring relationship and take into account the needs and preferences of both family members

• Develop effective person centred planning: this is the key to working well with families and is most likely to reveal mutual caring

• Promote Circles of Support as a way of involving more people in a family's network

• Improve advocacy for older people and people with learning disabilities and carers. This will enable needs to be identified more quickly and the views of the person and the family to be heard

• Provide support groups for people who are mutual caring to make sure they get the practical and emotional support they need. 

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Resources, publications and videos

The Mutual Caring Project has produced a number of resources and publications for different audiences.

You can download them free of charge below. If you wish to order hard copies or make a bulk order for use by your service or agency, please contact our publications team.

How we can help

The Foundation can provide training and consultancy to organisations who want to enhance and improve their services to older people with learning disabilities and their families.

The Foundation is experienced in working with governmental organisations, third sector organisations, and user groups to take forward the personalisation agenda.

To discuss your training and consultancy needs please contact Molly Mattingly.

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