Mutual Caring: Supporting older families who are looking after each other
What is Mutual Caring?
More people are living longer than ever before, including people with learning disabilities. An increasing number of people with learning disabilities are still living at home with family carers who are aged 70 or older. Those carers may be parents, siblings, grandparents, or other close relatives or friends. They have often spent a lifetime caring.
Over the years, as family carers start needing more support themselves, the families develop routines and ways of coping that mean that both the older person and the person with learning disabilities are looking after each other. This is known as mutual caring.
A growing number of people with learning disabilities are providing regular and substantial care for their ageing relatives.
This includes:
- Help with personal care
- Medication
- Cooking and cleaning
- Shopping
- Providing companionship (especially when housebound)
Often, without each other's support, neither person would be able to remain living independently within their local community.
Mutual caring amongst older families is increasing but often remains hidden.
Some of 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
- Not being recognised for their role as a carer
- Not being offered many choices about how support is provided or continuing to care
- Fear of being separated if workers discover the extent of the mutual caring that is happening
- Lack of information that is accessible and easy to understand about e.g. rights as a carer, available support health conditions of their elderly relative
- Lack of practical support that could make a big difference e.g. with shopping, getting to appointments, benefit advice
- Isolation and reduced opportunities for friendship and breaks from caring
These are issues for many carers but are often more of a struggle for a person has learning disabilities.
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.
Aims of the project:
- To develop and promote 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 to a sample of Local Authorities to build up evidence of how to develop a coordinated response to support people who are providing mutual care
- To champion innovation and good practice in relation to mutual caring
- To disseminate good practice and lessons learned from the development work
Key Points and Recommendations
There needs to be:
- National data collection to measure the level of mutual caring
- Greater awareness amongst workers about mutual caring
- Appropriate questions in assessments for carers and for people with learning disabilities to identify situations of mutual caring
- Training across a wide range of services with a particular focus on frontline staff e.g. GP receptionists and learning disability day centre workers
- Joined up working between learning disability and older people’s services to make sure information is shared and support services address the interdependent needs of the family carer and the person with a learning disability (this may require new protocols)
- Development of the capacity of local carers' services to respond to the needs of this group of people
- Access to person centred planning support that involves all family members who can usefully contribute including older family carers and siblings
- Partnership working between Learning Disability Partnership Boards, mainstream older people’s strategy and carers’ programmes e.g. use of the Carers Grant to benefit mutual carers Accessible information for families about mutual caring
- Carers’ assessments carried out with both the family carer and the carer with learning disabilities leading to practical, joined up outcomes, including robust emergency plans
- Care packages and personal budgets that reflect the changing nature of the caring relationship and take into account the needs and preferences of both family members
- Promotion of Circles of Support as a way of involving more people in a family's network
- Improved advocacy for older people and people with learning disabilities providing mutual care
- Support groups for people with learning disabilities who are caring to make sure they get the practical and emotional support they need
How we can help
How the Foundation can help:
- Provide training to raise awareness and understanding amongst workers in a variety of organisations who may be in contact with people are who providing mutual care
- Provide strategic support to build partnership working across departments and organisations to better support older families and respond to issues of mutual caring
- Provide development work around person centred planning and emergency planning for older families
More Information
To discuss any of the above or other training or consultancy needs please email Molly Mattingly: mmattingly@fpld.org.uk
Molly has supported young people and adults with learning disabilities for over 30 years. She is experienced in consultancy, developing partnership contracts and tenders, training, research and service transitions. Furthermore, Molly holds a MEd.