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.

Issues for people with learning disabilities who are carers:

  • 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.