Thousands of people with a learning disability who are caring for elderly relatives are being failed by the services designed to support them, says a new policy briefing by the Foundation for People with Learning Disabilities.
Referencing Mencap’s 2002 Housing Timebomb study, the Foundation’s report, Mutual Caring, estimates that up 29,000 people with a learning disability may live with an older family member over the age of 70.
The Mutual Caring Project was established to highlight 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 a learning disability (normally an adult son or daughter) has changed.
The report argues that some families in this situation “remain hidden” because they fall between services for those with a learning disability, older people and carers. Even when such families are identified, the different services do not always work effectively together to support them. Indeed, some families can receive little or no care, the report claims.
The problem can be exacerbated by the fact that many mutual caring families are reluctant to ask for help, except in times of crisis, for fear of being split up or because they want to avoid dependence on services.
The report claims that those with a learning disability who care for elderly parents often feel isolated and are less able to engage in social activities or make friends because they are concerned about leaving the parents they care for. They are, therefore, in particular need of better access to support from services, particularly for help with daily practical tasks around the home.
A range of resources for families, and copies of the Mutual Caring briefing, are available to download from the Foundation’s website: