Care and support of people growing older with learning disabilities

Why this is important

There is no evidence from studies published later than 2005 about the effectiveness and cost effectiveness of care and support models for people growing older with learning disabilities living in the family home, or about their experiences of that support. For example, we did not identify any evidence on the effectiveness and cost effectiveness of assistive technology for supporting older people with learning disabilities and their ageing family carers.

Comparative studies are needed to evaluate the costs and impact of different approaches, like assistive technology, on care and support for older people with learning disabilities in the family home. Resource use information, demonstrating the impact on paid and unpaid care (whether it increases or decreases as a result of the different support models) is needed as well as outcome data relating to families and carers. These should be supplemented by qualitative studies to explore the views and experiences of older people with learning disabilities, including those from minority backgrounds, and their families and carers, in relation to different models of support.

Why this is important

Apart from studies on annual health checks, we did not find any evidence about different methods and pathways for identifying health conditions among people growing older with learning disabilities. There is a need for effectiveness and cost-effectiveness studies using longitudinal, comparative designs to evaluate the costs and outcomes, in particular the final health outcomes, of different approaches to identifying health conditions in people with learning disabilities. These should be complemented by qualitative studies to explore the views and experiences of people with learning disabilities, including those from minority backgrounds, and their families, carers and practitioners, on the facilitators and barriers of these approaches. This includes their views on how, where and by whom these services should be provided.

Why this is important

Evidence suggests that people growing older with learning disabilities value the medical knowledge and authority of health professionals. There is a small amount of evidence that practitioners could play a greater role in providing education and advice to support self-management of health conditions in people with learning disabilities. There is also evidence that families and carers play a central role in supporting and advising people with learning disabilities about their health conditions and promoting healthier lifestyle choices.

There is currently a lack of information about the cost effectiveness of such education programmes. However, there is evidence that people with learning disabilities are more likely to have missed appointments with health professionals, do not have optimal medication management and have problems to access to healthcare more broadly, all of which can have costly consequences; some of those might be avoided or reduced through self-management.

Comparative effectiveness and cost-effectiveness studies are needed to evaluate the impact of education programmes to support self-management for people with learning disabilities. These need to be supplemented with studies exploring the views and experiences of people with learning disabilities, including those from minority backgrounds, and their families, carers and practitioners, on the accessibility and acceptability of different approaches to supporting self-management and communicating health messages.

Why this is important

No evidence was found from studies published later than 2005 about the effectiveness and cost effectiveness of interventions or training programmes for family members and carers of people growing older with learning disabilities who have, or are at risk of developing dementia. There is some evidence that some family members and carers of people with learning disabilities and dementia need specialist training in dementia care.

Comparative effectiveness and cost-effectiveness studies are needed to evaluate the impact of specific interventions or training programmes for families and carers of people with learning disabilities, including for people living with conditions such as dementia. Qualitative studies are needed to explore the views and experiences of family, friends and carers of people with learning disabilities, including those from minority backgrounds, about these training programmes.

Why this is important

We identified no studies evaluating the effectiveness or cost effectiveness of advance care planning for end of life care in people growing older with learning disabilities, and their family members and carers. Such studies would help to determine how and what reasonable adjustments should be made to ensure that people with learning disabilities receive appropriate care at the end of life, and the costs and cost consequences associated with those. Longitudinal studies should have a naturalistic design with a control group to follow up families and carers who have used advance care planning for end of life care in people with learning disabilities.