Assessing improvements in dementia care and support

The Prime Minister's Challenge on Dementia and the 2009 National Dementia Strategy set out various commitments and actions on the prevention, diagnosis, referral, treatment and care of dementia. PIRU was asked to conduct a review to map data available and to summarise key research evidence on trends in dementia care in England since 2009.

The project was carried out by a team of researchers at LSE and LSHTM and was undertaken in association with the NIHR School for Social Care Research.

The review was to inform four key policy questions: 

• What improvements have been made in dementia care and support, for people with dementia and their (family and other unpaid) carers, since 2009? 

• What impact might these improvements have had on people with dementia and their carers, and (if evidence is available) on costs and cost-effectiveness? 

• What are the gaps and remaining obstacles to delivering against the commitments in the Prime Minister’s Challenge on Dementia? 

• What are the implications of all of the above, both for the priorities for action in the final year of the Prime Minister’s Challenge on Dementia and for the information needs to monitor future progress? 

The project involved a rapid synthesis of currently available data and research evidence, an analysis of data and evidence likely to be available in the near future, and identification of remaining gaps in knowledge. Looking forward, it also drew out the implications of the evidence and analyses for understanding what could be the key strategic issues and policy needs in the future, potentially feeding into and informing the development of a legacy to shape future responses to dementia from 2014 onwards.

While there has been an increase in the dementia diagnosis rate since 2009, many people with dementia are still not being diagnosed and there are geographical variations in diagnosis rate. There is a continuing need to improve the rate of diagnosis and referral to suitable services for post-diagnostic care and support. 

In terms of support, since 2009 there has been increasing evidence on the effectiveness of specific interventions, new models of integrated dementia care, and greater attention to end of life care. While the need for greater integration of services is widely recognised, there are no data on the number or quality of integrated care plans for people with dementia and little evidence on what works. 

Reductions in social care spending pose a challenge, and information is needed on the impact of spending reductions on people with dementia and their carers. There is a need to understand the relationships between levels of spending and the outcomes for people with dementia and their carers. 

Many more elderly people admitted to acute hospitals are being routinely screened and, when necessary, referred on for diagnostic investigation for dementia. However, many admissions might be avoided with better support in their own homes. There have been improvements in awareness of the needs of people with dementia in inpatient settings, but further improvements can be made. 

While there has been considerable progress in health and social care staff training, the proportion of social care staff trained in dementia care remains low. 

There is a need for better data on care homes to shed light on treatment and care arrangements, care quality and variations across the country.