London School of Hygiene & Tropical Medicine

As the number of people with dementia continues to rise and now stands at 670,000 in England, health and social care services are under increasing pressure to look after them in the best way possible.

Led by the London School of Hygiene & Tropical Medicine, alongside the Alzheimer’s Society, London School of Economics and NHS clinicians, researchers will work with people with dementia to find out how their quality of life and that of their carers is affected.
The £1million study, which is being funded by the Department of Health, will address two of the government’s priorities for dementia care: memory clinics for timely diagnosis of dementia and the impact on patients’ quality of life of stopping their use of anti-psychotic drugs.

GPs are encouraged to routinely refer people with suspected dementia to memory clinics for a thorough assessment and diagnosis but there is no agreed approach. The study will look at the costs and benefits of different approaches which at present are unknown.

Anti-psychotic drugs are frequently used to treat people with severe dementia who are aggressive or distressed. However, these drugs can cause serious harm and it is clear that many people are receiving them inappropriately. This project will look at the impact of stopping the use of this medication on patients’ quality of life.

The research team will measure the quality of life of people with dementia through interviews by trained staff with the person with dementia and by asking their lay carer (e.g. a relative) or an advocate recruited for this purpose to complete a questionnaire. They will also ask carers about their own state of health and quality of life. It is hoped that this new approach to routinely measuring quality of life will contribute to the development of an indicator for use in the NHS Outcomes Framework and Adult Social Care Outcomes Framework.

Data will be collected from 1,600 patients at 80 Memory Assessment Services (known as memory clinics) across England and 400 patients in around 20 residential care homes.

Lead Researcher Dr Sarah Smith, from the London School of Hygiene & Tropical Medicine, said: “Dementia is an increasingly urgent challenge as more people experience it either themselves or through a family member. It also represents an enormous challenge for health and social care services”.

“As new treatments and ways of caring are introduced, we need to ask people with dementia and their carers to tell us about the impact on their quality of life. We also need to be able to provide information to the public, to providers such as GPs and hospitals, and to those who commission services about the effectiveness of different approaches.”

Dr Doug Brown, Director of Research and Development at Alzheimer's Society, said: "Too often people with dementia are inappropriately prescribed antipsychotic drugs which double the risk of death and treble the risk of stroke. Reducing their use is a key priority for Alzheimer’s Society and we are pleased to be a partner in this study. It’s not just about stopping the prescription of these drugs. We also need to ensure people are supported to live well afterwards. By working with people affected by the condition themselves this study will provide valuable information in the fight against dementia. One in three people over the age of 65 will develop dementia so it is essential that we continue to support studies like this that aim to improve the quality of lives of those affected by the condition."