Enabling dementia research in care homes

Almost 500,000 people live in care-homes across the UK, and an estimated 343,000 of them have dementia.

Behavioural and psychological symptoms in dementia (BPSD) are common particularly in the later stages and are a major challenge for care homes. These symptoms are associated with declines in functioning, low quality of life, harmful drug treatment, increased costs and mortality. There is very little research on this, and so little evidence for management strategies.

After demonstrating the harmful and even fatal effects of antipsychotic use for behavioural and psychological symptoms in dementia which led to new guidelines, we built a platform for high quality research into treatment and care to improve the lives of people with dementia living in care-homes. It is called the Care Home Research Network (CHRN).

The Care Home Research Network has recruited 1500 people to over 15 studies, including drug and person-centred care intervention studies.

Developing person-centred approaches in care homes

In collaboration with patients and care-home staff, we developed a low-intensity and cost-effective person-centred care and psychosocial intervention, ‘Well-being and Health for people with Dementia’ (WHELD), to improve quality of life and reduce behavioural and psychological symptoms of dementia in care-homes. We recruited 847 patients from 69 care-homes, the largest study world-wide.

The intervention improved quality of life, reduced agitation, depression and anxiety, reduced costs, prescription of antipsychotics, and led to more frequent positive care interactions. We developed and are currently testing a fully digital, pandemic-safe and cost-efficient version, eWHELD in 161 care-homes and also developed an intervention to improve pain management, often linked to behavioural and psychological symptoms of dementia.

Harnessing the network to assess new ways of working

In collaboration with industry, we recruited 181 patients for a drug trial for Alzheimer’s disease and psychosis from our local Care Home Research Network.

We are conducting the NightCap trial, to improve sleep behaviour, developed with care-home staff and our dementia-specific carer-group as well as early studies of cannabinoid medications for agitation and psychosis in people with dementia.

Together, we believe our research will lead to new interventions that improve the lives of people with dementia and reduce the burden for care-home staff. CHRN also disseminates findings and translates research into practice to help care-homes achieve outstanding ratings from the Heritage Care Centre Quality Commission.



Developing Resources for Research |  Involving Patients in Research | Industry Collaboration | Improving Access and Uptake | Personalising Treatment to Patients