Better dementia care to enable people to live as well as possible

Supporting people to live independently with dementia

Linda Clare, Professor of Clinical Psychology of Ageing and Dementia at the University of Exeter, said: “Most people with dementia are still living in their own homes, supported by friends and families. A major challenge is to support them to live as well as possible with dementia. That should be possible, but we need the right context, support and understanding.”

Professor Clare leads the IDEAL programme, which has been designated as an Alzheimer’s Society Centre of Excellence. At the heart of the study is a large cohort of people with dementia and their carers, who are followed up every year for six years. Professor Clare said: “We’re aiming to get a comprehensive picture of what enables people to ‘live well’ with this long-term condition and resulting disability as it develops over time.”  

Cognitive rehabilitation in action

One way to encourage living well is through personalised interventions to support people to manage and carry out daily activities. In the GREAT trial, Professor Clare’s team use evidence-based cognitive rehabilitation strategies. Professor Clare explained: “We work with people to identify individual goals, and help achieve these, so that people can manage their daily lives better. We tested this approach in a large randomised controlled trial and we’re now training health and social care practitioners to use it.”

The team is now working on the forthcoming SHAPE trial on self-management and health promotion. The programme will be aimed at people with mild-to-moderate dementia, who can benefit greatly from sharing experiences and ideas with others in the same situation, and learning new ways of managing the condition.

Improving quality of life in nursing homes

Around 30 per cent of people with Dementia in the US, the UK and Canada live in nursing homes. These residents often have multiple health needs, and meeting these can be challenging. Care home staff often have limited training, yet a high standard of care is essential to maintain a good quality of life for people with dementia residing in care home settings. Only a fraction of nursing home training programmes are currently evidence-based.

One issue in care is the use of harmful antipsychotics to treat symptoms, resulting in increased mortality rates, strokes and falls. Our early programmes to reduce prescribing in care homes had huge success in halving antipsychotic use.

This research has evolved into an enriched programme called Improving Wellbeing and Health for People with Dementia (WHELD), which includes training staff to engage in person-centred care. The approach focuses on valuing residents as individuals and putting people at the centre of their own care. It includes tailored exercise and social interaction based around their interests. 

Clinical trials showed that WHELD reduced antipsychotic use, but with the enriched features also reduced psychiatric symptoms, and improved quality of life for residents.

Now, the programme has been adapted to meet the needs of the nursing home sector amid the COVID-19 pandemic, with a new online hub iWHELD allowing for training and peer-to-peer support between nursing homes. WHELD programme lead Joanne McDermid said: It’s an incredibly challenging time in care homes and many people are feeling very fearful and isolated. iWHELD meets an urgent need to support staff to provide the best possible care for people living with dementia.”

"The care that people receive is the main driver for their quality of life, particularly in the context of moderate or more severe dementia. Our programmes are aimed at supporting carers and care homes in delivering the personalised care, activities and interaction that makes people’s lives better."

Professor Clive Ballard,
Professor of Age-Related Diseases and Pro-Vice Chancellor, University of Exeter Faculty of Health and Life Sciences