UCL Dementia


Caring for carers

A simple intervention, delivered by psychology graduates, can improve the quality of life of people caring for dementia patients.

Two-thirds of people with dementia live at home, so the bulk of the caring burden falls on family members. Without such carers, the economic impact of dementia would be even higher than the current £23bn a year, but this saving has its own health impact: some 40 per cent of family carers suffer from clinical anxiety or depression. To help such individuals, Professor Gill Livingston and colleagues have adapted a US programme designed to boost carers' coping skills - and a recent randomised controlled trial confirmed it is both effective and cost-effective. 

With Dr Claudia Cooper, Professor Livingston led a programme that uncovered alarmingly high levels of abuse of people with dementia by carers. Most cases reflected the inability of family members to cope with the challenges of caring. The findings led her to consider what could be done to help carers, and by extension the people they were caring for. 

People's coping strategies vary. Some approaches may offer short-term relief but store up long-term problems. Encouraging more positive coping strategies may therefore better prepare carers for the challenges they will inevitably face. 

In the USA, the 'Coping with Caring' programme, a manual-based group intervention, has been shown to reduce depression in carers. However, the use of groups and need for trained clinical psychologists would make it difficult to implement widely in the UK. Professor Livingston therefore modified the programme so it could be delivered to individuals by graduates (under supervision). 

The 'START' programme is based on sound cognitive psychological principles. It helps carers accept that patients will show difficult behaviours, which they will not be able to influence, and encourages them to look for things to enjoy, even small moments like shared cups of tea, and to find ways to do more of them. 

A trial of 260 carers found that the START programme significantly reduced anxiety and depression, and improved carers' quality of life. There were also hints of a fall in levels of abuse, something that will be examined further in follow up. Notably, the intervention had both preventive effects and therapeutic benefits for those already depressed. Health economic analyses suggested it is also cost-effective. This is the first evidence that a cost-effective psychosocial intervention can benefit carers of dementia patients. Professor Livingston is helping to implement the programme locally, and encouraging its take up more widely.