The carers of people with dementia
Authors: Rob Butler
Journal: BMJ (2008)

Carers of people with dementia have a hard time; not only do they have to contend with the illness but they also receive limited support and poor services. A recent UK parliamentary committee report criticised the whole range of dementia care.1 It highlighted poor diagnosis (only a third of people with dementia receive a formal diagnosis), fragmented home support, untrained staff in care homes, and a failure to recognise or manage dementia in general hospitals. This leaves difficult decisions for those redesigning services. Who will offer long term support? What will be the role of the voluntary sector? In the accompanying paper, Charlesworth and colleagues tackle these questions in a randomised controlled trial of a scheme for befriending carers of people with dementia.2

Carers have high rates of anxiety, stress, and burnout. Their life expectancy is reduced, and up to a third of carers of people with dementia are depressed.3 4 During the course of dementia, the stresses for carers change. Across Europe, fewer than a quarter of carers say that services are sufficient to meet their needs.5

Care of dementia in the United Kingdom costs more than £17bn (€22bn; $34bn) a year. Breakdown in support from carers is a major cause of people moving into care homes, and accommodation accounts for more than 40% of the total financial cost of dementia.6 Carers already save UK tax payers £6bn a year so they are vital for keeping down spiralling costs. Carers face considerable financial costs themselves because many have to give up work or reduce their hours.6 By supporting carers we may be able help people with dementia to stay living at home for longer and free up money to spend on other parts of the service.

So how can we support carers? A range of support has been evaluated, including telephone information, education, mutual support, cognitive behavioural therapy, problem solving, and case management.7 One randomised controlled trial in carers of people with dementia found that six counselling sessions, group support, and the availability of telephone counselling reduced the rate of placement in a nursing home by 28%.8 However, overall, interventions aimed at supporting or providing information to carers of people with dementia have produced disappointing results, and high quality trials are sparse. Research into dementia is under-represented and accounts for only a 20th of the number of research papers on cancer.6

Charlesworth and colleagues tested access to befriending schemes as support for family carers of people with dementia.2 The befriending schemes were run by local voluntary bodies. The study found no significant difference in mood or quality of life at 15 months’ follow-up between carers who had access to a befriender compared with those who did not. However, only half of those offered befriending used the service, and only a third completed six months of befriending. Those who used the service tended to have little existing contact with family or friends.

What are the implications of these results? At face value they might suggest that resources should not be used to fund access to befriending. However, befriending is a personal activity that works well for some carers at certain times. The trial shows that this is important because most of the carers who completed six months of befriending were still in contact with the befrienders one year after the start of the trial. Existing supports and the quality of services may influence the effects of befriending.

So, how can we provide carers with high quality services? Several randomised controlled trials have shown better models of care. In the United States, providing a senior nurse to coordinate services—such as treatment and education—in primary care reduced distress in people with dementia and improved depression in carers.9 Another trial in the US found that a disease management programme led by care managers improved quality of life for the person with dementia.10 In the Netherlands, a detailed clinic based assessment by doctors, nurses, and other professionals which was sent to primary care also improved quality of life for people with dementia.11 The UK government has launched the first national dementia strategy, which should be published at the end of this year.12 Its priorities are improved awareness, early diagnosis and intervention, and better quality of care for dementia.

The UK parliamentary committee made several recommendations to improve the care of dementia.1 One of these is to offer everyone with dementia and their carer a single health or social care professional contact point. Although this will require extra resources, the reasons to implement a fully funded strategy are compelling.