As dementia diagnoses increase, family caregiving should not be taken for granted

It was reported this week that the Royal College of General Practitioners has raised fresh concerns about the level of support people with dementia and their carers receive from the NHS and social services.

The College says that in some places, services are collapsing under the pressure of increasing diagnoses. Meanwhile, Health Secretary Jeremy Hunt has said that families and fellow citizens should play a bigger role in caring for the growing number of elderly people in the UK. But as the Alzheimer’s Society rightly notes, family and friends ‘must not be relied on to do everything’.

This fresh concern over dementia support, based on the results of an Alzheimer’s Society survey of more than 1,000 family doctors, reflects trends in population ageing that are leading to extra demands on health and caring services. In the UK, the number of people living with dementia is expected to rise to 1 million by 2021.

At the same time, there has been greater political emphasis on patient choice and the provision of care in the home. This combination is increasing the demand for both formal support and informal care at home, and individuals in work are increasingly being called upon to care for sick, disabled and elderly relatives.

Whether family and friends will be willing and able to fill the gaps in formal care systems is difficult to predict. The pensions crisis associated with demographic ageing means that working lives are being extended. The time we have available to provide informal care is therefore being constrained, while pressure to combine care and work is increasing.

In this context, willingness to supply care and support for an elderly relative with dementia should not be taken for granted. In such cases, decisions about who should supply care, whether or not to provide care, and how much care to provide are influenced by people’s estimations of the likely costs they will incur, as well as the benefits to the person in need of care. These costs result from income losses, ill health and increased stress, and are often ignored by policy makers.

It has been demonstrated that people in full-time employment and higher earners are less willing to take on intensive caring responsibilities. And for those who do, time spent providing care reduces time in paid work, leading to implications for household division of labour and future earnings prospects for the individual.

Carers as a group have also been found to suffer disproportionately from ill health and lower levels of wellbeing, with more intensive caregivers and those caring for close family members particularly badly affected. One reason for this may be the loss of autonomy and choice that an intensive caring role imposes, with studies showing that a lack of choice is associated with greater emotional stress, physical strain, and negative health effects. Very few people who provide care because they feel a sense of expectation report positive feelings around their experience.

In the UK, 2011 census figures suggest that more than 6.5 million people – just over 10% of the population – are involved in informal, unpaid care of an adult or disabled child. The number of people in employment who provide care is already estimated at close to 3 million, but this figure will rise as the population ages, working lives are extended, and gaps emerge in the provision of formal care for elderly people.

An implicit strategy of increasing reliance on family and friends to provide care and support for people with dementia at least needs to acknowledge the costs such a strategy imposes on caregivers. While family caregiving is undoubtedly undertaken out of love and a sense of responsibility, usually with no expectation of monetary reward, this does not mean people will always be willing or able to provide the level of care and support required.

Although there is no current strategy to deal with these difficulties, engagement with local support groups and fostering a sense of community may help – at least in some small way – to address issues around lack of autonomy and social exclusion, improving the coping strategies and wellbeing of both dementia sufferers and their carers.

Professor Fiona Carmichael
Professor of Labour Economics, University of Birmingham