The urgent need to tackle dementia care in the UK
Dementia is common, devastating, and currently incurable; but research is contributing to greater understanding and better treatment and support.
As we defeat and treat other illnesses, more and more of us are living into a time of life when we may get dementia. In Britain today, dementia is the third most common cause of death. Most of those with dementia live between 2 and 8 years following diagnosis, and need increasing support during this time with virtually all aspects of life. The Alzheimer’s Society estimates the cost of care for people with dementia in the UK in 2012 alone to be over £23 billion (cf total health expenditure of £124 billion). As people live longer, the numbers with dementia are set to increase to about 1 million by 2021.
Dementia research receives just one tenth of the funding that goes into cancer research. In this context, the additional £40m pledged by the Prime Minister is welcome, since, when research is well funded, advances can and will be made, both in fundamental understanding that can lead to a cure in the longer term, and in ways of supporting people and their families to live with dementia now.
Whilst the causes of dementia are still not fully understood, there is considerable ongoing research. In Birmingham for example, Dr Sarah Aldred and colleagues in the School of Sport and Exercise Sciences, are looking at the mechanisms associated with oxidative stress that may play a part in causing dementia.
In the meantime, our responsibility is to support those living with dementia to live well. Research interviews conducted by myself and colleagues from the School of Psychology concentrated on women with dementia. The study suggests that the stigma of the disease can lead to loneliness, and that maintaining relationships with others enables continuing life satisfaction and fulfilment. Thus the push for greater awareness and dementia friendly communities has the potential to make a difference.
Day-to-day support for most people with dementia is provided by spouses and adult-children, especially daughters. This can be tiring and stressful. Without support for carers, care in the community may break down, and the person with dementia then moves into care, which costs around £1000 per week. Surprisingly simple interventions delay such moves and reduce the odds of institutionalisation. The support and intervention that carers receive, from organisations like the Alzheimer’s Society and Health and Social Services, are in jeopardy due to budget savings, yet research demonstrates that they are not only effective but also efficient.
Many people with dementia spend a part of their lives in nursing home care, or are admitted to general hospitals for treatment of concurrent illness. Dementia care in these settings is often poor and instances of abusive treatment surface on a regular basis. The draft report of the commission for improving dignity in care suggests we should select staff with compassionate values. Psychological research at Birmingham supports this notion, but also suggests that the belief one has that they can make a difference, and systemic factors like good teamwork, also play key roles in maintaining the morale of staff.
Those who work with devalued groups are in turn devalued. Dementia care and research suffer from the negative attitudes of modern society to old age and disability. If the Prime Minister’s high profile speech signals a sea change that will lead to greater value being placed on the lives of people with dementia, and therefore also on research into care now and cure in future, then this is to be welcomed.
Dr Jan R Oyebode, BA (hons), M Psychol (Clinical), PhD
Director, Clinical Psychology Doctorate, University of Birmingham