Countering hopelessness and frustration

Dementia now stands as the leading cause of death in England and Wales for the first time, overtaking heart disease, but what can be done to tackle this devastating condition and to improve the experiences of those living with it? A recent British Psychological Society report, Psychological Dimensions of Dementia: Putting the Person at the Centre of Care, highlights the areas where action is needed to improve both understanding and care. We spoke to one of its authors about the role psychologists can play in improving dementia care and why this report has come at a crucial time.

Figures released by the Office for National Statistics showed dementia was the cause of 61,000 deaths in 2015. This shift may be down to both an ageing population and better diagnosis by doctors – the condition is now also given more weight on death certificates, according to a BBC report. Although rates of dementia seem to be falling in some countries it still affects around 850,000 people in the UK as well as having huge implications for the families and friends of those affected.

The BPS report suggests that to help people live well with dementia we need a better understanding of its psychological impact. The BPS Dementia Advisory Group authored the report, which stressed that dementia affects a person's sense of identity, how they think and behave, their mood and their personality. Among their recommendations, the authors suggest those with dementia should be supported in making their own care decisions as far as possible, that their care and treatment should be tailored to individual needs and circumstances and that families and carers should be included in care planning at all times and have access to psychological support. The report also emphasises that a person's care should involve perspectives and inputs of practitioners from various disciplines.  

Professor Linda Clare, Chair of the Dementia Advisory Group, said psychologists have a key role in ensuring dementia care is as integrated and multidisciplinary as possible. 'One key skill that psychologists bring is that of formulation – drawing together all the information about an individual gained through an assessment, and using psychological theory to provide a framework for describing and understanding an individual's needs. This understanding is essential in developing a tailored care plan that can optimally support that individual and/or family, which would integrate the contribution of different disciplines.'

In our approach to supporting and caring for people living with dementia and their families, Clare said, we should listen to what they find helpful as well as assessing the research evidence about what is effective. She gave some examples of how this may look in practice: 'For people in the early stages, individual support with everyday activities to help maintain functional ability, using a rehabilitation approach, can help people remain independent for longer. For people with severe dementia living in residential homes, deploying care staff to spend short periods engaging people with dementia in personally meaningful activities instead of, say, completing paperwork, could reduce the incidence of behavioural problems.'

There is much stigma still attached to a diagnosis of dementia, leaving many sufferers feeling isolated; according to the 2012 World Alzheimer Report, the very idea that nothing can be done to help people with dementia often leads to hopelessness and frustration. Clare suggested that we should listen to and learn from people living with dementia. She said many with early-stage dementia do incredible work advocating for the types of support and services they find helpful. 'We need to extend this thinking to consider the needs of people with severe dementia. People with severe dementia are the last group in society whom we deem it acceptable, by virtue of their health condition, to place in institutions where, for some, there is a risk that they will experience woefully inadequate care.'

This report has come at a crucial time for both dementia care and research, as the condition is currently a priority among charities and policymakers. There has been a noticeable shift in focus in recent times towards developing effective drug treatments and improving the quality of care people receive. The development of the new Dementia Research Institute is under way and extra funding from the Alzheimer's Society, which will be launching an ambitious new strategy next year, has ensured that the Dementia Research Institute will cover care and public health as well as biomedical research.

Professor Clare concluded: 'This is an important opportunity to put the person with dementia at the centre of our work, which aims to understand more about the condition – its causes and mechanisms, its effect on cognition, and its impact on people's lives – and about what kinds of care, services, community initiatives and informal support make a difference.' 

- Photo: From the Dementia and Imagination Project.