We’ve all got life stories. Where we grew up, where we worked, our families and our hobbies. These details define us and tell people who we are. For people with dementia, that narrative ‘colour’ is often lost – and as the condition takes its toll, it is easy for people with a cognitive decline to become defined by their illness.
Life story work is a therapeutic activity which aims to redress that balance. It gathers a person’s photographs, mementos and information about their interests in a book or a collage to ensure precious moments are preserved, discussed and treasured. Many homes and health and social care services now use life story work as part of their care.
But research by our social policy experts – the first of its type carried out in the UK – has highlighted major variations in the way life stories are gathered and used. They also found that while the process has the potential to help people with dementia, some of the most important benefits might be for the care home and health service staff who help to pull the stories together.
“We think it helps staff to see the person behind the illness,” says Kate Gridley, Research Fellow in our Social Policy Research Unit who led the study.
“Staff can make a connection and it brings it home that this person could be like their mom or their dad. Or they might find out they share interests. Without that ‘hook’, it could be difficult to communicate in a meaningful way.”
Wedding photographs, children’s certificates and holiday postcards could all be part of a life story, sometimes with comments or explanations written by carers or relatives. Sometimes, these glimpses into the past can explain some types of behaviour, helping staff to improve the way they care for people.
“A member of staff told us about a man who would often lie under the table – it was difficult to persuade him to come out. But he’d worked as a mechanic most of his life – for him being under the table was like working under a car. Once the staff understood this, they would tell him it was time for a tea break – and he’d reappear.”
With the help of life stories, staff also uncovered hidden talents, or reasons for regular peaks of anxiety in some people’s days – for instance, a woman who, at half-past three, wanted to be at the school gate, even though her children had grown up and left school long ago.
But while it has the potential to do good, Kate says the research also highlighted potential pitfalls.
“The risk is that the process reminds people of parts of their life they would rather forget – places where they were unhappy or relationships that were difficult,” said Kate. “And sometimes the reality uncovered in the life story ‘jars’ with the reality that the person with dementia believes.
“One woman became upset when we got to the section in her life story book that said she was living in a care home, when she thought she was living somewhere else, and that made her anxious. Life stories have to be used carefully.”
The research project included a national survey of family carers and dementia service providers, plus research in six care homes and four hospital wards. It showed that life story work has the potential to improve care for people with dementia at relatively little cost.
The research also identified nine key features of good practice which have been shared with health and social care staff across England. These include respecting the person’s wishes about what goes into their life story and who will see it. But the researchers concluded that further research is required to assess the cost-effectiveness of life story work in dementia care.
Kate said: “In our study, life story work appeared to improve staff attitudes towards the people they were looking after as well as quality of life for some of the participants with dementia – but further research is needed to know whether it was actually life story work that made the difference and, if so, how we can capitalise on this to possibly reshape the way health and social care services care for people with dementia.”