Life stories in dementia care: we all have a story and cannot be understood without it

In Jonas Jonasson’s book The Hundred-Year-Old Man Who Climbed Out of the Window and Disappeared, the protagonist faces scepticism when he recounts the tale of his daring escape across the Himalayas. “You crossed the Himalayas? At a hundred?” exclaims the prosecutor. “No, don’t be silly,” responds Allan. “You see, Mr Prosecutor, I haven’t always been a hundred years old. No, that’s recent.” 

Jonasson uses the life story of the 100-year-old man as a vehicle to tell a story about 20th-century history, but I read this novel while immersed in a research project looking at the use of life story work in dementia care. For me the message was clear: we all have a story, and no one can be understood by how they appear today out of the context of that story.

Life story work typically involves helping people to make a record of some aspects of their life, most often in a book or template, although more creative approaches do exist, including the use of IT and stop frame animation. Increasingly, life story work is being promoted as an important tool for enhancing person-centred dementia care. However, when it comes to specifics, there is little agreement.

A care home may ask a resident’s family to write a summary of their life using a list of prompts, while a community team works with an individual to make a collage about their life, and both could call it life story work. Perhaps the most important distinction is that when some people talk about life story work they mean an activity that is led by the person with dementia, to celebrate and preserve memories. Others mean a process led by professionals with the aim of aiding communication and increasing staff understanding.

Not everyone wants to be reminded of their past, and different people may come up with alternative accounts of the same person’s history. Life story work has many complexities, and when you add dementia into the mix things can get tricky. However, enthusiasm for life story work is high and claims for its positive effects are increasing.

To explore these claims, the Social Policy Research Unit at the University of York conducted research into the potential costs and outcomes of life story work in dementia care. This is not easy when there is such variation in practice. We collected information from six care homes that were all introducing life story work for the first time. Even with the same training, each care home did it differently.

When we asked people with dementia, family carers and professionals about good practice, the first thing that struck us was that, despite the hype, not everyone wants to make a life story. They may also have different views from staff about what their life story book/film/collage is for. It was felt that beginning the process early could enable people with dementia to take a more active role and communicate how they would like their story to be used. If staff were involved, one suggestion was that they could try making a life story document of their own to see how this feels and what issues arise.

Improving the quality of care and making it more person-centred often has associated costs. The greatest cost to the care homes introducing life story work was staff training, ranging from £950 to almost £1,600. After this initial outlay, however, the average cost of actually creating and using a life story book was relatively small: we estimated around £37 per resident over 16 weeks. Of course, costs will vary with different approaches.

The most significant effect we detected was an improvement in staff attitudes towards people with dementia in care home that introduced life story work, together with a hint that residents themselves felt better. However, the work was intentionally exploratory and to understand the full implications we recommend reading the final report, which will be published later this year and will be available through the SPRU website.

The key message from the people we spoke to was that whether life story work enhances dementia care depends to a large extent on what the people involved want to get out of it. If it’s intended to improve understanding in care settings, staff need the time and opportunity to use the information. If it’s about celebrating life and preserving identity, people with dementia need support and opportunities to do this their own way.

This article presents independent research funded by the National Institute for Health Research. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.