The journal of memories that brought Leo's life story back from the shadows

TOM'S mother Kay was ill in hospital for five months before she died. When the physical illness struck, she'd already been showing early signs of dementia. Within a couple of weeks of being admitted with other serious problems, the dementia had become advanced. Little conversation was possible, she recognised few people and could only remember rudiments of the distant past.

John, Kay's devoted husband of 58 years, sat with her every day and noticed how little time hard-pressed staff spent with his wife. Not at all happy with this, he took advantage of an empty cork noticeboard in her room, and pinned on to it various photos – of the girl on a bicycle who'd first captivated him, a wedding portrait, the two of them playing with their children and so on.

What a difference those dozen happy photographs made to Kay and John, who recalls: "Every member of staff who came in the room would remark on them, ask me for stories and then make an effort to talk to my wife about them. She got more attention, more stimulation, and definitely perked up."

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It couldn't make a drastic difference to her overall physical condition, says Tom, but having more effort made by those around her to understand who she really was did affect how she was looked after generally and how she felt. She was no longer just a list of symptoms and another set of boxes they had to tick on a chart. "When conversations around her were about the old days and big family milestones, sometimes bits and pieces would come back to her and she'd join in. She seemed less 'lost.' It meant a lot to us as a family to see my mum responding to being treated as a person." John says he feels he did something very important by making others recognise Kay's history.

We know the power of storytelling in general, but it's too easy to read about the scenario above and say: "Of course, it stands to reason that any decent health worker should make an effort to understand who their patient is." But in thinly-stretched health and care services, the fact is that what seems so intuitively to be the right thing to do needs to be helped along with training and the right culture.

For anyone who might still doubt the immense therapeutic and social value of the telling of a life story, consider the tale of 90-year-old Leo Nichol of Mytholmroyd near Halifax, who was diagnosed with dementia two-and-a-half years ago.

Born in 1919 in Durham, Leo's family moved to South Yorkshire in pursuit of a job for his father in the pits. Leo also worked as a miner, at Edlington, Cadeby and Denaby collieries, then later as a crane driver at a foundry in Hebden Bridge. He met his wife Edith when she was a teenager working at a local fish and chip shop, and Leo offered to walk her home. Neither of them remembers how or where Leo proposed, but marry they did and they went on to have two children, grandchildren and great-grandchildren during 64 happy years together so far.

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"My dad has never been ill or near a hospital in his life, " says Leo and Edith's daughter June

Martin. "He's always been very active, and even went back to work again after he'd retired, until he was 80. He was an entertainer, the life and soul of the party who made everyone laugh."

June's husband Charlie adds: "Now he sometimes doesn't know us at all, saying 'Our lass' because he can't remember June's name. You see the odd smile, but he doesn't laugh, doesn't do anything socially and doesn't really like even family visiting because it makes him agitated. He wouldn't take to strangers at all."

As his condition deteriorated in those early months after diagnosis, Leo was adamant that he did not want to accept help, even services that might give Edith respite, such as day centre sessions. Being a carer can be highly stressful at times.

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Then Leo was introduced to Mark Crowther, a Support, Time and Recovery worker with South West Yorkshire Partnership NHS Foundation Trust. He works with people who have different kinds of mental health problems, including obsessive compulsive disorder and depression, and has found that in some cases discussing and documenting parts of their past can be highly beneficial.

"We tried this approach with Leo initially because he wouldn't accept anything else," says Mark. "It took a while to establish a rapport with him. He called me 'a codger' at one point, and couldn't understand why I was there. Gently but persistently asking Leo about his past started to bring out stories – about childhood, his mum, the war, the pit... he even told tales that Edith had never heard.

"Edith said there came a time when he started to look forward to me coming, which was a turning point. Every week I set them homework, things like finding old photos that might trigger memories. The idea isn't to tell a whole life story but to spot which of the stories seem to stir up the happiest feelings and delve a bit more into those for the Life History Journal we put together.

"Over three months, we collected all sorts of information, from pictures of Leo in wartime uniform, to funny stories about family members, notes and pictures created by grandchildren, newsy episodes relating to the local area and of course a family album." Mark worked on the journal on his computer, and the finished product

looks like a highly personalised magazine.

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Edith says she started to notice that working on the journal seemed to calm Leo down and make him more cheerful. As the folder became full of memories, she left it on the coffee table, a ready tool she could use at difficult moments or simply to pass some quiet, pleasurable time. "It's done a lot for us," says Edith. "Mark has been marvellous."

June and Charlie noticed a difference in Leo's mood, well-being and appetite which they attributed to the journal. After completing the project, Leo's condition was assessed according to the usual scale for dementia, and he was found to score 20 out of 30 compared to 10 out of 30 before working with Mark. This meant he now met the criteria for drugs to help his condition.

"The Life History work was done with Leo a couple of years ago now but he has maintained 17 points out of 30," says Suzanne Wightman, senior manager for practice development with the Trust. She and her team have used Leo's journal and Mark's experience along with other approaches in the development of a multimedia "tool kit"for staff across different services to learn best practice.

"If someone has done life history work while still living at home but they later move into residential care, then the Journal can go with them as a resource for staff to use as well as the client."

The use of life story work has sprung up around the world

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over the last decade, but often in an ad hoc way. Dame Joan Bakewell, the Government's spokesperson for older people, says such practice is plain common sense and an inexpensive way of improving the health and care services.

In this country, versions of life story work exist, but a co-ordinated approach is needed, which is why national charity

the Mental Health Foundation gave funding to the Trust to develop the toolkit, which will be rolled out nationally this summer.

As a sign of the growing interest in life story work and its benefits, more than 800 people from many different health-related disciplines chased the 250 places available at the country's first National Life Story Conference, to be held at the Royal Armouries in Leeds this Friday. Members of Suzanne Wightman's team are leading the way, and they have also been asked to share their ideas and practice with colleagues in Greece and Australia.

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"We've had a lot of enquiries, especially from care homes, where there's often a high turnover of staff who are young," says Wightman.

"It's largely about having more meaningful conversations, starting to drop the right questions into everyday conversation.

"This is about client care, but will also empower staff and give them greater job satisfaction."

www.lifestorynetwork.org