Living with dementia June 2009

This is your life

By Caroline Graty

Two people reading

Alzheimer's Society Ambassador Peter Ashley* is also Patron of the South West Yorkshire Mental Health Trust, where an initiative to capture the rich life stories of people with dementia is resulting in many positive changes. Peter was keen for others to be aware of the work, which is now being developed for use in other care settings.

Lynda Holroyd, an occupational therapist technical instructor at South West Yorkshire Mental Health NHS Trust, is passionate about the importance of people's personal stories.

'When individuals go into a care home, the staff are often unaware of their past. They can be seen just as a person with dementia rather than a person who has a life.'

Lynda is a member of the Life Story Network, a group of staff from different disciplines within the trust who are making sure that the person behind the illness is not forgotten.

The Life Story Network was created two years ago and is led by Suzanne Wightman, Senior Manager in practice development at the trust. Suzanne's idea of establishing a network evolved from the trust's collaborative project, which aims to improve person-centred approaches to the care of older people with mental health problems. Network members have developed different ways of helping people with dementia and their carers to remember and record events from their lives. They have found that life story work is a powerful way of improving people's quality of life and encouraging person-centred care.

Lynda works in the Kirklees care home liaison team, carrying out life story work with people with dementia in care homes and their relatives where possible. Sessions take place on a weekly basis and can run over a period of three to four months.

Talking points
For residents whose family are not involved in their lives, Lynda will research something the person has mentioned about their past. This might be anything from a former job as a clippie on the buses to a passion for motorbikes. At the next session, she will bring along photos on that topic to prompt further discussion and more memories. Lynda says,

Woman smiling

'It is a snowball effect. The amount of information that people start to remember after one or two sessions is amazing.'

Lynda works with the person to create one of three things; a life book containing images and stories about their life, a storyboard, which is a chronological sequence of pictures from the person's life with information about each picture, or a memory box, which contains photos and objects that spark people's memories. The materials help to provide a focus for care staff and family members to engage with the person with dementia.

Another member of the Life Story Network is Mark Crowther, who works in the community mental health team for older people in Halifax. He visits people with dementia in their own homes on a weekly basis, involving them in the creation of a journal about their life using desktop publishing software. The magazine-style pages contain stories told by the person and their family, photos and historical background information.

Making a difference
Among the many benefits of the life story work are improvements in people's well-being. Mark gives an example of a gentleman whose behaviour was making it difficult for his family to cope. Mark says,

'Over the weeks his mood began to lift. His family reported that he was less frustrated and eating more. After three months a mini mental state examination showed an improved score which meant that he could be prescribed anti-dementia drugs.'

Life story work can also improve people's self esteem and restore their sense of identity. Mark says,

'Everyone's life and every life story is so important. We help people to touch base with who they were. People tend to think that nobody is interested in their life. By listening to their stories and producing a journal, we show its value, and people are really proud of the end result.'

Alzheimer's Society Ambassador Peter Ashley has Lewy bodies dementia. He says,

'The life story work is terribly important. By talking to the person about their life you can engender back in them an understanding of their own life story. They start thinking about themselves again, and begin to remember things they've lost. People are getting back memories that they thought had disappeared, or their families thought had disappeared.'

Sharing good practice
The network is keen to share the good practice it has developed. It has run training sessions for staff in the trust, care homes and acute hospitals. It recently received a grant of £15,000 from the Mental Health Foundation to develop a multi-media toolkit for use in care homes and other settings. The toolkit, which will include a guidebook, DVD and templates, will be a valuable resource to those who want to put life story work into practice, and will be available from spring 2010.

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