Research

“It made me see him in a different light.”

The use of life story work with older people who have dementia in health and social care practice

One of the members of the group who have developed this website undertook a piece of research into the use of Life Story Work for her PhD.  This page offers a summary of how the research was undertaken and the findings.  For more detailed or specific information please contact Jane McKeown at jane.mckeown@shsc.nhs.uk

Background:  Life story work (LSW) is used within health and social care and has the potential to provide people with: the opportunity to talk about their life experiences; record relevant aspects of individuals’ lives in some way; and in doing so use this life story to benefit them in their present situation.  There is not a lot of research to support LSW use with people with dementia and most work focuses on the perspectives of care staff rather than those of the person with dementia or family carers.

Aims: This study examined the process of undertaking LSW in health and social care; explored the impact of using LSW on the delivery and outcomes of care for older people with dementia; and investigated the experience of using LSW with people with dementia from the perspective of care staff, persons with dementia and family carers.

Methodology and Methods: After gaining ethical approval, four in-depth case studies involving twenty participants were undertaken.  A constructivist approach was taken which aimed to seek the views of everyone concerned and encourage them to participate fully in the research.  The study took place within a mental health and social care NHS Trust.  Process consent was taken to recruitment, consent and ongoing involvement; this involved checking out with the person with dementia on each occasion whether they wanted to participate and involved talking with them as well as observing non-verbal communication.  Data were gathered using in-depth semi-structured interviews, formal and informal discussion, observation and a research diary.  Data analysis was guided by a Framework Approach which employed an evolving theoretical framework to interrogate the data.

Findings: The findings can be summarised in four main themes.  Some direct quotations from participants are used to explain the meaning of the themes.

 Theme One

Detailing the factors that helped and hindered the use of life story work in health and social care practice

Finding time to spend with the person with dementia to talk about their life was seen as a challenge, but was overcome in all the case studies.

“Making time because I think it was an issue …because I was the only one that was able to collect the information because … there were no staff around or … other things sort of took a bit of priority.”

The culture of the ward environment was important and life story work was more of a challenge when there was a focus on ‘tasks’ and ‘getting the work done’, compared to environments where ‘person-centred care’ was well established.

Staff were more likely to fully engage in life story work when they were naturally interested in other people and if they believed that the person who had dementia was still able to interact and respond to care.

Experience of previously undertaking life story work helped life story work to proceed more quickly.  Staff using life story work for the first time were sometimes worried about ‘getting it right’.

“You try and give us as much information as you can as to what you want … but actually getting going with something like that is quite difficult … it’s one of those things you look at as quite a big thing and where do I start? and who do I ask? where do I go to find out this information? and I think once you get going it’s kind of easy and you find your way and you find your paths.”

Education of the use of life story work and in some case prompts and checklists helped staff to get started.

For life story work to be implemented there needs to be support from management, a person to ‘facilitate’ getting life story work into practice.  A support worker describes how important the ward manager can be in supporting the use of life story work:

“I think it all depends on the ward manager and …we did it before on that same ward but then it changed … I think it’s just the ward manager a different views and what they’re wanting.”

 Theme Two

An understanding of the PROCESS of using life story work and the PRODUCT of life story work

The PROCESS of undertaking life story work provided individual staff with opportunities to interact on a one-to-one basis with a person with dementia.  Theme Three explores many of the benefits of this interaction but in addition there was an opportunity for staff members to make valued connections with and also learn from the person with dementia.

Here a staff nurse described what she learned through the process of LSW.

“It’s been really interesting just to finding out ….there’s things I never knew about during the war and just information you just think ‘Oh I never knew that’ just general information … like working in the electrical shop, I never knew that TV remote controls were attached to the TV I never knew that … and telling me about his wages … I just never realised how little they were compared to nowadays just things like that so I got quite a lot from that.”

The process of undertaking life story work enabled the assumptions of care staff about the person with dementia to be challenged as is reflected by an experienced and skilled nurse:

“And I think as well we’re all, well I’m certainly a victim of prejudice, I think you work for a long time with people with dementia and have certain expectations and I think we’re … pulled up sharp about that one.  You think ‘Oh she won’t remember that’ …but she clearly did so I think those … negative things that you have are constantly challenge.”

Although the PROCESS of undertaking life story work is essential in building relationships and communication, the PRODUCT – the place where the life story work information is collated and shared – was equally important.  With the permission of the person, this allowed the life story to be shared more widely and enabled the life story to be used with the person with dementia by other staff and for memories to be evoked.

The quality of the life story book was important and a daughter reflected on some spelling mistakes in her Mother’s book which detracted from it:

“Mother and I look at it quite often and every time she comments that things are not spelt correctly etc; she and I have always been very fussy about the correct use of English …Of course it does not matter very much but it is just an observation!”

The life story work PRODUCT also had value if the person with dementia moved between care environments as it could inform new staff about the person.

Theme Three

Connections were made between the use of life story work and the achievement of person-centred care outcomes with people with dementia and their families in health and social care

Life story work helped to improve communication between the person with dementia, care staff and family carers.  It also provided a topic of conversation for other people with dementia in the care setting.

Staff felt that life story work enabled connections to be made between themselves and the person with dementia and that relationships improved.  Also the knowledge of the person’s life story enabled staff to talk with the person with dementia and distract them to enable personal care needs to be met.

All staff gained a deeper understanding of the person with dementia through using life story work.  A support worker described how it enabled her to see the person behind the patients:

“I’ve learned a lot about her. I mean to me she came in she was a patient she was very confused, very distressed – but when she started opening up you could see the type of person she was.”

The new knowledge also helped staff to better understand reasons for behaviours that the person with dementia might display and show real empathy to the person.

Life story work seemed to allow the voice of the person to be heard much more or as this nurse describes bring the person more into the limelight:

“People were very interested and were saying “who’s this” and so we were hearing a lot more from Eileen about … it sort of pushed her into the limelight a bit.”

By sharing their life stories and being reminded about their lives there was evidence that the people with dementia were proud and valued their life story books.  A wife describes how her husband valued his book:

“When he looks at it his face changes, his eyes light up, it’s almost as if someone turns a light on, he’s like the ‘Ready Brek Man’, all lit up.  His posture alters, he sits up tall.  The other day he was walking down the corridor with it, like Eamon Andrews, he was tall and upright.”

 Theme Four

Some of the complexities of using life story work with people who have dementia in health and social care practice

 Through talking about their lives people with dementia can talk about quite sensitive and intimate memories and it was important to respect these and keep them private between the worker and the nurse and not include them in the life story books.

“You do access you know family secrets people do tell you things that you would never be privy to because you are using photographs and you know working on a one to one and spending a lot of time doing it people do tell you things that you would never be told, you know private things.”

This highlighted the need to training and supervision for staff undertaking life story work.

It was important to be clear about the purpose of the person’s life story and it proved a balancing act between making sure the person with dementia had the final say on what was included in the book, whilst also encouraging and respecting contributions of family members.  If the person with dementia struggled to communicate or contribute sometime snippets of information about their lives could be used to encourage them to talk more.  A staff nurse described how he knew the person with dementia played semi-professional football:

“I brought the subject up and he told me about he played left back his right back partner was a guy called Charlie Smith  and I said ‘so what was he like’ and he told me he described him as a ‘big big  lad’  and I said ‘So there was two hard men at the back then George’ and he just laughed and he said “Yeah, yeah” he took no prisoners sort of thing [laughs]…so he actually started talking so I picked up a lot about that from that.”

It was also important to make sure that the person with dementia wanted to continue telling their story and having it shared through taking an ongoing approach to consent.

Conclusion: This research extended the current knowledge on the use of LSW.  The constructivist approach taken was found to enable people with dementia to become actively and ethically involved in the research.  LSW should be implemented within a planned and systematic approach to reduce any difficulties and to enhance the care offered to people who have dementia and their family carers.  LSW enabled ‘person-centred care’ interactions to take place and provided opportunities for the person with dementia to feel proud about their life.

If you want to read more there are some articles from the research that have been published in academic journals:

McKeown, J., Clarke, A. and Repper, J. (2006) Life story work in health and social care: systematic literature review. Journal of Advanced Nursing, 55, 237 – 247.

McKeown, J., Clarke, A., Ingleton, C. and Repper, J. (2010a) Actively involving people with dementia in qualitative research. Journal of Clinical Nursing, 19, 1935 – 1943.

McKeown, J., Clarke, A., Ingleton, C. Ryan, T. and Repper, J. (2010b) The use of life story work with people with dementia to enhance person-centred care. International Journal of Nursing Older People, 5, 148 – 158.

McKeown, J., Ryan, T., Clarke, A. and Ingleton, C. (In Press) “You have to be mindful of whose story it is”: The challenges of undertaking life story work with people with dementia and their family carers. Dementia: The International Journal of Social Research and Practice. 

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