1. Life Story Work in Dementia Care UK Dementia Congress, 2nd November 2016
Kate Gridley, SPRU, University of York,
Nada Savitch, Innovations in Dementia

2. Are you here to hear about life story work?
Is this about a book you write about your life (implies pwd dementia in the lead) – to record memories/re-affirm identity etc?

3. Or life story work?
Or something pwd and carers do together – to share memories/connect etc?

4. Or life story work?
Something done in care settings, primarily led by care staff in order to learn more about the people they care for and improve person-centred care?

5. We reviewed the literature:
Life story work means different things to different people
Not as simple as asking ‘does it work’?
For who?
In which settings?
What are you actually doing when you say you’re doing ‘life story work’?
What do you actually want to achieve??

6. There is no consensus on good practice in the literature…

7. So, what next??
3 minutes in!

8. Ten focus groups 73 participants in total People with dementia:
Family carers:
3 groups
21 participants
Professionals:
27 participants
People with dementia
Through existing groups
Family carers
Via Uniting Carers
Professionals
People with an interest

9. Virtual Advisory Group
Equal voices
Involvement on their terms
Specific questions
Links with advisory group of professionals
Relaxed
Good communication
Appropriate documents
If you’re going to do primary research you need an Advisory Group to ensure that you work in an ethical (don’t cause harm) and valid (ask the right questions and get help from people who are experts by experience to interpret what you find) way. But how do you avoid tokenism when the people you want to involve are people with dementia and busy carers…?
5 minutes

10. 9 good practice messages
Things that were agreed upon by all three types of participant:
People with dementia
Family carers
Care staff and other professionals

11. Views about good practice
Not everyone wants to make a life story…
I don’t bother
Woman with dementia (F2R5)
Woman with dementia (F4R2)
Sometimes you want to forget
Man with dementia (F3R4)
I’m pretty boring!

12. Is it the right approach for this person?
With [husband], a couple of times, people have tried to do life story work with him… but it wasn’t very successful. …he didn’t want to go back. And very, very early on, he really didn’t like looking at photographs, and particularly photographs of people who were dead.
Wife [F2R6]

13. The person whose life it is may have different views from you about what their life story is for…
You don’t want them reading about you when you’re not there?
Researcher
Person with dementia (F2R3)
Well no, no, no. You might as well have it while you’re just sitting here like we’re doing now…
How would you feel?

14. Is it important to be able to do it on your own?
Beginning the process early will enable people with dementia to take a more active role
Is it important to be able to do it on your own?
Researcher:
Yes…because I like a challenge, but at the moment the challenges are getting harder and harder [laughs], needless to say.
Woman with dementia: F3R7

15. Life story work can be emotional and may raise sensitive issues.
Woman with dementia (F1R3)
It makes me shiver and shake [to look at these photos], it’s just regret that it’s gone.
It could provide the opportunity to have feelings acknowledged and validated
Staff need training and to be supported
Mixed views from people with dementia about whether to include upsetting memories
Those wanting to discuss difficult issues should be supported to do so
Life story work could provide the opportunity to have feelings acknowledged and validated
Staff need training and to be supported

16. Staff should consider making and sharing their own life stories
How does it feel?
What would you share?
What wouldn’t you share?
Shifting the power balance?

17. Process or product?
Obviously, you’re always trying to get to know somebody… [but] so much of that information is lost…
the [health care assistants] for example, have very little opportunity to feed into things like ward rounds, but they’re the people that know the patients the best
Hospital occupational therapist [PF1R1]
It’s both!

18. read/look at the life story
Outcomes for better care will only come if care staff use the life story
… I put it in her bedroom, and I just, in my naivety, thought that they would share it… She was given dreadful antipsychotic drugs to keep her sedated …and they ignored what I’d put together… They didn’t use it at all.
Family carers: outcomes depend on whether care staff:
read/look at the life story
use life story info when planning and delivering care
Daughter [F3R7]

19. Short summaries might be useful for busy staff, but cannot replace a full life story
Well you’ve only seen the gist of my life in it … all my life story, it’s bigger than that…
Man with dementia [IH2P04]
This quote is actually from one of the participants in the study we did in hospital wards – he was looking through the life story book they’d made with/for him while he’d been on the ward. It was more than a one page summary, but he still felt it was an inadequate representation of his life.

20. A person’s life story is never finished
People don’t want to be ‘set in stone’
What are they like now?
What do they want to do next?
I’m hoping I’ll be writing it the day I die, because so many things will still be happening … I’m only 62, so
Man with dementia [F3R5]

21. Questions? For more information contact:
Kate Gridley, SPRU, University of York

22. References
Gridley K, Brooks J, Birks Y, Baxter K, Parker G. (2016) Improving care for people with dementia: development and initial feasibility study for evaluation of life story work in dementia care. Health Services Delivery Research 4(23)
Kaiser P and Eley R. (2016) Life Story Work with People with Dementia: Ordinary Lives, Extraordinary People. London: Jessica Kingsley

23. Acknowledgements and disclaimer
This event presents findings from research funded by the National Institute for Health Research Health Services and Delivery Research Programme.
The views and opinions expressed are those of the research team and do not necessarily reflect those of the HS&DR Programme, NIHR, NHS or the Department of Health.