Tag Archives: dementia uk

Reflections on doing life story work with people with dementia

Earlier this year I was invited develop a process to embed life story work at a care home for people with dementia with the aim of enhancing the day to day lives of the residents.

Life story projects have the capacity to be beneficial to vulnerable people by supporting ‘self-hood’, increasing self-esteem, providing a place to express loss and to grieve, improving the continuity and quality of care and offering opportunities for reciprocal conversation.

My proposal set out a guide for implementing group work, much along the lines that I’ve done for many years with learning disabled adults, (see previous post). The methods that I’ve developed use group discussion, reminiscence and turn taking to gather stories. After the first introductory session in the care home I realised this approach wasn’t going to work, so, together with the permanent staff, I’m adapting and developing a practical and workable model.

  • Group versus 1:1

Group work wasn’t the most appropriate approach for a number of reasons. The narrators all have hearing loss and are quietly spoken which makes round table discussion difficult, but more importantly, their memories are private. Although some of the group might get along quite well with each other, their relationships are made difficult by the extent of their memory loss. They seem to prefer talking to the person closest to them in a private and focussed way.

Life story work is fundamentally a 1:1 activity and with this client group it doesn’t appear either a practical or ethical course to make it otherwise. By the second session we had divided the group in to three groups of two, each with a member of staff. Rather than sitting around a large table, the small groups used different parts of the room. This created a more intimate and focussed atmosphere, but was not ideal. By the end of the third session, listening to feedback and from my own observations, we have decided to work 1:1 in either the quiet lounge or resident’s rooms. We came to this conclusion after noticing that the room was quite noisy, thus making talking & listening difficult, and also the distraction of some residents who find it difficult to concentrate ( the room is used as a thorough-fare). Also, as interviewers, we were either working with one or other of the residents in our small group. What should the other person do while it was not their turn? Dose off or feel ignored or become distressed?

  • Using existing material

All the residents have some information gathered by staff from family members from the time they arrived at the care home. The extent of the detail in these accounts varies from a few paragraphs of basic life events to rich and colourful stories of lives lived. Most of the residents have photo albums. These accounts are providing a useful starting point for the resident’s life story projects and in some cases can be sufficient, with the addition of selected photos & images to create excellent projects. Some of the resident’s family members are able to join the sessions and can corroborate and elaborate on the existing information the care home has. The role of the staff member then becomes one of making  sense of gathered information and presenting the life stories in an accessible and attractive way.

There are some excellent guides to doing life story work with people in this client group on websites like Dementia UK. Having a guide and template for gathering experiences can be very helpful. See http://www.dementiauk.org/information-support/life-story-work/

Search engines are a fantastic resource when photos aren’t available to support or trigger memories. Searching for and printing images and information, for example about a school or regiment, demonstrate interest and provide illustration to otherwise wordy pages of type.

  • Memory and imagination

To my horror I hear myself saying ‘Do you remember…’ during the sessions. This is distressing and unnecessary, but hard to skillfully avoid. I’ve found that it’s better to talk around a subject in an apparently casual manner and wait for the narrator to add their voice in a way that doesn’t make them uncomfortable or remind them of their memory impairment. Stating known information clearly is effective in creating a safe environment. For example, ‘You got married in November, I wonder what the weather was like?’. The narrator is then free to talk about what they wore, who and where they married, or the weather in November, without feeling they are being interrogated about something they have no recollection of. There is also a need to redirect people away from distressing memories in to safe territory as necessary. This is especially important as a session draws to a close. Fortunately the staff working with me continue to be around later in the day.

Thanks to an email exchange with Sam Robson from Groundswell Oral History for Social Change  http://www.oralhistoryforsocialchange.org  I recently found out about Anne Basting’s TimeSlips method: http://www.timeslips.org – a story telling approach that frees people with memory loss to imagine stories. Working alongside this group has made me question the emphasis we place on the real versus the imagined. From personal experience I understand that for a person with a diagnosis of dementia to function well it is necessary for them to feel at ease. Spending two hours asking them to recall their memories about various aspects of their lives, when they clearly aren’t able to, doesn’t create ease & contentment. Over the next few months I’ll continue to notice what is effective in eliciting and recording the resident’s stories and put together a practical & ethical guide for doing life story work with this client group.

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