Life story work and care mapping for people with dementia: creative work is human, form-filling is not

I looked at the projects approved for funding by the government’s dementia research programme. Most of the things are about stepwise improvement in how various bits of the NHS manage dementia care.

Link to the government's list of projects they are funding here. They are many (21) and various.

I picked out two that interested me. One is about the use of life story work; this is a technique for getting people to look at the different stages of their life and producing a written account, or increasingly video and other kinds of product. I imagine that they are interested in it because it might improve or use the memory of the person whose dementia is worsening. But what I think is much more important about these sorts of techniques is that way it encourages people to work on projects, and be creative in what they are doing., So much health and social care focuses on managing a care setting, and keeping people alive in what are fundamentally boring environments. Creative activity is a really important way of combating this.

The other thing I think is important about this is that it is a form of activity which involves the person with dementia taking part in human interaction with the person working on their life story with them; so much conversation in care settings is humdrum management stuff rather than personal, it also involves the person with dementia leading the conversation with their life story, rather than answering questions that are mainly of interest to the professional.

I also picked out the project on something called dementia care mapping. The starting point for doing this study is that people with dementia in care settings become agitated or difficult in ways that the staff can’t cope with. As a result, such people with dementia are more like to be admitted to hospital, and given anti-psychotic drugs to cool them out, making them easier to manage. This is worrying in itself: years ago, social work developed a professional policy that it was neither useful nor ethical to cool people out; better to understand and work with their difficult behaviour. I wish other professions thought the same way.

But I would have wished that they’d come up with something better to research than another ‘tool’. You may be misled by the word ‘tool’ into thinking that this will be some concrete and practical way of helping people in this position, but tools in the care world are usually forms for staff to fill in. I’m always very interested in the interpersonal content of the conversation when forms are being filled in, and then what is done with them. Forms being filled in is often done in a routinised way by staff who don’t really understand what they are about, and then don’t know how to use them.

The project information says this is about staff development: but how are they going to help staff develop using the material they are working with? The education process that results is far more important than getting them to fill in the form. I’ll wait for the research results before believing this is going to be widely useful. I suspect it may turn out to seem wonderful to the people who are piloting it and have research money spent on helping them to develop their understanding. For the people who follow on after it is declared a success, I suspect it’s going to be just another form to fill in. 

These are the accounts of the projects in the Department of Health's list:

HS&DR 11/2000/11 Improving care for people with dementia: development and initial feasibility study for evaluation of Life Story work in dementia care.

People with dementia sometimes need help to communicate their histories and identities. This study will investigate how 'Life Story work' can help people living with dementia to do this, and whether this work can enable services to more effectively meet their needs. It will do this by speaking to people with dementia, their carers, and health care professionals about their experiences of Life Story work, and identifying areas of good practice.

HTA 11/15/13 Evaluating the effectiveness and cost effectiveness of Dementia Care Mapping (DCM) to enable person-centred Care for people with dementia and their carers: A UK cluster randomised controlled trial in care homes (DCM EPIC trial).

At least two-thirds of people living in care homes have dementia and many become agitated or show other behaviours staff find challenging.

These behaviours are often linked to poor quality care and people with these behaviours are more likely to be admitted to hospital and are often prescribed antipsychotic drugs, which can cause harmful side effects. This study will involve 750 people with dementia and care staff in 50 care homes. 30 care homes will be randomly allocated to have staff trained to use Dementia Care Mapping; a practice development tool and process. The success of Dementia Care Mapping will be measured according to changes in behaviours staff find challenging, resident quality of life, the drugs residents are prescribed, the number of NHS services needed for residents, changes in the numbers and types of negative events residents experience (for example admission to hospital, falls), how staff feel about their job and staff resignations and sickness.