Suzanne Mumford, Specialist Advisor (Nursing) on CQC care home inspection teams and a qualified trainer who is working with us on our Best Practice Training Course for activity co-ordinators, explores the benefits of using life-story and life-experience information for people with dementia, and discusses some of the potential barriers and suggestions for improving their use.
There is a significant body of published evidence confirming the benefits of using life-story work when supporting people with dementia. Add to this the wide range of products for gathering life-story information in a range of formats including books, memory boxes, photographic and digital albums, it is surprising that the use of this information remains seemingly underused.
The essence of person-centred care as described by Kitwood (1997) “allows a person to move from being an object of attention to a communicating person”, but what happens when the ability to communicate is the very element that the person with dementia now finds the most difficult. What happens when a person can no longer fluently tell their own story?
Life stories define who we are and help to shape our personalities and reactions to future experiences, they build on our sense of ‘self’ (Killick and Allen 2001; Sabat 2002). The range of resources available for the collection of life stories have been developed to include autobiographical data as well as the person’s normal routines, lifestyle preferences, known likes and dislikes and information to help with problem resolution. When this data is collected and widely used, the quality and quantity of exchanges between the person and their carers improves (Bourgeois et al. 2001). When additional communication training was given in conjunction with the use of memory books containing biographical information and daily routines, Burgio et al., (2001) report more positive verbal interactions. Nursing assistants were more talkative, used more positive statements and gave more personalised and explicit instructions to the people they support with dementia. The evidence is clear and yet over 15 years later we still struggle both to collect and to use life story information effectively, perhaps we are making a simple concept too complex for daily use.
In my experience the process of gathering information often represents the first barrier. Although gems of information are often collected as part of the pre-assessment process, these are infrequently shared and often never make it to the care plan to inform approaches to communication, care routines or lifestyle preferences. “We have asked the family to complete the life story book but they haven’t given it back” is a frequent response to my inquiries about a person’s life before care. I am also often told by families “we gave the staff a comprehensive life history but no one seems to read or use it”. More recently I have heard activities leaders and coordinators express their anxiety at being given the task of completing life histories for all of their residents. So what is the answer? The questions must be;
- How much information is needed?
- How and when will we use that information?
How much information is needed?
Although we all hold onto a wealth of life experiences in our memories, using them to inform our future lives and provide reference to our actions and associated emotions, we actually need very little information to help preserve a person’s sense of ‘self’. We select elements of the memories we wish to share according to who we are with, creating the picture of ourselves that we want to portray. What is most important at the time of an interaction is often as simple as recognising the person’s status, that might be in terms of their role in their working life; doctor, nurse, manager, cleaner, housewife or their role within the family mum, dad, daughter, son, grandmother, grandfather.
Often carers find it difficult to start conversations that are not related to care tasks. Kitwood (1997) depicts the needs of people with dementia as a delicate flower, with love being central to all of our needs and recognising our essential needs for comfort, attachment, identity, occupation and inclusion.
Using this simple model probably offers the answer to how much information we need and ways to use it to start conversations and meaningful interactions.
By answering the questions and completing this table for each person we care for with dementia, we almost certainly have the basis for the start of our ongoing relationships and interactions. This offers a simple cue card for care staff to help to start conversations and engage meaningfully with individuals in a personalised way.
How and when will we use that information?
We often share memories with people we ‘know’, they have either shared their memories with us or have an interest in the story we have to tell. We don’t usually launch into a story with a complete stranger without some form of introduction and a period (however short) of getting to know one another.
So including within the cue card ways to communicate, will help carers to establish contact and use the information:
- Establish visual-verbal contact before any form of touch
- Don’t get too close too quickly
- Allow the person time to respond
- Don’t rush
- Remember your body language will tell the person more about your intentions than what you have to say
Much of the information on each cue card can be used during most interactions, review and updating is quick and simple to reflect new information and changes. Having started the conversation, opportunities for further meaningful engagement can be created using elements or all of The Daily Sparkles.
- Angus, J., Bowen, S. (2011): Quiet please, there’s a lady on stage: centering the person with dementia in life story narrative. Journal of Aging Studies 25, pp110-117.
- Bourgeois, M.S., Dijkstra, K., Burgio, L., Allen-Burge, P. (2001). Memory aids as an augmentative and alternative communication strategy for nursing home residents with dementia. Augmentative and Alternative Communication 17, September, pp. 196-209.
- Burgio, L.D., Allen-Burge, R., Roth, D.L., Bourgeois, M.S., Dijkstra, K., Gerstle, J., Jackson, E., and Bankester, L. (2001). Come talk with me: improving communication between nursing assistants and nursing home residents during care routines. The Gerontologist, 41 (4), pp 449-460.
- Killick, J., Allen, K. (2001). Communication and the care of people with dementia. Great Britain: The Open University Press.
- Kitwood, T. (1997). Dementia Reconsidered. Buckingham, Open University Press.
- Sabat, S.R. (2002). Surviving manifestations of selfhood in Alzheimer’s disease. Dementia 1(1), 25-36.