Life story: an essential tool in living better with dementia

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A life story is the essence of what has happened to a person. “Life story work” is not just about gathering information about a person’s life. It can cover the time from birth to the present or before and beyond. It includes the important events, experiences, and feelings of a lifetime. It can be a very helpful tool for dementia care.

Someone’s life story describes a human process uniquely lived by an individual. It directs the individual’s way of looking upon her self or himself and is, therefore, an important component in a person’s identity. To have a feeling of personal value, it is essential that the individual is seen. Life story work can be helpful in understanding more about the person’s interests and preferences. Listening to someone else’s story is a powerful way of bestowing value on that person. From birth to death, people live through many struggles, joys, relationships, triumphs, and disappointments that structure the meanings assigned to their lives.

Things which might be included are:

  • factfiles: lists of likes and dislikes/preferences, mother’s name, primary school
  • personal accounts: stories about first day at school, a holiday, what life was like in X during a certain period of time. photographs, family trees.

A person living with dementia is just that: a person first and living. Often for the person living with dementia, their main interaction with others is focused on personal care tasks. Whilst these are essential, a person is more than a group of tasks and should not only be defined by what they need.

Despite the progressive nature of dementia, persons with dementia show they still have the ability to recall past memories and to experience improvements in their perceived wellbeing. This provides an opportunity for care staff and other professionals to use life review and life story book as a part of care activity to improve and maintain the wellbeing, cognitive function and mood of individuals with dementia as long as possible. The emphasis on individual’s life stories and experiences appears to help staff to get to know residents better, and offers the potential for more individualised, person-centred care which recognises the importance of the person’s biography.

According to Linde (1993), there are two criteria to be fulfilled in a life story. First, a life story should include some evaluative points, which communicate moral values of the narrator. Secondly, events included in a life story should have a special meaning and be of such significance to the narrator that it can be told and retold throughout life. The use of biographical and life story work has a long history in dementia care, although the opportunities for people with dementia to express themselves by telling their story may be limited.

But life story work is not just about gathering information about a person’s life. What is important is the way in which the life story information is gathered. The challenge is to ensure each person lives well. This can be achieved by really getting to know the person through the development of a life story and focusing on the person’s abilities now, what they were and what they are interested in.

There is evidence to support the view that life story work can improve the relationship, whether family or professional, between the person with dementia and their carer(s). Persons are likely to describe life story work as an enjoyable activity. However, it is not just the activity that makes the event enjoyable, it is the forging of companionship that accompanies the sharing of the book which matter too. Benefits reported usually include enhanced well-being; improvements in mood and some components of cognitive function; and reductions in disorientation and anxiety and improvements in self-esteem, memory and social interaction.

In his seminal book “Dementia reconsidered: the person comes first”, Kitwood (1997) recognised these threats to the personhood of people with dementia and stated that biographical knowledge about a person “becomes essential if that identity is still to be held in place” (p. 56).

Kitwood (1997) suggested that one way of holding identity in place is through the conduct, production and use of a life story. Kitwood here defined personhood as ‘a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being. It implies recognition, respect and trust.’

Other useful discussions of personhood are found on the Alzheimer Europe website.

Life story work offers a chance for family carers to illustrate the personhood of their relative; and allows care staff to get a sense of the person behind the dementia and make links between the person’s past and the present, so helping them respond more sensitively to need. Kitwood (1997) developed a framework of person-centred care that acknowledged the person with dementia’s sense of self, supporting care staff to act in ways that promoted a person’s sense of identity, autonomy and agency.

There is much debate in the literature as to what extent the self persists or diminishes in people with dementia. Some researchers contend that the self remains intact throughout the course of dementia. The common failure to recognise the individual’s continuing awareness of self can lead to low expectations for therapeutic intervention, to interactions that are limited to the task at hand (such as activities of daily living) and, therefore, to less than optimal experiences for a given level of dementia.

When a family member gradually loses the ability to tell or remember his/her life story, close family members often support the patient by taking over the storytelling or adding details to the story. Previous research has shown that this type of collaborative storytelling can be a deeply moral activity for the patient and his/ her close relative(s) in that there is a strong commitment to supporting the patient’s identity through the storytelling. Spiritual reminiscence, a type of narrative gerontology, has an important place in individual and community experiences of ageing. It is a way of telling a life story with an emphasis on what gives meaning to life, what has given joy or brought sadness. The process of spiritual reminiscence can identify issues of anger, guilt, or regret.

A number of challenges can potentially present when using life story work with people with dementia. Private and personal stories might, perhaps, sometimes divulged during the life story work process. Also it might also be possible to have a life story book that is rushed, contains errors or is of poor quality somehow detracts from the person and their life. There is a need for a final quality checking process that includes the person with dementia and family members before life story books are completed. But life history information can be recorded in a range of different ways including life storybooks, leaflets, collages, memory boxes and/or electronic formats.

 

References
Kitwood, T. Dementia Reconsidered: The Person Comes First. Open University; Buckingham: 1997.

Linde C. (1993) Life Stories: The Creation of Coherence. Oxford University Press, New York.

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