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.

“Life story” – an interesting example of networks being used constructively for innovation in dementia

Innovations which have a goal of improving wellbeing have a very good future in dementia care. Those which harness networks are likely to be particularly successful.

There are currently 800,000 people with dementia in the UK, with over 17,000 younger people. There are therefore serious questions as to how to maximise their chances of living well as individuals, as far as possible.

New innovations for people living with dementia are not at all trivial. One broadly accepted definition of an innovation is “the adoption of an idea or behavior, whether a system, policy, program, device, process, product or service, that is new to the adopting organisation”. A “strategy innovation” means thinking in an entirely new way about the basis on which the organisation, system or industry operates.

The assumption that dementia is best managed through a medical model with drugs that can cure or treat well the symptoms has necessitated challenges, not least because many of the medications are ineffective for many.

A ‘person centred approach’ places the person at the centre of their own care, and considers the care and support provided by others, and not simply as someone with dementia. “Person-centred” care, to improve individuals’ wellbeing, was first initiated in the U.K. in the 1990s by professor Tom Kitwood, who treated people with dementia as individuals, referring to their “personhood” to reinforce the fact that they still experienced emotions, both positive and negative.

Indeed, Prof Sube Banerjee, the new Chair of Dementia at Brighton and Sussex and Medical School, has demonstrated with colleagues that wellbeing in dementia can be dissociated from cognitive performance.

A plan for person-centred care in dementia, launched in France in 2008 together with the use of internal day care centres within nursing homes, dramatically reduced the prescription of anti-psychotic drugs – in some cases to zero. So a clinical and financial rationale for such innovations can be found.

A nice example of a community interest group which has implemented networks in introducing a philosophy is called “Life Story Network” (LSN).

Specifically, a ‘life story’ or’ life history’ is the term usually given to describe a biographical approach, which involves reviewing and evaluating an individual’s past life events. It involves working with a person and/or their family to find out about their life, recording that information in some way and then using the information with the person in their care.

It therefore is an excellent example of a person-centred approach in dementia care.

Whilst based on the principles of reminiscence and storytelling, it is distinct in that it also involves a critical review of life events and identifies present/future wishes.  Ultimately relevant aspects of a person’s past and present life are recorded with the aim of using this information to benefit them in their present situation.

As interest in integrated models of care continues, see for example the recent “Oldham Commission in Whole Person Care“,  this matter has become particularly relevant to all leaders in NHS and other care providers (including social care).

Everybody has a life story. These are rich and varied and can be used to communicate who we are to the people around us. People with dementia sometimes need help to communicate their histories and identities, and ‘Life Story work’ might provide a way for them to do this more easily.

LSN is a social enterprise which works with a range of partner organisations individuals. Social enterprises are well suited to deliver person-centred care, as they are typically dynamic and diverse businesses set up to address social or environmental need. promote the value of using life stories to improve the quality of life and wellbeing of people and communities, particularly those marginalised or made vulnerable through ill health or disability.

The benefits of such an approach include promoting increased understanding of the person and supporting the delivery of person-centred care. Other benefits include improving relationships between family caregivers and staff within inpatient settings.

Life stories also provide a valuable insight into the life of someone especially when they have difficulty in sharing this information themselves. Life Story work can be used to help develop a better understanding of someone needs and wishes so that care can be provided in a person- centred way.

According to the “Your Community Matters” Report produced by LSN in July 2013, there is a wealth of evidence, both global and national, which supports a more integrated, community based wellbeing approach to enabling individuals to remain connected with their support networks where they live. This approach puts a positive value on social relationships and local support networks, on self confidence and the ability of people to take control of their circumstances.

People with dementia and their families are to play a pivotal role in a pioneering study being led by Kate Gridley into the effectiveness of using Life Stories to influence their care and improve their quality of life. This new 30-month study will provide an essential evidence base for the technique which has the potential to help many of the people in the UK with dementia, as well as the people who care for them.

Researchers will carry out a systematic review of literature on Life Story work and gather qualitative data through focus groups involving people with dementia, family carers and professionals. They will then develop a theoretical good practice model of Life Story work as well as surveying the current use of Life Story work in dementia care across England. Finally, the researchers will assess the potential effects and costs of using the technique in specialist inpatient and long-term care settings, and consider further evaluation.

Networks are crucially important for the functioning of networks. A view has arisen that social networks such as Twitter act as innovative broadcasting devices, connecting people’s need for information and attention. But they are fundamentally collaborative.

The basic premise of social networks – allowing users to build a custom group of friends and colleagues with whom you can choose to selectively interact –is its broad appeal. But this premise has, in fact, been around for many decades in science research. Contrary to the popular image of the lone scientist toiling away in an isolated lab, just about all scientific discovery is a collaborative effort that requires extensive networks of lab teams.

The Twitter account @LifeStoryNetwrk is relatively young. People can choose also to interact with traditional competitors on such networks, and this can drive innovation. The dilemma is: if these actors collaborate, they become stronger competitors, but they also strengthen their rivals’ positions.

The advent of the Internet has provided new opportunities for collaboration thought impossible just a few years ago. Exchanging ideas and work by e-mail or Wikis, for example, has opened up new avenues for spontaneous communication.

Virtual teams such as  “Collaborative Innovation Networks” (COINs) are already in existence. COINs are virtual teams of self-motivated people with a collective vision, enabled by technology to collaborate in achieving a common goal – an innovation – by sharing ideas, information, and work.

An example of a COIN in the LSN is its online forum, where information can be shared and discussed. This demcoratising effect means that we can influence the future, through contributing in an online network to Commission on Residential Care which is secure and typified by peer support. 

This approach was been widely adopted already in the dementia sphere. Towards the end of last year, exciting new proven benefits in the training of dementia staff in Australia were published.

It is very likely that social enterprises will act as drivers of good innovation practice in dementia care. Pooling of abilities in the EU SELUSI initiative, for example, is a testament to this. One of its aims is “to create a trusting environment with social enterprises across Europe, as well as generate new evidence that could usefully inform the practices of network organizations” (sic).

Working together to improve the wellbeing of a person with dementia is not simply an innovation. It’s common sense, as it potentially improves something for persons with dementia we can do something about.

That is, their wellbeing.