living well

Life story: an essential tool in living better with dementia

Shibley Rahman 0 Comments

story

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.

Are individuals living with dementia “recipients” of care?

Shibley Rahman 1 Comment

Language is very important. Only this week, the media was stuffed full of talk of dementia being a ‘horrible disease’, and people ‘suffering’.

A recent Telegraph article cited, “Health Secretary Jeremy Hunt says it is “utterly shocking” that only half of people suffering from dementia are being formally diagnosed.”

Society has a certain image of dementia. It really is no use denying that this image is horribly negative, and feeding on this fear can be low-hanging fruit for raising funds through charity.

In this scheme of thinking, those with the dementia are only viewed through the prism of their illness, and this is often reduced to the image of its last and most tragic phases.

It is as if as soon as a diagnosis of a progressive dementia is made, the person in question, it is perceived by the rest of society, automatically becomes incapable of taking any autonomous decisions, loses his/her personality and identity and immediately needs to be cared for.

Language

In reality, however, this illness can develop quite slowly: between the moment when it is diagnosed and the terminal phase, there may be years of development. Moreover, people living with the illness can rarely have the opportunity to express their thoughts and feelings about it: there is communication about them, but only rarely with them. The individual sadly disappears behind the blanket label of an illness.

The term “suffering”, however, sounds negative, and does not support the concept of “personhood”, and certainly does not fit with a philosophy of “hope” and “wellness”.

The way the NHS has latterly been structured as a market also reinforces this customer-supplier master-servile relationship. Dementia care is a ‘service’ you can pay for, with or without a personal health budget.

The dominant notion itself that the need of people with dementia to socialise should be met by “services” is disempowering, for the concept of service incorporates the notions of “providers” and “recipients”; of the “helpers” and “the helped”, of “us” and them”.

These notions further perpetuate the stigmatising assumption that people with dementia are only able to participate in relationships as “receivers”, and that relating to them is a problem for those who do not have the disease: they further advance the widespread perception that people with dementia are, essentially, a “burden” on their families and society.

This term “burden” can perhaps help validate the ‘burden’ some caregivers experience, but should not be assumed and should be avoided when speaking in generalities such as public presentations.

This language and terminology are in desperate need of change, and the prevailing perception of people past the first stages of dementia as just receivers of care, and users of services, needs drastic reframing.

The truth is that, as the symptoms of the disease progress, people with dementia can still play an active role in society, if provided with support, and this support can very often be provided by fellow citizens, rather than by professionals paid to deliver a service.

The purpose of person-centred language is to recognise the impact of language on thoughts and actions, to ensure language does not diminish the uniqueness and intrinsic value of each person.

Personhood is pivotal. This is the 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.

The aim is to create the positive conditions where the person can live without stigma; where people are treated with warmth and authenticity, listened to without judgment and are given opportunity for self-expression.

There are, however, ways to ‘reframe’ this debate.

Framing is a fast developing concept, as much in communication sciences as in other disciplines. This is partly due to the fact that it is a rather flexible approach that lends itself to many applications.

New framework

When there is a question relating to knowing how a particular subject is presented, in the media for instance, framing immediately springs to mind.

Instead of painting the illness as a homogenous and unchanging totality, it would be preferable to place the accent on its progressive and developmental nature.

One can put the accent on continuing to be a real person despite the decline due to the illness: acknowledge the personality, the identity and the life journey of those with a progressive dementia.

One can also develop empowerment and social inclusion with people with a progressive dementia. Such individuals are more than passive and dependent consumers of help and care services. They have resources that should be mobilized. The principle of inclusion implies that society is composed of all its citizens. However, this needs competent leadership.

Let those who living with dementia speak. It will provide others with one of the most powerful counter-examples in relation to the current dominant image, which often makes the individual disappear behind his/her illness.

Let your respect for those living with the dementia be obvious in what you have to say.

It is useful also never to forget that people with Alzheimer’s disease also have their own life story, their own personality and character. This is because their long-term memories are relatively preserved, due to a phenomenon first characterised by the French neurologist Ribot in the 1880s. Enable these aspects to be expressed too.

Those who disseminate messages, especially via texts designed to influence people, may deliberately choose a frame that the reader is supposed to pick up and appropriate so as to henceforth view reality in this way.

Given that frames form part of any culture, many of them are common to both the sender and the recipient of a given message.

The question of whether framing is a conscious process remains open to discussion: how far will the writer of a given text deliberately choose a frame that serves his own interests?

As we approach the G8 leading on the subject of what is important in dementia diagnosis, research and care, it is all the more important that we frame the discussion properly.

There are so many stakeholders in English dementia policy, it can be quite uncertain know where the current dementia policy has come from.

David Cameron has often argued that ‘it is not where you’ve come from, it’s where you’re going to’. If one of the goals is destigmatising dementia in society, how we articulate the present debate today is vital to our progress tomorrow.

This means not talking about ‘horrible’ and ‘suffering’ in a way as to encourage ‘moral panic’.

This means treating people with dementia, living at all stages with any particular condition, with the dignity they deserve; this will enormously help carers too.