Humans are unique, shaped by life experiences woven into a rich tapestry that makes up their identity and history. Diseases, ailments or other life challenges can alter their innate sense of self or the way in which they are perceived by others. Behind this, it is important to remember that even when we get sick or approach death, and veer from who we once were, the unique person still remains.
This unique person is deserving of person-centred care, which should be considered when it comes to offering support to people with dementia. Each person with dementia is different, meaning different things may be useful for each individual. In order for support to be helpful, it is vital to really get to know the person, their history, interests and all the aspects which make them unique. And critically, to understand the way in which dementia is affecting their life.
What is Dementia?
Dementia describes a collection of symptoms that are caused by disorders affecting the brain, and which lead to the gradual death of brain cells. Dementia affects thinking, behaviour and the ability to perform everyday tasks. Brain function is affected enough to interfere with the person’s normal social or working life.
This progressive cognitive decline varies from person to person and may depend on which type of dementia they have. For example, common types of dementia take the form of Alhzeimer’s disease, vascular dementia, fronto-temporal dementia and dementia with Lewy bodies. Symptoms of these can include memory loss, changes in behaviour and mood as well as problems with communication and reasoning skills.
Sufferers of this complex combination of symptoms have the capacity to be genuinely supported in ways that encourage communication and storytelling, such as through the use of Life Story Work.
What is Life Story Work?
Helping others understand the real person behind the challenge is at the core of Life Story work, which focuses on life experiences as a vital source of information about the individual. It aims to provide a mechanism for people with dementia to express these important aspects of their identity - like background, interests, who and what is important to them - which they may not otherwise be equipped to do due to problems with memory loss and communication.
Learning about someone’s life can give a real insight into how they might be feeling, based on where they have come from. Knowing about the person and their past is the first step in this process. Life Story work is a useful tool to enable others to draw out this type of knowledge about a person. As part of this activity, the person with dementia is supported by care staff (if there is an assisted living arrangement) and family members to gather and review their past life events and build a personal biography. This is then used to help the person understand their past experiences and how they have coped with events in their life.
A record of experiences, likes and dislikes is also very useful when someone is moving between care settings or when different professionals or loved ones are involved in a person’s care. The product of the Life Story work allows carers to get to know the person with dementia better and develop a greater insight into their life, which in turn can enhance the relationship that person has with staff and family members (as well as the relationships between the different carers).
How can Life Story work improve quality of life for dementia sufferers?
Life Story work has the potential to enhance person-centred care for people with dementia and their families. It has been successfully implemented within in-patient settings, resulting in an improved understanding of patients and family carers by professional staff. The experience of doing life story work is often reported as being overwhelmingly positive and there is evidence that the delivery of care becomes more person-centred as a result.
As well as enabling strengthened and more personalised engagement in the provision of the all-important care, there are benefits to the dementia sufferer which can negate the effects of the impairment:
- An increased sense of identity through sharing stories, which can be especially useful when the person is having difficulty sharing this information
- Lifted mood as a result of the work, enabling the person to talk about the ‘good old days’ and share their experiences of growing up, working, holidays and family gatherings
- Encouragement of better communication and understanding of the person’s needs and wishes can also mean they feel supported to communicate directly about their care to ensure that it is provided in a positive and person-centred way
- Development of closer relationships and stronger bonds with family carers and staff through sharing stories.
Creating a Life Story
As dementia progresses, it can feel as though a sense of self and identity is evaporating, and a person may have trouble remembering who and what is important to them. Like any conversations around illness, death and dying, it can be difficult to know where to begin and what to do if you do start noticing these changes in yourself or a loved one. In many cases, it is important to interrogate symptoms further and it may be supportive to also consider Life Story work.
Life Story work is simply one way to remain engaged and active in battling the disease’s progression, and may help to provide a connection back to the person behind the challenge. The value in reminiscing and recording stories can even go beyond an enhancement to care, quality of life and personal wellbeing, as it may become integral to estate planning, end-of-life planning and informing a Will.