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Dementia Care: Life Story Work
Working with the person not the disease is the holy grail of dementia care, working with families both now and post mortem is the key to helping them cope with guilt and distress. In this blog I discuss a starting point for the attainment of person centred dementia care.
What is Life Story work?
Life story work is most practiced and associated with social working with children who have suffered trauma, multiple moves or have been adopted or are in the fostering network.
It is a way of working with attachment and identity issues.
It is often performed individually or in small family groups.
But life story work has been used extensively in dementia often along with, or beside reminiscence work, and often mistaken for life history, it can be used for fun or for therapeutic means.
Life history, life story or reminiscence?
People without memory difficulties have a chance to know their past and to clarify and reconcile past and current events in terms of the here and now. In Ericksonian terms the purpose of old age is to reconcile and come to terms with one’s life and life experiences. Neurosis in old age is associated with a failing to come to terms with our life’s failings and disappointments.
For people living with a dementia, in its many forms, the past is sometimes a jumble of half grasped uncertainties or out of time recollections and recent events and learnings can be forgotten and lost and as we are our memories: here and now events can seem frightening, out of sequence and futures cannot therefore be individually planned.
But as we know, people living with a dementia have a past, a present AND a future.
Reminiscence is about recalling and exploring the past and reminiscence working is often fleeting or sessional whereas life story work should be a continuous process.
Reliving the past or the past in the present?
It is said of Life Story work that it is the process not the product that yields the results.
Life story working often results in a life history book or video or tape so that at each visit continuity is present and that unlike reminiscence a thread links the various associations with the present time.
It is the connecting of the various mediums of memory and recall that provides the basis for effective life story work and the use of current abilities to ‘store’ these memories for future use. In dementia working it is the therapist (carer) who acts as the program manager, who stores the materials, who links the work into a meaningful whole, who records the outcomes and adjusts each aim to better the experience in the here and now for the person they work with.
Structure to Identity
Life story working adds a structure and a theme to someone's search for their meaning and recapturing of their sense of self – their unique identity – or as we have come to understand it in dementia care – their personhood.
If someone forgets who they are then who are they? Dementia of the Alzheimer’s type disconnects a person from their past, jumbles up their present and challenges their future. Our job, using life history is to understand who the person factually is. Our job using life story work is to understand who they ‘are’ their real self, the person they see themselves as despite what their history tells us – in life story working it is not helpful to consider the facts, but the meaning of these facts for the person.
As you have learned about me I lived in the South for 30 years but I am a man of the North. I was a successful Judo fighter but I abhor violence, I love rock ‘n’ roll and choral works equally. I am a socialist but work in a capitalist business successfully – the facts belie the truths of who and what I am.
If you rely on life history to care for me in years to come we will not connect but if you work with who and what I see myself as DESPITE the linear evidence of my life then we will have a connection and you will preserve my sense of self.
Life story working can:
- Connect and reconnect families
- Provide timelines
- Heal trauma
- Provide valuable information often thought lost to the carer for the provision of more insightful care
- It can reveal the person behind the diagnosis
- It can restore standing and status which as we know are the bedrocks for personhood
What is Identity?
Identity is a complex subject.
Identity can be said to ‘start’ as we first become aware of the world inside and outside at about six months and develops at stages throughout our lifespan including old age.
The creation and maintenance of the idea of self is crucial not only to healthy development but also in accepting where we are now.
A poor sense of identity can ‘freeze’ a person and limit their ability to move forward or prevent acceptance of the present and can cause apathy, depression, hostility and a sense of fatalism.
The role of Life story working
The past is made up of places, significant dates and names, people, changes. Losses or separations and other events, both happy and sad, like illnesses, deaths, births, holiday and birthdays.
The present is made up of self-images, reactions to the past and responses to current situations and to the questions of what am I doing here? Where do I belong, How do others see me?
The future is made up of issues such as what will become of me? Where will I live, what chances do I have, what other changes will there be and who do I love and who will love me?
Life story work provides a continued narrative between the past the present and the future.
The Programme Approach to Care Provision
How many different disease processes make up the dementia syndrome?
How many models of care are there – enough or not enough?
So do we fit the model to the person or the person to the model?
Do we treat the people in our care homes and hospitals as if they had only one disease presentation, many or even none?
Person centred care calls for the abandonment of stage theory – the theory that as the disease progresses certain features will be present depending on how long the disease has been maturing and that as with other fatal diseases, dementia leads to only one outcome – a nihilistic and fatalistic model you may think - but does that mean caring generically without due regard to our medical understanding of the various diseases?
Does a programme approach using a biopsychosocial model replace stage theory or add to the controversy?
Programmes of care means individualised care packages which take into account the course of the disease process, the psychological and physical wellbeing of the individual, the skills of the staff group and the design of the building: it also recognises that where groups live together routines and structures must be in place.
A care programme is individually designed, has multiple inputs, is reviewed by teams and progressed on individual results – it is outcome led and theory based.
A programme of care for an individual living with dementia would have life history as need number one – know the persons linear history – what happened to this person on their life journey and how does this help us to understand and help them in the here and now – and alongside this history we would begin our programme of life story work.
How have those events contributed to who this person sees themselves as – by working therapeutically and systematically then with ‘this’ person you can begin to give them, and their family, the most precious of gifts, even in the face of advancing disease and symptoms – their self!
Till next time
Paul Smith – Dementia Care Expert