Title: “How Does Completing Life Story Work Affect People with Dementia?”
Abstract
Personhood is at the core of person-centred care in people with dementia (Kitwood, 1997). Of the practical approaches utilised to promote this ideation of personhood, life story work is one of the most commonly exercised. Despite a general consensus that life story work has the potential to elicit several positive outcomes for people with dementia, research in the area remains limited (McKeown et al, 2006). In particular, there is a gap in research which examines how the person with dementia experiences completing life story work, and this will be the focus of this piece of research.
Introduction
There is no commonly understood definition of life story work, however, for the purposes of this project life story work will be understood as:
‘a form of intervention carried out in health or social care practices, and is an umbrella term, encompassing a range of terms/interventions, for example biography, life history, life stories. It is usually undertaken to elicit an account of some aspect of a person’s life or personal history that goes beyond a routine health assessment undertaken to plan care and treatment, and aims to have an impact on the care the person receives’ (McKeown et al, 2006, pp 238-239)
The concept of personhood is a fundamentally essential component in delivering person-centred care to people with dementia (Kitwood, 1997). Looking beyond the illness, changing people’s perceptions of people with dementia and seeing the person behind the illness is central to this ideation. Of the practical approaches utilised to facilitate this, the most commonly utilised and discussed is life story work.
Killick and Allan (2002) clearly demonstrate the power that life story work has in facilitating the notion of personhood posited by Kitwood (1997) through reflective accounts of their initial experiences of engaging with people with dementia during the completion of a series of life story projects:
‘They had suddenly become people in my eyes, and I was filled with empathy for them. Of course they themselves hadn’t changed at all. It was my perception which had been profoundly altered’ (Killick and Allan, 2002, pp 13-14)
This change in perception is immeasurably important and, through life story work, other potential benefits can ensue such as improved assessment, the building of relationships between care staff and family carers, improved communication and the promotion of more individualised care for people with dementia (Clarke, 2000;, Bryan & Maxim, 1998).
Despite life story work being generally accepted as creating some level of positive outcomes and that it may facilitate various potential benefits for people with dementia and those who are involved in their care, significant research in the area remains, in general terms, relatively uncommon (McKeown et al, 2006).
The majority of current research, although highlighting various potential benefits, encourages the completion of life story work and the development of documents such as ‘Getting to Know Me’. This has focussed on the experiences of staff who have been involved in life story projects and the impact it has had on their practice and the experiences of family members (McKeown et al, 2006). How completing life story work affects the person with dementia is under reported (McKeown et al, 2006).
McKeown et al (2010) have made progress in filling this gap and have added some rich data to this area of research, however, it could be suggested that accounts and participation from the people with dementia remain, to an extent, limited.
The majority of the cases discussed by McKeown et al (2010) are life story books that were led by family members rather than the person with dementia. It is acknowledged that this has several benefits, particularly if the person has short-term memory impairment; however, it is also important to ensure that the person with dementia has significant input in constructing life story work, throughout the process. This is their story and they should be involved, as much as is practically possible, from commencement to completion.
Furthermore, McKeown et al (2010) describe life story work as an opportunity for family members to ‘show’ the personhood of their relative. This is, again, a rich positive to culminate from the completion of life story work and enables care staff to appreciate the person behind dementia and improve their person-centred approach (McKeown et al, 2010), however, it may be argued that it is more important, and powerful, for the person with dementia to show their personhood.
Although McKeown et al (2010) interviewed key stakeholders and spent a significant amount of time in the field making observations and having conversations with people with dementia it could be suggested that certain elements of this process may present with some level of limitation. In particular, several of the semi-structured interview questions appear to be based more around the process of using life story work rather than how the person with dementia viewed the experience or benefitted from the experience itself, moreover the people with dementia involved in the project appear to not have been involved in the interview process, but perhaps most significantly, observations and conversations with people with dementia were recorded retrospectively. Despite this having potential benefits such as keeping the environment and interaction relaxed and natural there may be a possibility of missing or not reporting significant responses and reactions which occur.
The purpose of this research project is to add to the current data in the field of people with dementia and life story work and that recently captured by McKeown et al (2010). Specifically, it aims to delve deeper and really extrapolate how completing life story work affects people with dementia by directly interviewing, and recording live, a person with dementia investigating how they understood their experience of completing such a project. Additionally, key stake holders will also be interviewed to investigate how they believe completing life story work has affected the person with dementia. It is anticipated that some of the results will compliment and echo that of existing data but will add a richer account of how people with dementia experience completing life story work and how it may affect them. Additionally, it is envisaged that this may encourage and promote the completion of life story work with people with dementia, their families and carers, and voluntary, health and social care staff.
Aims & Objectives
Aims:
─ Critically assess the affect that completing life story work has on people with dementia and how this relates to person-centred care
Objectives:
─ Explore the current research on life story work and how it affects people with dementia
─ Investigate retrospective accounts from individuals with dementia who have completed life story work
─ Make recommendations as to how life story work can influence person-centred care
─ Relate findings to the ‘Getting to Know Me’ document
Methodology
This study will be a qualitative explorative investigation examining how completing life story work can affect people with dementia.
The study will take the form of conducting a series of semi-structured return interviews with a person with dementia who has already completed a life story book, a support worker who supports the person with dementia at their day centre, the person’s family and a dementia nurse involved in the person’s care and possibly other individuals involved in their care.
Semi-structured interviews will last a maximum of 1 hour and will be audibly recorded. Interactions with the person dementia may also be visually recorded to capture both verbal and non-verbal data for analysis. Considerations will be made at this point as to whether the presence of a video camera interferes with the authenticity and value of the interaction. During the interview with the person with dementia they will be encouraged to bring their life story book to aid and prompt discussion.
Raw data will be securely stored on an encrypted USB drive and only be viewed by the researcher and their supervisor.
Data will be transcribed, replacing participants’ names with randomised names to ensure anonymity, and analysed using Interpretative Phenomenological Analysis to focus on the participants’ understanding of the experience.
Knowledge Exchange StrategyThis piece of research will be shared with colleagues and professionals at the PROP2 Knowledge Exchange Event 2015 and be shared with the research participants. Findings will be disseminated to the research participants through a verbal debrief and feedback session as well as being issued with a summary document.
It is intended that this piece of research will be submitted to be considered for publication in an appropriate peer reviewed journal, shared online via several platforms for example Alzheimer Scotland’s national website and Dementia Managed Knowledge Network (MKN), presented at appropriate conferences and disseminated via leaflets and postcards outlining the findings for display in Alzheimer Scotland services, local hospitals, care homes, social service departments, local carers centres etc.
Ethical Considerations
There may be potential difficulties in obtaining informed consent from the person with dementia. The researcher does however have a working relationship with the intended participant and these difficulties are viewed to be at a minimum. If the researcher is in any doubt that the person with dementia does not fully understand the implications of participation an appropriate family member and/or their power of attorney will be asked to provide consent.
Other ethical concerns include discussing topics which may cause distress to the participants, such as discussing dementia and/or a reduction in a person’s abilities. The researcher will endeavour to minimise such distress, in the event of such distress it will be made clear that the interview can be stopped and the researcher will signpost the participants to appropriate services should they feel they require them.
Summary & Conclusion
The concept of personhood is a fundamentally essential component in delivering person-centred care to people with dementia (Kitwood, 1997). Looking beyond the illness, changing people’s perceptions of people with dementia and seeing the person behind the illness is central to this ideation. Of the practical approaches utilised to facilitate this, the most commonly utilised and discussed is life story work.
Despite a general agreement that life story work has the potential to elicit several possible benefits, research in this area remains limited (McKeown et al, 2006). There is a particular gap in research that looks at how life story work affects people with dementia with the majority of current research addressing how it may impact on staff and family members (McKeown et al, 2006).
McKeown et al (2010) has made a valuable contribution to reducing this gap in current research however, richer more detailed data which specifically investigates how life story works affects the person with dementia is required. This is the aim of this piece of research.
Findings from this research are hoped to significantly contribute to the growing body of data in this field, highlight potential benefits of completing life story work with people with dementia and encourage and promote its completion in family and professional contexts (such as a documents like ‘getting to know me’) to ultimately benefit people with dementia.
References
Bryan, K. & Maxim, J. (1998), Enabling Care Staff to Relate to Older Communication Disabled People, International Journal of Language & Communication Disorders, V. 33, pp.121-126.
Clarke, A. (2000), Using Biography to Enhance the Nursing Care of Older People, British Journal of Nursing, V. 12(5), pp. 967-706.
Killick, J. & Allan, K. (2002), Communication and the Care of People with Dementia, Open University Press.
Kitwood, T. (1997), Dementia Reconsidered: the person comes first, Open University Press.
McKeown, J., Clarke, A. & Repper, J. (2006), Life Story Work in Health & Social Care: systematic literature review, Journal of Advanced Nursing, V. 55(2), pp 237-247.
McKeown, J., Clarke, A., Ingelton, C., Ryan, T. & Repper, J. (2010), The Use of Life Story Work with People with Dementia to Enhance Person-Centred Care, International Journal of Older People Nursing, V. 5(2), pp 148-158.