The use of life story work with people with dementia to enhance person-centred care

mckeown j., clarke a., ingleton 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 5 , 148–158 Background. Person-centred care has been linked with quality of care but difficulties remain in person-centred care being implemented in care practice. This study explores the use of life story work to enhance person-centred care with people with dementia. Aims and objectives. The study investigates how life story work is: understood and developed in practice; experienced by all participants and affects the delivery and outcomes of care. Design and methods. The experience of older people with dementia, family carers and care staff in using life story work was explored within an NHS Health and Social Care Trust. A multiple case study design was adopted within a constructivist approach. Semi-structured interviews, observation, conversations were employed. Findings. Life story work has the potential to: enable care staff to see the person behind the patient; allow family carers to uphold their relatives’ personhood; enable the voice of the person with dementia to be heard, verbally and non-verbally; be enjoyable for all concerned and enable the person with dementia to feel proud about themselves and their lives. Conclusion and implications for practice. Life story work has the potential to enhance person-centred care for older people with dementia and their families. Taking a practice development approach ensures that life story work can be implemented sensitively and is sustained in practice.     

Using biography to enhance the nursing care of older people

This article describes how the use of the biographical approach in nursing practice should enable a fuller understanding of older people as individuals, based on their lived experience. This, in turn, should affect the way in which nurses work with, and care for, older people, encouraging person-centred practice. First, drawing on a life story, the article describes the ways in which people's accounts of their past lives may provide an insight into their present needs, priorities and aspirations; it also helps to reveal and challenge our assumptions about later life. Second, the article discusses why the biographical approach is particularly appropriate for the care of older people in continuing care settings and how this approach could be undertaken.     

Life story work in health and social care: systematic literature review

AIM: The aim of this paper is to review the literature on life story work in health and social care practice. BACKGROUND: Life story work as an intervention has been used with a number of health and social care clients, such as children people with learning disabilities, older people on medical wards and with older people who have dementia. It may help challenge ageist attitudes and assumptions, be used as a basis for individualized care, improve assessment, assist in transitions between different care environments, and help to develop improved relationships between care staff and family carers. However, to date there has been no attempt to collate the findings from published accounts. METHODS: A systematic search of the literature on life story work was conducted in February 2004, using nursing, medical and social science databases and a combination of thesaurus and free text search terms. This revealed over 1000 publications; the use of carefully constructed inclusion and exclusion criteria identified 51 relevant items. Fourteen were subsequently selected and reviewed using a set of reflective critical appraisal questions. FINDINGS: A range of methodological approaches has been adopted to explore the use of life story work with no one specific methodology prevailing. The work has been most frequently used with older people and people with a learning disability and life story books are the most common approach. Staff perceptions of life story work have been explored, but patient and carer views are less frequently reported. The findings of the studies are discussed in broad themes, offering some tentative recommendations for using life story work in practice. CONCLUSION: Evidence on the use of life story work is immature, leading to the recommendation for more research. Although appraising literature from a range of approaches is complex, there are some potentially far-reaching benefits of life story work in health and social care practice.     

Patient participation on a ward for frail older people

AIMS: The paper reports a study whose aims were to explore the meaning of participation for older people in hospital and their health care workers and ways in which staff can enhance patient participation in their care. BACKGROUND: Participation in care is a concept that is central to nursing practice. However, little is known about patient and staff views of participation and how it takes place in practice. METHODS: Action research was used, and data were collected by means of focus groups and in-depth interviews. Three focus groups and 24 interviews were undertaken with staff, and 19 interviews were undertaken with patients. The main action undertaken with staff aimed at raising their awareness of participation. In addition small changes in practice were introduced, such as the use of a patient biographical booklet. FINDINGS: The findings suggest that participation is a dynamic process that is integral to the work of nurses and carers. The process is enacted through the themes of facilitation, partnership, understanding the person, and emotional work. CONCLUSION: The study demonstrates how nurses can become increasingly aware of the potential for facilitation and creation of opportunities for participation. It is crucial that practitioners working with older people develop a deeper understanding of participation and are also empowered to act in ways that fit with the needs of this specific client group.     

Sliding doors: Did drama-based inter-professional education improve the tensions round person-centred nursing and social care delivery for people with dementia: A mixed method exploratory study

This educational intervention takes place when the population of older people with dementia is increasing. Health and Social care professionals must work jointly in increasingly complex contexts. Negative attitudes towards older people are cited as a contributor to poor care delivery, including the use of dismissive and/or patronising language, failing to meet fundamental needs and afford choice. ‘Sliding Doors to Personal Futures’ is a joint, drama-based, educational initiative between NHS Education Scotland and the Scottish Social Services Council, delivered using interprofessional education (IPE) towards encouraging person-centred health and social care.This paper considers whether ‘Sliding Doors’ had an impact on social work and nursing students' attitudes to older people, person-centred care and interprofessional collaboration. Two groups of third year students were studied; one from nursing and one from social work. A mixed methods approach was taken and attitudes and attitudinal shifts measured and discussed.Quantitative results demonstrated that social work students made positive attitudinal shifts in some questionnaire items and collectively the social work students were more person-centred than nursing students in their care approaches. The qualitative data however, drawn from focus groups, illuminated these results and highlighted the link between the ability for a professional to be person-centred and the conceptual view of risk within the particular profession. Risk acceptance, the theoretical position of social work, may facilitate person-centred care, whereas the perceived risk-averse nature of the nursing profession may inhibit it. Students' attempts to understand the quantitative results, without understanding the restrictions and parameters of each other's profession, led them to revert to stereotypes and negative views of each other as practitioners.The paper concludes that there is an important difference between nurses' and social workers' frames of reference. It is suggested that IPE in its current form will not impact positively on outcomes for older people, unless both professions can openly acknowledge the reality of their professional contexts and develop an understanding of each other's professional restrictions, opportunities and aspirations.     

Using drama to improve person-centred dementia care

kontos p.c., mitchell g.j., mistry b. & ballon b. (2010) Using drama to improve person-centred dementia care. International Journal of Older People Nursing 5 , 159–168 Aims and objectives. We implemented a 12-week drama-based educational intervention to introduce to dementia practitioners person-centred care that emphasizes the notion of embodied selfhood (defined as non-verbal self-expression). Background. Person-centred dementia care guidelines emphasize the assessment of individual needs, and where appropriate, the use of non-pharmacological interventions before resorting to pharmacological management. However, dementia care is not consistent with these guidelines suggesting conceptual limitations and reliance on passive knowledge translation strategies. Design and methods. Focus groups and semi-structured interviews with practitioners (n = 24) in two nursing homes in central Canada were undertaken to assess the effectiveness of the drama-based components of the intervention. Results. Our findings suggest that drama was effective as an educational modality, and helped implement the person-centred approach into practice. Significant practice outcomes included: new awareness that residents’ body movements and dispositions can convey meaning; seeking biographical information from families; increased time efficiency; and supporting residents’ independence. Conclusions. Our findings make an important contribution to person-centred dementia care by broadening the notion of personhood, and by facilitating implementation using drama. Implications for practice. As an enhancement of person-centred care, the support of embodied selfhood may significantly improve residents’ quality of life, quality of care, and practitioners’ care-giving experience.     

Older people actively reconstruct their life in a care home

The research reported here aimed to present the stories of care home residents through an interpretative study that was informed by a biographical approach and narrative method. Eight older people who lived in four different care homes in England participated in a sequence of up to eight narrative interviews over a six month period. The findings revealed how the older people tried to live as active biographical agents who were instrumental in shaping their own life in a care home. They were able to do this to a greater or lesser extent through the implementation of a range of resident-led strategies. The understanding of care home life that was developed through this study offers an alternative biography for living in care homes that is not only possible but achievable. This is a biography of frail older people who are active in reconstructing their life following the move to a care home, and living lives that are meaningful, purposeful and enjoyable. This sits in contrast to the standard biography that dominates current understanding of care home life that of older people merely 'existing' for the most part of their days. This image provides a vision for long-term care for older people, which is grounded in the views and aspirations of older people.     

How person-centred care can improve nurses' attitudes to hospitalised older patients

The relationship between the attitudes and behaviours of nurses and the resulting care that they provide to older people is explored. It aims to raise nurses' awareness and encourages them to reflect on their personal values and behaviours. The person-centred framework developed by McCormack and McCance (2010) is presented as one approach to improve care. The biographical approach (Clarke et al 2003) is also described as a means to enable nurses to see patients as people first and place them at the heart of health care.     

The fragmented story of pain: a saga of economic discourse, confusion and lack of holistic assessment in the residential care of older people

The long-standing problem of overlooked and/or undertreated pain experienced by so many older people living in Australian residential care facilities condemns these people to a life robbed of quality. Such a degree of suffering experienced by older people calls into question the pain assessment skills of staff who work in residential care. However, the problem of undetected and unresolved pain experienced by older people is not simply a skill or knowledge issue. It is much broader than that. In this paper we portray pain as likened to a story; a narrative that only the older person, as the author, can impart and one in which only they can communicate their experience of pain. Nevertheless, as opposed to seeking the older person's pain narrative, nurses attempt to measure the immeasurable. In part, their actions relate to the confusing terminology which envelops pain assessment. However, political policy and economic discourse also influences nurses' pain assessment practises to the detriment of older people and the profession of gerontological nursing. Discussion in this paper includes the experience of pain for the older person, an overview of the specific role of pain-screening tools compared with the requirements of a person-centred pain assessment, and person-centred pathways to help nurses and others interpret and heed the older person's pain story. Analysis also incorporates the argument that current and previous Federal Government funding tools for residential care subtly impact on holistic pain assessment causing confusion for caregivers and fragmentation of the older person's pain story.     

Nursing older people: constructing need and care

As the population of the world 'ages', older people are increasingly viewed as a 'problem' whose needs challenge the resources of care services. However, this view is predicated on the negative and nihilistic attitudes that are held throughout society about older people and the effectiveness of therapeutic intervention. It is these pessimistic views which colour professional understandings of the needs of older people and the most appropriate ways of delivering care to meet those needs. However, any knowledge of need and care is a constructed story, and is limited by the knowledge base on which it rests. For example, western healthcare is dominated by an orientation to identified problems, the minimizing of physical risk or harm, and a reductionalist approach to problem solving. A social critical challenge to prevailing understandings of need and care produces a very different story about older age; one which emphasizes an individual's strengths and their family and community relationships. In exploring these issues in policy and practice two key areas are highlighted. One is the role of critical gerontology in challenging the stories of negativity about old age, and replacing these with positive stories that allow older people to retain their social purpose. The second key area is the need to address issues of older age at both a practice and policy level, and to understand the interrelationship between them.     

A model of independence for children with learning disabilities

This article outlines the work undertaken to find a suitable model for planning respite care for children with disabilities. The model 'This is Me' and the informal life events assessment tool 'Hello, This is Me!', which supports it, are described. The use of a person-centred care planning system is well documented in the care of adults with learning disabilities (Sanderson, 1997). This process should begin at the start of a person's life, as recommended by The Children Act 1989, and the documents 'Signposts for Success' (NHS Executive, 1998) and 'Don't Forget Us' (Mental Health Foundation, 1997). The article describes the development of a person-centred approach to respite care which is underpinned with a basic care premise.     

Aggressive behaviour by people with dementia in residential care settings: a review

This paper considers the phenomenon of aggressive behaviour perpetrated by people with dementia in residential care settings. Aggressive behaviour is defined in the context of people with dementia, and the problem of ascertaining the incidence of aggression among people with dementia is discussed. The emotional impact of assaults on nurses and other professionals is highlighted, and differing perspectives on the causation of aggressive behaviour are considered. Management strategies derived from the physical/pharmacological; environment management; behaviour modification and person-centred approaches are reviewed. Our conclusion is that while certain strategies appear to reflect good and common sense practice, in particular those deriving from the person-centred approach, there is no clear research evidence for the general effectiveness of any one management approach, and each has drawbacks of a practical or ethical nature. There is also little empirical information about how professional carers actually manage aggressive behaviour in practice.     

Using life story work to enhance care

Life story work has been promoted as a tool to enhance the care provided to older people, particularly those with dementia. The benefits for individuals, families and/or friends and for staff include improving understanding of the individual, promoting relationships and assisting in the delivery of person-centred care. However, professionals often experience difficulties using life story work. This article considers a range of life story tools and advice on gathering information about a person. It highlights the importance of leadership and developing positive cultures to ensure that life story work can be effectively sustained.     

Enhancing autonomy for older people in residential care: what factors affect it?

As the population ages, the expectations of consumers rise and future care provision for older people will demand that autonomy is operationalised in residential care facilities. This paper looks at international publications related to identifying the factors which facilitate or hinder residents autonomy and directs the reader to reflect on their own custom and practice. There are many factors which both facilitate and hinder the level of autonomy which older people experience in residential care. This paper will discuss the three most pertinent factors that are discussed repeatedly in the literature, and they are as follows: the organisations approach to care, person-centred care and life planning.     

Supporting family carers using interative multimedia

ACTION (Assisting Carers using Telematic Interventions to meet Older persons' Needs) is a nursing led Pan-European project (1997-2000). Its primary aim is to maintain the autonomy, independence and quality of life of frail older and disabled persons and their family carers by the application of telematic technology. This article describes the development of two multimedia programmes created as part of the ACTION project. Programme 1 'Planning ahead' helps family carers and frail older people to think about and plan for the future. Programme 2 'Break from caring' assists carers and older people to explore the range of respite care options available. Both programmes have been developed using a multimethod, user-centred approach. Preliminary evaluation data have indicated that frail older people and their carers have used the programmes to assist them when making difficult decisions such as selecting a nursing home, or exploring the use of respite care facilities.     

What constitutes good care for people with dementia?

Person-centred care for people with dementia is an aspiration of both family and professional carers, but what constitutes person-centred care and how it can be achieved is less clear. This article describes a Swedish study in which in-depth interviews were completed with both family and professional carers of people with dementia with the purpose of exploring what they considered to be "best care". Important areas of similarity and difference were identified and the results suggest that both groups of carers need to work closely together if person-centred care is to become a reality.     

Explanatory models of dementia: links to end-of-life care

We will describe four models used to understand dementia: as a neurological condition; as a neuro-psychiatric condition; as a normal part of ageing; and seeing dementia from a person-centred perspective. Adopting the last of these allows an engagement with palliative care that has the potential to enrich the end-of-life experience of people with dementia, of their families and of the professional care staff who work with them. In this article, it will be argued that our perceptions of what is possible for practising person-centred care at the end of life are constrained by the paradigms we work within. There is developing evidence about how approaches to end-of-life care for people with dementia can move beyond what was, at best, therapeutic pessimism and at worst ill-treatment towards something that optimizes the capacities of those with dementia and mobilizes imaginative care practice.     

Impact of community care in enabling older people with complex needs to remain at home

Aim.  This aim of the study was to explore the impact of community care in enabling older people with complex needs to remain at home.
Background.  Changing demographic trends and successive government policies have led to an increase in the number of older people with complex needs residing in the community.
Design.  A qualitative approach using semi-structured interviews was used to collect data from older people ( n  = 17) and carers ( n  = 14).
Method.  Social workers were asked to identify community dwelling older people (65+ years) with multiple needs requiring interventions from a range of health and social care practitioners.
Results.  Community care enabled older people with complex needs who would otherwise have required residential or nursing home care to remain in their own homes. This was the expressed wish of both the older people and carers interviewed.
Conclusions.  The provision of high-quality community care for older people is a globally significant challenge and one that requires creative solutions, both at a local and strategic level.
Relevance to clinical practice.  Nurses and other health and social care professionals need to understand the significance of 'home' for older people and take steps to ensure that additional and appropriate resources are targeted towards community care.     

Exploring the usefulness of a recovery-based approach to dementia care nursing

Exploring new approaches to dementia care nursing is vital to enable services to cope with the expected rise in demand for healthcare due to an ageing population. A comparison between the current person-centred care approach in aged care and recovery-based approach that underpins mental health nursing was reviewed in the literature to determine which is more useful to dementia care nursing. The recovery model is the conceptual framework that underlies the recovery-based approach. It broadens the current person-centred care approach through the fostering of hope, facilitative rather than directive care, and enhances autonomy. This promotes positive outcomes for older people with dementia through empowerment to make choices in the way they wish to live within the community. This essay proposes that the recovery-based approach is more useful to dementia care nursing than person-centred models.