scholarly journals Exploring good practice in life story work with people with dementia: The findings of a qualitative study looking at the multiple views of stakeholders

Dementia ◽  
2018 ◽  
Vol 19 (2) ◽  
pp. 182-194 ◽  
Author(s):  
Kate Gridley ◽  
Yvonne Birks ◽  
Gillian Parker
Keyword(s):  
Focus Groups ◽  
Life Story ◽  
Good Practice ◽  
Family Carers ◽  
People With Dementia ◽  
Practice Approach ◽  
Story Work ◽  
The Individual ◽  
Person With Dementia ◽  
Design And Methods

Introduction Despite growing international interest in life story work as a tool for person-centred dementia care, there is little agreement on what constitutes good practice and little evidence from the perspectives of people with dementia or their family carers. Design and methods This paper reports the findings from the qualitative element of a larger study looking at the feasibility of evaluating life story work. Ten focus groups were held with 73 participants: four groups of people with dementia (25 participants); three with family carers (21 participants); and three with staff, professionals and volunteers with experience of life story work (27 participants). Findings: It became apparent through our focus groups that, when people talk about ‘life story work’, different people mean different things. This related to both process and outcomes. In particular, a person with dementia may have very different views from others about what life story work is for and how their life story products should be used. There was general agreement that a good practice approach would be tailored to the individual needs and preferences of the person with dementia. However, in practice many settings used templates and the process was led by staff or completed by family carers. Conclusion We produced nine key features of good practice which could be used to guide the life story work process. Key elements include the recognition that not everyone will want to take part in life story work and that some people may even find it distressing; the importance of being led by the person with dementia themselves; the need for training and support for staff, carers and volunteers; and the potential for life story work to celebrate the person’s life today and look to the future.

Person- and relationship-centred dementia care

2020 ◽  
pp. 233-248
Author(s):  
John Keady ◽  
Mike Nolan
Keyword(s):  
Life Story ◽  
Care Home ◽  
Theoretical Development ◽  
People With Dementia ◽  
Global Issue ◽  
Diagnosis Of Dementia ◽  
Working Together ◽  
The Senses ◽  
Story Work ◽  
Person With Dementia

Dementia is a global issue experienced on an individual and relational level. This chapter traces the emergence of both person-centred care and relationship-centred care, with the latter approach expressed through the Senses Framework. The Framework outlines the theoretical development and practical application of the Senses [security, belonging, continuity, purpose, achievement, significance] and highlights the importance of staff, carer, and [in this chapter] person with dementia all working together. This chapter describes the application of the Senses Framework to a recent practice development study set in a care home for people with dementia and shows how the study used a combination of the Senses and life story work to create an ‘enriched’ environment. The chapter concludes with a discussion about how the Senses can be used to facilitate an early diagnosis of dementia and to help people with dementia and their families to engage with a life ‘outside the front door’, termed ‘The Neighbourhood Space’.

scholarly journals ‘You have to be mindful of whose story it is’: The challenges of undertaking life story work with people with dementia and their family carers

Dementia ◽  
2013 ◽  
Vol 14 (2) ◽  
pp. 238-256 ◽  
Author(s):  
Jane McKeown ◽  
Tony Ryan ◽  
Christine Ingleton ◽  
Amanda Clarke
Keyword(s):  
Life Story ◽  
Family Carers ◽  
People With Dementia ◽  
Story Work

The impact of life story work on person-centred care for people with dementia living in long-stay care settings in Ireland

Dementia ◽  
2018 ◽  
Vol 18 (7-8) ◽  
pp. 2731-2746 ◽  
Author(s):  
Adeline Cooney ◽  
Eamon O’Shea
Keyword(s):  
Registered Nurses ◽  
Healthcare Professionals ◽  
Life Story ◽  
Dementia Care ◽  
People With Dementia ◽  
Constant Comparative ◽  
Story Work ◽  
Person With Dementia ◽  
The Impact ◽  
Depth Interviews

The potential of life story work to add quality to dementia care is widely acknowledged. Whether this potential is always realised in practice and under what circumstances is less clear. This paper explores whether knowing the person’s life story enhances healthcare professionals’ understanding of the person with dementia and whether this understanding impacts on the person’s care. In-depth interviews were conducted with 11 registered nurses and 12 healthcare assistants who had used life story work with people with dementia living in long-stay care settings. Data were analysed using the constant comparative technique. Engaging in life story work enabled staff to see the person behind the dementia. Understanding (as opposed to knowing) the person with dementia’s life story changed staff’s thinking on what is important when delivering care to people with dementia, with staff giving concrete examples of changes in how they delivered care to the person with dementia and what they considered important when delivering that care. It was concluded that life story work can facilitate a shift to person centred dementia care but how it is implemented matters if this outcome is to be achieved.

Person- and relationship-centred dementia care: past, present, and future

2013 ◽  
Author(s):  
John Keady ◽  
Mike Nolan
Keyword(s):  
Life Story ◽  
Care Home ◽  
Theoretical Development ◽  
People With Dementia ◽  
Global Issue ◽  
Diagnosis Of Dementia ◽  
Working Together ◽  
The Senses ◽  
Story Work ◽  
Person With Dementia

Dementia is a global issue but is experienced at an individual and relational level. This chapter traces the emergence of both person centred care and relationship centred care with the latter approach expressed through the Senses Framework. The theoretical development and practical application of the Senses [security, belonging, continuity, purpose, achievement, significance] are outlined highlighting the importance of staff, carer and person [with dementia in this chapter] all working together. The application of the Senses Framework to a recent practice development study set in a care home for people with dementia that used a combination of the Senses and life story work to create an 'enriched environment is then described. The chapter concludes with a discussion about how the Senses can be used to facilitate an early diagnosis of dementia and to help people with dementia and their families to engage with a life ‘outside the front door’, what we term ‘The Neighbourhood Space’.

scholarly journals Theatre production: a positive metaphor for dementia care-giving

2021 ◽  
pp. 1-16
Author(s):  
Christine Brown Wilson ◽  
Jan Hinson ◽  
Jacinda L. Wilson ◽  
Stephanie Power ◽  
Daniel Hinson ◽  
...  
Keyword(s):  
Central Character ◽  
Family Carers ◽  
Structured Interviews ◽  
Face To Face ◽  
Care Giving ◽  
People With Dementia ◽  
Theatre Production ◽  
Fresh Perspective ◽  
The Individual ◽  
Person With Dementia

Abstract Language can shape and reinforce attitudes and stereotypes about living with dementia. This can happen through use of metaphors. However, common metaphors may not capture the complexity of experience of dementia from the perspective of the individual person or a family carer. This paper presents an alternative metaphor – that of a theatre production – based on the strategies used by carers to support people with dementia to live well in the community. We conducted face-to-face semi-structured interviews with 12 family members caring for someone with dementia in the community in Queensland, Australia. Our aim was to explore the strategies these carers used to provide support. Interview recordings were fully transcribed and thematically analysed. We identified positive care-giving strategies that described multiple roles that carers fulfilled as they felt increasingly responsible for day-to-day decision making. Family carers explained how they supported the person with dementia to remain a central character in their life and continued to support the person to be themselves. To achieve this, family carers embodied roles that we identified as similar to roles in a theatre production: director, stage manager, supporting cast, scriptwriter, and costume designer and wardrobe manager. Our metaphor of a theatre production offers a fresh perspective to explore the experience of informal care-giving in the context of dementia.

Using a systematic review to uncover theory and outcomes for a complex intervention in health and social care: a worked example using life story work for people with dementia

2020 ◽  
Vol 25 (4) ◽  
pp. 265-277 ◽  
Author(s):  
Gillian Parker ◽  
Kate Gridley ◽  
Yvonne Birks ◽  
Julie Glanville
Keyword(s):  
Systematic Review ◽  
Complex Intervention ◽  
Life Story ◽  
Good Practice ◽  
Dementia Care ◽  
Care Staff ◽  
People With Dementia ◽  
Causal Pathway ◽  
Health And Social Care ◽  
Story Work

Objectives Life story work involves gathering information about a person, their history and interests, and producing a tangible output, usually a book. It is used increasingly in dementia care. However, theory about if, how, and why it affects outcomes is poorly developed, making the choice of evaluation methods and appropriate outcomes difficult. This article uses a systematic review to uncover theories of change and outcomes for life story work in dementia care. We describe the methods and their use in identifying appropriate outcomes for evaluative research, and their potential for improving evaluation of ‘theory poor’ interventions. Methods A systematic review, carried out using Centre for Reviews and Dissemination guidelines, searched for evidence on underlying theory, good practice, and effectiveness of life story work to inform a feasibility study for the formal evaluation of life story work in dementia care. For the theory element, a ‘landscaping review’ analysed the extracted text, using qualitative techniques and mind maps to uncover both explicit and implicit causal links between life story work and outcomes. We triangulated the review findings with qualitative research, which used focus groups with people with dementia, caregivers, and professionals that explored the outcomes that they would like to see from life story work. Results Of the 56 publications reviewed, only 16 were useful for the theory analysis. Six overarching outcomes were identified: the self-worth and empowerment of people with dementia, individual psychological outcomes, improved relationships between care staff and the individual with dementia, better care, more effective engagement of family members/carers within the care setting, and helping carers to cope. Twelve final theories linking these outcomes to life story work via a causal pathway were elicited. There was substantial overlap in the outcomes identified by the review and by carers, people with dementia, and professionals. Together, the results informed our choice of outcome measures for the pilot evaluation. Conclusions This approach may enable researchers to identify and develop the theory necessary before evaluation of a complex intervention in other under- or un-theorized areas. It has the potential both to shorten development stages (and thereby costs) in intervention research and improve the intervention itself.

scholarly journals Life story resources in dementia care: a review

2014 ◽  
Vol 15 (3) ◽  
pp. 151-161 ◽  
Author(s):  
Jacqueline Kindell ◽  
Simon Burrow ◽  
Ray Wilkinson ◽  
John David Keady
Keyword(s):  
Life Story ◽  
Dementia Care ◽  
Future Directions ◽  
Content Type ◽  
Informal Activity ◽  
People With Dementia ◽  
Health And Social Care ◽  
Story Work ◽  
Staff Intervention ◽  
Person With Dementia

Purpose – Life story work has a relatively long tradition in the caring sciences and is recognised as an important component of dementia care and practice. However, to date, there has not been a review of accessible life story resources. The paper aims to discuss these issues. Design/methodology/approach – Following a systematic approach to identification and inclusion, 11 life story resources were reviewed to ascertain areas of commonality and divergence between the materials. Findings – The authors were able to group the analysis under eight areas and at the end of this process, it was uncertain if life story work is a formal staff intervention or an informal activity that people with dementia and their families could engage in. Resources also varied in terms of whether the life story information was organised in a chronological way, or with topics of interest/discussion or with a combination of both. Life story evaluation and its impact on the life of the person with dementia is in need of development. Practical implications – Across the resources the authors identified four reasons to do life story work which the authors have named as: emotional connections; interactional connections; building new connections and practical care connections. Social implications – There was limited guidance aimed at helping people with dementia to develop and compile their own life story. Originality/value – This paper provides new insights into the usefulness, future directions and content of life story resources in dementia care. It will be of interest to those in health and social care as well as people living with dementia.

scholarly journals The Paradox of Dementia and Driving Cessation: “It’s a Hot Topic,” “Always on the Back Burner”

2020 ◽  
Vol 60 (7) ◽  
pp. 1261-1272
Author(s):  
Elaine Stasiulis ◽  
Mark J Rapoport ◽  
Brintha Sivajohan ◽  
Gary Naglie
Keyword(s):  
Family Carers ◽  
Driving Cessation ◽  
Ongoing Research ◽  
Staff Members ◽  
Social And Emotional ◽  
People With Dementia ◽  
Study Results ◽  
Canadian Provinces ◽  
The Individual ◽  
Context Specific

Abstract Background and Objectives Despite the well-recognized difficulty that persons with dementia and family carers experience in the decision making and transition to nondriving, there are few interventions and resources to support them. As part of our ongoing research to develop a driving cessation toolkit that addresses this gap, we sought to examine the context-specific factors relevant to its effective implementation in settings that support older adults with dementia. Research Design and Methods A qualitative descriptive approach was used to explore the perspectives of Alzheimer Society (AS) staff in their work of supporting people with dementia and family carers within the context of driving cessation. Individual in-depth interviews were conducted with 15 AS staff members in 4 Canadian provinces. Data were examined using interpretative thematic analysis. Results The study results revealed an overarching paradox that despite the importance of driving cessation in people with dementia, it continues to be largely avoided at the individual and system levels. This is explored via the themes of (a) paradox of importance and avoidance identified in AS settings; (b) lack of awareness and understanding about dementia and driving among people with dementia and family carers; (c) distress and avoidance rooted in ongoing system issues; and (d) moving driving cessation to the “front burner.” Discussion and Implications Viewed through the emerging social health paradigm, which focuses on the social and emotional consequences of dementia, our results highlight the urgent need to mobilize our communities, medical education systems, and transportation authorities to finally resolve the dementia and driving cessation paradox.

Advance care planning in different settings for people with dementia: A systematic review and narrative synthesis

2019 ◽  
Vol 17 (6) ◽  
pp. 707-719 ◽  
Author(s):  
Adele J. Kelly ◽  
Tim Luckett ◽  
Josephine M. Clayton ◽  
Liam Gabb ◽  
Slavica Kochovska ◽  
...  
Keyword(s):  
Systematic Review ◽  
Advance Care Planning ◽  
Future Research ◽  
Care Planning ◽  
People With Dementia ◽  
Future Care ◽  
Advance Care ◽  
Surrogate Decision ◽  
The Individual ◽  
Person With Dementia

AbstractBackgroundAdvance care planning (ACP) is identified as being an important process for people with dementia. However, its efficacy for improving outcomes relevant for the individual, carers and the health system has yet to be established.AimWe conducted a systematic review with the aims of testing the efficacy of ACP for people with dementia and describing the settings and population in which it has been evaluated.MethodsA search was completed of electronic databases in August 2016. Articles were included if they described interventions aimed at increasing planning for future care of people with dementia, delivered to the person with dementia, their carers and/or health professionals.ResultsOf 4,772 articles returned by searches, 30 met the inclusion criteria, testing interventions in nursing home (n= 16) community (n = 10) and acute care (n = 4) settings. Only 18 interventions directly involved the person with dementia, with the remainder focusing on surrogate decision-makers. In all settings, interventions were found effective in increasing ACP practice. In nursing homes, ACP was found to influence care and increase the concordance between end of life wishes and care provided. Interventions in the community were found to improve patient quality of life but were not shown to influence concordance.ConclusionFuture research should focus on ways to involve people with dementia in decision-making through supported means.

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