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’.

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 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.

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.

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 Recruiting hard to reach populations to studies: breaking the silence: an example from a study that recruited people with dementia

BMJ Open ◽  
2019 ◽  
Vol 9 (11) ◽  
pp. e030829
Author(s):  
Becky Field ◽  
Gail Mountain ◽  
Jane Burgess ◽  
Laura Di Bona ◽  
Daniel Kelleher ◽  
...  
Keyword(s):  
Secondary Analysis ◽  
Future Research ◽  
Specific Population ◽  
Research Experiences ◽  
Multiple Strategies ◽  
Successful Recruitment ◽  
People With Dementia ◽  
Diagnosis Of Dementia ◽  
Hard To Reach Populations ◽  
Person With Dementia

ObjectiveTo share the challenges of recruiting people with dementia to studies, using experiences from one recently completed trial as an exemplar.BackgroundResearch publications always cite participant numbers but the effort expended to achieve the sample size is rarely reported, even when the study involved recruiting a hard to reach population. A multisite study of a psychosocial intervention for people with dementia illustrates the challenges. This study recruited 468 ‘dyads’ (a person with dementia and a family carer together) from 15 sites but the time taken to achieve this was longer than originally estimated. This led to a study extension and the need for additional sites. Recruitment data revealed that certain sites were more successful than others, but why? Can the knowledge gained be used to inform other studies?MethodsSecondary analysis of routinely collected recruitment data from three purposefully selected sites was examined to understand the strategies used and identify successful approaches.FindingsAt all three sites, the pool of potential recruits funnelled to a few participants. It took two sites 18 months longer than the third to achieve recruitment numbers despite additional efforts. Explanations given by potential participants for declining to take part included ill health, reporting they were ‘managing’, time constraints, adjusting to a diagnosis of dementia and burden of study procedures.ConclusionsSuccessful recruitment of people with dementia to studies, as one example of a hard to reach group, requires multiple strategies and close working between researchers and clinical services. It requires a detailed understanding of the needs and perspectives of the specific population and knowledge about how individuals can be supported to participate in research. Experiences of recruitment should be disseminated so that knowledge generated can be used to inform the planning and implementation of future research studies.

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

scholarly journals 153Implementing Digital Life Story Work for People with Dementia: The Relevance of Context to User Experience

2017 ◽  
Vol 46 (Suppl_3) ◽  
pp. iii1-iii12 ◽  
Author(s):  
Laura O’Philbin ◽  
Bob Woods ◽  
Kathy Barham ◽  
Gill Windle
Keyword(s):  
User Experience ◽  
Life Story ◽  
People With Dementia ◽  
Story Work

Therapeutic Music Interventions to Support People With Dementia Living at Home With Their Family Caregivers

2019 ◽  
pp. 269-287
Author(s):  
Jeanette Tamplin ◽  
Imogen N. Clark
Keyword(s):  
Social Engagement ◽  
Self Awareness ◽  
Music Participation ◽  
Music Therapists ◽  
People With Dementia ◽  
Severe Stage ◽  
Musical Interactions ◽  
Diagnosis Of Dementia ◽  
Person With Dementia ◽  
At Home

Music can be used therapeutically in home and community settings throughout the trajectory of dementia. Communal singing experiences offer opportunities for music participation and social engagement that are accessible and enjoyable for people with dementia at any stage of severity. They also provide a means of communication and facilitate relationships between people with dementia and their carers through shared and meaningful musical interactions. In the early stages after a diagnosis of dementia, supported opportunities to sing together, along with the associated prospects for peer support and social interaction, may enable family carers to care for loved ones at home for as long as possible. In the later stages of dementia, singing may be the only way for the person with dementia to communicate and connect with others. Music processing capacities can be retained until the severe stage and music can stimulate memories and self-awareness for the person with dementia. Supported songwriting can be therapeutic for both people with dementia and their caregivers in facilitating emotional expression and acknowledging and validating feelings. This chapter explores the range of music participation opportunities available to people living with dementia at home with their caregivers at various stages of the disease. We also outline the differences in groups facilitated by music therapists and community musicians and highlight ways that caregivers can use music therapeutically in the home environment.

Hanging on to Some Autonomy in Decisionmaking: How do Spouse Carers Support this?

Dementia ◽  
2016 ◽  
Vol 18 (4) ◽  
pp. 1219-1236 ◽  
Author(s):  
Deirdre Fetherstonhaugh ◽  
Jo-Anne Rayner ◽  
Laura Tarzia
Keyword(s):  
Decision Making ◽  
Informal Care ◽  
Face To Face ◽  
People With Dementia ◽  
Diagnosis Of Dementia ◽  
Person With Dementia

In Australia, the majority of people with dementia live in the community with informal care provided by family, commonly a spouse. A diagnosis of dementia is a threat to one’s personhood and is often accompanied by perceptions of future dependency, which will involve the inability to carry out conventional roles and complete everyday tasks including making decisions. Being able to make decisions, however, is part of being a ‘person’ and it is through relationships that personhood is defined and constructed. In face-to-face interviews with seven couples (a carer and person with dementia dyad) and two spouse carers, this study explored why, and how, spouse carers support continued involvement in decision-making for people with dementia. The findings highlight the importance of loving and respectful relationships in the development of strategies to support continued decision-making for people with dementia.

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