Jane Wilcockson

Seeing need and developing care: exploring knowledge for and from practice

The use and creation of knowledge by practitioners is complex. There is a contemporary emphasis on the implementation of knowledge, or evidence, derived from outside the immediate practice environment. However, there is also an appreciation of the context-specific nature of practitioner knowledge that they use to inform patient care, and that is derived from their intimate contact with patients. This paper described one study that sought to analyse the impact of developments in practice on the wider professional and organisational community. Three case study sites were identified through a multidimensional sampling matrix, and interviews conducted with 41 practitioners of various organisational positions and professions. The primacy of context-specific, or proximal knowledge was highlighted, together with a manipulation of evidence and policy to fit understandings of local patient need.

Reframing risk management in dementia care through collaborative learning

Risk management is a complex aspect of practice which can lead to an emphasis on maintaining physical safety, which impacts on the well-being of people with dementia. Education for practitioners in risk management is particularly challenging because of its conceptual nature and diverse perceptions of risk between and within professional groups. The practice development research reported here formed one part of a multisite study and contributed to developing a risk assessment and management framework for use by practitioners in partnership with people with dementia and their families. Practice development research uses learning theories in the process of the research, and in so doing its intent is to not only create new knowledge but to view the research process as also a process of learning for those involved. Twenty practitioners from varying professions participated in five Collaborative Learning Groups, each of at least 2 hours duration, which were held over a 7-month period. Data analysis highlighted contradictions in the care system and in the professionals intention to practice in a person-centred way. These were expressed through the themes of: Seeking Certainty; Making Judgements; Team Working; Managing Complexity; Gathering and Using Information.

We're all thrown in the same boat ... : A qualitative analysis of peer support in dementia care

Peer support is well established in fields such as the disability movement and mental health and is increasingly recognised as one way of enabling support by and for people with a diagnosis of dementia and their immediate carers. It was central to the implementation of the National Dementia Strategy (NDS) for England, when 40 demonstration sites were established. This mixed-methods study included in-depth qualitative interviews with people living with dementia (n = 101) and staff/stakeholders (n = 82) at 8 of the 40 sites. Data analysis was a five-stage process: coding framework developed (using 25 transcripts); further development of the framework (using a further 70 transcripts); development of emerging themes; modelling of themes and verification of models based on the entire data set. Peer support had positive emotional and social impact that was rooted in identification with others, a commonality of experience and reciprocity of support. There was also a contrast between the quality of peer support and support from professionals. This emphasises the significance of lived experience and promoting a strength-based approach to interpersonal support that is enabling and challenges a deficit approach to understanding dementia.

Organisational Space for Partnership and Sustainability:: Lessons from the Implementation of the National Dementia Strategy for England.

National policy initiatives are faced with challenges in their partnership development and sustainability. The National Dementia Strategy for England recommended Dementia Adviser (DA) and Peer Support Network (PSN) services and 40 demonstration sites were established. In this paper, we report on the national evaluation of these demonstration sites, with specific reference to aspects of organisational development. The research used a mixed-methods design with three main strands: (i) activity and outcome monitoring; (ii) organisational surveys and collaborative discussion; (iii) in-depth case studies in eight of the 40 sites. This paper focuses primarily on three rounds of organisational surveys distributed to all 40 demonstration sites over a period of 21 months and interviews in the case studies. Data identify the significance of infrastructure within immediate services as well as the position of services within the external infrastructure of the wider health and social care landscape. Partnership - both internally and externally - was key to establishing and sustaining services that flourished. When working well, DAs and PSNs acted as a link between services and people with dementia at the same time as filling gaps in existing support, providing information, advice and interpersonal support that was tailored to individual needs and circumstances. In conclusion, to achieve the full potential and sustainability of services requires them to be in an organisational space that allows them to work in partnership and collaboration with other services, and that values their distinct knowledge of their communities.

I just want to get on with my life: a mixed-methods study of active management of quality of life in living with dementia

ABSTRACT The active management of the experience of living with dementia appears to improve quality of life despite the lack of disease modification. However, research to date has been largely of modest scale and explanatory factors for improvements have been under-conceptualised. Thus, although promulgated through national strategies, the evidence base is relatively weak. This paper reports on a nation-wide study of the influence of the National Dementia Strategy for England in relation to Dementia Adviser and Peer Support Network services in 40 demonstration sites. The research aimed to identify ways in which the services contribute to the wellbeing and resilience of people with dementia and care partners. A mixed-methods research design collected data through: activity and outcome monitoring; organisational surveys; in-depth case studies, including qualitative interviews with people with dementia (N = 47) and care partners (N = 54), wellbeing and quality of life measures, and interviews with staff and other stakeholders (N = 82). Three themes are explored: addressing individual and community needs; promoting independence, control and choice; and getting a life back. Services promoted independence, control and choice, and consequently enabled people to re-narrate their lives as purposeful within their communities. Ways in which these are achieved resemble the public health model of lay health advisor and this research adds to the imperative to approach dementia as a key public health concern.

Risk time framing for wellbeing in older people: a multi-national appreciative inquiry

Purpose The purpose of this paper is to explore the experience of older people and their sense of developing wellbeing, including consideration of the strategies they employ to respond to perceived risk. Design/methodology/approach An Appreciative Inquiry study was used, which collected data with 58 participants in focus group and individual interviews. Interviews focussed on ways in which older people in South Africa, Australia, Germany and the UK understand and seek to maintain wellbeing. Findings The changing time horizons of older people lead to perceptions of risk and concerns that embrace societal as well as individual concerns. Often, this leads to a sense of societal responsibility and desire for social change, which is frustrated by a perceived exclusion from participation in society. Social implications In mental health practice and education, it is imperative to embrace the shift from ageist concerns (with later life viewed as risky and tragic in itself) towards a greater sensitivity for older people’s resilience, the strategies they deploy to maintain this, and their desire for more control and respect for their potential to contribute to society. Originality/value Variation in time horizons leads to changes in temporal accounting, which may be under-utilised by society. Consequently, societies may not recognise and support the resilience of older people to the detriment of older people as individuals and to the wider society.

A Seat Around the Table: Participatory Data Analysis With People Living With Dementia:

The involvement of “people with experience” in research has developed considerably in the last decade. However, involvement as co-analysts at the point of data analysis and synthesis has received very little attention—in particular, there is very little work that involves people living with dementia as co-analysts. In this qualitative secondary data analysis project, we (a) analyzed data through two theoretical lenses: Douglas’s cultural theory of risk and Tronto’s Ethic of Care, and (b) analyzed data in workshops with people living with dementia. The design involved cycles of presenting, interpreting, representing and reinterpreting the data, and findings between multiple stakeholders. We explore ways of involving people with experience as co-analysts and explore the role of reflexivity, multiple voicing, literary styling, and performance in participatory data analysis.

Relational care and co-operative endeavour: Reshaping dementia care through participatory secondary data analysis

Dementia is emerging from the shadows of societal exclusion and stigma. The engagement within society for people who are marginalised is co-constructed through the everyday practices that take place between them and those around them. However, this is inherently political, positioning people as active and activist in the relationship of their lives with their communities. The research aimed to interrogate an existing qualitative dataset in partnership with people living with dementia to inform the development of a way of working with people with dementia that is empowering. In this qualitative secondary data analysis project, we (1) analysed data through two theoretical lenses: Douglas’ cultural theory of risk and Tronto’s Ethic of Care, and (2) co-analysed the data together with people living with dementia during 16 workshops. The design involved cycles of presenting, interpreting, representing and reinterpreting the data and findings between multiple stakeholders. We identified a granular understanding of the way relationships change for people with dementia and how subtle factors and nuanced behaviour contribute to social exclusion, or support social inclusion. The results support relational care through the co-operative endeavour (of co-operative communication, co-operative action and co-operative care) in promoting the inclusion of people living with dementia.