Co-creativity: possibilities for using the arts with people with a dementia

Purpose The purpose of this paper is to explore the concept of co-creativity in relation to artistic practice with people with a dementia. The aim of the discussion is to outline how co-creativity offers fresh approaches for engaging artists and people with dementia, can contribute to less restrictive understandings of “creativity” and above all, expand the understanding of people with a dementia as creative, relational and agential. Design/methodology/approach In order to examine current conceptions of co-creativity and to inform the artistic practice, relevant literature was explored and eight expert interviews were conducted. The interviews were thematically analysed and are included here. Findings This paper consequently demonstrates that improvisation, structure, leadership and equality are central elements of co-creative processes and outlines how co-creativity can offer fresh insights into the way in which the arts can engage people with a dementia, the relationship between creativity and dementia and the transformative potential of the co-creative arts for those living with a dementia. Research limitations/implications The paper discusses some of the difficulties that are inherent a co-creative approach, including power relations and the limitations of inclusivity. Due to ethical restrictions, the paper is limited by not including the perspectives of people living with a dementia. Practical implications This paper paves the way for future research into co-creative processes in a variety of different contexts. Social implications A more nuanced understanding of co-creativity with people with dementia could challenge the dominant biomedical and social paradigms that associate “dementia” with irretrievable loss and decline by creating opportunities for creative agency. Originality/value This exploration of co-creativity with people with dementia is the first of its kind and contributes to the wider understanding of co-creativity and co-creative practice

Broadening and deepening the understanding of agency in dementia

Agency has become an essential component of discussions concerning selfhood, well-being, and care in dementia studies but the concept itself is rarely clearly defined and the use of this term can be confusing and conflicting. This paper outlines some of the key ways in which agency has been conceptualised in relation to dementia, highlighting the complexities surrounding this concept and focusing on agency in a way that is tied to our ideas about citizenship, legal and human rights. Seven key dimensions of agency are examined: embodiment, emotions, sense of agency, intentional conscious action, the social context of agency, decision making and moral responsibility. Using a critical realist approach, this paper brings together the diverse ways in which agency has been understood into an interdisciplinary, laminated understanding of agency. This model is then used in an applied example demonstrating that this model can be used to identify the ways in which an arts intervention can support the agency of people living with dementia. This paper proposes that agency is layered, multidimensional and exists on a continuum

The Development of Videoconference-Based Support for People Living With Rare Dementias and Their Carers:Protocol for a 3-Phase Support Group Evaluation

BACKGROUND: People living with rarer dementias face considerable difficulty accessing tailored information, advice, and peer and professional support. Web-based meeting platforms offer a critical opportunity to connect with others through shared lived experiences, even if they are geographically dispersed, particularly during the COVID-19 pandemic. OBJECTIVE: We aim to develop facilitated videoconferencing support groups (VSGs) tailored to people living with or caring for someone with familial or sporadic frontotemporal dementia or young-onset Alzheimer disease, primary progressive aphasia, posterior cortical atrophy, or Lewy body dementia. This paper describes the development, coproduction, field testing, and evaluation plan for these groups. METHODS: We describe a 3-phase approach to development. First, information and knowledge were gathered as part of a coproduction process with members of the Rare Dementia Support service. This information, together with literature searches and consultation with experts by experience, clinicians, and academics, shaped the design of the VSGs and session themes. Second, field testing involved 154 Rare Dementia Support members (people living with dementia and carers) participating in 2 rounds of facilitated sessions across 7 themes (health and social care professionals, advance care planning, independence and identity, grief and loss, empowering your identity, couples, and hope and dementia). Third, a detailed evaluation plan for future rounds of VSGs was developed. RESULTS: The development of the small groups program yielded content and structure for 9 themed VSGs (the 7 piloted themes plus a later stages program and creativity club for implementation in rounds 3 and beyond) to be delivered over 4 to 8 sessions. The evaluation plan incorporated a range of quantitative (attendance, demographics, and geography; pre-post well-being ratings and surveys; psycholinguistic analysis of conversation; facial emotion recognition; facilitator ratings; and economic analysis of program delivery) and qualitative (content and thematic analysis) approaches. Pilot data from round 2 groups on the pre-post 3-word surveys indicated an increase in the emotional valence of words selected after the sessions. CONCLUSIONS: The involvement of people with lived experience of a rare dementia was critical to the design, development, and delivery of the small virtual support group program, and evaluation of this program will yield convergent data about the impact of tailored support delivered to geographically dispersed communities. This is the first study to design and plan an evaluation of VSGs specifically for people affected by rare dementias, including both people living with a rare dementia and their carers, and the outcome of the evaluation will be hugely beneficial in shaping specific and targeted support, which is often lacking in this population. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/3537

The Development of Videoconference-Based Support for People Living With Rare Dementias and Their Carers: Protocol for a 3-Phase Support Group Evaluation

BACKGROUND: People living with rarer dementias face considerable difficulty accessing tailored information, advice, and peer and professional support. Web-based meeting platforms offer a critical opportunity to connect with others through shared lived experiences, even if they are geographically dispersed, particularly during the COVID-19 pandemic. OBJECTIVE: We aim to develop facilitated videoconferencing support groups (VSGs) tailored to people living with or caring for someone with familial or sporadic frontotemporal dementia or young-onset Alzheimer disease, primary progressive aphasia, posterior cortical atrophy, or Lewy body dementia. This paper describes the development, coproduction, field testing, and evaluation plan for these groups. METHODS: We describe a 3-phase approach to development. First, information and knowledge were gathered as part of a coproduction process with members of the Rare Dementia Support service. This information, together with literature searches and consultation with experts by experience, clinicians, and academics, shaped the design of the VSGs and session themes. Second, field testing involved 154 Rare Dementia Support members (people living with dementia and carers) participating in 2 rounds of facilitated sessions across 7 themes (health and social care professionals, advance care planning, independence and identity, grief and loss, empowering your identity, couples, and hope and dementia). Third, a detailed evaluation plan for future rounds of VSGs was developed. RESULTS: The development of the small groups program yielded content and structure for 9 themed VSGs (the 7 piloted themes plus a later stages program and creativity club for implementation in rounds 3 and beyond) to be delivered over 4 to 8 sessions. The evaluation plan incorporated a range of quantitative (attendance, demographics, and geography; pre-post well-being ratings and surveys; psycholinguistic analysis of conversation; facial emotion recognition; facilitator ratings; and economic analysis of program delivery) and qualitative (content and thematic analysis) approaches. Pilot data from round 2 groups on the pre-post 3-word surveys indicated an increase in the emotional valence of words selected after the sessions. CONCLUSIONS: The involvement of people with lived experience of a rare dementia was critical to the design, development, and delivery of the small virtual support group program, and evaluation of this program will yield convergent data about the impact of tailored support delivered to geographically dispersed communities. This is the first study to design and plan an evaluation of VSGs specifically for people affected by rare dementias, including both people living with a rare dementia and their carers, and the outcome of the evaluation will be hugely beneficial in shaping specific and targeted support, which is often lacking in this population

A mixed methods evaluation of a program exploring predeath grief and loss for carers of people with rarer dementias

Objectives: Predeath grief conceptualizes complex feelings of loss experienced for someone who is still living and is linked to poor emotional well-being. The Road Less Travelled program aimed to help carers of people with rarer dementias identify and process predeath grief. This study evaluated the feasibility, acceptability, and preliminary effectiveness of this program. / Design: Pre–post interventional mixed methods study. / Setting: Online videoconference group program for carers across the UK held in 2021. / Participants: Nine family carers of someone living with a rare form of dementia. Eight were female and one male (mean age 58) with two facilitators. / Intervention: The Road Less Travelled is an online, facilitated, group-based program that aims to help carers of people with rarer dementias to explore and accept feelings of grief and loss. It involved six fortnightly 2-hour sessions. / Measurements: We collected measures for a range of well-being outcomes at baseline (T1), post-intervention (T2), and 3 months post-intervention (T3). We conducted interviews with participants and facilitators at T2. / Results: Participant attendance was 98% across all sessions. Findings from the semistructured interviews supported the acceptability of the program and identified improvements in carer well-being. Trends in the outcome measures suggested an improvement in quality of life and a reduction in depression. / Conclusion: The program was feasible to conduct and acceptable to participants. Qualitative reports and high attendance suggest perceived benefits to carers, including increased acceptance of grief, and support the need for a larger-scale pilot study to determine effectiveness