Grief and loss in people living with dementia: a review and metasynthesis of qualitative studies.

OBJECTIVES: This review seeks to synthesise qualitative studies that focus on the experience of grief and loss in people living with dementia. METHODS: Included studies were quality appraised, synthesised and analysed using inductive thematic analysis. RESULTS: 19 studies were selected for inclusion in the final review and metasynthesis, including 486 participants (115 participants living with dementia, 152 family carers, 219 professionals). Five key dimensions of grief in people living with dementia were identified during the analysis process: grieving for the person I used to be, grieving for how others see me, grieving for the person I will become, grieving for those who have died and what helps me with my grief. CONCLUSION: It is evident that people living with dementia can experience grief related to a range of previous, current and anticipated losses. Many of the studies included in this review did not directly include people living with dementia in their research and did not ask participants directly about their experience of grief and loss. As grief is a highly personal and individual experience, further research addressing the experience of grief that directly includes participants living with dementia is required, in order to improve awareness of grief-related needs and to develop and deliver support to meet these needs.

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.

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): DERR1-10.2196/35376.

Co-creativity, well-being and agency: A case study analysis of a co-creative arts group for people with dementia.

At the heart of this paper is an exploration of artistic co-creativity involving people with dementia and their partners. Co-creativity promotes a relational approach to creativity which nurtures inclusion and participation. This paper investigates how co-creativity can affect well-being from the perspectives of people with dementia and their carers; and explores how well-being and agency might be usefully reconsidered. The article draws on findings from a small-scale study 'With All' that focused on music and dance as non-verbal and therefore inclusive artforms. A range of disciplinary perspectives, from psychology, philosophy and social sciences, inform the study. The research used an intrinsic case-study methodology and within this a mixed-methods approach was adopted. This included dialogic interviews, video data analysis and the Canterbury Well-being Scale (CWS). Thematic analysis of the interviews and video data revealed three key themes: autonomy, connections, and art as an enabler. These themes captured the experiences of the participants and facilitated a more nuanced understanding of wellbeing and agency in the context of living with dementia. The analysis of the CWS indicated some improvements in well-being. Following this analysis using multiple data sources, the paper argues that well-being and agency are best understood as relational, and ongoing, rather than completed states. Further both wellbeing and agency contain their opposites (ill-being and passivity). This innovative exploration highlighted the importance of co-creative collaboration as a method that was considered valuable by participants, and that therefore should be further considered in future research with people living with dementia.