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Introduction: Dementia is a worldwide health concern with incident rates continuing to increase. While depression prevalence is high in people with dementia and psychological interventions such as cognitive behavioural therapy (CBT) are effective, access to psychological interventions remains limited. Reliance on traditional CBT for people with dementia and depression may present difficulties given it is a complex psychological approach, costly to deliver, and professional training time is lengthy. An alternative approach is behavioural activation (BA), a simpler psychological intervention for depression. The present study seeks to work with people with dementia, informal caregivers, community stakeholders, and healthcare professionals, to adapt a guided low-intensity BA intervention for people with dementia and depression, while maximising implementation potential within the Swedish healthcare context.

Methods and analysis: A mixed methods study using codesign, principles from participatory action research (PAR) and normalisation process theory to facilitate the cultural relevance, appropriateness and implementation potential of the intervention. The study will consist of four iterative PAR phases, using focus groups with healthcare professionals and community stakeholders, and semi-structured interviews with people with dementia and informal caregivers. A content analysis approach will be adopted to analyse the transcribed focus groups and semi-structured interviews recordings.

Ethics and dissemination: The study will be conducted in accordance with the Declaration of Helsinki and data handled according to General Data Protection Regulation. Written informed consent will be obtained from all study participants. In accordance with the Swedish Health and Medical Services Act, capacity to consent will be examined by a member of the research team. Ethical approval has been obtained from the Swedish Ethical Review Authority (Dnr: 2020-05542 and Dnr: 2021-00925). Findings will be published in an open access peer-reviewed journal, presented at academic conferences, and disseminated among lay and healthcare professional audiences.

Background

Depression is commonly experienced by people with dementia, and associated with lower quality of life and functional decline. However, access to evidence-based psychological interventions for people with dementia and depression is limited. One potential solution is guided low-intensity behavioral activation. Following the new Medical Research Council Framework, considering factors such as potential barriers and facilitators to implementation is recommended during the development of new interventions. Aims of this study were to: (1) develop an understanding of existing healthcare and community support in the Swedish context for people with dementia and their informal caregivers; and (2) identify barriers and facilitators to intervention uptake informed by Normalization Process Theory.

Methods

Semi-structured interviews and focus groups were held with healthcare (n = 18) and community (n = 7) stakeholders working with people with dementia and/or informal caregivers. Interview questions were informed by Normalization Process Theory. Data was analysed utilizing a two-step deductive analysis approach using the Normalization Process Theory coding manual, with inductive categories applied to data related to the main mechanisms of the theory, but not captured by its sub-constructs.

Results

Twelve deductive and three inductive categories related to three Normalization Process Theory primary mechanisms (Coherence, Cognitive Participation, and Collective Action) were identified. Identified barriers to intervention uptake included: (1) additional burden for informal caregivers; (2) lack of appropriate workforce to provide guidance; (3) lack of time and financial resources; (4) people with dementia not recognising their diagnosis of dementia and/or a need for support; and (5) stigma. Identified facilitators to intervention uptake included: (1) intervention has potential to fill a large psychological treatment gap in Sweden; (2) objectives and potential benefits understood and agreed by most stakeholders; and (3) some healthcare professionals recognized their potential role in providing intervention guidance.

Conclusions

Several barriers and facilitators for future implementation, specific to the intervention, individuals and families, as well as professionals, were identified during intervention development. Barriers were mapped into evidence-based implementation strategies, which will be adopted to overcome identified barriers. A feasibility study further examining implementation potential, acceptability and feasibility, alongside clinical, methodological, and procedural uncertainties associated with the intervention will be conducted.

Background: While people with dementia commonly experience depression, access to psychological treatment is low. A guided low-intensity behavioral activation intervention may represent a solution. Considering implementation barriers and facilitators is important during intervention development to increase the future implementation potential of an intervention. However, involving patients and informal caregivers in identifying implementation barriers and facilitators during intervention development is rarely done. Involving patients and informal caregivers may be particularly important for low-intensity interventions, given the active role they are expected to adopt for successful intervention implementation, e.g., they are seen as active agents as opposed to passive recipients. Study aims were to: (1) develop an understanding of the existing healthcare and community support in the Swedish context for people with dementia and informal caregivers, and (2) identify people with dementia and informal caregivers’ perceived barriers and facilitators to intervention uptake informed by Normalization Process Theory (NPT).

Methods: Following an interview guide informed by NPT, semi-structured interviews were held with people with dementia (n = 8) and informal caregivers (n = 19). Interview transcripts were analyzed using the NPT coding manual, with an inductive approach adopted for data related to the core theoretical NPT constructs, but not represented within its sub-constructs.

Results: Nine deductive and three inductive categories related to three core NPT constructs (Coherence, Cognitive Participation, Collective Action) were identified. Barriers included: (1) extensive intervention material, (2) dementia symptoms, and (3) lacking acceptance of the dementia. Facilitators included: (1) intervention having potential to fill a large psychological treatment gap, (2) understanding and agreeing upon the intervention purpose and potential benefits, (3) intervention guide having professional experience in dementia, and (4) a trusting face-to-face relationship with the intervention guide.

Conclusions: Implementation barriers and facilitators were identified alongside evidence-based implementation strategies to be adopted in the future. Additional barriers and facilitators were identified to those recognized by dementia healthcare and community interest-holders, emphasizing the importance of recognizing the potential diversity of perspectives among different groups within the healthcare triad. By integrating these diverse perspectives early in the intervention development, we aim to develop an intervention optimized for implementation within real-world settings, meeting global health priorities to support people with dementia and their families live well with dementia.

Introduction: Public contribution is increasingly prioritised by research institutions, funding bodies, and policymakers globally. However, the evidence base for the impact of public contribution remains limited. Researchers and public contributors' experiences of such activities are also rarely reported. We worked alongside a Public Advisory Group (PAG) consisting of informal caregivers of people with dementia during a series of studies to inform the development and adaptation of a guided low-intensity behavioural activation intervention for people with dementia (INVOLVERA). The overall aim of the current study was to explore the experience, process, and impact of involving caregivers of people with dementia as public contributors during the intervention development phase of INVOLVERA.

Methods: Public contribution activities were recorded using impact logs from PAG meetings, from which public contributors' suggestions for the intervention were extracted and categorised, and the implementation rate calculated. Semi-structured interviews were conducted with public contributors (n = 4) and researchers (n = 3), and analysed using manifest content analysis.

Results: Public contributors made 158 suggestions across nine PAG meetings, with 76% of these implemented by the researchers. Analysis of interviews generated three categories: Perceived impacts, Interactions and facilitators, and Future challenges and opportunities. Interviews suggested public contribution activities positively impacted the research (e.g., improving intervention acceptability) and those involved (e.g., new knowledge and skills). Public contributors provided valuable recommendations for involving people with dementia and male caregivers in future activities.

Conclusions: Findings illustrate a positive impact of public contribution activities on the research and those involved. This underscores the important role of public contribution during the development of complex interventions and further emphasises the need for comprehensive reporting on the impact of such activities. We believe this study strengthens the evidence base for public contribution and offers practical insights into fostering effective partnerships with public contributors.

Public Contribution: A PAG consisting of wives and daughters (n = 4) of people with dementia worked alongside the researchers throughout the intervention development phase of the project. Contributions included (1) sense-making and interpreting results from a series of intervention development studies, (2) co-designing the intervention, and (3) disseminating findings, including co-writing the current paper.