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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.

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.

Background

Despite depression being prevalent in people with dementia, contributing to negative health outcomes and placing increased burden on individuals and family members, access to psychological interventions is limited. A potential solution is guided low-intensity behavioral activation, supported by informal caregivers and guided by healthcare professionals. However, it is necessary to adapt interventions to meet the needs and preferences of key stakeholders to enhance acceptability and relevance. Study objectives were to: (1) explore needs and preferences concerning the content and delivery model of the guided low-intensity behavioral activation intervention; and (2) adapt the intervention to ensure cultural appropriateness, relevancy, and acceptability to people with dementia and their caregivers in Sweden.

Methods

Semi-structured interviews and focus group discussions were conducted with key stakeholders, including healthcare professionals (n = 18), community stakeholders (n = 7), people with dementia (n = 8), and informal caregivers (n = 19). A draft of the written low-intensity behavioral activation intervention and a description of the proposed intervention delivery model were provided to participants. Open-ended questions explored the perceived relevance of the intervention, alongside needs and preferences concerning content and delivery. A manifest content analysis approach was adopted.

Results

Content analysis resulted in three categories: Content, Delivery procedures, and Illness trajectory. Results highlighted a need to consider the intervention Content via increased cultural adaptation to the Swedish context, and increasing the inclusiveness of intervention content. Delivery procedures were identified as needing to be flexible given the unpredictable nature of caring for people with dementia, with the provision of additional guidance to informal caregivers supporting the intervention. Illness trajectory was viewed as essential to consider, with the intervention regarded as suitable for those early in the dementia trajectory, alongside a need to reduce workbook text to minimize burden given dementia symptomology.

Conclusions

The intervention and proposed delivery model were generally well received by all stakeholders. We were able to identify key adaptations to enhance cultural appropriateness, relevancy, and acceptability for a currently neglected population. Results will inform a feasibility study to explore the feasibility and acceptability of the intervention and study procedures to inform the design of a future superiority randomized controlled trial.

Introduction: Depression is commonly experienced by people with dementia. Whilst evidence-based psychologicalinterventions are effective, a large psychological care gap remains. Behavioral activation may representa potential solution to close this gap. Following the MRC Framework for developing complexinterventions, considering potential barriers and facilitators to implementation is recommended duringintervention development. This study aimed to identify professional stakeholders’ perceptions of barriersand facilitators to future implementation.

Methods: Following a topic guide informed by Normalization Process Theory (NPT), focus groups and semistructuredinterviews were held with healthcare professionals (n=18) and community stakeholders (n=7). Data was analyzed using the NPT coding manual, with inductive categories generated for data related tomain NPT mechanisms, but not captured by its sub-constructs.

Results: A number of barriers and facilitators were identified. Facilitators include the proposed intervention: (1) has potential to fill a large psychological care gap; (2) has understandable and agreed upon objectivesand potential benefits; and (3) could easily be integrated into the lives of people with dementia and theirinformal caregivers. Barriers include lack of: (1) engagement from politicians and decision-makers; (2)appropriate workforce to provide intervention guidance; (3) time and financial resources.

Conclusions: Results have informed the adaptation of a tailored intervention, optimized to improve futureimplementation potential. A subsequent feasibility study will further examine intervention feasibility andacceptability.

Background: Approximately 40% of people with dementia experience depression. Whilst psychological interventions are effective for the treatment of depression in dementia, access remains low. A behavioural activation self-help intervention, with support to the person with dementia to use the intervention provided by an informal caregiver, who themselves receives guidance from an occupational therapist (or other trained healthcare professional), may represent a solution.

Objective: To develop a behavioral activation intervention targeting depression among people with dementia for the Swedish context together with key stakeholders.

Methods: Semi-structured interviews and focus groups were held with people with dementia (n=8), informal caregivers (n=19), healthcare professionals (n=18), and non-governmental organisations (n=7) and analysed using manifest content analysis. A Public Advisory Group, consisting of informal caregivers of people with dementia (n=4), worked alongside the research team to support the interpretation and sense-making of research findings and co-design of the intervention.

Results: An overarching theme ‘Tailoring and flexibility’ resulted from interviews and focus groups. Stakeholders expressed a need to adapt intervention material to increase relevancy and representativeness by: (1) adding multiple case stories to illustrate different life situations, age groups, ethnic backgrounds, and to increase relevance to Swedish society and culture; (2) designing new illustrations, as proposed illustrations were perceived old-fashioned and reinforced ageing and dementia stereotypes; and (3) reducing text to minimize treatment burden. Stakeholders also expressed a need for flexibility concerning intervention delivery and expressed a need for choice concerning: (1) location of guidance sessions to enable face-to-face sessions to be delivered in a familiar, safe, and convenient environment (e.g., home or familiar community setting); (2) mode of guidance (e.g., face-to-face, telephone, online); and (3) amount of guidance (e.g., frequency and number of guidance sessions).

Conclusions: Results informed the development of a tailored intervention, optimised to improve acceptability, feasibility, and relevancy for people with dementia and depression. A planned feasibility study will further examine feasibility and acceptability of the intervention.

Public involvement: Our Public Advisory Group has worked closely together with the research team to support the interpretation and sense-making of research findings and co-design the intervention to increase acceptability and relevancy of the intervention.

Introduction: Mental health difficulties such as anxiety and depression have negative impacts on psychological well-being and are common in people with dementia and mild cognitive impairment. However, access to psychological treatments is limited. This mixed-method systematic review will: (1) examine the effectiveness of psychological interventions to improve mental health and psychological well-being in people with dementia or mild cognitive impairment; (2) examine the effectiveness of these psychological interventions to improve mental health and psychological well-being in informal caregivers; (3) examine potential clinical and methodological moderators associated with effectiveness; (4) explore factors associated with the acceptability of psychological interventions from the perspective of key stakeholders; and (5) examine the completeness and quality of intervention reporting.

Methods and analysis: Electronic databases (ASSIA, CENTRAL, CINAHL, EMBASE, PsycINFO and MEDLINE) will be systematically searched and supplemented with expert contact, reference and citation checking, and grey literature searches. If possible, we will conduct a meta-analysis to examine the overall effectiveness of psychological interventions to improve mental health and psychological well-being in people with dementia or mild cognitive impairment and their informal caregivers; and examine potential clinical and methodological moderators associated with effectiveness. We will conduct a deductive framework synthesis, informed by the theoretical framework of acceptability, to explore factors associated with the acceptability of psychological interventions from the perspective of key stakeholders. In accordance with Joanna Briggs Institute guidance, we will adopt a convergent segregated approach to data synthesis and integration of quantitative and qualitative findings. We will examine the completeness and quality of intervention reporting according to the Template for Intervention Description and Replication checklist and guide.

Ethics and dissemination: No primary data will be collected, and therefore, ethical approval is not required. Results will be disseminated through a peer-reviewed publication, academic conferences, and plain language summaries.

PROSPERO registration number: CRD42023400514.