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People with dementia are living longer in the community and reliance on informal caregivers is increasing. Few studies have focused on the experiences of adult-daughter caregivers (daughter caregivers), who may have increased risk of depression and lack of support compared with spousal caregivers. We aimed to explore the experiences of accessing and receiving formal and informal support among daughter caregivers of people living with dementia in Sweden. We conducted semi-structured interviews with 23 daughter caregivers. A topic guide was used to explore experiences of accessing and receiving formal and informal support in their caregiving role. We analyzed the interviews using reflexive thematic analysis. We generated two themes: Types of support, and Mismatched support. The first theme, with subthemes Sharing experiences, Professional support, and Getting some relief, captured the caregiver support context with different types of support accessed and received by daughter caregivers, with peer support and informational support identified as important components of caregiver support. The second theme, with subthemes Lack of tailoring to daughter caregivers’ needs and Difficulties navigating support, captured how daughter caregivers perceived existing support to be inadequate to meet their specific needs and the complex structure of available support limited their opportunities to access support. Daughter caregivers experience a mismatch between the type of support accessed and received and their specific support needs. Support better tailored to the needs and situation of daughter caregivers of people with dementia in Sweden is required. The potential of utilizing peer support for caregivers warrants further research.

Objectives

Experiences of daughter caregivers are underrepresented in the broader caregiving literature, with studies commonly focusing on spousal caregivers. We aimed to explore challenges experienced by daughter caregivers, reporting varying severity of depressive symptoms, of a parent with dementia in Sweden. This study is situated within a wider research program to inform the development of psychological support for this underserved caregiver group.

Method

Following a semi-structured topic guide, we interviewed 23 daughter caregivers. We used reflexive thematic analysis to analyze the interviews. We did not compare and contrast challenges expressed by daughter caregivers experiencing different levels of depression severity; however, symptom severity is reported to contextualize findings.

Results

We generated one overarching theme, Changing Roles and Expectations Over Time, and four themes: Caregiver Role – Expectations; Puzzle of Life – Balancing Roles; Relationship with the Parent – Reciprocity, and Anticipating the Inevitable – Loss and Grief. Daughter caregivers reported challenges balancing multiple roles, difficulties prioritizing their own well-being, relationship difficulties with their parent, and anticipatory grief, with challenges changing over the dementia trajectory.

Conclusion

Future research should explore support needs across specific phases of the dementia trajectory to inform the development of tailored psychological support.

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.

This thesis informed the development of complex interventions to support people with dementia and depression, and their informal caregivers (caregivers), to live well. The thesis was embedded within two parallel research projects, INVOLVERA (Study I & II) and DeCiDE (Study III & IV), both situated within the MRC framework intervention development phase. 

Study I, a mixed-methods systematic review, aimed to examine the effectiveness of psychological interventions to improve mental health and psychological well-being in people with dementia or mild cognitive impairment; examine the effectiveness of these interventions to improve mental health and psychological well-being in caregivers; examine potential clinical and methodological moderators associated with effectiveness; explore factors associated with the acceptability of psychological interventions from the perspective of key interest-holders; and examine the completeness and quality of intervention reporting. A small effect size favoring the intervention was found for depressive symptoms for people with dementia or MCI, and no effect for caregivers. Factors associated with intervention acceptability according to the Theoretical Framework of Acceptability were identified. Intervention reporting completeness and quality was generally inadequate. 

Study II, a qualitative study, aimed to explore the needs and preferences of key interest-holders concerning the content and delivery model of a guided LI-BA intervention for people with dementia, and adapt the intervention to ensure cultural appropriateness, relevancy, and acceptability to people with dementia and their caregivers. Content analysis generated three categories: Content, Delivery procedures, and Illness trajectory. Findings informed adaptations to increase intervention inclusiveness and take into account dementia symptomatology. 

Study III, a qualitative study, aimed to explore the experiences of accessing and receiving formal and informal support among daughter caregivers of people living with dementia. Using reflexive thematic analysis, we generated two themes: Types of support – describing the caregiver support context, and Mismatched support – describing support as inadequate and complex to navigate. 

Study IV, a qualitative study, aimed to explore challenges experienced by daughter caregivers, reporting varying severity of depressive symptoms, of a parent with dementia. Using reflexive thematic analysis, we generated an overarching theme, Changing roles and expectations over time, and three themes: Puzzle of life – Balancing roles, Caregiver role – Expectations and role reversal, and Relationship with the parent – Reciprocity and loss. Findings described daughter caregivers’ challenges with balancing multiple roles with limited time and energy, role expectations, their relationship with their parent, and anticipatory grief.

This thesis contributes to literature on developing interventions tailored to needs of people with dementia and daughter caregivers. 

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.