Dementia resources for eating, activity, and meaningful inclusion (DREAM) toolkit co-development: process, output, and lessons learned

Improving supports to enhance wellbeing of people living with dementia is a priority. Engaging people living with dementia, care partners, and other stakeholders in development of interventions increases the likelihood they will be relevant and impactful. We describe the participatory approach used to co-design the Dementia Lifestyle Intervention for Getting Healthy Together (DELIGHT) program, which aims to promote the health and wellbeing of people living with dementia and care partners. The DELIGHT project was guided by a team of researchers, people living with dementia, care partners, and an Alzheimer Society representative. The co-design team included additional people living with dementia, care partners, exercise professionals, dietitians, health care professionals, and community service providers (n = 29). The co-design was planned for in-person but was transitioned to six online, 1.5-h sessions due to COVID-19 related restrictions. We used breakout rooms for discussion, with people living with dementia in each breakout room. Co-design meetings focused on identifying target population and outcomes and developing program components and structure. Two or three guiding questions focused discussion in each meeting. The final co-design session focused on the overall structure of the DELIGHT program. Program resources were iteratively designed with the research team, co-design team, and other external stakeholders. The result of the co-design process was the DELIGHT program, an 8-week, twice weekly program designed to promote living well with dementia for people living with dementia and care partners. Each session includes 50-60 minutes of exercise and 20-30 minutes of facilitated, shared learning with an associated resource. A healthy snack may be offered. Shared learning focuses on healthy eating, sleeping well, mental well-being, social connection, and physical activity. Our vision is that the co-designed DELIGHT program will promote the health and wellbeing of people living with dementia and care partners, increasing the likelihood of living well with dementia.

Primary malignant brain tumors (ie, brain cancer) impact the quality of life (QoL) for patients and care partners in disease-specific ways involving cognition and communication. Palliative care (PC) addresses patient/care partner QoL, but it is not known how PC may address the unique needs of brain cancer patients. The purpose of this project was to identify brain cancer PC research priorities using participatory co-design methods. Participatory co-design included the formation of a longitudinal, collaborative advisory group, engagement frameworks, design-thinking processes, and social media-based engagement over a 1-year period. Community-identified brain cancer QoL needs and research priorities were mapped to proposed "essential elements" of brain cancer PC services. We engaged an estimated 500 patients, care partners, healthcare professionals, and others with an interest in QoL and PC services for people with malignant brain tumors. Research priorities included testing the early introduction of PC services designed to address the unique QoL needs of brain cancer patients and care partners. Essential elements of brain cancer PC include: (1) addressing brain cancer patients' unique range of QoL needs and concerns, which change over time, (2) tailoring existing services and approaches to patient needs and concerns, (3) enhancing the involvement of interprofessional care team members, and (4) optimizing timing for PC services. This was the first participatory research effort exploring brain cancer patient and care partner QoL needs and PC services. The brain tumor community calls for research testing PC service models for patients that incorporate the "essential elements" of palliative care.

BACKGROUND QoL is a critical aspect of health care outcomes, particularly in the context of brain tumor treatment and survivorship. There are evidence gaps in optimal strategies for improving QoL among brain tumor patients and care partners. Understanding the multifaceted dimensions of QoL and identifying key areas for brain tumor QoL research can significantly enhance patient care and support. Engaging the brain tumor community in defining QoL outcomes and determining research priorities can help orient research resources to community needs and perspectives. OBJECTIVE To summarize the process and outcomes of an NBTS-led collaborative effort to co-design a comprehensive research agenda on QoL for brain tumor patients and care partners, as outlined in the “Brain Tumor QoL Research Agenda.” METHODS The agenda was developed through a collaborative effort involving experts in neuro-oncology, patients, care partners, patient advocacy groups, and healthcare professionals over a two-year period. A review of existing literature, patient experiences, and expert opinions informed the identification of key research priorities. A multistakeholder advisory group held monthly meetings where brain tumor QoL was defined. In 2023, we conducted two “Research Roundtables” for adults and pediatric/AYA. The World Cafe method captured data and a survey consensus process to validate findings. RESULTS The QoL research agenda delineates a multifaceted framework encompassing domains crucial for understanding and improving QoL in brain tumor patients. Key focus areas include symptom management, psychosocial support, care burden, treatment decision-making, survivorship issues, and health care delivery models. An RFP was released by NBTS with input from stakeholder advisors in April 2024. CONCLUSION The Brain Tumor QoL Research Agenda created a roadmap for advancing research efforts aimed at enhancing the QoL of individuals affected by brain tumors. By addressing the identified research priorities, healthcare stakeholders can work towards implementing effective interventions and policies to optimize patient outcomes and well-being. This program was funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (EACB-23261).

Clinical guidelines recommend that people with Huntington's disease (HD) should exercise to maintain/improve fitness and motor function, yet physical activity levels remain low in this group. Promotion of physical activity is often via care partners with little evidence that they are supported in this role. The aim was to co-design a resource for care partners of people with HD to support promotion of physical activity. A four-step co-design approach was used to develop a care partner resource. Five care partners took part in an online workshop exploring experiences and the knowledge, support and skills needed by care partners to promote physical activity. A co-design team (n = 7) developed a prototype that was user tested by three people who had attended the workshop. Findings from user testing were used to develop the final resource. An easy to read, image-based prototype was developed that contained tips on planning activity, safety and activity examples. User testing identified the need for grouping of activities suitable for 10, 20, and 30 minutes of available time, information on maintaining and improving activity and re-organization of information to support engagement of activity. A resource for care partners that has been translated into seven languages was developed to promote physical activity. User testing indicated confidence in using the resource and appreciation of the autonomy provided to the person with HD to plan activities. Further work is needed to evaluate the impact of the resource in promotion of physical activity and the impact on care partner burden.

With increasing strain on public health systems to meet growing demands, inclusion of and collaboration with family and friend carers as partners in health care is likely to support optimal health outcomes for Australians and reduce strain on the health care system. There are approximately 2.65 million carers in Australia (Australian Bureau of Statistics, 2019). Carers often play an important role in the planning and delivery of health care in the community and within institutional settings. The Carers NSW 2022 National Carer Survey (n= 6,825) found that approximately 81.9% of respondents provided assistance with health care. Additionally, the Survey also found that carers often provide support with other tasks that may be associated in engaging in health care such as communication (72.5%), planning and remembering appointments (89.4%), support with making decisions (80.7%), administrative support (89.9%) and advocacy (71.5%). Despite the important role that many carers play in supporting the person they care for to access and engage in health care, carers continue to report that they are often not included in treatment planning discussions or provided with adequate information to facilitate care. Almost 3 in 4 (74.2%) 2022 National Carer Survey respondents agreed that they were involved in treatment discussions and planning by GPs, and just less than 2 in 3 (62.4%) agreed that they were involved in treatment discussions and planning in hospitals or community health settings. Approximately 3 in 5 (59%) agreed that they were provided all information they need to fulfil their caring role by GPs, however less than half of respondents (46%) reported the same for hospital or community support settings. This data indicates that there is still significant work to be done to improve carer recognition in health settings. The Commonwealth Carer Recognition Act 2010 stipulates that carers should be considered as partners in care with other care providers , acknowledging their unique knowledge and experience. While health care services continue to develop and improve person-centred care, health care staff and professionals must also be effective at identifying and working collaboratively with family and friend carers who often form a key role in the broader support network for those they care for, including supporting them to access health services. This presentation will highlight the need for greater understanding and awareness of carers by all health care staff and professionals to improve carer identification, recognition and inclusion within health settings. Improved carer recognition and inclusion is likely to support improved health and wellbeing outcomes for those receiving care as carers will be better equipped to support and facilitate engagement with treatment and preventative measures. Additionally, in taking a more holistic approach to person-centred care that recognises and effectively includes carers in the provision of health care, there is likely to be reduced reliance on already overburdened formal care services and health care systems more broadly.

The MY PD-CARE digital tool is intended to empower people with Parkinson's disease (PD) and care partners to actively identify and track changes in key symptoms of advancing PD and to facilitate discussions with healthcare professionals (HCPs). MY PD-CARE was adapted from MANAGE-PD, a validated, web-based tool that helps HCPs identify patients with inadequate symptom control. The SELF-AWARE (Study on Ethnographic research and human factors evaLuation For a tool to increase AWareness, self-Assessment, and Reporting of PD patiEnts uncontrolled on oral medication) study investigated MY PD-CARE ease of use, understandability, and acceptance among people with PD and their care partners. SELF-AWARE was a non-interventional, cross-sectional, observational study. Participants (patients/care partners) assessed MY PD-CARE during 1-time virtual interviews conducted by trained medical anthropologists using qualitative ethnographic and human factor evaluation methods. In 90.7% of interviews (43 patients; 31 care partners), ≥ 1 patient/care partner participant was comfortable with technology. Most participants understood the purpose/objective of MY PD-CARE and agreed it was simple and easy to use. Although the medical terminology was not fully self-explanatory to many participants, half found the glossary helpful. Approximately 60% indicated MY PD-CARE could have more value with free-text input. Participants agreed that MY PD-CARE is useful for tracking symptoms and encouraging discussions with HCPs. People with PD and their care partners perceived MY PD-CARE as useful and acceptable for tracking and increasing awareness of symptoms and facilitating discussions with HCPs. Participant feedback helped optimize the updated design of this digital tool.

In healthcare, change management traditionally follows a top-down approach that often neglects the lived experiences of patients and their support networks. However, integrating patients, their support people, and healthcare professionals as active partners in care is essential to developing sustainable, meaningful change. This presentation explores our recent work in implementing a new evidence-based care practice at a tertiary care hospital with the goal of decreasing maternal morbidity and severe maternal mortality, using a human-centered design framework to engage deeply with those most affected by the change. Our approach centered on a collaborative methodology that prioritized empathy, curiosity, and partnership. We leveraged digital engagement tools and asynchronous, at-home activities, allowing patients and support people to authentically share their experiences in their own time and space. Innovative methods, such as digital cultural probes, diary tools, and virtual interviews, helped overcome traditional engagement barriers, building a richer understanding of patients’ experiences and needs. These methods also enabled us to capture insights that extended beyond what could be gathered through conventional metrics, creating a comprehensive view of the patient journey. In addition, we engaged with clinical care providers through in-person and virtual ethnographic research, building trust and sharing knowledge through creative, interactive methods. By combining digital and in-person approaches, we built a robust framework for collaboration among patients, support people, and healthcare staff. This approach underscored the value of empathy and trust as fundamental elements of sustainable change. Our multi-modal, patient-inclusive approach led to transformative results, highlighting this implementation as not merely a practice change but as a transition toward a new model of care. Our human-centered design process provided actionable, patient-centered recommendations, empowering patients and support people to take a more active role in their health and well-being. Through these engagements, we ensured that the new model of care was co-designed with patient input, enabling them to recognize when to seek assistance while promoting advocacy for their health and unique experience. By embedding empathetic and human-centered principles, we identified critical barriers and facilitators to implementation that might have otherwise been overlooked. Our methodology layered patients’ needs onto the proposed care model, harmonizing their perspectives with those of clinical care providers to ensure protocols were both implementable and impactful. The result was a more inclusive, effective approach to evidence-based practice that acknowledges people as partners in health and care. Through this experience, we gained invaluable insights into how collaborative, digitally-enabled design can embed patients’ and support peoples’ voices into healthcare solutions. This case highlights that when healthcare teams truly design with patients, rather than for them, they cultivate empowered partnerships that lead to impactful, enduring change in care delivery.

The objective of this systematic review is to understand the experiences of care partner engagement in patient safety at the direct care level from the perspective of care partners, patients, and health care professionals. Care partner engagement is a strategy for promoting patient safety in hospitals at the direct care level (ie, at the point where patient care is delivered). When present, care partners can increase safety by watching, listening, and taking action to protect admitted patients. To improve care partner presence policies and safety engagement strategies within hospitals, a comprehensive understanding of the current qualitative evidence about the breadth of experiences of care partner engagement in patient safety is required. This review will include qualitative studies that consider the experiences of care partners, adult patients, and health care professionals. The engagement of care partners in patient safety within pediatric hospital settings will not be considered. This review will follow the JBI methodology for systematic reviews of qualitative evidence. A preliminary literature search was conducted in MEDLINE and a full search strategy was developed for MEDLINE, Embase, CINAHL, and PsycINFO (all via Ovid), as well as the Cochrane Database of Systematic Reviews and JBI Evidence Synthesis . The JBI approach to study selection, critical appraisal, data extraction, data synthesis, and assessment of confidence will be followed. Two reviewers will test the screening criteria and data extraction protocol. PROSPERO CRD42023476286.

Emergency Department Communication in Persons Living With Dementia and Care Partners: A Scoping Review.

BackgroundCOVID‐19 has been devastating for older adults, particularly residents in long‐term care/retirement (LTC) homes. In an effort to curb the transmission of COVID‐19, public health measures have been put in place in many LTC homes, including mask wearing, physical distancing, and visitor restrictions. As the pandemic passes the one‐year mark, we are starting to understand the profound impacts of COVID‐19 and the corresponding public health measures on persons living with dementia (PLWD) and their family care partners (CPs). This research is part of a larger study exploring the impact of COVID‐19 on the wellbeing and social connections of PLWD and CPs. In this presentation, findings from qualitative interviews conducted with CPs of PLWD in LTC homes are shared.MethodsThe overall study used an intrinsic case study design, involving survey and interview data. Following completion of a survey, participants were invited to participate in an in‐depth qualitative interview. Interviews were conducted by phone or online, transcribed verbatim, and analyzed using thematic analysis.ResultsEighteen CPs were interviewed. The impact of visitor restrictions varied between LTC homes and changed over the course of the pandemic, which was extremely challenging for CPs. At homes with visitor restrictions, the inability to visit family members with dementia was described as stressful, unfair, and frustrating. CPs stressed the importance of being able to visit their relatives, and ensuring their family members had regular social interaction to support their physical, social and emotional wellbeing. Even when CPs could visit, masks and physical distancing made communication with some PLWD challenging. Visitor policies also influenced perceptions of care. Some CPs felt that the needs of their family members with dementia were being met by the home, while others weren’t sure because CPs weren’t in the homes to assist staff and provide support to their family members with dementia.ConclusionWhile COVID‐19 and the pandemic restrictions have been difficult for all CPs of persons with dementia in LTC, for some it has been agonizing. Understanding these varied experiences can help inform the development of individually‐tailored resources to better support the wellbeing of CPs.

Background Lewy Body Dementia (LBD) is the second most common form of dementia, yet it remains under-recognised and under-diagnosed, particularly in Ireland, where no national clinical guidelines or care pathways exist. This study represents the first comprehensive exploration of LBD diagnostic and post-diagnostic pathways in Ireland, drawing on the lived experiences of LBD patients, care partners, and healthcare professionals (HCPs) to identify systemic gaps and opportunities for reform. Methods A qualitative interpretive phenomenological approach was employed to conduct semi-structured interviews with 12 LBD patients, 17 care partners, and 23 healthcare professionals, from both urban and rural areas, across various disciplines, including neurology, psychiatry, geriatric medicine, nursing, allied health, and general practice. Thematic analysis was conducted using Colaizzi’s method, with a focus on diagnosis, post-diagnostic support, and service navigation. Results Five key themes emerged: (1) Recognition and Diagnosis – delays, misdiagnoses, and unclear referral routes were prevalent; (2) Systemic Fragmentation and Informal Anchors – families often coordinated care in the absence of structured support; (3) Emotional and Practical Burden of Care – care partners reported significant exhaustion, isolation, and financial strain; (4) Inequitable Access and Training Gaps – rural, young-onset, and under-65 cases faced substantial access barriers, compounded by inconsistent LBD-specific training; and (5) Call for Awareness and Structural Change – participants emphasised the need for standardised care pathways, specialist roles, and integrated, age-inclusive services. Conclusion This study highlights the distinct challenges faced by LBD patients and their care partners in Ireland, underscoring the need for systemic reform to address inequities in diagnosis and care. It highlights the critical importance of LBD-specific training for healthcare professionals, developing coordinated care models, and implementing policy changes to better support patients and frontline professionals. By centering the lived experiences of patients and care partners, these findings provide a foundation for the design of more inclusive, responsive, and person-centered dementia services in Ireland.

To identify the silicosis research priorities of people living with silicosis, workers at risk of silicosis, their partners and caregivers, and of health professionals and researchers. Research priority setting exercise; modified James Lind Alliance framework for research priority setting partnerships, comprising an online survey followed by two forums in which thematic analysis and nominal group analysis were used to establish a list of research priorities. People with or at risk of silicosis, their partners or caregivers (survey, online forum) and health care professionals, researchers, health and safety professionals (survey, in-person forum), recruited 14 April - 19 December 2023. Research priorities in four pre-identified areas: prevention, screening and diagnosis, treatment, and living with and managing the impact of silicosis. A total of 164 survey respondents (105 medical or research professionals, 34 workers currently or formerly at risk of silicosis, eleven people with confirmed silicosis, and fourteen partners or caregivers) identified 47 key research topics. Fifty-three health care professionals and thirteen people with or at risk of silicosis and their caregivers then ranked the research topics and developed research questions at the two forums. The highest ranked research priorities were research into assessment and optimisation of the hierarchy of controls, compliance and regulation, establishing minimum standards and developing innovative screening methods, early diagnosis, development of effective treatments, identification of biomarkers for risk of progression, developing an optimal care model that includes mental health care, and estimating the economic impact of silicosis. Both participant groups agreed that research into workplace controls is important, as is improving education and awareness, compliance with preventive measures, and screening and diagnosis, including nationally consistent screening and diagnosis practices. The professional participants rated research into silicosis pathogenesis and biomarkers and technological considerations higher than workers and their carers, who focused more on the barriers for and attitudes of workers, specific treatments, and managing symptoms. Research into eliminating exposure to silica, early diagnosis of silicosis, preventing disease progression, and reducing the impact of disease were the top research priorities for people with professional or personal interests in silicosis. Our findings should guide research directions and inform policy development.

Older patients with serious mental illnesses such as cognitive disorders often rely on family members or spouses (care partners [CPs]) to meet their health care needs. CPs frequently lack essential information to fully understand the patients' illnesses and effectively support their treatment. Open Notes provide patients with digital access to their health care professionals' clinical notes and are associated with many positive outcomes, such as increased adherence and empowerment. However, older patients who use Open Notes may encounter use barriers such as limited digital literacy. Recent developments allow CPs to access Open Notes (proxy access) and receive valuable information, which holds significant potential for improving the care of older patients. This study explored the experiences, barriers, and opportunities of older mental health patients and their CPs related to using Open Notes. Furthermore, influencing factors and interdependencies were identified. Older patients (n=10) and their CPs (n=10) were provided with web-based proxy access to clinical documentation through a web-based patient portal. In-depth qualitative interviews (N=20) were conducted to explore experiences with this access. Data analysis was conducted in accordance with the constructivist grounded theory approach. The prerequisites for using Open Notes with proxy access were sufficient digital literacy on the part of the patient or CP, as well as the establishment of a trusting relationship between patients and CPs. Access to Open Notes enabled patients and CPs to gain a deeper understanding of the illness and its treatment while also facilitating enhanced contact with health care professionals. This resulted in greater involvement in the treatment process but may also prompt changes in relationship dynamics-CPs are better equipped to support patients in their health care but may also tend to monitor or control them through Open Notes. As a result, the introduction of Open Notes was accompanied by mixed feelings. It is of utmost importance to provide older patients with comprehensive access to Open Notes to preserve their health autonomy. However, the involvement of CPs through proxy access is of great value in improving the care of older patients, especially those with cognitive impairments.

The Geriatric Emergency Care Applied Research Network 2.0-Advancing Dementia Care (GEAR 2.0-ADC) aims to advance research efforts to improve the emergency care of persons living with dementia (PLWDs). To support this objective, GEAR 2.0-ADC convened a virtual consensus conference to prioritize emergency care research opportunities for PLWDs inclusive of perspectives of PLWDs to ensure identification of research gaps in response to their experiences and priorities. Inclusion of PLWDs as research partners is increasingly recognized as a best practice, however, approaches to facilitating consensus participation are lacking. Best practices for supporting the engagement of PLWDs in a consensus conference, applied across its three phases (pre-conference, during the conference, and post-conference), include: establishing a learning environment focused on research priorities before the event, presenting information in ways that align with participants' learning preferences while accommodating cognitive impairments, and providing multiple opportunities and methods for gathering post-conference feedback from PLWDs. These strategies were identified by PLWDs and care partners (CPs) through semi-structured interviews, who were involved in the convening process, aimed at exploring ways to enhance facilitation techniques for participants. Additionally, these summarized insights aim to encourage the use of community-engaged approaches in discussions and consensus-building around research priorities in emergency care, particularly for PLWDs and their CPs.

BackgroundDigital platforms disseminating health information and providing support for the experience of non-memory-led dementias (NMLDs) are invaluable. However, the factors influencing engagement with these resources in people affected by NMLDs are poorly understood. We conducted the world’s largest survey exploring the experience of digital access in NMLDs to learn directly from people with a diagnosis, their care partners, and NMLD health care professionals (HCPs).ObjectiveThis study aimed to determine factors associated with digital health and well-being resource use in people with NMLD and their care partners and investigate differences in digital health and well-being resource use according to NMLD subtype.MethodsIndividuals diagnosed with NMLD—for example, those with frontotemporal lobar degeneration, posterior cortical atrophy (PCA), and primary progressive aphasia (PPA)—their care partners, and NMLD HCPs (N=450) responded to the survey. A subset of care partners provided two responses (carer-related and proxy), generating 4 survey groups with responses (N=538). The survey included demographics and basic clinical information, the outcome measure of usage behavior, and factors including constructs from the Short Senior Technology Acceptance Model (Short STAM) and additional constructs informed by a combination of previous literature and consultation with NMLD experts-by-experience (anxiety and depression [Patient Health Questionnaire–4-item], instrumental activities of daily living, web-related privacy and security concerns, and digital health literacy). Separate multiple linear regressions were run for each survey group to elucidate which variables predicted higher use of digital health and well-being resources. The use of digital resources for health and well-being was also explored across 3 NMLD subtypes: frontotemporal dementia (FTD), PPA, and PCA.ResultsAttitudinal belief was consistently the strongest predictor of digital health and well-being resource use in people with NMLD as well as caregivers and proxy respondents. Control belief was significantly associated with higher digital health and well-being resource use in the NMLD and proxy groups; a trend was observed in the carer group. The adjusted R² range (63.0%‐70.8%) denotes the variance in digital health and well-being resource use accounted for in the 3 models. Lower digital health and well-being resource use was associated with FTD diagnosis and caregiver groups relative to PPA and PCA.ConclusionsCollectively, these findings indicate several factors are critical to consider when designing digital health and well-being resources for people with NMLD and their caregivers, in particular targeting practical and emotional perceptions of digital resource use for health and well-being. This should be undertaken in combination with design considerations that address condition-specific cognitive profiles encountered by those living with NMLD diagnoses and those who care for them.