Motivations of family advisors in engaging in research to improve a palliative approach to care for persons living with dementia: an interpretive descriptive study.

BACKGROUND: A Strategic Guiding Council (SGC) was created within a Family Carer Decisions Support study, to engage family carers of persons with advanced dementia as advisors to inform the design and implementation of the study. The SGC consists of an international group of family advisors from Canada, the Republic of Ireland, the United Kingdom, the Netherlands, and the Czech Republic. There are limited studies that have explored the integration of Patient and Public Involvement (PPI) in dementia research, end-of-life care and long-term care. Therefore, this study explores PPI engagement in health research with family carers to understand further their interest in being involved in the SCG within the FCDS intervention which is focused on supporting caregivers to make decisions about end-of-life care for residents with advanced dementia. METHODS: This study utilized an interpretive descriptive design and explored the motivations of ten family advisors from Canada, the Republic of Ireland, the United Kingdom, and the Netherlands in being part of the SGC. Semi-structured interviews were conducted by phone or videoconferencing and were recorded, transcribed, and analyzed using thematic analysis. RESULTS: Three themes generated from the findings of the study were (1) engaging in reciprocal learning; (2) using lived experience to support other family carers; and (3) creating a collective momentum for advocacy and change. CONCLUSIONS: Family carers motivations to being part of the SCG was driven by their intent to help carers navigate the health system and to create a psychosocial support system for other carers experiencing end-of-life with their loved ones. Being part of the SCG provided a benefit to family carers which provided a venue for them to contribute meaningful information from their experience, learn from other health professionals, research and other advisors and an avenue for advocacy work to improve access to end-of-life care supports through education. To our knowledge, this is the first study that explores the motivations of an international group of family advisors' engagement in health research to promote integration of a palliative approach to dementia care in long-term care homes. This study further contributes to the literature from an international perspective the importance of PPI in research. Further research is warranted that explores PPI in research to improve access to end-of-life supports.

Patient and public involvement (PPI) in research has been growing worldwide and ensures that research conducted is relevant to the needs of patients. Within the Family Carer Decisions Support study, we created a Strategic Guiding Council (SGC) to engage family carers of persons with advanced dementia as advisors to improve access to a palliative approach to care. The SGC includes family advisors from Canada, the Republic of Ireland, the United Kingdom, the Netherlands, Italy and the Czech Republic. The goal of the strategy was to engage with family advisors in research activities to improve access to a palliative approach and quality of care provided to people with dementia receiving end-of-life care. Including patients and family in research is extremely important, therefore our aim in this study was to explore family advisors' motivations to engaging in the SGC. Family advisors reported encountering challenges with navigating the health system with end-of-life care and they chose to participate in the SGC to support other carers who are experiencing a similar situation. Being part of the SGC also provided the family advisors with an avenue to advocate on the importance of improving access to end-of-lifesupports and the opportunity to learn from other advisors, health professionals and researchers.

Understanding the impact related to lifestyle interventions for people with dementia: A systematic review protocol.

There is growing evidence to suggest that lifestyle initiatives promote brain health and reduce dementia risk. However, there is comparatively limited research focused on lifestyle interventions among people living with dementia. Most recent systematic reviews of lifestyle interventions among people living with dementia centre on the impact of exercise on cognition; yet, functional abilities and quality of life are most consistently prioritized by people living with dementia, care partners, and healthcare professionals. There is insufficient evidence to inform guidelines on effective lifestyle interventions, programs, resources, and policies for people living with dementia. To address this knowledge gap, the objective of this study is to perform a systematic review to understand the impact of lifestyle interventions among people living with dementia. The specific research questions are: "What is the effectiveness of physical activity interventions on improving functional abilities and quality of life among community-dwelling people living with dementia?", "What is the effectiveness of healthy eating/nutrition on improving nutritional status or quality of life among community-dwelling people living with dementia?" and "Does the effectiveness of interventions vary depending on the components (single or multi), setting (in-home or community centre, geography), program structure, mode of delivery, dosage, and participant characteristics (sex/gender, ethno-cultural or language group, race, dementia type)?" The results from this review will inform recommendations of lifestyle interventions and their delivery among people living with dementia in the community. Trial registration: Systematic review registration PROSPERO #CRD42024509408.

Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end-of-life.

BACKGROUND: Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long-term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end-of-life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries. RESEARCH DESIGN AND OBJECTIVE: An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention. FINDINGS: Thirty-eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI. DISCUSSION AND IMPLICATIONS: International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources. PATIENT OR PUBLIC CONTRIBUTION: PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript.

Acceptability and preliminary effects of the volunteer-supported Meaningful Moments program to engage older adults with advanced dementia on a hospital-based specialized dementia care unit: a mixed methods study.

BACKGROUND: Namaste Care offers practical skills for healthcare providers, volunteers, and families to meaningfully engage individuals with dementia in activities (e.g., music, massage, reminiscing, socialization, aromatherapy, snacks). A hospital-based specialized dementia care unit for patients with mid- to late-stage dementia offered an adapted version of the Namaste Care program, which was called Meaningful Moments. The aim of this study was to assess the acceptability and preliminary effects of this novel approach using trained volunteers for older adults with mid- to late-stage dementia. METHODS: A mixed methods multiphase design was used. Qualitative description was used to explore acceptability of the Meaningful Moments program delivered over 6 months through focus groups (e.g., charge nurses, therapeutic recreationists, nurses, social workers) and individual interviews with one volunteer and two family members. A prospective pre-post-test study design was used to evaluate the preliminary effects of the program for patients with dementia and family members. Outcomes included quality of life, neuropsychiatric symptoms, and pain for patients with dementia and family carer role stress and the quality of visits for families. Data were collected from June 2018 to April 2019. Descriptive analyses of participants' characteristics were expressed as a mean (standard deviation [SD]) for continuous variables and count (percent) for categorical variables. Focus group and individual interview data were analyzed using thematic analysis. The generalized estimating equations (GEE) method was used to assess change in the repeated measures outcome data. RESULTS: A total of 15 patients received the Meaningful Moments interventions. Families, staff, and volunteers perceived that patients experienced benefits from Meaningful Moments. Staff, volunteers, and families felt fulfilled in their role of engaging patients in the Meaningful Moments program. Individualized activities provided by volunteers were perceived as necessary for the patient population. There were no statistically significant improvements in patient outcomes. There was a statistically significant decline in family carer role stress. CONCLUSIONS: Using a one-on-one approach by volunteers, patients experienced perceived benefits such as improved mood and opportunities for social interactions. There is a need for tailored activities for older adults with advanced dementia through practical strategies that can offer benefit to patients.

Insight into the experiences of caregivers of older adults in long-term care homes: A photovoice study.

AIMS: To explore the lived experiences of caregivers of people living in long-term care (LTC) homes during the initial phases of the COVID-19 pandemic and potential supports and resources needed to improve caregivers' quality of life. BACKGROUND: Carers (or care partners) of adults in LTC contribute substantially to the health and well-being of their loved ones by providing physical care, emotional support and companionship. Despite their critical role, little is known about how caregivers have been impacted by the pandemic. DESIGN: An interpretive descriptive approach that incorporated the photovoice method was used. METHODS: Using a purposive sampling strategy, six family carers in Ontario, Canada were recruited between September and December 2021. Over a 4-week period, caregivers took pictures depicting their experience of the pandemic that were shared in a virtual focus group. Visual and text data were analysed using thematic analysis with an inductive approach. FINDINGS: Caregivers expressed feelings of frustration, confusion and joy. Emerging themes included: (i) feeling like a 'criminal' amidst visitor restrictions and rules; (ii) experiencing uncertainty and disappointment in the quality of care of long-term care homes; (iii) going through burnout; and (iv) focusing on small joys and cherished memories. CONCLUSIONS: The combination of visual and textual methods provided unique insight into the mental distress, isolation and intense emotional burdens experienced by caregivers during the pandemic. IMPACT: Our findings underscore the need for LTC organizations to work in unison with caregivers to optimize the care of residents and support the mental health of caregivers. REPORTING METHOD: This work adhered to the consolidated criteria for reporting qualitative research (COREQ) checklist. PUBLIC CONTRIBUTIONS: The caregivers included in the study were involved in the co-creative process as active contributors informing the design and validation of the codes and themes.

"Picturing a Way Forward": Strategies to Manage the Effects of COVID-19-Related Isolation on Long-Term Care Residents and Their Informal Caregivers.

BACKGROUND AND OBJECTIVES: Strategies to manage the coronavirus disease 2019 (COVID-19) pandemic included widespread use of physical distancing measures. These well-intended strategies adversely affected long-term care (LTC) residents' socialization and their caregiving arrangements, leading to exacerbation of social isolation and emotional distress for both residents and their caregivers. This study aimed to understand how these measures affected informal caregivers of people living in LTC homes in Ontario. Strategies to increase socialization and promote social connection during and post-COVID-19 were also explored. RESEARCH DESIGN AND METHODS: This qualitative study used descriptive and photovoice approaches. Of the 9 potential caregivers identified, 6 participated in the study and shared their experiences and photographic reflections in virtual focus group sessions. RESULTS: Findings highlighted the increased social isolation experienced by people living in LTC and their caregivers during COVID-19. Caregivers reported pronounced declines in residents' well-being and were frustrated by challenges connecting with their family members during quarantine. Attempts made by LTC homes to maintain social connections, such as window visits and video calls, did not fulfill the social needs of residents and their caregivers. DISCUSSION AND IMPLICATIONS: Findings underscore a need for better social support and resources for both LTC residents and their caregivers going forward to prevent further isolation and disengagement. Even in times of lockdown, LTC homes must implement policies, services, and programs that promote meaningful engagement for older adults and their families.

Supporting the "hallway residents": a qualitative descriptive study of staff perspectives on implementing the Namaste Care intervention in long-term care.

BACKGROUND: Long-term care (LTC) settings are becoming home to an increasing number of people living with advanced or late-stage dementia. Residents living with advanced dementia represent some of society's most vulnerable and socially excluded populations and are thus at an increased risk of social isolation. A multisensory intervention tailored to this population, Namaste Care, has been developed to improve quality of life for residents living with advanced dementia in LTC homes. To date, limited research has explored the perspectives of staff in implementing the Namaste Care program with an emphasis on social inclusion of residents in Canadian LTC homes. This study aimed to describe the perspectives of LTC staff on the implementation facilitators and barriers of Namaste Care as a program to support the social inclusion of residents living with advanced dementia. METHODS: Using a qualitative descriptive design, semi-structured interviews (n = 12) and focus groups (n = 6) were conducted in two LTC homes in Southern Ontario, Canada, over a 6-month period. Convenience sampling was used to recruit LTC home staff from the two participating sites. Thematic analysis was used to analyze data. RESULTS: LTC staff (n = 46) emphasized the program's ability to recognize the unique needs of residents with advanced dementia, and also stated its potential to facilitate meaningful connections between families and residents, as well as foster care partnerships between staff and families. Findings indicated staff also perceived numerous facilitators and barriers to Namaste Care. In particular, providing staff with dedicated time for Namaste Care and implementing volunteer and family participation in the program were seen as facilitators, whereas the initial perception of the need for extra staff to deliver Namaste Care and identifying times in the day where Namaste Care was feasible for residents, families, and staff, were seen as barriers. CONCLUSIONS: LTC staff recognized the need for formalized programs like Namaste Care to address the biopsychosocial needs of residents with advanced dementia and offer positive care partnership opportunities between staff and family members. Although staffing constraints remain the largest barrier to effective implementation, staff valued the program and made suggestions to build LTC home capacity for Namaste Care.

Experiences of Families, Staff, Volunteers, and Administrators With Namaste Care for Persons With Advanced Dementia in Canadian Long-Term Care Homes.

OBJECTIVE: To explore the experiences of the Namaste Care intervention for persons with advanced dementia (ie, moderate and late-stage) in long-term care (LTC). DESIGN: A qualitative descriptive design was used. Staff Carers (eg, personal support worker, nurse, or activity aide) delivered Namaste Care with the support of volunteers in a small group. Activities provided during the Namaste Care sessions to enhance quality of life included massages, aromatherapy, music, and snacks/beverages. SETTING AND PARTICIPANTS: Family carers of residents with advanced dementia, LTC staff, administrators, and volunteers from 2 Canadian LTC homes, located in a midsize metropolitan area, were included. METHODS: Experiences and acceptability of Namaste Care was assessed through semistructured interviews ranging from 30 to 60 minutes following the 6-month study duration period with family carers, LTC staff, administrators, and volunteers. Thematic analysis was used for interview transcripts. RESULTS: A total of 16 family carers and 21 LTC staff, administrators, and volunteers participated in the study. Namaste Care was found to be acceptable and successful in enhancing the quality of life of residents due to collaborative efforts of all group of participants. Families, volunteers, and staff noted positive responses in residents, such as smiling and laughing. The program environment supported the development of relationships within the LTC community, which included families, residents, staff, and volunteers. CONCLUSIONS AND IMPLICATIONS: Namaste Care was perceived by the LTC community as an acceptable intervention for persons with advanced dementia. It was perceived as offering multiple benefits for residents with advanced dementia such as improved communication and mood.

Feasibility and Effects of Namaste Care for Persons with Advanced Dementia in Canadian Long-Term Care Homes.

OBJECTIVE: To evaluate the feasibility and effects of the Namaste Care intervention for persons with advanced dementia (ie, moderate and late-stage) in long-term care (LTC) and their family carers. DESIGN: A pre-posttest study design. Staff carers delivered Namaste Care for residents with the support of volunteers in a small group setting. Activities provided included aromatherapy, music, and snacks/beverages. SETTING AND PARTICIPANTS: Residents with advanced dementia and family carers from 2 Canadian LTC homes, located in a midsize metropolitan area, were included. METHODS: Feasibility was evaluated using a research activity log. Outcome data for residents (ie, quality of life, neuropsychiatric symptoms, pain) and family carers (ie, role stress, quality of family visits) were collected at baseline and 3 and 6 months of the intervention. Descriptive analyses and generalized estimating equations were used for quantitative data. RESULTS: A total of 53 residents with advanced dementia and 42 family carers participated in the study. Mixed findings were found for feasibility as not all intervention targets were met. There was a significant improvement in resident neuropsychiatric symptoms at the 3-month time point only (95% CI -9.39, -0.39; P = .033) and family carer role stress at both time points (3-month 95% CI -37.40, -1.80; P = .031; 6-month 95% CI -48.90, -2.09; P = .033). CONCLUSIONS AND IMPLICATIONS: Namaste Care is an intervention with preliminary evidence of impact. Feasibility findings revealed that not all targets were met as the intended number of sessions were not delivered. Future research should explore how many sessions per week are required to lead to an impact. It is important to assess outcomes for both residents and family carers, and to consider enhancing family engagement in delivering the intervention. Given the promise of this intervention, a large-scale randomized controlled trial with a longer follow-up should be conducted to further evaluate its outcomes.

Older adults' experiences and perceived impacts of the Aging, Community and Health Research Unit-Community Partnership Program (ACHRU-CPP) for diabetes self-management in Canada: a qualitative descriptive study.

OBJECTIVES: To assess the experiences and perceived impacts of the Aging, Community and Health Research Unit-Community Partnership Program (ACHRU-CPP) from the perspectives of older adults with diabetes and other chronic conditions. The ACHRU-CPP is a complex 6-month self-management evidence-based intervention for community-living older adults aged 65 years or older with type 1 or type 2 diabetes and at least one other chronic condition. It includes home and phone visits, care coordination, system navigation support, caregiver support and group wellness sessions delivered by a nurse, dietitian or nutritionist, and community programme coordinator. DESIGN: Qualitative descriptive design embedded within a randomised controlled trial was used. SETTING: Six trial sites offering primary care services from three Canadian provinces (ie, Ontario, Quebec and Prince Edward Island) were included. PARTICIPANTS: The sample was 45 community-living older adults aged 65 years or older with diabetes and at least one other chronic condition. METHODS: Participants completed semistructured postintervention interviews by phone in English or French. The analytical process followed Braun and Clarke's experiential thematic analysis framework. Patient partners informed study design and interpretation. RESULTS: The mean age of older adults was 71.7 years, and the mean length of time living with diabetes was 18.8 years. Older adults reported positive experiences with the ACHRU-CPP that supported diabetes self-management, such as improved knowledge in managing diabetes and other chronic conditions, enhanced physical activity and function, improved eating habits, and opportunities for socialisation. They reported being connected to community resources by the intervention team to address social determinants of health and support self-management. CONCLUSIONS: Older adults perceived that a 6-month person-centred intervention collaboratively delivered by a team of health and social care providers helped support chronic disease self-management. There is a need for providers to help older adults connect with available health and social services in the community. TRIAL REGISTRATION NUMBER: ClinicalTrials.gov ID: NCT03664583; Results.

Exploring the factors influencing meaningful engagement of persons living with advanced dementia through the Namaste Care Program: a qualitative descriptive study.

Background: Meaningful engagement has been described as active participation based on a person's interests, preferences, personhood, or perceived value. It has many benefits for persons living with dementia in long-term care (LTC) homes, including improvement in physical and cognitive function, and mental health. People with advanced dementia continue to need and benefit from inclusion and social contact in LTC, yet there is not a well-developed understanding of how to support this. A tailored intervention called Namaste Care has been shown to be an effective approach to meaningfully engage residents in LTC, decrease behavioral symptoms, and improve their comfort and quality of life. There is a need to consider how best to deliver this intervention. Objective: The aim of this study was to describe environmental, social, and sensory factors influencing meaningful engagement of persons with advanced dementia during Namaste Care implementation in LTC. Methods: In this qualitative descriptive study, focus groups and interviews were conducted with families, volunteers, staff, and managers at two LTC homes. Directed content analysis was conducted. The Comprehensive Process Model of Engagement was used as a coding framework. Results: With respect to environmental attributes, participants emphasized that a designated quiet space and a small group format were helpful for engagement. In terms of social attributes, participants emphasized Namaste Care staff capacity to deliver individualized care. Regarding sensorial factors, familiarity with the activities delivered in the program was emphasized. Conclusion: Findings reveal the need to offer small group programs that include adapted recreational and stimulating activities, such as Namaste Care, for residents at the end of life in LTC. Such programs facilitate meaningful engagement for persons with dementia as they focus on individual preferences, comfort, and inclusion while recognizing changing needs and abilities of residents.

Implementation and impacts of virtual team-based care planning for older persons in formal care settings: A scoping review.

Objective: This scoping review aimed to summarize current knowledge about the implementation, impacts, facilitators and barriers of virtual team-based care planning for older persons in formal care settings (e.g. home and community, primary, long-term and acute care). Methods: The Joanna Briggs Institute (JBI) methodology was used. The Arksey and O'Malley and Levac, Colquhoun, and O'Brien methodologies provided additional frameworks. Databases accessed included PubMed, EMBASE, CINAHL, AgeLine, PsycInfo and Scopus. Reference lists of selected articles and grey literature retrieved through Google and Google Scholar were also reviewed. Three researchers screened titles, abstracts and conducted full-text reviews. Extracted data were mapped in a table and analysed for summative themes. Older persons and family partners assisted in interpreting findings based on their lived experiences. Results: A total of 27 studies were included. Virtual team-based care planning led to many positive outcomes for older persons (e.g. decreased depression, reduced falls and improved medication management) and their families (e.g. reduced caregiver stress and improved caregiving skills). Only four studies reported the involvement of older persons and/or families in virtual team-based care planning. Multiple barriers to adopting virtual team-based care planning were found including lack of education/training for older persons and families in using technology. Conclusion: Despite the multiple advantages that virtual team-based care planning offers for older persons and families, it is important to ensure that this care can be offered to all. There is a need to ensure that health equity is addressed to promote access to care and respond to social determinants of health.

Adapting the Namaste Care Program for Use with Caregivers of Community-Dwelling Older Adults with Moderate to Advanced Dementia: A Qualitative Descriptive Study.

Family/friend caregivers are highly involved in supporting older adults with dementia who are 65 years of age or older with daily activities, especially when these older adults with dementia are living at home. There is a need for psychosocial interventions for caregivers of older adults with moderate to advanced dementia, as most interventions focus on persons at earlier stages. Namaste Care is a psychosocial, multisensory program intended to enhance quality of life for people with advanced dementia and their caregivers; however, it has not yet been adapted for use in a home setting. In this study, caregivers collaborated in adapting Namaste Care during workshops so that it could be delivered by caregivers of older adults with moderate to advanced dementia at home. Key findings were that Namaste Care resonated with the daily activities of caregivers, but that the intervention required modifications to ensure that it could be tailored to the needs and realities of caregivers and persons with dementia.

Video Conferencing With Residents and Families for Care Planning During COVID-19: Experiences in Canadian Long-Term Care.

BACKGROUND AND OBJECTIVES: Government-mandated health and safety restrictions to mitigate the effects of coronavirus disease 2019 (COVID-19) intensified challenges in caring for older adults in long-term care (LTC) without family/care partners. This article describes the experiences of a multidisciplinary research team in implementing an evidence-based intervention for family-centered, team-based, virtual care planning-PIECESTM approach-into clinical practice. We highlight challenges and considerations for implementation science to support care practices for older adults in LTC, their families, and the workforce. RESEARCH DESIGN AND METHODS: A qualitative descriptive design was used. Data included meetings with LTC directors and Registered Practical Nurses (i.e., licensed nurse who graduated with a 2-year diploma program that allows them to provide basic nursing care); one-on-one interviews with family/care partners, residents, Registered Practical Nurses, and PIECES mentors; and reflections of the academic team. The Consolidated Framework for Implementation Research provided sensitizing constructs for deductive coding, while an inductive approach also allowed themes to emerge. RESULTS: Findings highlighted how aspects related to planning, engagement, execution, reflection, and evaluation influenced the implementation process from the perspectives of stakeholders. Involving expert partners on the research team to bridge research and practice, developing relationships from a distance, empowering frontline champions, and adapting to challenging circumstances led to shared commitments for intervention success. DISCUSSION AND IMPLICATIONS: Lessons learned include the significance of stakeholder involvement throughout all research activities, the importance of clarity around expectations of all team members, and the consequence of readiness for implementation with respect to circumstances (e.g., COVID-19) and capacity for change.

Improving Family Presence in Long-Term Care during the COVID-19 Pandemic.

Family caregivers play a vital role in supporting the physical and mental health of long-term care (LTC) residents. Due to LTC visitor restrictions during the COVID-19 pandemic, residents (as well as family caregivers) showed significant adverse health outcomes due to a lack of family presence. To respond to these outcomes, eight implementation science teams led research projects in conjunction with Canadian LTC homes to promote the implementation of interventions to improve family presence. Overall, technological and virtual innovations, increased funding to the sector and partnerships with family caregivers were deemed effective methods to promote stronger family presence within LTC.

Using Photovoice as a Method for Capturing the Lived Experiences of Caregivers During COVID-19: A Methodological Insight.

Although the extant literature identifies photovoice as one of the most innovative and creative research methods that encourage reflection and introspection, few studies have described the use of photovoice with family/informal caregivers. This paper discusses the implementation of photovoice as a novel approach in exploring the experiences of informal caregivers (n = 10) of older adults in long-term care homes during the COVID-19 pandemic. The article describes the four stages of the photovoice process undertaken: (1) preparation; (2) pre-focus group meeting; (3) taking photographs; and (4) reflection and implementation insights, to researchers. The different stages in the research process inspired several key learnings, including the use of co-learning tools, the valuable combination of photographic images and words to provide rich description of participants' perspectives, and creative ways to engage and support caregivers in sharing their stories. This paper also addresses some practical challenges of using this methodology with informal caregivers and explore issues surrounding research ethics and photographs. Knowledge gained from this case example provides strong support for the use of photovoice as a creative approach to better illuminate and understand the experiences of caregivers and can inform the design of future virtual studies.

Experiences of caregivers of community-dwelling older persons with moderate to advanced dementia in adapting the Namaste Care program: a qualitative descriptive study.

BACKGROUND: Globally many older persons with dementia are living at home to maintain independence within the community. As older persons with dementia transition from early to moderate or advanced stages of dementia they require more support from family members and friends to complete their daily activities. Family and friend caregivers, however, often report a lack of preparation for their caregiving role. There are few psychosocial programs that can be delivered by caregivers of community-dwelling older persons with moderate to advanced dementia. Namaste Care is a psychosocial intervention, predominantly used in long-term care, to improve the quality of life of persons with advanced dementia. Namaste Care provides multisensory stimulation for persons with dementia through meaningful activities such as music, massage, aromatherapy, and nutrition. There have been limited attempts at adapting Namaste Care for use by caregivers in the community.There is a need to involve caregivers in adapting programs and understanding their experiences in research involvement so that strategies can be put in place for a positive experience. The purpose of this study is to explore the experiences of caregivers who participated in workshop sessions to adapt Namaste Care for community-dwelling older persons with moderate to advanced dementia. METHODS: A qualitative descriptive design was used. Six caregivers residing in Ontario, Canada attended virtual workshop sessions (i.e., by phone or videoconference) that were guided by the Strategy for Patient-Oriented Research (SPOR) Patient Engagement Framework. Caregivers completed individual post-workshop interviews. Experiential thematic analysis was used to analyze interviews and post-interview researcher notes. RESULTS: Key findings were that caregivers had a positive experience in adapting Namaste Care by learning how to improve their caregiving skills and being supported to engage in research through multiple facilitators such as flexible scheduling and an inclusive and respectful environment. Having designated time for discussions between caregivers was perceived as important to forming partnerships within the group to support co-creation of knowledge. CONCLUSION: Findings support the need to improve caregiver research engagement processes by ensuring that caregivers can benefit through learning opportunities and discussions and empowering caregivers to value their contributions in adapting interventions.

As older persons with dementia transition from early to moderate or advanced stages of dementia they require more support from family and friend caregivers to accomplish their daily activities. Caregivers, however, often report a lack of preparation for their caregiving role. There are few programs focusing on skill-building and positive interactions that can be delivered by caregivers of older persons with moderate to advanced dementia at home. Namaste Care is a program originally created for long-term care that provides multisensory stimulation for persons with dementia through activities such as music, massage, aromatherapy, and nutrition. It has not yet been adapted for use by caregivers in the community. There is a need to involve caregivers in adapting programs and understanding their experiences in research involvement. The purpose of this study is to explore the experiences of caregivers who participated in workshops to adapt Namaste Care for older persons with moderate to advanced dementia at home. A qualitative descriptive design was used. Six caregivers from Ontario, Canada attended virtual workshop sessions (i.e., by phone or videoconference) and completed individual post-workshop interviews. Interviews and notes were analyzed for themes. Key findings were that caregivers had a positive experience by learning how to improve their caregiving skills and being supported to engage in research through numerous strategies such as flexible scheduling and an inclusive environment. Findings support the need to improve caregiver research engagement by ensuring that caregivers experience benefits from their involvement and empowering them to value their contributions in adapting interventions.

Nurse-Led Virtual Delivery of PIECES in Canadian Long-Term Care Homes to Support the Care of Older Adults Experiencing Responsive Behaviors During COVID-19: Qualitative Descriptive Study.

BACKGROUND: Worldwide, the COVID-19 pandemic has resulted in profound loss of life among older adults living in long-term care (LTC) homes. As a pandemic response, LTC homes enforced infection control processes, including isolating older adults in their rooms, canceling therapeutic programs, and restricting family member visits. Social isolation negatively impacts older adults in LTC, which may result in increased rates of anxiety, depression, physical and cognitive decline, disorientation, fear, apathy, and premature death. Isolation of older adults can also cause an increase in responsive behaviors (eg, yelling, hitting, calling out) to express frustration, fear, restricted movement, and boredom. To respond to the challenges in LTC and support frontline staff, older adults, and family members, a novel registered practical nurse (RPN)-led delivery of the PIECES approach for addressing responsive behaviors among older adults with dementia using virtual training/mentoring was implemented in Canadian LTC homes. PIECES employs a person- and family/care partner-centered collaborative team-based approach to provide education and capacity-building for nurses; engages families as active participants in care; and embeds evidence-informed practices to provide person- and family-centered care to older adults with complex needs, including dementia. OBJECTIVE: The aim of this study was to describe the experiences of LTC staff, family/care partners, and older adult research partners with implementation of a novel RPN-led virtual adaptation of the PIECES care-planning approach for responsive behaviors in two Canadian LTC homes during the COVID-19 pandemic. METHODS: Using a qualitative descriptive design, two focus groups were held with three to four staff members (eg, RPNs, managers) per LTC home in Ontario. A third focus group was held with three PIECES mentors. Individual semistructured interviews were conducted with RPN champions, family/care partners, and older adult research partners. Research team meeting notes provided an additional source of data. Content analysis was performed. RESULTS: A total of 22 participants took part in a focus group (n=11) or an in-depth individual interview (n=11). Participant experiences suggest that implementation of RPN-led virtual PIECES fostered individualized care, included family as partners in care, increased interdisciplinary collaboration, and improved staff practices. However, virtual PIECES, as delivered, lacked opportunities for family member feedback on older adult outcomes. Implementation facilitators included the provision of mentorship and leadership at all levels of implementation and suitable technological infrastructure. Barriers were related to availability and use of virtual communication technology (family members) and older adults became upset due to lack of comprehension during virtual care conferences. CONCLUSIONS: These findings offer promising support to adopting virtual PIECES, a team approach to gather valuable family input and engagement to address residents' unmet needs and responsive behaviors in LTC. Future research should investigate a hybridized communication format to foster sustainable person- and family-centered care-planning practices to include active collaboration of families in individualized care plans.

Feasibility, acceptability, and preliminary effectiveness of the adapted Namaste Care program delivered by caregivers of community-dwelling older persons with moderate to advanced dementia: a mixed methods feasibility study.

BACKGROUND: Caregivers have considerable responsibilities in supporting persons in advanced stages of dementia, however they receive little education. Namaste Care is a multisensory program originally designed to be delivered by healthcare providers in long-term care homes for persons with advanced dementia. The program has not yet been adapted and evaluated for use by caregivers of persons with moderate to advanced dementia living at home. The purpose of this feasibility study is to determine the feasibility, acceptability and preliminary effectiveness of the adapted Namaste Care program for use by caregivers of community-dwelling older persons with moderate to advanced dementia. METHODS: This feasibility study, with a one-group before-after design and interviews, was part of a larger study using a multiphase mixed methods design. A total of 12 caregivers delivered the program over three months. Caregivers completed questionnaires on caregiver quality of life, perceptions of caregiving, self-efficacy, and burden at baseline and 3-month follow-up. Caregivers participated in interviews at the 3-month follow-up to explore acceptability and perceived benefit. Descriptive statistics and paired t-tests were used to analyze quantitative data. A secondary analysis used multiple imputation to explore the impact of missing data. Experiential thematic analysis was used in analyzing qualitative data. RESULTS: The adapted Namaste Care program was judged to be feasible, given that all caregivers used it at least twice a week over the 3-month period. The retention rate of caregivers was 83% (10 of 12). Caregivers perceived that the program was practical, enhanced the wellbeing of persons with dementia, and brought them closer in their relationships with persons with dementia. There were no statistically significant changes for quality of life, perceptions of caregiving, self-efficacy, or burden outcomes. Multiple imputation results revealed promising findings for an improvement in caregiver wellbeing related to quality of life. CONCLUSIONS: The adapted Namaste Care program for use by caregivers of community-dwelling older persons with moderate to advanced dementia was feasible and acceptable. The program has the potential to enhance the quality of life and other outcomes of caregivers, however there is a need to conduct a larger trial that is adequately powered to detect these effects.

The Aging, Community and Health Research Unit Community Partnership Program (ACHRU-CPP) for older adults with diabetes and multiple chronic conditions: study protocol for a randomized controlled trial.

BACKGROUND: Older adults (≥65 years) with diabetes and multiple chronic conditions (MCC) (> 2 chronic conditions) experience reduced function and quality of life, increased health service use, and high mortality. Many community-based self-management interventions have been developed for this group, however the evidence for their effectiveness is limited. This paper presents the protocol for a randomized controlled trial (RCT) comparing the effectiveness and implementation of the Aging, Community and Health Research Unit-Community Partnership Program (ACHRU-CPP) to usual care in older adults with diabetes and MCC and their caregivers. METHODS: We will conduct a cross-jurisdictional, multi-site implementation-effectiveness type II hybrid RCT. Eligibility criteria are: ≥65 years, diabetes diagnosis (Type 1 or 2) and at least one other chronic condition, and enrolled in a primary care or diabetes education program. Participants will be randomly assigned to the intervention (ACHRU-CPP) or control arm (1:1 ratio). The intervention arm consists of home/telephone visits, monthly group wellness sessions, multidisciplinary case conferences, and system navigation support. It will be delivered by registered nurses and registered dietitians/nutritionists from participating primary care or diabetes education programs and program coordinators from community-based organizations. The control arm consists of usual care provided by the primary care setting or diabetes education program. The primary outcome is the change from baseline to 6 months in mental functioning. Secondary outcomes will include, for example, the change from baseline to 6 months in physical functioning, diabetes self-management, depressive symptoms, and cost of use of healthcare services. Analysis of covariance (ANCOVA) models will be used to analyze all outcomes, with intention-to-treat analysis using multiple imputation to address missing data. Descriptive and qualitative data from older adults, caregivers and intervention teams will be used to examine intervention implementation, site-specific adaptations, and scalability potential. DISCUSSION: An interprofessional intervention supporting self-management may be effective in improving health outcomes and client/caregiver experience and reducing service use and costs in this complex population. This pragmatic trial includes a scalability assessment which considers a range of effectiveness and implementation criteria to inform the future scale-up of the ACHRU-CPP. TRIAL REGISTRATION: Clinical Trials.gov Identifier NCT03664583 . Registration date: September 10, 2018.