Measuring what matters to older persons for active living: part I content development for the OPAL measure across four countries.

AIMS: Many older persons do not think of themselves as "patients" but as persons wishing to live as actively as possible for as long as possible. However, most health-related quality of life (HRQL) measures were developed for use with clinical populations. The aim of this project was to fill that gap and to develop, for international use, a measure of what matters to older persons as they age and seek to remain as active as possible, Older Persons for Active Living (OPAL). METHODS: For content development, interviews about active living were conducted with older persons from Canada, USA, UK, and the Netherlands in English, French, Spanish and Dutch, respectively with subsequent thematic analysis and harmonization. RESULTS: Analyses of transcripts from 148 older persons revealed that active living was a "way of being" and not merely doing activities. Saturation was reached and a total of 59 content areas were identified. After grouping similar "ways" together and after conducting a consensus rating of importance, 19 unique and important "ways" remained. In some languages, formulating was challenging for three of the 19, resulting in changes to two English words and dropping two other words, yielding a final list of 17 "ways of being" with harmonized wording in 4 languages. CONCLUSION: This study underscores the significance of listening to older adults and highlights the importance of considering linguistic and cultural nuances in measure development.

A Scoping Review to Contribute to Knowledge About Culturally Adapting Interventions for Latino Family Caregivers of Persons Living With Dementia.

INTRODUCTION: Few interventions have focused on Latino family caregivers to persons with dementia, addressing their unique needs. This review aimed to identify best practices in cultural adaptation to make recommendations for adapting interventions for Latino family caregivers of persons living with dementia. METHOD: This scoping review was conducted following the Joanna Briggs Institute Scoping Review guidelines, with findings extracted and summarized from 17 studies addressing cultural adaptation. RESULTS: Frameworks guiding the adaptations were comprehensive, addressing cultural values and traditions and the social context faced by Latino family caregivers. Features of the adaptations included diverse teams of researchers and community members, including Latino family caregivers, to inform the integration of cultural values into the content, mode, and place of intervention delivery. DISCUSSION: Culturally adapting evidence-based interventions will increase the number of available interventions for Latino family caregivers to persons living with dementia, thus reducing inequities in caregiver support.

A randomised controlled trial of the Learning Skills Together (LST) intervention to improve dementia family caregivers' self-efficacy with complex care.

BACKGROUND: Nearly two-thirds of family caregivers of persons living with Alzheimer's disease or related dementias (AD/ADRD) provide complex care, including medical care. Family caregivers typically receive little to no training on how to provide this care. Furthermore, family caregivers simultaneously grapple with the presence of behavioral and psychological symptoms of dementia (BPSD), diminished communication abilities, and comorbidities such as diabetes. We developed Learning Skills Together (LST), a 6-week digitally delivered psychoeducational program, to facilitate family caregiver abilities to administer complex care tasks. The goal of the present study is to test the efficacy of LST and to reduce adverse outcomes associated with caregiving, such as depressive symptomology and negative appraisal of BPSD. METHODS: To test the efficacy of LST, we will conduct a two-arm single-site randomized controlled trial (RCT) with N = 200 family caregivers of persons living with AD/ADRD. Eligible family caregivers will be randomly assigned to participate in either the LST intervention or a structurally equivalent control condition focused on healthy living. All family caregivers will complete four surveys, including a baseline survey administered prior to randomization, a post-intervention survey, and a 3- and 6-month follow-up survey to assess change in study outcomes. Between-group comparisons of each outcome will be evaluated using generalized estimating equation models. Mediation analyses will assess family caregiver self-efficacy as the intervention's mechanism of change in depressive symptomology and BPSD. We will also examine caregiver race, ethnicity, and gender as effect modifiers of the intervention. DISCUSSION: LST findings will inform the field of AD/ADRD and caregiving regarding optimally supporting family caregivers in managing complex care tasks. If efficacious, the LST intervention will support family caregivers in preserving their own mental health while providing complex care. TRIAL REGISTRATION: Clinical Trials.gov NCT05846984 . This study was registered on May 6, 2023.

A randomised controlled trial of the Learning Skills Together (LST) intervention to improve dementia family caregivers' self-efficacy with complex care.

Background: Nearly two-thirds of family caregivers of persons living with Alzheimer's disease or related dementias (AD/ADRD) provide complex care, including medical care. Family caregivers typically receive little to no training on how to provide this care. Furthermore, family caregivers simultaneously grapple with the presence of behavioral and psychological symptoms of dementia (BPSD), diminished communication abilities, and comorbidities such as diabetes. We developed Learning Skills Together (LST), a six-week digitally delivered psychoeducational program, to facilitate family caregiver abilities to administer complex care tasks. The goal of the present study is to test the efficacy of LST and to reduce adverse outcomes associated with caregiving, such as depressive symptomology and negative appraisal of BPSD. Methods: To test the efficacy of LST, we will conduct a two-arm single-site randomised controlled trial (RCT) with N = 200 family caregivers of persons living with AD/ADRD. Eligible family caregivers will be randomly assigned to participate in either the LST intervention or a structurally equivalent control condition focused on healthy living. All family caregivers will complete four surveys, including a baseline survey administered prior to randomisation, a post-intervention survey, and a three- and six-month follow-up survey to assess change in study outcomes. Between-group comparisons of each outcome will be evaluated using generalized estimating equation models. Mediation analyses will assess family caregiver self-efficacy as the intervention's mechanism of change in depressive symptomology and BPSD. We will also examine caregiver race, ethnicity, and gender as effect modifiers of the intervention. Discussion: LST findings will inform the field of AD/ADRD and caregiving regarding optimally supporting family caregivers in managing complex care tasks. If efficacious, the LST intervention will support family caregivers in preserving their own mental health while providing complex care.

Project ECHO Brain Health: Assessing the Impact of a Pilot Program to Promote Self-Efficacy Among Community Health Workers.

This mixed-methods study sought to examine the impact of the Project ECHO Brain Health program on participating community health workers' (CHWs') self-efficacy to address dementia, promote brain health, and advocate for research among Latinx South Texas communities. Using an explanatory sequential design, quantitative data collected from pre- and post-program surveys were analyzed to inform the collection of qualitative data, followed by an interpretation of all findings to better understand the impact of the program on self-efficacy. Pre- and post-surveys were collected from 25 CHWs, 13 of whom later participated in individual interviews. There was a statistically significant increase in mean self-efficacy scores between the pre- and post-surveys among participants. Three categories reflecting the experiences of participants were identified from the qualitative data: addressing training needs; impact on CHWs and their practice; and community of learning. The findings suggest that Project ECHO Brain Health program is a timely intervention that may facilitate increased self-efficacy among CHWs as they navigate the impacts of dementia in their communities.

Self-regulatory coping among community dwelling older adults with multiple chronic conditions.

Objectives: Many older adults with multiple chronic conditions (MCC) frequently experience hospitalizations, functional limitations, and poor quality of life. Outcomes may be improved by promoting self-regulation, which may individuals respond to health threats and manage their health conditions. The aim of this study was to describe self-regulatory coping among older adults with MCC. Methods: A qualitative descriptive study using semi-structured interviews and content analysis and guided by the Common-Sense Self-Regulation Model. Seventeen community-dwelling older adults with two or more chronic conditions participated in our study. Results: Three themes were developed from the analysis: (1) "I don't think about it unless something happens": coping in the absence of a health event, (2) "doing what I am supposed to do": coping during a health event, and (3) "How do I know if what I did works?": appraisal of coping success. Discussion: Self-regulatory coping was influenced by individual beliefs and experiences (illness representations), context, self-efficacy and availability of support and resources to cope with MCC. These findings suggest implications for clinical practice and future self-regulation interventions for older adults with MCC.

"An animated socialization without substance:" experiences of persons living with dementia through the COVID-19 pandemic.

BACKGROUND: Like so many others, persons living with dementia have been greatly impacted by the COVID-19 pandemic. A Stakeholder Advisory Council set a research priority to learn more about the experiences of families living with dementia during COVID-19. METHODS: This study was conducted using a multi-method design. Online surveys were completed by 27 persons living with dementia to rate the impact of COVID-19 on their health and healthcare. Additionally, interviews (n = 3) and two focus groups were conducted via Zoom with eight participants to explore the experiences of persons living with dementia during COVID-19. RESULTS: Most participants in this study reported that COVID-19 had some to extreme impact on their anxiety, feelings of isolation, and quality of life. Focus groups and interviews provided context and increased understanding of the main survey findings, with participants also describing other concerns and how they were coping with all of the challenges that came with COVID-19. Five themes from the qualitative data were health, isolation, feelings about COVID-19, adapting to COVID-19, and self-refection. DISCUSSION: Although persons living with dementia described the ways that COVID-19 impacted on their quality of life, they also described strategies for coping. For those persons living with dementia who are able to utilize technology, this study highlights the ongoing need to provide virtual opportunities for socialization and support. These findings also emphasize the need to create safe opportunities for socialization such as small socially distanced activities that may allow persons living with dementia to maintain social connections through the COVID-19 pandemic and throughout the progression of their disease.

"A Different Way to Survive": The Experiences of Family Caregivers of Persons Living With Dementia During the COVID-19 Pandemic.

Family caregivers of persons living with dementia often experience challenges to their health and quality of life related to their caregiving role. The COVID-19 pandemic added substantially to the responsibilities of family caregivers, potentially putting them at greater risk of poor health outcomes and impeded quality of life. To better understand the impact of the pandemic on the experiences of family caregivers, a multimethods study was conducted. Family caregivers of persons living with dementia were invited to complete a cross-sectional survey and a subset of survey respondents were invited to participate in focus groups for added insight. A total of 161 caregivers responded to the survey and 30 participated in the focus groups. Qualitative data from focus groups were used to elucidate deeper insight into quantitative findings from the survey. Findings reflect that the pandemic affected family caregiver health and wellness, access of care and resources, identity, and resilience.

A Multiple Stakeholder Perspective on the Impact of COVID-19 on Dementia Care.

The aim of this study was to describe the impact of the COVID-19 pandemic on dementia care from a multiple stakeholder perspective. We used a multi-method design, with a cross-sectional survey followed by focus groups/interviews. Surveys were completed by people living with dementia (n = 27), family caregivers (n = 161), and health and social care professionals (n = 77). A sub-sample (n = 55) participated in an interview or one of 9 focus groups. Surveys were analyzed with descriptive statistics and focus group/interview data were analyzed using a thematic approach. Participants reported an impact of COVID-19 on dementia care, including less access to care and resources for care. Telehealth and tele-support/education were reported to be effective alternatives to support care. Themes from the qualitative data about dementia care were: (1) planning and providing care, (2) making choices around risk and safety, (3) experiences of loss, and (4) technology and dementia care. The results of this study present opportunities to improve the quality of care through addressing inequities and identifying improved and innovative approaches to address social isolation and virtual care for this vulnerable population.

Family caregivers' perceptions and experiences of participating in the learning skills together intervention to build self-efficacy for providing complex care.

The purpose of this study was to describe how an intervention to teach family caregivers of persons living with dementia to provide complex care tasks contributes to their self-efficacy. This qualitative study was embedded in a pilot study evaluating the intervention. Semi-structured interviews were conducted with 15 caregivers who had completed the intervention. Content analysis was used to analyze the data. Themes identified from the interviews were: "helpfulness of the content", "if they can do it, so can I", and "applying what I have learned". Caregivers described the helpfulness of learning from expert healthcare professionals in a supportive environment. They valued the group setting, including interacting with and learning from their peers. Caregivers demonstrated mastery of the content by applying it to their caregiving situations and sharing information with other family members. These findings provide insights into successful elements in a complex care intervention that contributed to building caregiver self-efficacy.

Caregiver self-efficacy improves following complex care training: Results from the Learning Skills Together pilot study.

Family caregivers to persons living with dementia increasingly provide complex care tasks, though most (53%) do so without any training. "Complex care" includes medical/nursing tasks, as well as personal care tasks that require disease knowledge. Of the 67% of dementia caregivers who provide complex care, nearly half worry about making a mistake. To help caregivers feel more confident when providing complex care tasks, we developed and conducted a pilot study of the 4-week Learning Skills Together psychoeducation program (LST; N=35). Participants in LST reported high satisfaction with the program and found the information shared about complex care was easy to understand. Pre- and post-test data demonstrated improvements in mean caregiver self-efficacy at both 4-weeks and 8-weeks post-intervention (mean difference (MD)=1.0, SD= 1.6, p-value=0.004 and MD= 1.0, SD=2.2, p-value=0.038, respectively). Results demonstrate the potential for a brief psychoeducational program to prepare caregivers to provide complex care to persons living with dementia.

Prioritising well-being and resilience to 'build back better': insights from a Dominican small-scale fishing community.

Climate change is increasing the severity of extreme weather events, particularly hurricanes, presenting a significant challenge to Caribbean coastal communities. In the aftermath of a major disaster, government interventions typically prioritise infrastructure, assets, and the economy through rebuilding roads, reviving economic sectors, and providing financial compensation. This is driven by a focus on macro-level quantitative indicators rather than by local, multidimensional subjective and relational factors, closer to lived experiences and livelihoods. Using frameworks outlining social well-being and agency, this paper explores strategies used by a fisheries-dependent community in Dominica to recover from Hurricane Maria in 2017 and pursue well-being. The findings highlight the importance of multidimensional well-being, particularly relational and subjective dimensions, including existing social networks, and personal relationships critical for recovery after Maria. Furthermore, the paper demonstrates how recovery initiatives that concentrate solely on material well-being, such as employment, can undermine agency in the capacity of a community to recover and build resilience.

An Interprofessional Skills Workshop to Teach Family Caregivers of People Living with Dementia to Provide Complex Care.

The purpose of this study was to evaluate the acceptability of and satisfaction with an interprofessional educational workshop to teach family caregivers of persons living with dementia to provide complex care. The workshop was developed by a team that included nursing, occupational therapy, speech-language pathology, nutrition and dental hygiene. Caregivers who attended the workshop completed an evaluation to describe their satisfaction and acceptability using a Likert-type scale, as well as open ended comments about their learning needs and feedback about the workshop. Semi-structured interviews were conducted with family caregivers and members of the interprofessional team to analyze and evaluate how the workshop may have improved their confidence in performing complex tasks and to obtain their perspectives on offering this program as a virtual workshop in the future. Family caregivers (n=171) reported high satisfaction with the workshop and strongly agreed that the workshop provided them with useful information to support their caregiving roles. Themes identified from the content of the interviews were: i) building understanding; ii) mastering new skills; and iii) learning skills together. Our results suggest and emphasize the importance and the benefits of an interprofessional team approach to support family caregivers and build confidence with complex care.

Simulation learning to train healthcare students in person-centered dementia care.

In coming decades, healthcare providers will treat a greater number of individuals living with Alzheimer's Disease and related dementias than ever. Simulation-based learning provides experiential learning opportunities to enhance clinical training, but little is known about how dementia simulation training improves understanding of dementia or how it changes in participants' ability to deliver high-quality healthcare to individuals living with dementia. In this study, we examine how a simulation training program may prepare healthcare trainees to treat individuals living with dementia. We conducted eight in-depth, one-on-one interviews with healthcare trainees who participated in the Virtual Dementia Tour (VDT) program and faculty who added VDT to their curricula, and also examined 20 reflection papers from students following participation in VDT. A thematic analysis of qualitative data led us to three themes: 1) dementia simulation complements and enhances traditional teaching methods, 2) dementia simulation helps students to understand the experiences of people living with dementia, and 3) experiential learning inspired students to reflect on actions they would take as clinicians and leaders to support individuals living with dementia and their families. Based on these findings, we propose a modified transformative learning process for dementia simulation training with healthcare students.

Conceptualizing How Caregiving Relationships Connect to Quality of Family Caregiving within the Stress Process Model.

Family caregivers provide the majority of care for older and disabled family members living with an illness or disability. Although most caregivers want to provide high-quality care, many report providing care that is potentially harmful. We apply the Stress Process Model to review the preponderance of literature implicating quality of the relationship between caregivers and care recipients as a factor contributing to quality of family caregiving. In drawing together literature on caregiving relationships and caregiving quality, this commentary identifies potentially modifiable intervention targets to develop programs to support high-quality caregiving to older adults living with a chronic illness or disability.

Is Blood Pressure Lowering in the Very Elderly With Previous Stroke Associated With a Higher Risk of Adverse Events?

Background We investigated whether blood pressure lowering for secondary prevention is associated with a reduction in recurrent stroke risk and/or a higher risk of adverse events in very elderly compared with younger trial participants. Methods and Results This is a random effects meta-analysis of randomized controlled trials of blood pressure lowering for secondary stroke prevention to evaluate age-stratified (<80, ≥80 years) risk of adverse events. Ovid-MEDLINE was searched for trials between 1970 and 2020. Summary-level data were acquired including outcomes of stroke, cardiovascular events, mortality, and adverse events. Seven trials were included comprising 38 596 participants, of whom 2336 (6.1%) were aged ≥80 years. There was an overall reduction in stroke risk in the intervention group compared with controls (risk ratio [RR], 0.90 [95% CI, 0.80, 0.98], I2=49%), and the magnitude of risk reduction did not differ by age subgroup (<80, ≥80 years). There was no increase in the risk of hypotensive symptoms in the intervention group for patients aged <80 years (RR, 1.19 [95% CI, 0.99], 1.44, I2=0%), but there was an increased risk in those ≥80 years (RR, 2.17 [95% CI, 1.22], 3.86, I2=0%). No increase was observed in the risk of falls, syncope, study withdrawal, or falls in either age subgroup. Conclusions Very elderly people in secondary prevention trials of blood pressure lowering have an increased risk of hypotensive symptoms, but with no statistical increase in the risk of falls, syncope, or mortality. However, evidence is lacking for frail elderly with multiple comorbidities who may be more vulnerable to adverse effects of blood pressure lowering.

Engagement with a diverse Stakeholder Advisory Council for research in dementia care.

BACKGROUND: The inclusion of stakeholders throughout the research process has been gaining recognition as an approach that can improve the quality and impact of research. Stakeholder engagement for dementia care research has been identified as a national priority, though evaluation of engagement strategies and their impact has been limited. In dementia care research, stakeholders can include individuals living with dementia, family care partners, and health and social care professionals in dementia care. A Stakeholder Advisory Council (SAC) was established to identify priorities for dementia care research that are most important to stakeholders. Strategies to build capacity for research and facilitate engagement among the SAC were used to identify the research priorities. This study describes the experiences of SAC members engaged in the research process. METHODS: To evaluate stakeholder engagement, semi-structured interviews were conducted with members of the SAC to understand their experiences and perspectives on the strategies used to facilitate engagement and build capacity for research. Interviews were recorded, transcribed, and thematically analyzed using a mixed inductive and deductive approach. Findings were presented to members of the SAC to determine whether they felt their perspectives and experiences were accurately represented. Final domains and themes presented here were approved by the SAC. RESULTS: Interviews (N = 11) were conducted with members of the SAC representing each stakeholder group; persons living with dementia (n = 2); family care partners (n = 4), and health and social care professionals in dementia care (n = 5). Ten themes were categorized into four overarching domains: accessibility, council infrastructure, values and environment, and benefits of involvement. CONCLUSIONS: Findings from this qualitative study are a resource for researchers seeking to collaborate with diverse stakeholder groups to represent their perspectives in research, including individuals living with dementia. The domains and themes identified here support the inclusion of diverse stakeholders in the research process, centering engagement and capacity building strategies around individuals living with dementia.

Involving stakeholders in research about dementia care is recognized as an important approach to develop findings that are relevant to individuals living with dementia, family care partners, and health and social professionals in dementia care. Still, this approach is not often used and there is a need for more information about how researchers can engage stakeholders in the research process and the impact of engagement from the perspectives of stakeholders. In this paper, we describe how a mixed group of stakeholders was engaged for a project to identify priorities for dementia care research and their perspectives of the experience.A Stakeholder Advisory Council (SAC) worked together to develop their skills in research and connected with their communities to determine what is most important to be studied in the field of dementia care research. To understand the perspectives of the stakeholders involved in this project, we conducted individual interviews with members of the SAC.This study will help researchers understand how they can collaborate with stakeholders in dementia care and the benefits of including individuals living with dementia, family care partners, and professional stakeholders in the research process.

Engaging multi-stakeholder perspectives to identify dementia care research priorities.

OBJECTIVES: The purpose of this study was to partner with stakeholders to identify gaps in care for persons living with dementia and their family caregivers and from this list, identify priorities for dementia care research. METHODS: Using a community-engaged research approach, a Stakeholder Advisory Council (SAC) consisting of diverse membership including persons living with dementia and family caregivers was convened. Through our work with the SAC, along with input from the wider network through a symposium, webinars, and an online learning community, gaps in dementia care and a list of topics for dementia care research was generated. This list was reduced to 46 topics for dementia care research and sent to stakeholders (persons living with dementia, family caregivers, and health/social care professionals in dementia care) to be prioritized by rating each of the 46 topics as "Not so important," "Important," or "Very important." Priorities for dementia care were summarized by frequencies and proportions. RESULTS: A total of 186 participants completed the survey from August through October 2020, including 23 (12.4%) persons living with dementia, 101 (54.3%) family caregivers, and 62 (33.3%) health/social care professionals. Consistent across stakeholder groups was the focus on research on how best to support families following a diagnosis of dementia. Among persons living with dementia, research focused on support for continuing to live in their own homes was ranked as the highest priority, rated by 91.3% as "Very Important". High priority research areas for family caregivers included interventions to slow cognitive decline (76.3%) as well as non-pharmacological approaches to manage behavioral symptoms (74.7%). The highest priority research topics for health/social care professionals were focused on the diagnosis including benefits of an early diagnosis (71.4%), how best to deliver the diagnosis (70.9%), and supports needed following a diagnosis (78.6%). CONCLUSIONS: This project draws on the strengths of its multi-stakeholder perspective to support patient-centered outcomes research. Findings are intended to inform those who conduct research and those who fund research about which research topics stakeholders believe are most important and thus have greatest potential to improve the quality of life among people living with dementia and their families.

"We Don't Feel so Alone": A Qualitative Study of Virtual Memory Cafés to Support Social Connectedness Among Individuals Living With Dementia and Care Partners During COVID-19.

Introduction: Loneliness and low social support can be detrimental to the health of individuals living with Alzheimer's and related dementias (ADRD) and family care partners. Restrictions on gatherings to prevent the spread of COVID-19 create an even greater risk for social isolation. Memory Cafés are a highly replicated program that provide individuals living with ADRD and care partners an opportunity to socialize in an inclusive and supportive environment without fear of judgment, pressure, or stigma. Following restrictions on in-person gatherings, virtual Memory Cafés offer regular social engagement opportunities in an online format. While the Memory Café model has been replicated globally, their effects on loneliness and perceived social support are generally unknown. Even less is known about their impact when operating in a virtual environment. Methods: Semi-structured interviews in Spanish and English were conducted with individuals living with dementia and family care partners who regularly attend Memory Cafés hosted by partners in a Texas Memory Café Network. Interviews took place online using video conferencing software, were transcribed, then analyzed for common themes using a combined inductive and deductive approach. Results: A total of 17 interviews were conducted with persons living with dementia (n = 5) and family care partners (n = 12) who attend Memory Cafés to learn about their perceived experiences of social connectedness since COVID-19. Care partners included spouses (n = 8) and adult children (n = 4). Interviews included attendees of different Memory Café models, including in-person only (n = 2), virtual only (n = 9), and those who attend both models (n = 6). Five key themes were identified: (1) Reprieve; (2) What is still possible; (3) Connectedness; (4) Inclusivity; and (5) Value added, with ten sub-themes supporting these main themes. Discussion: Findings substantiate evidence that Memory Cafés offer important benefits for families living with dementia, providing vital new insight into the potential for virtual Memory Cafés to offer similar benefits. Findings have implications beyond the context of COVID-19, where virtual models may support the social connectedness of those living in geographically marginalized and underserved areas. Virtual models may not address the needs of all families experiencing dementia due to lack of access to technology and limitations for virtual engagement with those experiencing later stage dementia.

"Getting to Know Them": Person-Centered Care for Patients With Dementia in Acute Care.

Older adults with dementia are reported to have twice as many hospital stays as their age-matched counterparts without dementia. Acute care hospitals are generally not equipped to provide best care for persons with dementia. The purpose of the current qualitative study was to gain an understanding of the needs and perspectives of nursing staff and patient care technicians regarding delivering person-centered care (PCC) to patients with dementia. Nine focus groups (N = 49) were conducted. Participants discussed the importance of "getting to know them" as the basis for their care. Several themes emerged that served to support or detract from providing PCC: (a) communication, (b) education, and (c) care environment. Findings from this study support the desire of nurses and patient care technicians to provide PCC, highlight challenges, and indicate needed system-level changes to education, communication, and the care environment to support best practices. [Journal of Gerontological Nursing, 47(5), 37-44.].