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Introduction Objective Methods Results Conclusion 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. [ABSTRACT FROM AUTHOR]

Background: Care partners are individuals chosen by a person with an illness to support their care during hospitalization. Patients with persistent critical illness have longer than average critical care admission and often other conditions including dysphagia, communication vulnerability, severe physical deconditioning, the need for an artificial airway, and difficulty weaning from invasive mechanical ventilation. Family presence has been identified as important for patients experiencing persistent critical illness in specialized weaning centers. Despite this, the role of care partners in clinical settings for patients with persistent critical illness has not been fully characterized, particularly from the perspectives of patients, care partners, and health care providers. The aim of this study was to gain insights into the roles of care partners during persistent critical illness from the perspectives of patients, care partners, and health care providers. Methods: We used qualitative descriptive methodology including semi-structured interviews and content analysis. Interviews were audio recorded and transcribed verbatim. Included participants (n = 30) were patient survivors (n = 7), care partners of patient survivors (n = 9), and professionally diverse health care providers (n = 14) of adult patients with persistent critical illness from two specialized units in one community academic hospital in Toronto, Canada. Results: Participants across all groups described care partner roles that included physical, mental health, cognitive, social, and spiritual support of the patient, including the perceived role of safeguarding the multiple dimensions of care for the patient who is experiencing persistent critical care in specialized care settings. Discussion: The results of this study are being used to co-design, implement, and evaluate a sustainable care partner program that is acceptable, appropriate, and feasible to implement in clinical settings where the care of patients with persistent critical illness occurs. Reporting method: Consolidated criteria for reporting qualitative studies (COREQ). [ABSTRACT FROM AUTHOR]

Background: Where available, Parkinson's Nurse Specialists (PNS) provide a range of care, support, guidance, and advocacy for people with Parkinson's (PwP), and, where appropriate, their care partners (CP). Parkinson's is a complex and progressive condition. Consequently, evaluating health outcomes is not a reliable method to understand the value and impact of PNS. Previous research has identified PNS can improve the subjective well-being of PwP in the community, also that barriers to care include heavy caseloads and a lack of time. Yet little is known about the value of the role of the PNS, particularly about the impact of pharmacological management and review. This research aims to close this research gap by providing explanatory theories of the impact and value of PNS to PwP, their CP, and other professionals. Methods: A social constructivist grounded theory approach was used. Semi-structured interviews were conducted with three groups, PNS, PwP, and CP. Interviews were analysed using NVivo for coding and categorising and Word for memo-writing. Data was analysed inductively and iteratively to identify contexts, social processes, actions, and behaviours, before final emergent theories were identified. Results: 46 semi-structured interviews (PNS 18, PwP 19, CP 9) led to four data categories and 13 sub-categories that delineated PNS value. (1) Expert Counsel; provision of emotional support, education, and lifestyle guidance; CP inclusion; provision from diagnosis; and across all stages of Parkinson's. (2) Conduit of Care; signposting, referral, and connection to PwP, CP, others; PNS barriers and facilitators; (3) Team/Partnership; continuity and partnership, 'working together'; (4) Pharmacological Support, PNS prescribing; concordance; speed of treatment. Where PNS were accessible they could offer personalised support and partnership, so providing person-centred care that improves health and well-being. Conclusion: Where a PNS is accessible due to service availability and manageable caseloads, to provide person-centred care, they deliver several benefits to PwP and CP which improve health and perceived well-being. Where PNS are not available, PwP and CP often struggle to manage their Parkinson's with negative impacts on health and well-being. [ABSTRACT FROM AUTHOR]

Background Objective Methods Results Conclusions Psychosis and cognitive decline often co‐occur in Parkinson's Disease (PD), which complicates assessment.We measured agreement between patients with PD and dementia (PDD) and care partners (CPs) in their independent evaluation of PD‐related psychotic symptoms.We compared responses to a PD psychosis rating scale (SAPS‐PD) in 21 dyads of patients with PDD and cognitively normal CPs. We assessed the concordance of responses using the intraclass correlation coefficient (ICC). Following the psychosis assessment, the clinician used all available information and adjudicated who provided the most reliable responses.Dyads demonstrated poor concordance in summary scores (ICC = 0.464). Six of the nine individual items had poor agreement. The clinician adjudicated the patient's response as the more reliable in 71.4% of cases.Although many psychotic symptoms are internal and not observable, in the context of PDD, both patient and CP inputs are valuable, but final adjudication favors patient responses. [ABSTRACT FROM AUTHOR]

Beta amyloid PET scans are a minimally invasive biomarker that may inform Alzheimer's disease (AD) diagnosis. The Caregiver's Reactions and Experience (CARE) study, an IDEAS supplement, aimed to understand experiences of PET scan recipients and their care partners regarding motivations for scans, reporting and interpreting results, and impact of results. Patients with mild cognitive impairment or dementia who agreed to join the CARE‐IDEAS study and their care partners participated in a baseline survey and follow‐up survey approximately 18 months later, supplemented by in‐depth qualitative interviews with subsets of participants. Patients who received scans and volunteered for follow‐up research were more likely to be male, better educated, and have higher income than the general population. Survey information was merged with Medicare data. This article integrates findings from several CARE‐IDEAS publications and provides implications for practice and research. Although most participants accurately reported scan results, they were often confused about their meaning for prognosis. Some participants reported distress with results, but there were no significant changes in measured depression, burden, or economic strain over time. Many respondents desired more information about prognosis and supportive resources. Scan results were not differentially associated with changes in service use over time. Findings suggest a need for carefully designed and tested tools for clinicians to discuss risks and benefits of scans and their results, and resources to support patients and care partners in subsequent planning. Learning of scan results provides a point‐of‐contact that should be leveraged to facilitate shared decision‐making and person‐centered longitudinal AD care. [ABSTRACT FROM AUTHOR]

Abstract Background Where available, Parkinson’s Nurse Specialists (PNS) provide a range of care, support, guidance, and advocacy for people with Parkinson’s (PwP), and, where appropriate, their care partners (CP). Parkinson’s is a complex and progressive condition. Consequently, evaluating health outcomes is not a reliable method to understand the value and impact of PNS. Previous research has identified PNS can improve the subjective well-being of PwP in the community, also that barriers to care include heavy caseloads and a lack of time. Yet little is known about the value of the role of the PNS, particularly about the impact of pharmacological management and review. This research aims to close this research gap by providing explanatory theories of the impact and value of PNS to PwP, their CP, and other professionals. Methods A social constructivist grounded theory approach was used. Semi-structured interviews were conducted with three groups, PNS, PwP, and CP. Interviews were analysed using NVivo for coding and categorising and Word for memo-writing. Data was analysed inductively and iteratively to identify contexts, social processes, actions, and behaviours, before final emergent theories were identified. Results 46 semi-structured interviews (PNS 18, PwP 19, CP 9) led to four data categories and 13 sub-categories that delineated PNS value. (1) Expert Counsel; provision of emotional support, education, and lifestyle guidance; CP inclusion; provision from diagnosis; and across all stages of Parkinson’s. (2) Conduit of Care; signposting, referral, and connection to PwP, CP, others; PNS barriers and facilitators; (3) Team/Partnership; continuity and partnership, ‘working together’; (4) Pharmacological Support, PNS prescribing; concordance; speed of treatment. Where PNS were accessible they could offer personalised support and partnership, so providing person-centred care that improves health and well-being. Conclusion Where a PNS is accessible due to service availability and manageable caseloads, to provide person-centred care, they deliver several benefits to PwP and CP which improve health and perceived well-being. Where PNS are not available, PwP and CP often struggle to manage their Parkinson’s with negative impacts on health and well-being.

Abstract Background Health system fragmentation directly contributes to poor health and social outcomes for older adults with multiple chronic conditions and their care partners. Older adults often require support from primary care, multiple specialists, home care, community support services, and other health-care sectors and communication between these providers is unstructured and not standardized. Integrated and interprofessional team-based models of care are a recommended strategy to improve health service delivery to older adults with complex needs. Standardized assessment instruments deployed on digital platforms are considered a necessary component of integrated care. The aim of this study was to develop strategies to leverage an electronic wellness instrument, interRAI Check Up Self Report, to support integrated health and social care for older adults and their care partners in a community in Southern Ontario, Canada. Methods Group concept mapping, a participatory mixed-methods approach, was conducted. Participants included older adults, care partners, and representatives from: home care, community support services, specialized geriatric services, primary care, and health informatics. In a series of virtual meetings, participants generated ideas to implement the interRAI Check Up and rated the relative importance of these ideas. Hierarchical cluster analysis was used to map the ideas into clusters of similar statements. Participants reviewed the map to co-create an action plan. Results Forty-one participants contributed to a cluster map of ten action areas (e.g., engagement of older adults and care partners, instrument’s ease of use, accessibility of the assessment process, person-centred process, training and education for providers, provider coordination, health information integration, health system decision support and quality improvement, and privacy and confidentiality). The health system decision support cluster was rated as the lowest relative importance and the health information integration was cluster rated as the highest relative importance. Conclusions Many person-, provider-, and system-level factors need to be considered when implementing and using an electronic wellness instrument across health- and social-care providers. These factors are highly relevant to the integration of other standardized instruments into interprofessional team care to ensure a compassionate care approach as technology is introduced.

Abstract Introduction Persons with Parkinson’s disease (PwPD) suffer from motor and non-motor symptoms which significantly affect their quality of life (QoL), and the QoL of their care partners (CP). Tandem cycling reduces PwPD motor symptoms; however, no studies have examined other benefits or included PwPD CP. We conducted an 8-week community virtual reality (VR) tandem cycling intervention to assess the feasibility and efficacy for PwPD and their CP (i.e., PD dyads). We hypothesized that dyadic tandem cycling would improve (1) PwPD motor and non-motor symptoms and (2) dimensions of PD dyads’ QoL and physiologic health. Methods Ten PD dyads were recruited to complete 8 weeks of progressive intensity, bi-weekly tandem cycling. At pre- and post-testing, PwPD were assessed using the Movement Disorder Society–Unified Parkinson’s Disease Rating Scale-III (MDS-UPDRS-III), functional gait assessment (FGA), and 10-m gait speed test. PD dyads also completed emotional and cognitive status questionnaires [e.g., Geriatric Depression Scale-Short Form (GDS-SF)], and wore BodyGuard 2 heart rate (HR) monitors for 48 h to assess surrogate measures of heart rate variability. Statistical analyses were conducted using Student’s t tests with significance set at p ≤ 0.05. Results Eight PD dyads and one PwPD completed the intervention. Retention of PwPD (90%) and CP (80%) was adequate, and PD dyad adherence ranged from 91.67 to 97.91%. PwPD demonstrated significant clinical improvements in MDS-UPDRS-III scores (− 7.38, p

ObjectivesMethodsResultsConclusionsClinical ImplicationsThe purpose of this study was to explore the mediating roles of care receiver clinical factors on the relationship between care partner preparedness and care partner desire to seek long-term care admission for persons living with dementia at hospital discharge.This study analyzed data from the Family centered Function-focused Care (Fam-FFC), which included 424 care receiver and care partner dyads. A multiple mediation model examined the indirect effects of care partner preparedness on the desire to seek long-term care through care receiver clinical factors (behavioral and psychological symptoms of dementia [BPSD], comorbidities, delirium severity, physical function, and cognition).Delirium severity and physical function partially mediated the relationship between care partner preparedness and care partner desire to seek long-term care admission (B = -.011; 95% CI = -.019, −.003, and B = -.013; 95% CI = -.027, −.001, respectively).Interventions should enhance care partner preparedness and address delirium severity and physical function in hospitalized persons with dementia to prevent unwanted nursing home placement at hospital discharge.Integrating care partner preparedness and care receiver clinical factors (delirium severity and physical function) into discharge planning may minimize care partner desire to seek long-term care. [ABSTRACT FROM AUTHOR]

Introduction: Persons with Parkinson's disease (PwPD) suffer from motor and non-motor symptoms which significantly affect their quality of life (QoL), and the QoL of their care partners (CP). Tandem cycling reduces PwPD motor symptoms; however, no studies have examined other benefits or included PwPD CP. We conducted an 8-week community virtual reality (VR) tandem cycling intervention to assess the feasibility and efficacy for PwPD and their CP (i.e., PD dyads). We hypothesized that dyadic tandem cycling would improve (1) PwPD motor and non-motor symptoms and (2) dimensions of PD dyads' QoL and physiologic health. Methods: Ten PD dyads were recruited to complete 8 weeks of progressive intensity, bi-weekly tandem cycling. At pre- and post-testing, PwPD were assessed using the Movement Disorder Society–Unified Parkinson's Disease Rating Scale-III (MDS-UPDRS-III), functional gait assessment (FGA), and 10-m gait speed test. PD dyads also completed emotional and cognitive status questionnaires [e.g., Geriatric Depression Scale-Short Form (GDS-SF)], and wore BodyGuard 2 heart rate (HR) monitors for 48 h to assess surrogate measures of heart rate variability. Statistical analyses were conducted using Student's t tests with significance set at p ≤ 0.05. Results: Eight PD dyads and one PwPD completed the intervention. Retention of PwPD (90%) and CP (80%) was adequate, and PD dyad adherence ranged from 91.67 to 97.91%. PwPD demonstrated significant clinical improvements in MDS-UPDRS-III scores (− 7.38, p < 0.01), FGA scores (+ 3.50, p < 0.01), and 10-m gait speed times (+ 0.27 m/s, p < 0.01), in addition to significant self-reported improvements in mobility (− 13.61, p = 0.02), fatigue (− 5.99, p = 0.02), and social participation (+ 4.69, p < 0.01). CP depressive symptoms significantly decreased (− 0.88, p = 0.02), and PD dyads shared a significant increase in root mean square of the successive differences (RMSSD; p = 0.04). Conclusion: Our pilot study demonstrated feasibility and multiple areas of efficacy supporting further investigation of community VR tandem cycling as a therapeutic intervention for PD dyads. [ABSTRACT FROM AUTHOR]

Background: Health system fragmentation directly contributes to poor health and social outcomes for older adults with multiple chronic conditions and their care partners. Older adults often require support from primary care, multiple specialists, home care, community support services, and other health-care sectors and communication between these providers is unstructured and not standardized. Integrated and interprofessional team-based models of care are a recommended strategy to improve health service delivery to older adults with complex needs. Standardized assessment instruments deployed on digital platforms are considered a necessary component of integrated care. The aim of this study was to develop strategies to leverage an electronic wellness instrument, interRAI Check Up Self Report, to support integrated health and social care for older adults and their care partners in a community in Southern Ontario, Canada. Methods: Group concept mapping, a participatory mixed-methods approach, was conducted. Participants included older adults, care partners, and representatives from: home care, community support services, specialized geriatric services, primary care, and health informatics. In a series of virtual meetings, participants generated ideas to implement the interRAI Check Up and rated the relative importance of these ideas. Hierarchical cluster analysis was used to map the ideas into clusters of similar statements. Participants reviewed the map to co-create an action plan. Results: Forty-one participants contributed to a cluster map of ten action areas (e.g., engagement of older adults and care partners, instrument's ease of use, accessibility of the assessment process, person-centred process, training and education for providers, provider coordination, health information integration, health system decision support and quality improvement, and privacy and confidentiality). The health system decision support cluster was rated as the lowest relative importance and the health information integration was cluster rated as the highest relative importance. Conclusions: Many person-, provider-, and system-level factors need to be considered when implementing and using an electronic wellness instrument across health- and social-care providers. These factors are highly relevant to the integration of other standardized instruments into interprofessional team care to ensure a compassionate care approach as technology is introduced. [ABSTRACT FROM AUTHOR]

Sharing stories is a way that people make meaning out of life and connect with others socially. For couples in which one person has aphasia, the ability to have conversations and share stories may be disrupted. Many people with aphasia benefit from support in constructing and sharing stories with others. To share experiences with his wife, the spouse of a person with aphasia developed an intervention approach called Aphasia-Friendly Reading that supports oral storytelling and sharing stories with others. The current study explored the experiences of care partners in a pilot study using the Aphasia-Friendly Reading approach. Three people with aphasia and their care partners participated in the Aphasia-Friendly Reading pilot study one hour per week for 9 to 14 weeks. Following the pilot program, each care partner was interviewed about their experience participating in the study. Interview data was analysed using reflexive thematic analysis. Three major themes were identified: (1) Care partner empowerment, (2) Collaboration, and (3) Different therapy experience. Care partners expressed that they were "totally involved" in all stages of the intervention and that they highly valued being involved. Further, care partners reported specific ways that they started taking initiative in supporting their partner with aphasia outside of the sessions. Care partners described the project as collaborative, noting the role of all participants in story co-construction and mentioning how they both taught and learned from graduate student clinicians. The care partners reported that the project was distinctly different from their previous therapy experiences, noting that they appreciated the person-centeredness of the stories, the fun of working together in sessions, and the opportunity to share their stories with the aphasia group. The results indicated that the care partners experienced benefits of being actively included in the Aphasia-Friendly Reading approach. The approach appears to be harmonious with core values of the Life Participation Approach to Aphasia and research on the value of considering aphasia to be a family issue rather than an individual issue. [ABSTRACT FROM AUTHOR]

AbstractObjectivesMethodResultsConclusionPeople with dementia (PwD) and their care partners (CP) may have difficulties in emotion regulation, and individual differences in emotion regulation may be related to PwD’s neuropsychiatric symptoms. This study explores whether there is self-awareness of PwD’s difficulties in emotion regulation and whether CP’s emotion regulation relates to the PwD’s neuropsychiatric symptoms, potentially revealing bias or interpersonal effects.We used data from the Wish Outcome Obstacle Plan Study with a sample of 45 PwD and their spousal CP (n = 90 individuals). Multivariate linear regression models were used to investigate the associations between the CP-reported neuropsychiatric symptoms in PwD and self-reports of emotion regulation in both dyad members, net of sociodemographic and health factors. Separate analyses were conducted for each neuropsychiatric subsyndrome and each domain of difficulties in emotion regulation.Increasing severity of neuropsychiatric symptoms was associated with higher difficulties in emotion regulation in PwD (ß = 1.23, p < 0.05), but not with CP’s difficulties in emotion regulation. When CP reported more severe neuropsychiatric symptoms in PwD, PwD reported that they had difficulties in accepting emotions, controlling impulses, goal-directed behaviors, and accessing emotion regulation strategies, but not in emotion awareness and clarification. Proxy-reports of hyperactivity and psychosis subsyndromes are significantly related to PwD’s self-reported difficulties in emotion regulation.PwD reported difficulties in emotion regulation at the early stage of dementia. Proxy-reported neuropsychiatric symptoms may capture PwD’s emotion regulation capability and not be biased by CP’s difficulties in emotion regulation. [ABSTRACT FROM AUTHOR]

Background and Objectives Psychoeducation interventions using distance learning modalities to engage caregivers in active learning environments have demonstrated benefits in enhancing caregiving mastery. However, few of these programs have been specifically adapted to develop mastery in Black caregivers. Research Design and Methods A multimethod approach was carried out to assess Caregiving While Black (CWB), including pre–post surveys and in-depth interviews. This psychoeducation course addresses the cultural realities of caring for a person living with dementia as a Black American. Caregivers engaged in online asynchronous education related to healthcare navigation, home life management, and self-care. Primary (caregiving mastery) and secondary outcomes (anxiety, depression, perceived stress, burden, perceived ability to manage behavioral and psychological symptoms) were assessed at baseline and post-course (10 weeks). Results Thirty-two Black caregivers from across the United States completed the course within the allotted time frame. Paired sample t test analyses revealed significant reductions in caregiver burden and role strain. Caregiver mastery from baseline to completion increased by 0.45 points with an effect size of 0.26 (Cohen's d). Twenty-nine caregivers participated in an optional post-course interview, and thematic analysis led to the construction of 5 overarching themes: Comfortability with a Culturally Tailored Course ; Experiences Navigating the Course Platform ; Utility of Course Resources ; Time as a Barrier and Facilitator ; Familial and Community Engagement. Discussion and Implications Pilot findings convey a need to continue creating and receiving feedback on culturally tailored psychoeducation programs for dementia caregivers. The next steps include applying results to fuel the success of the next iteration of CWB. [ABSTRACT FROM AUTHOR]

Over the past decade, there has been substantial growth in heart failure (HF) research that focuses on persons with HF and their care partners (family members or other close friends that provide unpaid support) as an interdependent team, or care dyad. In this state-of-the-art review, we use a dyadic lens to identify and summarize current research on HF care dyads, from qualitative studies, to nonexperimental quantitative studies, to randomized controlled trials. Although much work has been done, this literature is younger and less well-developed than care dyad literatures from other conditions (eg, cancer, Alzheimers disease). We discuss the substantial challenges and limitations in this body of work, with an eye toward addressing common issues that impact rigor. We also look toward future directions, and discuss the promise dyadic research holds for improving patient, care partner, and relationship health.

BackgroundCare partners are individuals chosen by a person with an illness to support their care during hospitalization. Patients with persistent critical illness have longer than average critical care admission and often other conditions including dysphagia, communication vulnerability, severe physical deconditioning, the need for an artificial airway, and difficulty weaning from invasive mechanical ventilation. Family presence has been identified as important for patients experiencing persistent critical illness in specialized weaning centers. Despite this, the role of care partners in clinical settings for patients with persistent critical illness has not been fully characterized, particularly from the perspectives of patients, care partners, and health care providers. The aim of this study was to gain insights into the roles of care partners during persistent critical illness from the perspectives of patients, care partners, and health care providers.MethodsWe used qualitative descriptive methodology including semi-structured interviews and content analysis. Interviews were audio recorded and transcribed verbatim. Included participants (n = 30) were patient survivors (n = 7), care partners of patient survivors (n = 9), and professionally diverse health care providers (n = 14) of adult patients with persistent critical illness from two specialized units in one community academic hospital in Toronto, Canada.ResultsParticipants across all groups described care partner roles that included physical, mental health, cognitive, social, and spiritual support of the patient, including the perceived role of safeguarding the multiple dimensions of care for the patient who is experiencing persistent critical care in specialized care settings.DiscussionThe results of this study are being used to co-design, implement, and evaluate a sustainable care partner program that is acceptable, appropriate, and feasible to implement in clinical settings where the care of patients with persistent critical illness occurs.Reporting methodConsolidated criteria for reporting qualitative studies (COREQ).

Objectives: To describe how patients with Parkinson’s disease (PD) and care partners choose to share or withhold information from clinicians. Methods: This is a qualitative, descriptive study nested within a multisite, randomized clinical trial of outpatient palliative care compared to standard neurologic care for PD. Interviews with patients (n = 30) and care partners (n = 30) explored experiences communicating with neurology clinicians. Thematic analyses identified themes relevant to patient-care partner-clinician communication. Results: There were four themes relevant to sharing and/or withholding information from clinicians: (1) Suppressing Concerns During Visits, (2) Care Partner Awareness of Patients’ Communication Barriers due to Cognitive Impairment, (3) Limited Sharing of Sensitive or Intimate Issues by Patients and Care Partners, and (4) Patient and Care Partner Suggestions to Overcome ‘Holding Back’. Conclusion: Limitations to communication between patients, care partners, and clinicians should be acknowledged and recognized in routine Parkinson’s disease care to foster accurate disclosure of unmet palliative care and other needs. Triadic communication strategies may help patients and care partners talk about unmet palliative care needs. Innovation: By recognizing that cognitive impairment and sensitive topics can be barriers, clinicians can adjust or adopt targeted communication strategies for identifying and discussing care needs.

Dementia, a global health priority, poses a disproportionately high risk to lesbian, gay, bisexual and trans plus (LGBT+)/gender and sexuality diverse people. Despite this, little research has explored the lived experience of LGBT+ people with dementia or their care partners. This scoping review aims to understand what the literature reveals about their experiences, the ways in which their lives have been investigated, to inform future research, policy and practice. Using an established scoping review methodology, we identified seven papers that reported empirical research on the lived experience of LGBT+ people with dementia and their care partners. Only a single study reported on in two of the papers included people who were trans. This in itself reveals how rarely LGBT+ people are asked to speak about how dementia has shaped their lives in academic research. Our reflexive thematic analysis indicates that LGBT+ people with dementia and their care partners endure overlapping forms of disadvantage. This results in heightened experiences of fear and discrimination, lack of services and compounded social isolation. Importantly, while dementia was embodied as interference and loss by LGBT+ people, it was their gender and sexuality differences that provided solace, even in the face of disadvantage. Importantly, people's relationships with LGBT+ identities were framed as fundamental for safety, resilience and wellbeing, rather than a complicating or confounding factor in living with dementia. [ABSTRACT FROM AUTHOR]

The goal of this study is to understand the design needs and preferences of patients and care partners for a needleless vascular connection device called the Ambulatory Kidney to Improve Vitality (AKTIV) Connection. One of the greatest barriers to patients' self-management of home-based hemodialysis treatments is connecting the dialysis device to their own blood supply. We gathered detailed data on patients' and care partners' design needs and preferences with the goal of mitigating this barrier to usage with the AKTIV Connection. In particular, we interviewed 16 hemodialysis patients and 7 care partners using a mixed-method approach of rating and semi-structured questions. Participants indicated they would prefer carrying the AKTIV Connection on or around the waist or in a belt bag. Inductive content analysis showed that the participants considered the ideal AKTIV Connection to connect to a patient's bloodstream in the chest area, be rectangularly shaped with rounded corners, and have upper size and weight limits in reference to a modern-day smartphone. We also identified 10 categories of ideal features of the AKTIV Connection and 12 categories of concerns related to connecting the AKTIV Connection to a patient's bloodstream. The findings from this study will help guide the design and development of the AKTIV Connection so that it meets patients' and care partners' needs and preferences, ultimately helping improve the quality of life of patients with end-stage renal disease. [ABSTRACT FROM AUTHOR]

The Family-centered Function Focused Care (Fam-FFC) intervention, is a nurse-family care partnership model aimed to improve the physical and cognitive recovery in hospitalized persons living with Alzheimer's Disease Related Dementias (ADRD) while improving the care partner's experiences. Discussions of patients' needs and preferences between nurses and the patient's close family members have been found to be useful in preventing excessive stress in persons with dementia, while lessening the anxiety of care partners. However, the efficacy of dementia-specific interventions is influenced in part by the degree to which the interventions are flexible and sensitive to the patient's and care-partner's condition, needs, and preferences, including cultural preferences. Therefore, the purpose of this study is to assess the cultural appropriateness of Fam-FFC using the Ecological Validity Model (EVM). This qualitative, descriptive study included 28 consented care partners drawn from a sample of 455 dyads enrolled in the Fam-FFC intervention. An interview guide was created based on the EVM. Participants provided demographic data. Thematic analysis was conducted to analyze transcribed interviews. The majority of the sample was female (79%), Non-Hispanic (96%) and half were married. One-half of the sample represented Black care partners and one-half were White. Seventy-nine percent lived with their family member with ADRD. Three major themes were identified from the thematic analysis including Care Partner Identity, Care Partner Preferences, and Goals of Care for functional recovery of their family member living with dementia. In this study care partners wanted more social services as well as home care that supported not just physical needs but also social and recreational needs. Findings from the study offer guidance on improving the Fam-FFC intervention including strengthening education and resources on partner self-care. [ABSTRACT FROM AUTHOR]

Background and objectivesOlder adults with cognitive impairment often experience poor oral health outcomes due to inadequate oral hygiene practices. This pilot study aimed to evaluate the feasibility of a care partner-assisted intervention to improve the oral hygiene of community-dwelling older adults with cognitive impairment.Material and methodsThe 6-month intervention included 25 older adults with mild dementia or mild cognitive impairment, who were randomly assigned to Treatment Group 1 or Treatment Group 2. Treatment Group 1 (n = 7) received an educational booklet. Treatment Group 2 (n = 18) received a booklet, a tailored care plan for the participants with cognitive impairment and the care partner received four coaching sessions to learn to facilitate good oral hygiene. Both groups received electric toothbrushes. The study consisted of a 3-month active intervention and 3-month maintenance phase. The outcomes of gingival index, plaque index and overall oral health status based on the Oral Health Assessment Tool were measured at baseline, 3 months (end of active intervention) and 6 months of the study.ResultsThis study had very low dropout rate. Participants' oral hygiene improved in this study. In comparison to Treatment Group 1, participants in Treatment Group 2 had a greater reduction in plaque level and gingival inflammation, and greater improvement in overall oral health status.ConclusionThis study demonstrates the feasibility of this intervention designed to improve the oral health of persons with cognitive impairment and it lays the foundation for using this protocol in a future large randomised clinical trial.

Introduction: Despite abundant literature on the diagnosis of dementia, limited research has explored the lived experiences of radiography practitioners when providing care to people living with dementia in the department. Objectives: This qualitative study explored the perceptions and compatibility of current professional guidance by both diagnostic imaging and radiotherapeutic radiography practitioners as well as the key stakeholders involved with developing the Society and College of Radiographers clinical practice guidelines for caring for people with dementia. Methods: This was a two-phase multi-method study. Fifteen diagnostic imaging and two therapeutic radiography practitioners from across the UK participated with online focus group discussions. Four key stakeholders involved with the development of the Society and College of Radiographers guidelines took part with individual semi-structured interviews. Data analysis included narrative and thematic analysis. Results: Participants from both phases identified enablers and barriers to providing person-centred dementia care. Three superordinate themes were identified linked to (1) Working with care partners, (2) Departmental environmental design, and (3) Communication and interprofessional infrastructure. Discussion: Many radiography practitioners still feel unprepared when caring for people living with dementia despite the clinical practice guidelines. Care partners were identified as having the potential to help alleviate some of the challenges radiographers faced. Participants were also aware of the impact of the departmental environment and recognised that poor way finding designs could lead to frustration. Radiography practitioners were not always aware that a patient was living with dementia prior to their attendance in the department making it difficult for practitioners to make appropriate accommodations such as additional time at appointments or the departmental environment. Our findings suggest there is a need for profession specific education and training for radiography practitioners to support the provision of person-centred dementia care. There is also a need to support the design of dementia friendly diagnostic imaging and radiotherapy departments. [ABSTRACT FROM AUTHOR]

Fatigue is a long-term symptom for stroke survivors. This scoping review synthesized how survivors achieve fatigue adaptation. Four databases were searched for studies between 2012 and 2021. Qualitative studies or qualitative findings from mixed-methods studies were included if they described survivors' experiences with fatigue and/or care partners' experiences in helping survivors adapt to fatigue. Studies were excluded if they were poster abstracts, reviews, or editorials. Thirty-six articles were analyzed. Survivors with fatigue described different adaptive challenges – fatigue made them less productive, brought emotional distress, and was indiscernible to others. To respond to these challenges, stroke survivors did adaptive work including conserving energy, changing mindset, and restructuring normality. Care partners, employers, and colleagues showed adaptive leadership by adjusting daily routines or role responsibilities. Most survivors described that the current clinical practice did not meet their needs to address fatigue. Stroke survivors had many types of challenges and strategies for fatigue adaptation. Survivors received family, employer, and colleague support but how care partners help survivors develop new skills is unknown. Stroke survivors expressed that healthcare professionals need to teach survivors and care partners basic knowledge of fatigue that meet their personal needs and provide adaptive interventions for survivors. The challenges of poststroke fatigue are multifaceted because fatigue influences stroke survivors' physical, cognitive, mental, and social aspects of recovery. Stroke survivors need support from their care partners such as helping them adapt to the fatigue, adapt to new life routine, and adjust role responsibilities. Healthcare professionals, stroke survivors, and care partners need to work together to develop strategies about poststroke fatigue that meet stroke survivors' personal needs. [ABSTRACT FROM AUTHOR]

Spouses, family members, and close friends of stroke survivors with aphasia are often inadequately prepared to transition into the role of care partner and are consequently at risk for third-party disability. Timely, appropriate informational support may help to mitigate negative effects of caring for someone with aphasia. To explore how 11 care partners accessed information and adapted to the caregiver role at different phases of recovery during the early Covid-19 pandemic. Care partners of stroke survivors with aphasia participated in up to five individual semi-structured interviews while their loved one was in acute care through six months post-hospital discharge. The interviews were audio-recorded and transcribed. Transcripts were analysed using a descriptive coding process. Codes were grouped together into categories, and themes were identified from observed patterns in the data. There were 11 relevant key themes, including how care partners learn about stroke and aphasia (or not), receive information about their loved one, find alternative ways to communicate, prepare for the unknown, long for some type of check-in, desire care coordination, appreciate family support, and adjust to living with aphasia in the long-term. The Covid-19 pandemic highlighted inconsistencies in care partner involvement during stroke rehabilitation. Families navigated stroke and aphasia recovery with varying information from the healthcare team and the pandemic impacted therapy coordination, family support, and access to respite care. Our work highlights several opportunities for improvement in care partner inclusion and indicates a need to develop tailored interventions for timely informational support. [ABSTRACT FROM AUTHOR]

Care partners are an integral part of the recovery process for people with aphasia after stroke, and they often depend on speech-language pathologists (SLPs) to provide the education, support, and training that care partners need across the recovery continuum. However, it is not clear how SLPs provide informational counseling across the recovery continuum or how they choose the type, quantity, and timing of the information they share with care partners. The aims of this study were to (1) identify what informational support speech-language pathologists currently provide to care partners of people with aphasia at each phase of the recovery continuum and (2) ascertain the perceived barriers/facilitators to providing tailored informational supports. Ten practicing SLPs working with people with aphasia across various settings participated in individual semi-structured interviews. The interviews were audio-recorded, transcribed, and analysed using open-coding methods. We delineate our results by each phase of the recovery continuum, from acute care to long-term life with aphasia. We discuss how SLPs apply their own judgment and experience in sharing information, how they supplement informational gaps, prepare care partners for assuming the caregiving role, and how they address care partner communicative, informational, and psychological needs once the person with aphasia returns home. We also discuss perceived barriers to providing timely care partner information. Our study supports and builds upon previous care partner work, , specifically, how SLPs integrate care partners into aphasia rehabilitation. SLPs are working to provide aphasia education in sometimes suboptimal circumstances. Across all phases of recovery, SLPs were hindered by lack of time and resources. Additional study is needed to determine how best to provide information to care partners, especially those who are not able to be present for treatment sessions. [ABSTRACT FROM AUTHOR]

Background: Informal caregivers of older adults experience a high degree of psychosocial burden and strain. These emotional experiences often stem from stressful tasks associated with caregiving. Caregiving supportive services that provide assistance for stressful tasks are instrumental in alleviating caregiving burden and strain. Research is limited on what types of supportive services caregivers are utilizing by relationship status and their source of information regarding these services. We sought to characterize caregiving supportive services use by caregiver relationship status. Methods: We analyzed cross‐sectional data from the 2015 National Study of Caregiving limited to caregivers of older adults ≥65 years of age. Caregiver relationship status (i.e., spouse, child, other relative/non‐relative) was the independent variable. Type of supportive service and source of information about supportive services were the dependent variables. Bivariate analyses were performed to examine the association with caregiver relationship status and associations between use of caregiving supportive services and caregiver and care recipient characteristics. Among service users, we measured associations between caregiver relationship status, type of supportive services used, and source of information about supportive services. Results: Our sample consisted of 1871 informal caregivers, 30.7% reported using supportive services. By caregiver relationship status, children had the greatest use of supportive services compared to spouses and other relatives/non‐relatives (46.5% vs. 27.6% vs. 25.9%, p = <0.01, respectively). Among users of services, there were no differences in type of services used. Spouses primarily received their information about services from a medical provider or social worker (73.8%, p = <0.001). Conclusion: Our findings highlight the need to ensure that other caregiving groups, such as spouses and other relatives/non‐relatives, have access to important supportive services such as financial support. Medical providers and/or social workers should be leveraged and equipped to provide this information and refer to services accordingly. [ABSTRACT FROM AUTHOR]

More than 80% of family care partners of older adults are responsible for coordinating care between and among providers; yet, their inclusion in the health care delivery process lacks recognition, coordination, and standardization. Despite efforts to include care partners (e.g., through informal or formal proxy access to their care recipient's patient portal), policies and procedures around care partner inclusion are complex and inconsistently implemented. We conducted a scoping review of peer-reviewed articles published from 2015 to 2021 and reviewed a final sample of 45 U.S.-based studies. Few articles specifically examine the inclusion of care partners in health care teams; those that do, do not define or measure care partner inclusion in a standardized way. Efforts to consider care partners as "partners" rather than "visitors" require further consideration of how to build health care teams inclusive of care partners. Incentives for health care organizations and providers to practice inclusive team-building may be required. [ABSTRACT FROM AUTHOR]

Background and Objectives Community Aging in Place, Advancing Better Living for Elders (CAPABLE) is an evidence-based intervention to promote aging in place. Although CAPABLE has been implemented in more than 40 community sites, wide variation in implementation exists. Guided by the Consolidated Framework for Implementation Research (CFIR), this study sought to determine key barriers and facilitators that may influence CAPABLE implementation with older adult and care partner dyads through an area agency on aging (AAA). Research Design and Methods A formative evaluation was completed using qualitative data from the pilot of a Hybrid Trial Type 1 study implementing CAPABLE in an AAA. Multiple sources of data were collected, including 2 focus groups, field notes, a tracking log, and meetings with CAPABLE interventionists. Data were analyzed using a framework method and validated through a negative case analysis approach in NVivo 12 Pro. Results Fourteen dyads enrolled in the pilot and 6 completed the CAPABLE intervention. Key themes aligned with 10 constructs from 5 domains of the CFIR. Facilitators included adaptability of the intervention, cost, networks and communication, and knowledge and belief of individuals. Barriers included intervention complexity, client needs and resources, and executing the planned process. Discussion and Implications Results enhance understanding of contextual factors that can influence the implementation of CAPABLE with care partners. Strategies to overcome barriers include simplifying recruitment materials and targeting older adults with recent onset of disability. The CFIR is a valuable resource for planning and evaluation of the implementation of evidence-based interventions to promote aging in place. [ABSTRACT FROM AUTHOR]

Background and Objectives Care partners of hospitalized older adults report their caregiving needs are not being addressed. The Care Partner Hospital Assessment Tool (CHAT) is a feasible and appropriate tool for practitioners' use with care partners in the hospital setting. This article explores the face validity and acceptability of the CHAT among care partners of hospitalized older adults. Research Design and Methods A qualitative descriptive study was used to identify common themes among care partners' responses from semistructured interviews. The CHAT was administered to care partners of older adults admitted to a medical–surgical unit in an academic medical center in Madison, WI, from October 2021 to January 2022. A semistructured, follow-up interview was completed by the same care partners after discharge. Interviews were transcribed and coded for themes to capture overall impressions of the CHAT. Care partners addressed the usefulness, comfort, content, and complexity of the CHAT. Results Twelve care partners participated in the study. Care partners reported that the CHAT was easy to understand and complete, was judged to be useful to both the care partner and older adult, and helped identify care partner needs. Care partners suggested ways to improve the tool including administration, additional content areas to include, and modes of delivery. Discussion and Implications The results establish the face validity of the CHAT and support the acceptability of the tool for use with care partners of hospitalized older adults. [ABSTRACT FROM AUTHOR]

Advance care planning (ACP) is an important part of comprehensive care for persons living with dementia (PLWD). While many trials have established the efficacy of ACP in improving end-of-life communication and documentation of care preferences, there remains a gap in clinical usage. Embedded pragmatic clinical trials (ePCTs) may facilitate the uptake of evidence-based care into existing healthcare by deploying efficacious ACP interventions into real-world settings. However rigorous conduct of ePCTs of ACP for PLWD presents several unique methodological considerations. Here we describe a framework for the construction of these research studies, with a focus on distinguishing between the target of study: the PLWD, their care partners, or both. We outline specific considerations at each step of the research study process including 1) participant identification/eligibility, 2) participant recruitment/enrollment, 3) intervention implementation, and 4) outcome selection/ascertainment. These considerations are weighed in further detail by describing the approaches from three published trials. Specifically, we consider how potential challenges were overcome by tradeoffs in study design. Finally, we offer directions for future growth to advance ePCTs for ACP among PLWD and catalyze future research. [ABSTRACT FROM AUTHOR]

Describe the prevalence and types of unmet needs among community-dwelling dementia care partners (CPs) and determine associations between unmet needs with protective factors, risk factors and outcomes. A cross-sectional analysis of 638 racially and cognitively diverse community-dwelling persons living with dementia (PLWD) and their CPs participating in a comprehensive in-home assessment of dementia-related needs. Unmet CP needs (19 items, 6 domains) were rated by a clinician using the Johns Hopkins Dementia Care Needs Assessment (JHDCNA). Multivariate linear regression models were used to examine associations between total percent unmet CP needs with demographic, protective and risk factors. Nearly all CPs had at least one unmet need (99.53%), with a mean of 5.7 (±2.6). The most common domains with ≥1 unmet need were memory disorder education, care skills and knowledge of resources (98%), legal issues/concerns (73.8%), CP mental health (44.6%) and access to informal support (42.7%). Adjusted multivariate models suggest the strongest consistent predictive factors relate to informal emotional support, CP physical health, use or difficulty getting formal services/supports (both for CPs and PLWD), and CP time spent with PLWD. Greater levels of unmet needs were associated with worse PLWD outcomes and CP outcomes, after adjusting for demographics. CPs have high rates of diverse, but modifiable unmet needs. Data suggest optimal approaches to dementia care should take a family-centered home-based approach that includes routine CP needs assessment, offer targeted interventions that include both traditional medical supports as well as strategies to increase and leverage informal social networks, and ones that can bridge and coordinate medical with non-medical supports. These findings can be used to inform new approaches to support CPs, improve PLWD and CP outcomes, and target groups most at risk for inequities. [ABSTRACT FROM AUTHOR]

Introduction: Social robot adoption by older adults and people living with dementia is limited by several barriers, including a lack of emotional alignment with social robots and perceptions of stigma around social robot use. The goal of this work was to address these barriers by engaging end-users in discussions on factors that could affect emotional connection to a social robot and considerations around using a social robot in public. Methods: We conducted seven 90-min online workshops with older adults with (n = 2) and without dementia (n = 25) and care partners (n = 17). Older adults with and without dementia were in their 50s - 80s, and care partners were in their 30s - 70s. Seven older adults, seven care partners, and one older adult with dementia indicated that they had used a robot before. Online workshops had 4-8 participants each, and began with video demonstrations of pet-like robot MiRo and tabletop robot T-Top, as well as a live demonstration of MiRo. Participants completed the Multi-Dimensional Robot Attitude Scale before the workshops and the Psychosocial Impact of Assistive Devices Scale and two Zoom polls during the workshops. The audio and chat responses from the workshops were transcribed verbatim and content analysis was performed on the transcripts. Results: Our analysis revealed three broad themes and 10 subthemes. In their discussions on features and applications, participants highlighted preferred forms of communication with a robot and ways in which a robot could support connection between people. For example, robots could improve the quality of communication between care partners and the person for whom they care. While many agreed that a social robot should match their level of emotion and interactivity, participants had different preferences for social robot emotional range and display features. Finally, participants discussed considerations around showing a robot to other people; several participants suggested that a robot could help raise awareness of ageing and dementia while others shared concerns about stigma and attracting negative attention from an audience. Discussion: Incorporating these findings into the design and implementation of social robots will result in devices that are better-suited to the needs of older adults, people living with dementia, and care partners. [ABSTRACT FROM AUTHOR]

Introduction: Occupational therapists may recommend and support technology use for facilitating independence, safety, wellbeing, and participation. There are high expectations for technology for people living with dementia. However, there is recognition that technologies will need to improve to deliver these expected benefits. People living with dementia have historically been excluded from direct involvement in research and design. A program of participatory research was undertaken to codesign technologies and technology research with people living with dementia and care partners. This work aims to capture the requirements, actions, and barriers experienced in forming these partnerships in technology research and design. Methods: A shared metareflection of experiences was conducted by members (5) of the research teams involved in three participatory research and technology design studies. The team comprising living experience experts, an occupational therapist, and interaction designer reflected on their experiences and derived recommendations. Key considerations for effective partnerships were drawn inductively by the authors from study experiences, materials, and reflexive discussion. Findings: Six core areas were identified. These were four action areas—(1) Agree on the value; (2) The time to start partnering is now; (3) Ask not assume; and (4) Push back on 'we always have'—(5) barriers and tensions, and (6) unexpected benefits. The reflections indicated that genuine partnerships and engagements were possible with living experience experts in research and design teams. These required resourcing and focussed actions to promote partnership. Despite some structural changes that encourage partnering, there are considerable barriers to this engagement; however, benefits beyond the expected ones can be realised. Conclusion: Genuine partnerships in technology research and design with living experience experts are possible and lead to benefits for the team, research outcomes, and technologies. Recommended actions could support expansion of effective partnerships with people living with dementia and care partners as well as other partnerships in research. [ABSTRACT FROM AUTHOR]

IntroductionSocial robot adoption by older adults and people living with dementia is limited by several barriers, including a lack of emotional alignment with social robots and perceptions of stigma around social robot use. The goal of this work was to address these barriers by engaging end-users in discussions on factors that could affect emotional connection to a social robot and considerations around using a social robot in public.MethodsWe conducted seven 90-min online workshops with older adults with (n = 2) and without dementia (n = 25) and care partners (n = 17). Older adults with and without dementia were in their 50s – 80s, and care partners were in their 30s – 70s. Seven older adults, seven care partners, and one older adult with dementia indicated that they had used a robot before. Online workshops had 4-8 participants each, and began with video demonstrations of pet-like robot MiRo and tabletop robot T-Top, as well as a live demonstration of MiRo. Participants completed the Multi-Dimensional Robot Attitude Scale before the workshops and the Psychosocial Impact of Assistive Devices Scale and two Zoom polls during the workshops. The audio and chat responses from the workshops were transcribed verbatim and content analysis was performed on the transcripts.ResultsOur analysis revealed three broad themes and 10 subthemes. In their discussions on features and applications, participants highlighted preferred forms of communication with a robot and ways in which a robot could support connection between people. For example, robots could improve the quality of communication between care partners and the person for whom they care. While many agreed that a social robot should match their level of emotion and interactivity, participants had different preferences for social robot emotional range and display features. Finally, participants discussed considerations around showing a robot to other people; several participants suggested that a robot could help raise awareness of ageing and dementia while others shared concerns about stigma and attracting negative attention from an audience.DiscussionIncorporating these findings into the design and implementation of social robots will result in devices that are better-suited to the needs of older adults, people living with dementia, and care partners.

For every individual living with dementia, the experience is unique. When you meet one person living with dementia, you have simply met one person. Dementia will change many things about life—but not all at once and often over many years. For many people, social isolation and loneliness may emerge as mental health challenges occur. This is when creating supportive interconnections are particularly critical to build meaning and purpose. Giving Voice Chorus was created in 2014 to address social isolation for people living with dementia. Our choruses, and other like-minded ones throughout the United States and the world, support new networks for people living with dementia, as well as their family members and friends. This is a behind-the-scenes story of how Giving Voice Chorus and a strong collection of similar choruses help meet cultural, social, geographic, and community needs for people who are determined to continue vibrant, creative lives with memory loss. We explore how these choruses developed and the creative lifeline they provide for individuals and families. For health-care professionals and others seeking resources and referrals, Giving Voice Chorus is a beacon of light—establishing new supportive networks with hope and affirmation. [ABSTRACT FROM AUTHOR]

Objectives: Arts-based programmes for persons with dementia have shown promise in alleviating some of the caregiving challenges for family care partners. The present study sought to broaden the sociocultural perspectives of arts-based programmes by investigating the impact of a locally developed Arts & Dementia programme for persons with dementia on their family care partners in Singapore.Methods: Thirty-two family care partners of persons with dementia who participated in the Arts & Dementia programme were recruited. A mixed-methodological study was employed utilising quantitative pre- and post-programme data from the Zarit Burden Interview and Gain in Alzheimer care Instrument, and qualitative data from semi-structured group interviews.Results: Although there were no self-reported short-term changes in perceived caregiving difficulties and gains, semi-structured group interviews revealed potential caregiving benefits. Six overarching themes were identified: (1) contentment and social engagement, (2) re-connecting and developing new interests, (3) positive influence on caregiving, (4) enhancements to the programme, (5) more arts programmes, and (6) more support for families living with dementia.Conclusion: The present study highlights potential benefits of community-based arts activities in enabling caregiving to be a more positive experience for care partners. Supplemental data for this article is available online at http://dx.doi.org/10.1080/13607863.2021.2008306 'I kept blaming myself for not spending enough time with him. Communication with him is different now. Watching him on the stage, he is happy and with a purpose'. (Gary, male) [ABSTRACT FROM AUTHOR]

Background and Objectives Driving cessation is a complex challenge with significant emotional and health implications for people with dementia, which also affects their family care partners. Automated vehicles (AVs) could potentially be used to delay driving cessation and its adverse consequences for people with dementia and their care partners. Yet, no study to date has investigated whether care partners consider AVs to be potentially useful for people with dementia. Research Design and Methods This mixed-methods study assessed the views of 20 former or current family care partners of people with dementia on AV use by people with dementia. Specifically, questionnaires and semistructured interviews were used to examine care partners' acceptance of AV use by people with dementia and their views about the potential usefulness of AVs for people with dementia. Results The results demonstrated that care partners identified possible benefits of AV use by people with dementia such as their anticipated higher social participation. However, care partners also voiced major concerns around AV use by people with dementia and reported significantly lower levels of trust in and perceived safety of AVs if used by the person with dementia in their care compared to themselves. Care partners' concerns about AV use by people with dementia included concerns around the driving of people with dementia that AVs are not designed to address; concerns that are specific to AVs but are not relevant to the nonautomated driving of people with dementia; and concerns that arise from existing challenges around the nonautomated driving of people with dementia but may be exacerbated by AV use. Discussion and Implications Findings from this study can inform future designs of AVs that are more accessible and useful for people with dementia. [ABSTRACT FROM AUTHOR]

Background: In Canada, more than 60% of persons living with dementia reside in their own homes, and over 25% rely heavily on their care partners (ie, family members or friends) for assistance with daily activities such as personal hygiene, eating, and walking. Assistive technology (AT) is a key dementia management strategy, helping to maintain health and social support in home and community settings. AT comprises assistive products and services required for safe and effective use. Persons living with dementia and their care partners often require multiple types of AT to maintain their needs, dignity, and autonomy. AT for dementia management is rapidly developing with abundant scientific literature, which can present a challenge to efficiently navigate and extract insights for policy and personal decision-making., Objective: This scoping review aims to synthesize review-level evidence from published scientific literature on AT to support dementia management for persons living with dementia and their care partners in their homes and communities. Research gaps in knowledge and areas for further investigation into the use and access of AT will be identified. This review will provide an overview of AT types and characteristics and chart the outcomes and conclusions in review-level evidence., Methods: This review will follow the Joanna Briggs Institute's framework for conducting scoping reviews and the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines. In total, 6 electronic databases will be searched. Articles will be screened according to the "Population-Concept-Context (PCC)" framework for eligible studies. Population includes persons living with dementia, their care partners, and health care professionals (eg, therapists or others who recommend AT). Concept includes AT and self-help devices of many types. Context includes homes and communities. A data charting template will guide data extraction, charting, and summarization. A descriptive numerical summary and an overview of the findings will be presented. Data, such as (1) article information (eg, author and year), (2) article characteristics (eg, review type), (3) AT types and characteristics, (4) setting and population characteristics, and (5) key review outcomes and conclusions, will be extracted., Results: A total of 10,978 unique citations were identified across the 6 electronic databases. This review is in the full-text screening stage, which is expected to be completed by October 2024., Conclusions: This review will provide a comprehensive understanding and documentation of the published scientific literature on AT to support dementia management. Findings from this review are expected to provide evidence-based insights on the complexities of AT types, uses, availability, and access. The author group's diverse national and international perspectives may contribute to knowledge exchange and influence standards to improve the daily function, safety, and well-being of persons living with dementia., Trial Registration: Open Science Framework DKSM9; https://osf.io/dksm9., International Registered Report Identifier (irrid): PRR1-10.2196/57036., (©Chaitali Desai, Erica Dove, Jarshini Nanthakumar, Emilia Main, Heather Colquhoun, Arlene Astell, Alex Mihailidis, Natasha Layton, Amer M Burhan, Brian Chan, Rosalie H Wang. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 11.11.2024.)

Dementia caregivers are responsible for the daily care and management of individuals who are among the most vulnerable to the serious consequences of COVID-19. This qualitative study explores the experience of Black dementia caregivers during the COVID-19 pandemic in the United States. Nineteen Black dementia caregivers were recruited to participate in semi-structured focus groups held in April 2021. Four overarching themes were constructed during analysis: social isolation, decreased well-being, the good and bad of telehealth, and challenges fulfilling health care needs. The results indicate the experience of Black dementia caregivers overlaps with existing literature on the experiences of dementia caregivers of other races during COVID-19. These results can assist in addressing the specific needs and improving the experiences of dementia caregivers in current and future public health crises. [ABSTRACT FROM AUTHOR]

Objectives: The burden on care partners, particularly once dementia emerges, is among the greatest of all caregiving groups. This meta-review aimed to (1) synthesis evidence on the self-reported needs of care partners supporting people living with neurodegenerative disorders; (2) compare the needs according to care partner and care recipient characteristics; and (3) determine the face validity of existing care partner needs assessment tools.Methods: We conducted a systematic review of reviews involving a thematic synthesis of care partner needs and differences in needs according to demographic and other characteristics. We then conducted a gap analysis by identifying the themes of needs from existing needs assessment tools specific to dementia and cross-matching them with the needs derived from the thematic synthesis.Results: Drawing on 17 published reviews, the identified range of needs fell into four key themes: (1) knowledge and information, (2) physical, social and emotional support, (3) care partner self-care, and (4) care recipient needs. Needs may differ according to disease trajectory, relationship to the care recipient, and the demographic characteristics of the care partner and recipient. The 'captured needs' range between 8% and 66% across all the included needs assessment tools.Conclusions: Current tools do not fully or adequately capture the self-identified needs of care partners of people living with neurodegenerative disorders. Given the high burden on care partners, which has been further exacerbated by the COVID-19 (SARS CoV-2) pandemic, the needs assessment tools should align with the self-reported needs of care partners throughout the caregiving trajectory to better understand unmet needs and target supportive interventions. [ABSTRACT FROM AUTHOR]

Those diagnosed with dementia and those who provide care and support often feel socially isolated with limited opportunities for social engagement, increasing the potential for loneliness and further isolation that is detrimental to social health. This study examined how a co‐designed dementia café impacted on the self‐reported social health of community dwelling people with dementia and their care partners in the North‐West of England. Semi‐structured interviews were conducted at two time periods (summer of 2019 and spring of 2020), with five people living with dementia and eight care partners. The key finding was that participating in the cafés led to a sense of belonging and purpose that was beneficial to well‐being and social health for all participants. Community‐based initiatives that provide opportunities for peer support for the person with the diagnosis and the care partner are essential so that people living with dementia may rebuild their confidence as well as retaining opportunities to socialise. [ABSTRACT FROM AUTHOR]

As part of the iCARE-PD project, a multinational and multidisciplinary research endeavour to address complex care in Parkinson's disease, a Canadian case study focused on gaining a better understanding of people living with Parkinson's disease (PwP) experiences with health and medical services, particularly their vision for a sustainable, tailored and integrated care delivery network. The multifaceted nature of the condition means that PwP must continuously adapt and adjust to every aspect of their lives, and progressively rely on support from care partners (CP) and various health care professionals (HCP). To envision the integrated care delivery network from the perspective of PwP, the study consisted of designing scenarios for an integrated care delivery network with patients, their CP and their HCP, as well as identifying key requirements for designing an integrated care delivery network. The results demonstrate that numerous networks interact, representing specific inscriptions, actors and mediators who meet at specific crossing points. This resulted in the creation of a roadmap and toolkit that takes into consideration the unique challenges faced by PwP, and the necessity for an integrated care delivery network that can be personalized and malleable so as to adapt to evolving and changing needs over time. [ABSTRACT FROM AUTHOR]

Rationale & Objective: Many older adults receiving hemodialysis have mobility limitations and rely on care partners, yet data are sparse regarding the support provided by care partners. Our aim was to examine how care partners support the mobility of an older adult receiving hemodialysis. Study Design: Qualitative study. Setting & Participants: Using purposive sampling, we recruited persons aged 60 years or more receiving maintenance hemodialysis and care partners aged 18 years or more who were providing support to an older adult receiving hemodialysis. We conducted in-person semi-structured interviews about mobility with each individual. Analytical Approach: We conducted descriptive and focused coding of interview transcripts and employed thematic analysis. Our outcome was to describe perceived mobility supports provided by care partners using qualitative themes. Results: We enrolled 31 older adults receiving hemodialysis (42% women, 68% Black) with a mean age of 73 ± 8 years and a mean dialysis duration of 4.6 ± 3.5 years. Of these, 87% of patients used assistive devices and 90% had care partners. We enrolled 12 care partners (75% women, 33% Black) with a mean age of 54 ± 16 years. From our patient and care partner interviews, we found three themes: (1) what care partners see, (2) what care partners do, and (3) what care partners feel. Regarding what they see, care partners witness a decline in patient mobility. Regarding what they do, care partners guide and facilitate activities and manage others who also assist. Regarding what they feel, care partners respect the patient’s autonomy but experience frustration and worry about the patient’s future mobility. Limitations: Modest sample size; single geographic area. Conclusions: In older adults receiving hemodialysis, care partners observe a decline in mobility and provide support for mobility. They respect the patient’s autonomy but worry about future mobility losses. Future research should incorporate care partners in interventions that address mobility in older adults receiving hemodialysis.

Growing reliance on the patient portal as a mainstream modality in health system interactions necessitates prioritizing digital health equity through systems-level strategies that acknowledge and support all persons. Older adults with physical, cognitive, sensory, and socioeconomic vulnerabilities often rely on the involvement of family and friends in managing their health, but the role of these care partners in health information technology is largely undefined and poorly understood. This viewpoint article discusses challenges and opportunities of systematic engagement of care partners through shared access to the patient portal that have been amplified in the context of the COVID-19 outbreak and recent implementation of federal information blocking rules to promote information transparency alongside broader shifts toward care delivery innovation and population aging. We describe implementation considerations and the promise of granular, role-based privacy controls in addressing the nuanced and dynamic nature of individual information sharing preferences and fostering person- and family-centered care delivery. [ABSTRACT FROM AUTHOR]

Aim: This study aims to classify, describe, and compare the problems reported by care partners of adults with Alzheimer's disease (AD) and Lewy body dementia (LBD) using the International Classification of Functioning Disability and Health (ICF) Methods: Problems that care partners experience were collected during a problem-solving training intervention. The meaningful concepts were then extracted and linked to the ICF using a standardized linking technique. Results: 402 meaningful concepts were extracted from 128 problems reported by care partners. 79.4% of the concepts were linkable to the ICF. "Body functions" was most frequently addressed followed by "Activities and participation." LBD care partners reported more problems (M = 23.6 ± 13.4) on average than AD care partners (M = 19.4 ± 12.1). LBD care partners reported greater relative proportions of problems in mental function (emotional and sleep functions) than AD care partners. Conclusion: This study suggests that the experience of LBD care partners may include significantly more challenges and may be more emotionally demanding than the care experience of AD care partners. Interventions designed to support care partners of adults with dementia may need to be tailored to meet the needs of care partners based on the care receiver's type of dementia. [ABSTRACT FROM AUTHOR]

Rationale & Objective: Chronic kidney disease (CKD) has a far-reaching impact on both patients and care partners, which can be further compounded by frequent complications such as anemia. This study assessed the burden experienced by patients with CKD and the care partners of patients with CKD, with and without anemia. Study Design: Online survey. Setting & Participants: Adult patients with CKD and the care partners of adult patients with CKD living in the United States were recruited through the American Association of Kidney Patients and a third-party online panel (January 9, 2020-March 12, 2020). Outcomes: Patient and care partner characteristics, care received or provided; health-related quality of life, and work productivity. Analytical Approach: Descriptive statistics were reported separately based on the presence or absence of anemia. Results: In total, 410 patients (anemia: n=190, no anemia: n=220) and 258 care partners (anemia: n=110, no anemia: n=148) completed the survey. Most patients reported receiving paid or unpaid care because of their health condition (anemia: 58.9%, no anemia: 50.9%), with an overall average of 14.2 and 11.3 h/wk among the anemia and no anemia patients, respectively. The care partners also reported providing numerous hours of care (anemia: 33.6 h/wk, no anemia: 38.0 h/wk), especially care partners living with their care recipient (anemia: 52.6 h/wk, no anemia: 42.8 h/wk). Among the patients, those with anemia reported a numerically lower average health-related quality of life (Functional Assessment of Cancer Therapy-Anemia score, anemia: 110.1; no anemia: 121.6). Most care partners reported a severe or very severe burden (Burden Scale for Family Caregivers-Short Version score≥15, anemia: 69.1%; no anemia: 58.8%). The work productivity impairment was substantial among employed patients (anemia: 44.9%, no anemia: 35.4%) and employed care partners (anemia: 47.9%, no anemia: 40.7%). Limitations: The survey results may have been subject to selection and recall biases; moreover, the observational nature of the study does not allow for causal inferences. Conclusions: Patients with CKD and the care partners of patients with CKD experience a considerable burden, especially when anemia is present.

In addition to numerous care responsibilities, family caregivers are expected to navigate health systems and engage in healthcare management tasks on behalf of their persons living with dementia (PLWD). These challenging tasks pose additional difficulties for Black dementia caregivers. Due to the centuries‐old, disadvantaged social history of Black Americans, several unique stressors, vulnerabilities, and resources have emerged which inform and affect Black dementia caregivers' experiences and well‐being. Focus groups were held with Black caregivers (N = 19) from the United States to explore the unique experiences and perspectives of this population navigating the U.S. health system on behalf of their PLWD. Five overarching themes were constructed during thematic analysis: Forced Advocacy, Poor Provider Interaction, Payor Source Dictates Care, Discrimination, and Broken Health System. Black dementia caregivers unanimously concurred that the health system that they experience in America is "broken." Gaps in the health system can lead to people [as one caregiver passionately expressed] "falling between the cracks," in terms of care, services, and resources needed. Caregivers agreed that class, sex, utilizing public health insurance, and being a "person of color" contribute to their difficulties navigating the health system. Caregivers perceived being dismissed by providers, forcing them to advocate for both themselves and their PLWD. Healthcare providers and researchers can utilize these findings to improve the experiences and healthcare outcomes of Black persons living with dementia and their caregivers. Additionally, these findings can lead to the development of culturally tailored caregiver education programs. [ABSTRACT FROM AUTHOR]

Background: Home health clinicians report a need for family caregiver assistance during the majority of skilled home health care episodes. Since 2018, the Medicare Conditions of Participation has required home health agencies to provide training to family caregivers. However, little is known regarding current practices of family caregiver assessment and training during home health care. Methods: Qualitative research relying on semistructured key informant interviews with registered nurses and physical therapists (n = 19), hereafter "clinicians," from four home health agencies. Interviews were recorded and transcribed, then analyzed using directed content analysis to identify relevant themes and concepts. Results: Three agencies were not‐for‐profit and one was for‐profit; three were urban and one was rural; two operated on a local scale, one on a regional scale, and one on a national scale. Key informants had an average of 9.3 years of experience in home health care and an average age of 45.0 years. Clinicians described a cyclic process of family caregiver training including four major phases: initial assessment, education, reassessment, and adjustment. Initial assessment was informal and holistic; education was delivered via demonstration and teach‐back; reassessment was used to evaluate caregiver progress and inform adjustments to the care plan. Clinicians noted that their perceptions regarding the success of family caregiver training efforts influenced decisions relating to clinical practice, including the number of visits provided and whether to discharge the patient. Conclusions: Caregiver training is currently integrated into clinician workflows in home health care and helps determine visit intensity and discharge timing, but clinicians face a lack of structured assessment instruments or training materials. Efforts by policymakers and home health agencies to facilitate clinicians' training efforts could positively affect the cost and quality of Medicare‐funded home health care. [ABSTRACT FROM AUTHOR]

Aim: This study aims to classify, describe, and compare the problems reported by care partners of adults with Alzheimer's disease (AD) and Lewy body dementia (LBD) using the International Classification of Functioning Disability and Health (ICF) Methods: Problems that care partners experience were collected during a problem-solving training intervention. The meaningful concepts were then extracted and linked to the ICF using a standardized linking technique. Results: 402 meaningful concepts were extracted from 128 problems reported by care partners. 79.4% of the concepts were linkable to the ICF. "Body functions" was most frequently addressed followed by "Activities and participation." LBD care partners reported more problems (M = 23.6 ± 13.4) on average than AD care partners (M = 19.4 ± 12.1). LBD care partners reported greater relative proportions of problems in mental function (emotional and sleep functions) than AD care partners. Conclusion: This study suggests that the experience of LBD care partners may include significantly more challenges and may be more emotionally demanding than the care experience of AD care partners. Interventions designed to support care partners of adults with dementia may need to be tailored to meet the needs of care partners based on the care receiver's type of dementia. [ABSTRACT FROM AUTHOR]