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Background: Caregivers have considerable responsibilities in supporting persons in advanced stages of dementia, however they receive little education. Namaste Care is a multisensory program originally designed to be delivered by healthcare providers in long-term care homes for persons with advanced dementia. The program has not yet been adapted and evaluated for use by caregivers of persons with moderate to advanced dementia living at home. The purpose of this feasibility study is to determine the feasibility, acceptability and preliminary effectiveness of the adapted Namaste Care program for use by caregivers of community-dwelling older persons with moderate to advanced dementia., Methods: This feasibility study, with a one-group before-after design and interviews, was part of a larger study using a multiphase mixed methods design. A total of 12 caregivers delivered the program over three months. Caregivers completed questionnaires on caregiver quality of life, perceptions of caregiving, self-efficacy, and burden at baseline and 3-month follow-up. Caregivers participated in interviews at the 3-month follow-up to explore acceptability and perceived benefit. Descriptive statistics and paired t-tests were used to analyze quantitative data. A secondary analysis used multiple imputation to explore the impact of missing data. Experiential thematic analysis was used in analyzing qualitative data., Results: The adapted Namaste Care program was judged to be feasible, given that all caregivers used it at least twice a week over the 3-month period. The retention rate of caregivers was 83% (10 of 12). Caregivers perceived that the program was practical, enhanced the wellbeing of persons with dementia, and brought them closer in their relationships with persons with dementia. There were no statistically significant changes for quality of life, perceptions of caregiving, self-efficacy, or burden outcomes. Multiple imputation results revealed promising findings for an improvement in caregiver wellbeing related to quality of life., Conclusions: The adapted Namaste Care program for use by caregivers of community-dwelling older persons with moderate to advanced dementia was feasible and acceptable. The program has the potential to enhance the quality of life and other outcomes of caregivers, however there is a need to conduct a larger trial that is adequately powered to detect these effects., (© 2022. The Author(s).)

Background: Mobility deficits have been identified as an independent risk factor for hospital readmission for adults ≥65 years. Despite evidence indicating how determinants additively influence and predict mobility, no hospital-to-home care transition models comprehensively assess all seven mobility determinants, cognitive, financial, environmental, personal, physical, psychological, and social. There is currently a lack of clarity regarding what factors clinicians and researchers should evaluate for each mobility determinant. The purpose of this e-Delphi study is to prioritize and reach consensus on the factors for each mobility determinant that are critical to assess as part of the Comprehensive Mobility Discharge Assessment Framework (CMDAF) when older adults are discharged from hospital-to-home., Methods: This protocol paper is an international modified e-Delphi study following the Recommendations for the Conducting and Reporting of Delphi Studies. International researchers, clinicians, older adults and family caregivers residing in a country with universal or near-universal health coverage will be invited to participate as 'experts' in three e-Delphi rounds administered through DelphiManager©. The e-Delphi Round 1 questionnaire will be developed based on scoping review findings and will be pilot tested. For each round, experts will be asked to rate factors for each determinant that are critical to assess as part of the CMDAF using a 9-point scale: Not Important (1-3), Important but Not Critical (4-6), and Critical (7-9). The scale will include a selection option of "unable to score" and experts will also be asked to provide a rationale for their scoring and suggest missing factors. Experts will receive feedback summaries in Rounds 2 and 3 to guide them in reflecting on their initial responses and re-rating of factors that have not reached consensus. The criteria for reaching consensus will be if ≥70% of experts rate a factor as "critical" (scores ≥7) and ≤ 15% of experts rate a factor as "not important" (scores≤ 3). Quantitative data will be analyzed using median values, frequencies, percentages, interquartile range, and bar graphs; Wilcoxon matched-pairs signed-rank test will be used to assess the stability of participants' responses. Rationale (qualitative data) provided in the open-ended comments section will be analyzed using content analysis., Conclusion: This study is a first step in developing the CMDAF and will be used to guide a subsequent e-Delphi survey to decide on the tools that should be used to measure the examples of each factor included in our framework., Competing Interests: The authors have declared that no competing interests exist.

Stroke can be a life altering event that necessitates considerable amounts of formal and informal care. The impacts of stroke often persist over time requiring ongoing support for stroke survivors. Family members provide the majority of care and experience many life changes as a result of their caregiving role including social, financial, employment and health impacts. Formal supports such as counselling, respite, and health promotion initiatives that directly benefit caregivers or benefit them indirectly through supporting the stroke survivor, are well-placed to help caregivers manage their caregiving role. However, to date little is known about formal service use by stroke caregivers and the factors that influence their service use. This scoping review provides a critique and synthesis of what is known about stroke caregivers' access and use of formal services intended to support them. Findings suggest that while services are available, caregivers' ability to use them are impacted by both facilitators and barriers. Facilitators included: sex, age, and having a higher household income (depending on services used). Barriers included: high cost, poor service quality and deficient knowledge/communication regarding service availability. This review highlights a significant gap in our knowledge of caregivers' experience in accessing and using formal services.

Background: Evidence has shown that family and friend caregivers of stroke survivors are significantly and negatively impacted by caregiving. The negative effects of caregiving may persist over time suggesting that caregivers might benefit from ongoing engagement with supportive services. However, little is known about caregivers' use of formally funded health and social services, or the factors influencing their access to and use of these services. The aim of this study is to increase understanding of the factors that influence stroke caregivers' access and use of formal health and social services, from the perspective of stroke caregivers and healthcare providers., Methods: A qualitative study was conducted with stroke caregivers and health providers in Ontario, Canada using interpretive description. In-depth interviews were conducted with caregivers of survivors who experienced a stroke between six months to five years previous and healthcare providers who support caregivers and stroke survivors. All participants provided written informed consent. Interview data were analyzed using constant comparison to identify codes and develop key thematic constructs., Results: A total of 40 interviews were conducted with 22 stroke caregivers at an average 30-months post-stroke and 18 health providers. Factors that influenced stroke caregivers' access and use of services included: finances and transportation; challenges caregivers faced in caring for their health; trust that they could leave their family member and trust in health providers; limited information pertaining to services and a lack of suitable services; and the response of their social networks to their caregiving situation., Conclusion: Stroke caregivers experience significant challenges in accessing and using formal health and social services. These challenges could be addressed by increasing availability of subsidized community-based supports such as respite and counselling tailored to meet the ongoing needs of caregivers. Systemic change is needed by the health system that readily includes and supports caregivers throughout the stroke recovery continuum, particularly in the community setting., (© 2022. The Author(s).)

Background: Family caregivers of persons with dementia often feel unprepared for end-of-life and preparedness predicts caregiver outcomes in bereavement. Existing questionnaires assessing preparedness have limitations. A multi-dimensional questionnaire assessing family caregiver preparedness for the end-of-life of persons with dementia is needed to identify caregivers at risk for negative outcomes in bereavement and evaluate the quality of strategies within a palliative approach., Aim: To develop a multi-dimensional questionnaire titled 'Caring Ahead' to assess feelings of preparedness for end-of-life in family caregivers of persons with dementia., Design: A mixed methods, sequential design employed semi-structured interviews, a Delphi-survey and pilot-testing of the questionnaire, June 2018 to July 2019., Setting/population: Participants included five current and 16 bereaved family caregivers of persons with symptoms advanced dementia from long-term care homes in Ontario, Canada; and 12 professional experts from clinical and academic settings in Canada, Europe, United States., Results: Interviews generated three core concepts and 114 indicators of preparedness sampling cognitive, affective and behavioural traits in four domains (i.e., medical, psychosocial, spiritual, practical). Indicators were translated and reduced to a pool of 73 potential questionnaire items. 30-items were selected to create the 'Caring Ahead' preparedness questionnaire through a Delphi-survey. Items were revised through a pilot-test with cognitive interviewing., Conclusions: Family caregivers' feelings of preparedness for end-of-life need to be assessed and the quality of strategies within a palliative approach evaluated. Future psychometric testing of the Caring Ahead questionnaire will evaluate evidence for validity and reliability.

Family caregiving is considered a social transition as changes in the health of the care recipient create a process of transition for the caregiver when they are more vulnerable to threats to their own health. Family and friend caregivers take on many responsibilities and experience high levels of burden when caring for community-dwelling older adults living with dementia and multiple chronic conditions. However, little is known about the changes they experience in their caring roles or how they cope with these changes. This qualitative descriptive study was part of a larger mixed methods randomized controlled trial evaluating a web-based caregiver support toolkit. Multiple semi-structured phone interviews were conducted with caregivers of older adults with dementia and multiple chronic conditions. Content analysis was used to generate thematic descriptions. Six themes were generated and grouped into two categories. Significant changes experienced by caregivers are described by the following themes: 'everything falls on you - all of the responsibilities,' 'too many feelings' and 'no time for me.' The themes describing how caregivers coped with these changes include: seeking support, self-caring, and adapting their caregiving approach. Study results indicate that caregivers of older adults with dementia and multiple chronic conditions experienced many changes in their caregiving journey resulting in increasing complexity as they tended to the care recipients' declining health and well-being. These caregivers used several creative strategies to cope with these changes. Health care providers should consider both the caregiver and care recipient as clients in the circle of care, and facilitate their linkage with health and community support services to help address the increasing complexity of care needs.

Introduction: In 2012, the Ontario government launched Health Links (HL), which was designed to integrate care for patients with multimorbidity and complex needs who are high users of health services. This study evaluated perceptions of family and friend caregivers of patients enrolled in the HL program. Research questions included: What are (a) characteristics of caregivers of patients enrolled in HL (b) caregivers' perceptions of the program in relation to HL's guiding principles (patient and family-centred care, accessibility, coordination of services, and continuity of care and care provider) and (c) caregivers' perceptions of the impact of HL on themselves and their care recipient?, Methods: This study involved a survey and qualitative, semi-structured interviews. HL guiding principles (patient and family-centered care, accessibility, coordination of services, and continuity) guided the analysis., Results: Twenty-seven surveys and 16 qualitative interviews were completed. Caregivers reported high levels of strain [Modified Caregiver Strain Index (MCSI) 15.5 (SD 7.03)], mild anxiety [Generalized Anxiety Disorder (GAD 7), 9.6 (SD 6.64)] and depression [Center for Epidemiological Studies Depression Scale (CES-D 10), 11.9 (SD 8.72)]. Regarding the guiding principles, most caregivers had a copy of the HL patient's care plan, although some caregivers noted that their needs were not included in the plan, nor were they asked for input. Caregivers found the program's home and phone visits accessible. Despite minimum wait times for community-based services, other access barriers persisted, (i.e., out-of-pocket costs). HL provided well-coordinated patient services, although some perceived that there was poor team communication. Caregiver perceptions varied on the quality of care provided. Provider continuity provided caregiver relief and patient support: A lack of continuity was related to changes in care coordinators and weekend staff and attrition., Conclusions: Caregivers of HL patients appreciated patient- and family-centred, accessible, consistent, coordinated and team-based approaches in care. Providers and decision-makers are urged to ensure that programs aimed at high system users address these core concepts while addressing caregivers' needs., Competing Interests: The authors have declared that no competing interests exist.

Objectives Family caregivers (defined broadly as family and friends) of persons with dementia are challenged to cope with myriad stressors and changes that occur along the dementia trajectory. The purpose of this study was to explore the transitions experienced by caregivers of persons with dementia after their relative relocated to a 24-hour care home. : Family caregivers (defined broadly as family and friends) of persons with dementia are challenged to cope with myriad stressors and changes that occur along the dementia trajectory. The purpose of this study was to explore the transitions experienced by caregivers of persons with dementia after their relative relocated to a 24-hour care home. Method : Caregiving continues after placement of family members with dementia in 24-hour care homes. Caregivers are at-risk group and require ongoing support throughout the caregiving journey. Study participants reported that navigation skills such as relationship building, communication, and advocacy were particularly salient to the post-placement period, when navigating the complex health care environment was a significant obstacle. Ultimately, findings from these focus groups will be used to inform an online intervention to support caregivers of a family member with dementia residing in a 24-hour care home.Results: Four main themes were co-constructed from the data analysis: living with loss, relinquishing, redefining the caregiving role, and rediscovering and recreating a new self. Discussion: Caregiving continues after placement of family members with dementia in 24-hour care homes. Caregivers are at-risk group and require ongoing support throughout the caregiving journey. Study participants reported that navigation skills such as relationship building, communication, and advocacy were particularly salient to the post-placement period, when navigating the complex health care environment was a significant obstacle. Ultimately, findings from these focus groups will be used to inform an online intervention to support caregivers of a family member with dementia residing in a 24-hour care home.

Background: Living with multiple chronic conditions (MCC), the coexistence of two or more chronic conditions, is becoming more prevalent as the population ages. Primary care and home care providers play key roles in caring for older adults with MCC such as facilitating complex care decisions, shared decision-making, and access to community health and support services. While there is some research on the perceptions and experiences of these providers in caring for this population, much of this literature is focused specifically on family physicians. Little is known about the experiences of other primary care and home care providers from multiple disciplines who care for this vulnerable group. The purpose of this study was to explore the experiences of primary and home care healthcare providers in supporting the care of older adults with MCC living in the community, and identify ways of improving care delivery and outcomes for this group., Methods: The study used an interpretive descriptive design. A total of 42 healthcare providers from two provinces in Canada (Ontario and Alberta) participated in individual semi-structured, face-to-face 60-min interviews. Participants represented diverse disciplines from primary care and home care settings. Inductive thematic analysis was used for data analysis., Results: The experiences and recommendations of healthcare providers managing care for older adults with MCC were organized into six major themes: (1) managing complexity associated with MCC, (2) implementing person-centred care, (3), supporting caregivers, (4) using a team approach for holistic care delivery, (5) encountering challenges and rewards, and (6) recommending ways to address the challenges of the healthcare system. Healthcare providers identified the need for a more comprehensive, integrated system of care to improve the delivery of care and outcomes for older adults with MCC and their family caregivers., Conclusions: Study findings suggest that community-based healthcare providers are using many relevant and appropriate strategies to support older adults living with the complexity of MCC, such as implementing person-centred care, supporting caregivers, working collaboratively with other providers, and addressing social determinants of health. However, they also identified the need for a more comprehensive, integrated system of care.

Purpose:: The purpose of this study was to clarify the concept of death preparedness for family caregivers in dementia. Conceptualization was required to support the assessment, promotion, and operationalization (ie, measurement) of death preparedness through palliative care interventions such as advance care planning., Methods:: Rodgers evolutionary method of concept analysis was selected to guide this study because of the dynamic nature of death preparedness influenced by context, setting, and time. A comprehensive literature search was conducted. Authors performed constant comparative analysis to identify and interpret surrogate/related concepts, attributes, antecedents, and consequences of death preparedness., Results:: Most importantly attributes included (1) knowing and recognizing the symptoms of decline in dementia and what dying looks like; (2) understanding emotions and grief responses; (3) accessing and appraising supports needed to manage and care for dying; (4) organizing affairs and completing tasks in advance; (5) accepting that losses are inevitable and imminent; (6) reflecting on caregiving and finding meaning, "a silver-lining"; and (7) closing, reconciling, and renewing relationship bonds and completing the family member's life., Discussion:: This study contributed a full definition of death preparedness in dementia. Findings aligned with/expanded upon Hebert et al Theoretical Framework of Preparedness for End-of-Life. The use of problem- and emotion-based coping strategies by caregivers with support from health-care providers to promote feelings of death preparedness (including self-efficacy and control) and minimize uncertainty was the implication of this study. Development of a holistic preparedness instrument is underway.

Background: Caregivers are often unprepared and overwhelmed with the responsibilities of providing care to stroke survivors, which can lead to negative physical and psychological effects., Purpose: To evaluate the impact of the Family Informal Caregiver Stroke Self-Management (FICSS) program on burden and life changes resulting from providing care among family caregivers of stroke survivors., Methods: A prospective pre-test and post-test design using quantitative and qualitative data was used to evaluate the program with a convenience sample of 42 caregivers. The four-module facilitated program consisted of small group-guided discussion. Quantitative evaluations were completed at baseline, 2 weeks and 6 months (post-intervention), and qualitative data were collected at 2 weeks and 6 months. Life changes and burden were measured using the Bakas Caregiving Outcome Scale (BCOS) and the Oberst Caregiving Burden Scale (OCBS), respectively., Results: The BCOS scores increased consistently over time, showing significant differences at 6 months compared with 2 weeks (mean difference: 5.29, 95% confidence interval [CI]: 0.30-10.28, p=0.04) and baseline (mean difference: 7.58, 95% CI: 2.92-12.23, p=0.001). The OCBS time scores decreased consistently over time, showing a significant difference at 6 months compared with baseline (mean difference: -5.20, 95% CI: -0.96 to -9.44, p=0.02). The OCBS difficulty scores fluctuated over time, resulting in no overall difference from baseline to 6 months. Qualitative themes were consistent with the positive quantitative findings., Conclusion: Study results suggest that the FICSS program may result in reduced caregiver burden and improved life changes resulting from providing care.

Background: Approaches to support the health and well-being of family caregivers of adults with chronic conditions are increasingly important given the key roles caregivers play in helping family members to live in the community. Web-based interventions to support caregivers have the potential to lessen the negative health impacts associated with caregiving and result in improved health outcomes., Objective: The primary objective of this systematic review and meta-analysis was to examine the effect of caregiver-focused, Web-based interventions, compared with no or minimal Web-based interventions, on caregiver outcomes. The secondary objective was to assess the effect of different types of Web-based interventions (eg, education, peer and professional psychosocial support, and electronic monitoring of the care recipient), compared with no or minimal Web-based interventions, on caregiver outcomes., Methods: MEDLINE, EMBASE, CIHAHL, PsychInfo, Cochrane, and AgeLine were searched from January 1995 to April 2017 for relevant randomized controlled trials (RCTs) or controlled clinical trials (CCTs) that compared caregiver-focused, Web-based intervention programs with no or minimal Web-based interventions for caregivers of adults with at least one chronic condition. Studies were included if they involved: adult family or friend caregivers (aged ≥18 years) of adults living in the community with a chronic condition; a caregiver-focused, Web-based intervention of education or psychosocial support or electronic monitoring of the care recipient; and general caregiver outcomes (ie, burden, life satisfaction, self-efficacy or mastery, reaction to problem behavior, self-esteem, strain, and social support). Title and abstract as well as full-text screening were completed in duplicate. Data were extracted by a single reviewer and verified by a second reviewer, and risk of bias assessments were completed accordingly. Where possible, data for these caregiver outcomes were meta-analyzed., Results: The search yielded 7927 unique citations, of which 294 studies were screened at full text. Of those, 14 studies met the inclusion criteria; 12 were RCTs and 1 study was a CCT. One study used an RCT design in 1 country and a CCT design in 2 other countries. The beneficial effects of any Web-based intervention program, compared with no or minimal Web-based intervention, resulted in a mean increase of 0.85 points (95% CI 0.12 to 1.57) for caregiver self-esteem, a mean increase of 0.36 points (95% CI 0.11 to 0.62) for caregiver self-efficacy or mastery, and a mean decrease of 0.32 points (95% CI -0.54 to -0.09) for caregiver strain. However, the results are based on poor-quality studies., Conclusions: The review found evidence for the positive effects of Web-based intervention programs on self-efficacy, self-esteem, and strain of caregivers of adults living with a chronic condition. Further high-quality research is needed to inform the effectiveness of specific types of Web-based interventions on caregiver outcomes., Trial Registration: PROSPERO CRD42018091715; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=91715 (Archived by WebCite at http://www.webcitation.org/738zAa5F5)., (©Jenny Ploeg, Muhammad Usman Ali, Maureen Markle-Reid, Ruta Valaitis, Amy Bartholomew, Donna Fitzpatrick-Lewis, Carrie McAiney, Diana Sherifali. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 26.10.2018.)

Background: As the population is aging, the number of persons living with multiple chronic conditions (MCC) is expected to increase. This review seeks to answer two research questions from the perspectives of older adults with MCC, their caregivers and their health care providers (HCPs): 1) What are the health and social care needs of community-dwelling older adults with MCC and their caregivers? and 2) How do social and structural determinants of health impact these health and social care needs?, Methods: We conducted a scoping review guided by a refinement of the Arksey & O'Malley framework. Articles were included if participants were 55 years or older and have at least two chronic conditions. We searched 7 electronic databases. The data were summarized using thematic analysis., Results: Thirty-six studies were included in this review: 28 studies included participants with MCC; 12 studies included HCPs; 5 studies included caregivers. The quality of the studies ranged from moderate to good. Five main areas of needs were identified: need for information; coordination of services and supports; preventive, maintenance and restorative strategies; training for older adults, caregivers and HCPs to help manage the older adults' complex conditions; and the need for person-centred approaches. Structural and social determinants of health such as socioeconomic status, education and access influenced the needs of older adults with MCC., Conclusion: The review highlights that most of the needs of older adults with MCC focus on lack of access to information and coordination of care. The main structural and social determinants that influenced older adults' needs were their level of education/health literacy and their socioeconomic status.

Background: The health of informal caregivers of adults with chronic conditions is increasingly vital since caregivers comprise a large proportion of supportive care to family members living in the community. Due to efficiency and reach, internet-based interventions for informal caregivers have the potential to mitigate the negative mental health outcomes associated with caregiving., Objective: The objective of this systematic review and meta-analysis was to examine the impact of internet-based interventions on caregiver mental health outcomes and the impact of different types of internet-based intervention programs., Methods: MEDLINE, EMBASE, CINAHL, PsycINFO, Cochrane, and AgeLine databases were searched for randomized controlled trials or controlled clinical trials published from January 1995 to April 2017 that compared internet-based intervention programs with no or minimal internet-based interventions for caregivers of adults with at least 1 chronic condition. The inclusion criteria were studies that included (1) adult informal caregivers (aged 18 years or older) of adults living in the community with a chronic condition; (2) an internet-based intervention program to deliver education, support, or monitoring to informal caregivers; and (3) outcomes of mental health. Title and abstract and full-text screening were completed in duplicate. Data were extracted by a single reviewer and verified by a second reviewer, and risk of bias assessments were completed accordingly. Where possible, data for mental health outcomes were meta-analyzed., Results: The search yielded 7923 unique citations of which 290 studies were screened at full-text. Of those, 13 studies met the inclusion criteria; 11 were randomized controlled trials, 1 study was a controlled clinical trial, and 1 study comprised both study designs. Beneficial effects of any internet-based intervention program resulted in a mean decrease of 0.48 points (95% CI -0.75 to -0.22) for stress and distress and a mean decrease of 0.40 points (95% CI -0.58 to -0.22) for anxiety among caregivers. For studies that examined internet-based information and education plus professional psychosocial support, the meta-analysis results showed small to medium beneficial effect sizes of the intervention for the mental health outcomes of depression (-0.34; 95% CI -0.63 to -0.05) and anxiety (-0.36; 95% CI -0.66 to -0.07). Some suggestion of a beneficial effect on overall health for the use of information and education plus combined peer and professional support was also shown (1.25; 95% CI 0.24 to 2.25). Overall, many studies were of poor quality and were rated at high risk of bias., Conclusions: The review found evidence for the benefit of internet-based intervention programs on mental health for caregivers of adults living with a chronic condition, particularly for the outcomes of caregiver depression, stress and distress, and anxiety. The types of interventions that predominated as efficacious included information and education with or without professional psychological support, and, to a lesser extent, with combined peer and psychological support. Further high-quality research is needed to inform the effectiveness of interactive, dynamic, and multicomponent internet-based interventions., Trial Registration: PROSPERO CRD42017075436; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=75436 (Archived by WebCite at http://www.webcitation.org/709M3tDvn)., (©Diana Sherifali, Muhammad Usman Ali, Jenny Ploeg, Maureen Markle-Reid, Ruta Valaitis, Amy Bartholomew, Donna Fitzpatrick-Lewis, Carrie McAiney. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 03.07.2018.)

Background: My Tools 4 Care (MT4C) is a Web-based intervention that was developed based on the transitions theory. It is an interactive, self-administered, and portable toolkit containing six main sections intended to support carers of community-living persons with Alzheimer's disease and related dementia and multiple chronic conditions through their transition experiences., Objective: The objective of our study was to evaluate the effectiveness of MT4C with respect to increasing hope, self-efficacy, and health-related quality of life in carers of community-living older persons with Alzheimer's disease and related dementia and multiple chronic conditions., Methods: A multisite, pragmatic, mixed methods, longitudinal, repeated-measures, randomized controlled trial was conducted between June 2015 and April 2017. Eligible participants were randomized into either treatment (MT4C) or educational control groups. Following baseline measures, carers in the treatment group received 3 months of password-protected access to MT4C. Trained research assistants collected data from participants via phone on hope (Herth Hope Index [HHI]), self-efficacy (General Self-Efficacy Scale), and health-related quality of life (Short Form-12 item [version 2] health survey; SF-12v2) at baseline, 1, 3, and 6 months. The use and cost of health and social services (Health and Social Services Utilization Inventory) among participants were measured at baseline, 3, and 6 months. Analysis of covariance was used to identify group differences at 3 months, and generalized estimating equations were used to identify group differences over time., Results: A total of 199 carers participated in this study, with 101 participants in the treatment group and 98 in the educational control group. Of all, 23% (45/199) participants withdrew during the study for various reasons, including institutionalization or death of the person with dementia and lack of time from the carer. In the treatment group, 73% (74/101) carers used MT4C at least once over the 3-month period. No significant differences in the primary outcome measure (mental component summary score from the SF-12v2) by group or time were noted at 3 months; however, significant differences were evident for HHI-factor 2 (P=.01), with higher hope scores in the treatment group than in the control group. General estimating equations showed no statistically significant group differences in terms of mental component summary score at all time points. Attrition and the fact that not all carers in the treatment group used MT4C may explain the absence of statistically significant results for the main outcome variable., Conclusions: Despite no significant differences between groups in terms of the primary outcome variable (mental component score), the significant differences in terms of one of the hope factors suggest that MT4C had a positive influence on the lives of participants., Trial Registration: ClinicalTrials.gov NCT02428387; https://clinicaltrials.gov/ct2/show/NCT02428387 (Archived by Webcite at http://www.webcitation.org/708oFCR8h)., (©Wendy Duggleby, Jenny Ploeg, Carrie McAiney, Shelley Peacock, Kathryn Fisher, Sunita Ghosh, Maureen Markle-Reid, Jennifer Swindle, Allison Williams, Jean AC Triscott, Dorothy Forbes, Kathya Jovel Ruiz. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 29.06.2018.)

Introduction: People are living longer; however, they are not necessarily experiencing good health and well-being as they age. Many older adults live with multiple chronic conditions (MCC), and complex health issues, which adversely affect their day-to-day functioning and overall quality of life. As a result, they frequently rely on the support of friend and/or family caregivers. Caregivers of older adults with MCC often face challenges to their own well-being and also require support. Currently, not enough is known about the health and social care needs of older adults with MCC and the needs of their caregivers or how best to identify and meet these needs. This study will examine and synthesise the literature on the needs of older adults with MCC and those of their caregivers, and identify gaps in evidence and directions for further research., Methods and Analysis: We will conduct a scoping review of the peer-reviewed and grey literature using the updated Arksey and O'Malley framework. The literature will be identified using a multidatabase and grey literature search strategy developed by a health sciences librarian. Papers, reports and other materials addressing the health and social care needs of older adults and their friend/family caregivers will be included. Search results will be screened, independently, by two reviewers, and data will be abstracted from included literature and charted in duplicate., Ethics and Dissemination: This scoping review does not require ethics approval. We anticipate that study findings will inform novel strategies for identifying and ascertaining the health and social care needs of older adults living with MCC and those of their caregivers. Working with knowledge-user members of our team, we will prepare materials and presentations to disseminate findings to relevant stakeholder and end-user groups at local, national and international levels. We will also publish our findings in a peer-reviewed journal., Competing Interests: Competing interests: None declared., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

Background: Family carers of older persons with Alzheimer's' disease and related dementia (ADRD) and multiple chronic conditions (MCC) experience significant, complex, and distressing transitions such as changes to their environment, roles and relationships, physical health, and mental health. An online intervention (My Tools 4 Care) was developed for family carers of persons with ADRD and MCC living at home, with the aim of supporting these carers through transitions and increasing their self-efficacy, hope, and health related quality of life (HRQoL). This study will evaluate My Tools 4 Care (MT4C) by asking the following research questions: 1. Does use of MT4C result in a 3 month (immediately post intervention) and 6-month (3 months after intervention) increase in HRQoL, self-efficacy, and hope, in carers of persons with ADRD and MCC compared to an educational control group? 2. Does use of MT4C help carers of community-dwelling older adults with ADRD and MCC deal with significant changes they experience as carers? and 3. Are the effects/benefits of the MT4C intervention achieved at no additional cost compared to an educational control group?, Methods/design: Using a pragmatic mixed methods randomized controlled trial design, 180 family carers of community dwelling older persons (65 years of age and older) with ADRD and MCC will participate in the study. Data will be collected from the intervention and an educational control group at four time points: baseline, 1 month, 3 and 6 months. We expect to find that family carers using MT4C will show greater improvement in hope, self-efficacy and HRQoL, at no additional cost from a societal perspective, compared to those in the educational control group. General estimating equations will be used to determine differences between groups and over time., Discussion: Data collection began in Ontario and Alberta Canada in June 2015 and is expected to be completed in June 2017. The results will inform policy and practice as MT4C can be easily revised for local contexts and is scalable in terms of posting on websites such as those hosted by the Alzheimer Society., Trial Registration: ClinicalTrials.gov Identifier: NCT02428387.

Background: Most adults with chronic conditions live at home and rely on informal caregivers to provide support. Caregiving can result in negative impacts such as poor mental and physical health. eHealth interventions may offer effective and accessible ways to provide education and support to informal caregivers. However, we know little about the impact of Web-based interventions for informal caregivers of community-dwelling adults with chronic conditions., Objective: The purpose of this rapid evidence review was to assess the impact of Web-based interventions on mental health, general caregiving outcomes, and general health for informal caregivers of persons with chronic conditions living in the community., Methods: A rapid evidence review of the current literature was employed to address the study purpose. EMBASE, MEDLINE, PsychInfo, CINAHL, Cochrane, and Ageline were searched covering all studies published from January 1995 to July 2016. Papers were included if they (1) included a Web-based modality to deliver an intervention; (2) included informal, unpaid adult caregivers of community-living adults with a chronic condition; (3) were either a randomized controlled trial (RCT) or controlled clinical trial (CCT); and (4) reported on any caregiver outcome as a result of use or exposure to the intervention., Results: A total of 20 papers (17 studies) were included in this review. Study findings were mixed with both statistically significant and nonsignificant findings on various caregiver outcomes. Of the 17 included studies, 10 had at least one significant outcome. The most commonly assessed outcome was mental health, which included depressive symptoms, stress or distress, and anxiety. Twelve papers examined the impact of interventions on the outcome of depressive symptoms; 4 found a significant decrease in depressive symptoms. Eight studies examined the outcome of stress or distress; 4 of these found a significant reduction in stress or distress as a result of the intervention. Three studies examined the outcome of anxiety; 2 of these found significant reductions in anxiety. Other significant results of the interventions were seen in the outcomes of caregiver gain (ie, positive aspects of caregiving), knowledge, bonding, reduction of anger-hostility, and negative mood. Based on this review, it is not possible to determine which interventions were most effective since studies differed in their design, sample, and intervention. Study results suggest that Web-based interventions may result in reduced depressive symptoms, anxiety, and stress or distress among informal caregivers of adults with chronic conditions in the community., Conclusions: This is the first review assessing the impact of Web-based technologies on mental health, general caregiving outcomes, and general health for caregivers of adults with chronic conditions living in the community. Further rigorous research is needed that includes adequately powered studies examining the critical components of the intervention and the dosage needed to have an effect., (©Jenny Ploeg, Maureen Markle-Reid, Ruta Valaitis, Carrie McAiney, Wendy Duggleby, Amy Bartholomew, Diana Sherifali. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 28.07.2017.)

There is a paucity of research exploring how spouses to older adults with multiple chronic conditions make meaning of their caregiving experience. For this study, we asked: What is the experience of spousal caregivers to persons with multiple chronic conditions? We applied Thorne's interpretive description approach, interviewing 18 spouses who provided a rich description of their caregiving experience; interviews were transcribed verbatim and thematically analysed. Themes were categorized according to challenges encountered, rewards gleaned, and sustaining strategies employed by participants in caregiving to their spouse with multiple chronic conditions. Unique findings relate to the challenges inherent in decision-making within the context of multiple chronic conditions. This article begins to address the gap in the literature regarding the caregiving experience within the context of multiple chronic conditions.

Background: Many community-based self-management programs have been developed for older adults with type-2 diabetes mellitus (T2DM), bolstered by evidence from randomized controlled trials (RCTs) that T2DM can be prevented and managed through lifestyle modifications. However, the evidence for their effectiveness is contradictory and weakened by reliance on single-group designs and/or small samples. Additionally, older adults with multiple chronic conditions (MCC) are often excluded because of recruiting and retention challenges. This paper presents a protocol for a two-armed, multisite, pragmatic, mixed-methods RCT examining the effectiveness and implementation of the Aging, Community and Health Research Unit-Community Partnership Program (ACHRU-CPP), a new 6-month interprofessional, nurse-led program to promote self-management in older adults (aged 65 years or older) with T2DM and MCC and support their caregivers (including family and friends)., Methods/design: The study will enroll 160 participants in two Canadian provinces, Ontario and Alberta. Participants will be randomly assigned to the control (usual care) or program study arm. The program will be delivered by registered nurses (RNs) and registered dietitians (RDs) from participating diabetes education centers (Ontario) or primary care networks (Alberta) and program coordinators from partnering community-based organizations. The 6-month program includes three in-home visits, monthly group sessions, monthly team meetings for providers, and nurse-led care coordination. The primary outcome is the change in physical functioning as measured by the Physical Component Summary (PCS-12) score from the short form-12v2 health survey (SF-12). Secondary client outcomes include changes in mental functioning, depressive symptoms, anxiety, and self-efficacy. Caregiver outcomes include health-related quality of life and depressive symptoms. The study includes a comparison of health care service costs for the intervention and control groups, and a subgroup analysis to determine which clients benefit the most from the program. Descriptive and qualitative data will be collected to examine implementation of the program and effects on interprofessional/team collaboration., Discussion: This study will provide evidence of the effectiveness of a community-based self-management program for a complex target population. By studying both implementation and effectiveness, we hope to improve the uptake of the program within the existing community-based structures, and reduce the research-to-practice gap., Trial Registration: ClinicalTrials.gov, Identifier: NCT02158741 . Registered on 3 June 2014.

Background: The prevalence of multiple chronic conditions (MCC) among older persons is increasing worldwide and is associated with poor health status and high rates of healthcare utilization and costs. Current health and social services are not addressing the complex needs of this group or their family caregivers. A better understanding of the experience of MCC from multiple perspectives is needed to improve the approach to care for this vulnerable group. However, the experience of MCC has not been explored with a broad sample of community-living older adults, family caregivers and healthcare providers. The purpose of this study was to explore the experience of managing MCC in the community from the perspectives of older adults with MCC, family caregivers and healthcare providers working in a variety of settings., Methods: Using Thorne's interpretive description approach, semi-structured interviews (n = 130) were conducted in two Canadian provinces with 41 community-living older adults (aged 65 years and older) with three or more chronic conditions, 47 family caregivers (aged 18 years and older), and 42 healthcare providers working in various community settings. Healthcare providers represented various disciplines and settings. Interview transcripts were analyzed using Thorne's interpretive description approach., Results: Participants described the experience of managing MCC as: (a) overwhelming, draining and complicated, (b) organizing pills and appointments, (c) being split into pieces, (d) doing what the doctor says, (e) relying on family and friends, and (f) having difficulty getting outside help. These themes resonated with the emotional impact of MCC for all three groups of participants and the heavy reliance on family caregivers to support care in the home., Conclusions: The experience of managing MCC in the community was one of high complexity, where there was a large gap between the needs of older adults and caregivers and the ability of health and social care systems to meet those needs. Healthcare for MCC was experienced as piecemeal and fragmented with little focus on the person and family as a whole. These findings provide a foundation for the design of care processes to more optimally address the needs-service gap that is integral to the experience of managing MCC.

Background: Alzheimer's disease and related disorders (ADRD) are some of the leading causes of morbidity in developed nations. Unpaid family caregivers are primarily responsible for providing the care and support needed by persons with ADRD. In the process of caring for their loved ones with ADRD, caregivers often have to deal with multiple challenges, including their own deteriorating well-being and overall quality-of-life (QoL). A recent systematic review showed that very little research has been undertaken to study the relationship between AD caregiver QoL and the level or quality of care that caregivers provide to their loved ones. In this study, we investigate the relationships between caregiver well-being and the care provided to persons with ADRD., Methods: We used 12-month follow-up data from the Philadelphia site (n = 125) of the National Institutes of Health (NIH) multi-site study, Resources for Enhancing Alzheimer's Caregiver Health (REACH I) to examine the relationship between caregiver well-being and the level or quality of care provided while adjusting for important covariates (e.g., age, income, and years since caregiving). Caregivers who participated in REACH I had to be at least 21 years of age and they had to be providing at least 4 h of care per day for 6 months or more to a live-in loved one with ADRD. Linear regression analysis was used to examine the relationships between well-being and the level or quality of care provided to persons with ADRD., Results: Of the 255 caregivers who participated in the REACH I study, 125 (49.0 %) remained after 12 months of follow-up. Comparisons of participants at the 12-month follow-up and participants who were lost to follow-up showed that these two sets of participants were not statistically significantly different on any of the variables examined in this study. Linear regression analysis showed that there was no statistically significant association between caregiver well-being and level or quality of care provided., Conclusions: Further research is required to investigate the factors associated with level and quality of care provided to persons with ADRD, and whether caregiver well-being (or QoL in general) is a contributor.

Background: The majority of care for older adults with multiple chronic conditions (MCC) is provided by family (including friends) caregivers. Although caregivers have reported positive benefits to caregiving they also experience decreases in their physical and mental health. As there is a critical need for supportive interventions for this population, it is important to know what influences the health of family caregivers of persons with MCC. This research examined relationships among the changes from baseline to 6 months in health related quality of life (SF12v2) of family caregivers caring for older adults with multiple chronic conditions and the following factors: a) demographic variables, b) gender identity [Bem Sex Role Inventory (BSRI)] c) changes in general self-efficacy [General Self Efficacy Scale (GSES) (baseline to 6 months) and d)) changes in caregiver burden [Zarit Burden Inventory (ZBI)] baseline to 6 months. Specific hypothesis were based on a conceptual framework generated from a literature review., Methods: This is a secondary analysis of a study of 194 family caregivers who were recruited from two Canadian provinces Alberta and Ontario. Data were collected in-person, by telephone, by Skype or by mail at two time periods spaced 6 months apart. The sample size for this secondary analysis was n = 185, as 9 participants had dropped out of the study at 6 months. Changes in the scores between the two time periods were calculated for SF12v2 physical component score (PCS) and mental component score (MCS) and the other main variables. Generalized Linear Modeling was then used to determine factors associated with changes in HRQL., Results: Participants who had significantly positive increases in their MCS (baseline to 6 months) reported lower burden (ZBI, p < 0.001), and higher general self-efficacy (GSES, p < 0.001) and Masculine BSRI (p = 0.025). There were no significant associations among variables and changes in PCS (baseline to 6 months)., Conclusions: Our findings suggest that a masculine gender identity (which incorporates assertive and instrumental approaches to caregiving), and confidence in the ability to deal with difficult situations was positively related to improvement in mental health for caregivers of persons with MCC. Decreases in perceptions of burden in this populations was also associated with improvements in mental health. Further research is needed to explore ways to support caregivers of older persons with multiple chronic conditions living at home.

Background: A little-studied issue in the provision of care at home by informal caregivers is the increase in older adult patients with chronic illness, and more specifically, multiple chronic conditions (MCC). We know little about the caregiving experience for this population, particularly as it is affected by social location, which refers to either a group's or individual's place/location in society at a given time, based on their intersecting demographics (age, gender, education, race, immigration status, geography, etc.). We have yet to fully comprehend the combined influence of these intersecting axes on caregivers' health and wellbeing, and attempt to do this by using an intersectionality approach in answering the following research question: How does social location influence the experience of family caregivers of older adults with MCC?, Methods: The data presented herein is a thematic analysis of a qualitative sub-set of a large two-province study conducted using a repeated-measures embedded mixed method design. A survey sub-set of 20 survey participants per province (n = 40 total) were invited to participate in a semi-structured interview. In the first stage of data analysis, Charmaz's (2006) Constructivist Grounded Theory Method (CGTM) was used to develop initial codes, focused codes, categories and descriptive themes. In the second and the third stages of analysis, intersectionality was used to develop final analytical themes., Results: The following four themes describe the overall study findings: (1) Caregiving Trajectory, where three caregiving phases were identified; (2) Work, Family, and Caregiving, where the impact of caregiving was discussed on other areas of caregivers' lives; (3) Personal and Structural Determinants of Caregiving, where caregiving sustainability and coping were deliberated, and; (4) Finding Meaning/Self in Caregiving, where meaning-making was highlighted., Conclusions: The intersectionality approach presented a number of axes of diversity as comparatively more important than others; these included gender, age, education, employment status, ethnicity, and degree of social connectedness. This can inform caregiver policy and programs to sustain health and well-being.

Older adults in Canada who have multiple illnesses and are awaiting placement in long-term care are greatly impacted by alternate level of care (ALC). The purpose of this narrative study was to record the experiences of hospitalized older adults and their family caregivers after the patient is designated as requiring ALC. The researchers conducted 21 interviews with 5 older patients and 4 of their family caregivers. The interviews were transformed into stories summarizing the participants' experiences and analyzed for common themes. An overall finding was that uncertainty is integral to the experience of ALC as expressed under 3 themes: I never thought I'd end up like this, I don't know, and waiting. To improve the ALC experience, comprehensive strategies should be developed at the individual, organizational, and structural level to better manage uncertainty while seeking to reduce the occurrence of ALC among older patients.

Background: Primary informal caregivers provide a substantial amount of the care and support for persons with Alzheimer's disease (AD). This review aims to investigate the association between the quality of life (QoL) of primary informal AD caregivers and the level of care that these caregivers provide to persons with AD., Methods: Studies involving primary informal caregivers of persons with AD will be included in the review. These studies will be required to focus on the care that caregivers provide for their loved ones. The primary outcome is level or quality of care. The main independent variable is caregiver QoL. In addition to QoL, we will include studies that examine other independent variables that are considered to be important components of QoL. These variables include social support, caregiver burden, caregiver wellbeing, and caregiver depression.We will search Medline-OVID, Embase-OVID, Cochrane Central-OVID, and PsycINFO-OVID from inception onwards. Two raters will independently screen each article using pre-established inclusion/exclusion criteria. Screening will take place at two levels: title and abstract, and full text. Conflicts will be resolved by discussion or by a third reviewer. We will assess the risk of bias of each included study using standardized quality assessment tools for specific types of designs. A narrative synthesis method will be used to describe our findings. Quantitative summary and meta-analysis will be conducted if appropriate. We will employ GRADE to evaluate the strength of the evidence in this review., Discussion: Results of this systematic review will show whether and how caregiver QoL is related to the level of care that caregivers provide to persons with AD.

Background: Due to the abrupt onset of a stroke, caregivers are often unprepared for the role, have extensive needs and are at risk for negative outcomes. Interventions facilitating development of coping and problem solving skills are shown to decrease the negative effects of caregiving. The Family Informal Caregiver Stroke Self-Management (FICSS) program was developed to address the unmet needs of family caregivers of stroke survivors., Objective: To evaluate the content, format and resource materials of the FICSS program with 10-12 family caregivers of stroke survivors within Central South Ontario., Methods: The FICSS program is a four-module education and support series of facilitated small group discussions. Topics included: balancing changing roles, managing behaviour changes, sexuality/intimacy, and community linkages. Each module was evaluated weekly and by focus group one month after the program., Results: Eleven family caregivers of stroke survivors with three years of mean caregiving experience participated. Caregivers valued the opportunity to share experiences and learn from others who understood what they were going through. Recommendations were made to improve the program topic areas, content and flow., Conclusions: The pilot evaluation of the program validated the content of the FICSS program and indicated recommendations for improvement.

Aim: The purpose of this study was to evaluate the patient-centredness of community palliative care from the perspective of family members who were responsible for the care of a terminally ill family member., Method: A survey questionnaire was mailed to families of a deceased family member who had been designated as palliative and had received formal home care services in the central west region of the Province of Ontario, Canada. Respondents reported on service use in the last four weeks of life; the Client-Centred Care Questionnaire (CCCQ) was used to evaluate the extent to which care was patient-centred. The accessibility instrument was used to assess respondent perception of access to care. Descriptive and inferential statistics were used for data analyses., Results: Of the 243 potential participants, 111 (46.0%) family caregivers completed the survey questionnaire. On average, respondents reported that they used five different services during the last four weeks of the care recipient's life. When asked about programme accessibility, care was also perceived as largely accessible and responsive to patients' changing needs (M = 4.3 (SD = 1.04)]. Most respondents also reported that they knew what service provider to contact if they experienced any problems concerning the care of their family member. However, this service provider was not consistent among respondents. Most respondents were relatively positive about the patient-centred care they received. There were however considerable differences between some items on the CCCQ. Respondents tended to provide more negative ratings concerning practical arrangement and the organization of care: who was coming, how often and when. They also rated more negatively the observation that service providers were quick to say something was possible when it was not the case. Bivariate analyses found no significant differences in CCCQ or accessibility domain scores by caregiver age, care recipient age, income, education and caregiver sex., Conclusions: Patient-centred care represents a service attribute that should be recognized as an important outcome to assess the quality of service delivery. This study demonstrates how this attribute can be evaluated in the provision of care., (© 2011 The Authors. Scandinavian Journal of Caring Sciences © 2011 Nordic College of Caring Science.)

ABSTRACTThe article examines where older adults seek help in caring for a parent with dementia and the factors associated with their identification of community health and support services as sources of assistance. The authors conducted telephone interviews, using random digit dialing, of 1,152 adults aged 50 and over in the city of Hamilton. Respondents received a vignette that raised issues related to parental dementia. In identifying support sources, over 37 per cent of respondents identified their physician, 33 per cent identified informal support such as family and neighbors, and 31 per cent identified home health services. Only 18 per cent identified community support services. Female participants having higher levels of education were more likely to identify their physician as a source of support. Knowing where to find information about community support services was associated with an increased likelihood of mentioning physicians and home health services as sources of assistance.

Caregivers of persons with dementia encounter particular challenges in their roles and often experience unmet needs for information and emotional support. This article describes a qualitative descriptive study designed to explore the intervention of telephone support for such caregivers. Data were collected from both caregivers and telephone support providers. Results revealed that telephone support met four specific needs of dementia caregivers: the need for (a) information and education, (b) referral and/or assistance required to navigate through the system, (c) emotional support, and (d) caregiver support that is convenient and hassle free. Caregivers' main experience with the intervention was the sense of companionship, whereas service providers experienced mixed feelings of helplessness and an opportunity to empower caregivers.

The purposes of this study were: to identify the perceived support needs of family caregivers of persons living with chronic illness (physical or cognitive) and receiving home-care services, and to describe the types of telephone services that would meet the expressed needs of caregivers. The qualitative design used semi-structured interviews. A total of 34 caregivers (mean age 62 years) participated in the study. The care recipients (mean age 78 years) were primarily the husband/wife or parent of the caregiver. The most commonly expressed caregiver needs were: a social life, instrumental support (e.g., respite, assistance with physical care, financial compensation), informational support, and emotional support. Most caregivers said they would use a telephone support service provided by a professional (71%) or a fellow caregiver (59%) if available. The results of this study support a pilot study and evaluation of a telephone support service for family caregivers.

In this study the factorial validity and the reliability of DSM-IV related ADHD symptom ratings made by care professionals working in residential treatment centres were determined in a sample of 412 residential youngsters. Three concurrent models of the ADHD disorder were investigated, a one-factor model comprising all 18 symptoms, a two-factor model with the Inattention and Hyperactivity/Impulsivity symptoms, respectively, combined and a three-factor model comprising Inattention, Hyperactivity, and Impulsivity symptoms, respectively. An analysis of the covariance structure shows acceptable fits for both the two- and the three-factor models, slightly favouring the three-factor model. The internal consistencies, the test-retest reliabilities, and the inter-rater reliabilities turned out to be good to excellent for all scales based on each of the three concurrent models.