Moving forward with dementia: an explorative cross-country qualitative study into post-diagnostic experiences.

OBJECTIVES: This explorative cross-country qualitative study aims to describe experiences of receiving a dementia diagnosis and experiences of support following a diagnosis in Australia, Canada, the Netherlands and Poland. METHOD: Qualitative study using projective techniques during online focus groups, online and telephone interviews with people with dementia and caregivers. RESULTS: Twenty-three people with dementia and 53 caregivers participated. Qualitative content analysis revealed five themes; (1) 'Coming to terms with dementia' helped people deal with complex emotions to move forward. (3) 'The social network as a source of support' and (4) 'The challenges and realities of formal support' and impacted 'Coming to terms with dementia'. (2) 'Navigating life with dementia as a caregiver' highlights caregiver burden and was impacted by (4) 'The challenges and realities of formal support'. People were (5) 'Self-caring and preparing for tomorrow' as they focused on maintaining current health whilst planning the future. Despite differences in healthcare and post-diagnostic support systems, there were more similarities across countries than differences. CONCLUSION: Across countries, formal support and support from friends and family are crucial for people with dementia and caregivers to come to terms with dementia and maintain carer wellbeing to ultimately live well with dementia.

Experiences of people with dementia and informal caregivers with post-diagnostic support: Data from the international COGNISANCE study.

OBJECTIVES: The study aims to describe people with dementia and informal caregivers' respective experiences of support after diagnosis and compares these experiences. Additionally, we determine how people with dementia and informal caregivers who are satisfied with support differ from those dissatisfied. METHODS: A cross-sectional survey study in Australia, Canada, the Netherlands, Poland, and United Kingdom was carried out to examine people with dementia and informal caregivers experience with support (satisfaction with information, access to care, health literacy, and confidence in ability to live well with dementia). The separate surveys contained closed questions. Analysis consisted of descriptive statistics and Chi-square tests. RESULTS: Ninety people with dementia and 300 informal caregivers participated, and 69% of people with dementia and 67% of informal caregivers said support after diagnosis helped them deal more efficiently with their concerns. Up to one-third of people with dementia and informal caregivers were dissatisfied with information about management, prognosis, and strategies for living positively. Few people with dementia (22%) and informal caregivers (35%) received a care plan. People with dementia were more often satisfied with information, had more often confidence in their ability to live well with dementia, and were less often satisfied with access to care compared to informal caregivers. Informal caregivers who were satisfied with support were more satisfied with information and access to care compared to informal caregivers not satisfied with support. CONCLUSIONS: Experience of dementia support can be improved and people with dementia and informal caregiver differ in their experiences of support.

How do individual, social, environmental, and resilience factors shape self-reported health among community-dwelling older adults: a qualitative case study.

BACKGROUND: While older adults are living longer, they often face health challenges, including living with multiple chronic conditions. How older adults respond and adapt to the challenges of multimorbidity to maintain health and wellness is of increasing research interest. Self-reported health, emerging as an important measure of health status, has broad clinical and research applications, and has been described as a predictor of future morbidity and mortality. However, there is limited understanding of how individual, social, and environmental factors, including those related to multimorbidity resilience, influence self-reported health among community-dwelling older adults (≥ 65 years). METHODS: Informed by the Lifecourse Model of Multimorbidity Resilience, this explanatory case study research explored older adults' perceptions of how these factors influence self-reported health. Data were generated through semi-structured telephone interviews with community-dwelling older adults. RESULTS: Fifteen older adults participated in this study. Four key themes, specific to how these older adults describe individual, social, environmental, and multimorbidity resilience factors as shaping their self-reported health, were identified: 1) health is a responsibility - "What I have to do"; 2) health is doing what you want to do despite health-related limitations - "I do what I want to do"; 3) the application and activation of personal strengths - "The way you think", and; 4) through comparison and learning from others - "Looking around at other people". These themes, while distinct, were found to be highly interconnected with recurring concepts such as independence, control, and psychological health and well-being, demonstrating the nuance and complexity of self-reported health. CONCLUSIONS: Findings from this study advance understanding of the factors that influence assessments of health among community-dwelling older adults. Self-reported health remains a highly predictive measure of future morbidity and mortality in this population, however, there is a need for future research to contribute additional understanding in order to shape policy and practice.

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

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

Nurse practitioner/physician collaborative models of care: a scoping review protocol.

BACKGROUND: Before the COVID-19 pandemic, many long-term care (LTC) homes experienced difficulties in providing residents with access to primary care, typically delivered by community-based family physicians or nurse practitioners (NPs). During the pandemic, legislative changes in Ontario, Canada enabled NPs to act in the role of Medical Directors thereby empowering NPs to work to their full scope of practice. Emerging from this new context, it remains unclear how NPs and physicians will best work together as primary care providers. NP/physician collaborative models appear key to achieving optimal resident outcomes. This scoping review aims to map available evidence on existing collaborative models of care between NPs and physicians within LTC homes. METHODS: The review will be guided by the research question, "What are the structures, processes and outcomes of collaborative models of care involving NPs and Physicians in LTC homes?" This scoping review will be conducted according to the methods framework for scoping reviews outlined by Arksey and O'Malley and refined by Levac et al., Colquhoun et al., and Daudt et al., as well as the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) Statement. Electronic databases (MEDLINE, Embase + Embase Classic, APA PsycInfo, Cochrane Central Register of Controlled Trials, AMED, CINAHL, Ageline, and Scopus), grey literature, and reference lists of included articles will be searched. English language studies that describe NP and physician collaborative models within the LTC setting will be included. DISCUSSION: This scoping review will consolidate what is known about existing NP/physician collaborative models of care in LTC homes. Results will be used to inform the development of a collaborative practice framework for long-term care clinical leadership.

Impact of Integrated Care Pathways Within the Framework of Collaborative Care on Older Adults With Anxiety, Depression, or Mild Cognitive Impairment.

OBJECTIVES: To evaluate the impact of an Integrated Care Pathway (ICP) within a collaborative care framework for anxiety, depression and mild cognitive impairment (MCI) on clinical outcomes, quality of life, and time to treatment initiation. DESIGN: Prospective Cohort study. SETTING: Primary care practices in Toronto and Hamilton, Ontario, Canada. PARTICIPANTS: Patients of participating primary care practices born in the years 1950 to 1958. SAMPLE SIZE: Target 150 participants, 75 in ICP and 75 in Treatment-As-Usual (TAU) arm. INTERVENTION: ICP within a collaborative care framework and TAU. METHODS AND RESULTS: One hundred forty-five participants with anxiety, depression or MCI, from five primary care practices were enrolled: 69 were managed as per ICP and 76 as per TAU. All underwent outcome assessments at 6, 12, 18, and 24 months. Compared to TAU, ICP participants had a significantly higher rate of improvement in depression symptoms (ß = -0.620, F (1, 256) = 4.10, p = 0.044), anxiety symptoms (ß = -0.593, F (1, 223) = 4.00, p = 0.047), and quality of life (ß = 1.351, F(1, 358) = 6.58, p = 0.011). The ICP group had also a significantly higher "hazard" of treatment initiation (HR = 3.557; 95% CI: [2.228, 5.678]; p < 0.001) after controlling for age, gender and baseline severity of symptoms compared to TAU group. CONCLUSIONS: Use of an ICP within a collaborative care framework in primary care settings for anxiety, depression and MCI among older adults, results in faster reductions in clinical symptoms and improvement in quality of life compared to usual care, as well as faster access to recommended treatments.

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

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

Self-reported health and the well-being paradox among community-dwelling older adults: a cross-sectional study using baseline data from the Canadian Longitudinal Study on Aging (CLSA).

BACKGROUND: Self-reported health is a widely used epidemiologic measure, however, the factors that predict self-reported health among community-dwelling older adults (≥65 years), especially those with multimorbidity (≥2 chronic conditions), are poorly understood. Further, it is not known why some older adults self-report their health positively despite the presence of high levels of multimorbidity, a phenomenon known as the well-being paradox. The objectives of this study were to: 1) examine the factors that moderate or mediate the relationship between multimorbidity and self-reported health; 2) identify the factors that predict high self-reported health; and 3) determine whether these same factors predict high self-reported health among those with high levels of multimorbidity to better understand the well-being paradox. METHODS: A cross-sectional analysis of baseline data from the Canadian Longitudinal Study on Aging was completed (n = 21,503). Bivariate stratified analyses were used to explore whether each factor moderated or mediated the relationship between multimorbidity and self-reported health. Logistic regression was used to determine the factors that predict high self-reported health in the general population of community-dwelling older adults and those displaying the well-being paradox. RESULTS: None of the factors explored in this study moderated or mediated the relationship between multimorbidity and self-reported health, yet all were independently associated with self-reported health. The 'top five' factors predicting high self-reported health in the general older adult population were: lower level of multimorbidity (odds ratio [OR] 0.75, 95% confidence interval [CI] 0.74-0.76), female sex (OR 0.62, CI 0.57-0.68), higher Life Space Index score (OR 1.01, CI 1.01-1.01), higher functional resilience (OR 1.16, CI 1.14-1.19), and higher psychological resilience (OR 1.26, CI 1.23-1.29). These same 'top five' factors predicted high self-reported health among the subset of this population with the well-being paradox. CONCLUSIONS: The factors that predict high self-reported health in the general population of older adults are the same for the subset of this population with the well-being paradox. A number of these factors are potentially modifiable and can be the target of future interventions to improve the self-reported health of this population.

Building a new life: a qualitative study of how family carers deal with significant changes.

BACKGROUND: Family carers of persons living with dementia who are residing in long term care (LTC), often experience significant changes in their roles and relationships which affects mental and physical health. Research has focused on describing the carers' experience, but not on how they deal with these changes or their perceptions of support needs. The purpose of this study was to explore how family carers of persons living with dementia residing in LTC deal with significant changes and to understand how best to support these carers. METHODS: Eight face-to-face audio-recorded focus group interviews were conducted with 45 participants from September 2019 to January 2020, as part of a larger study aimed at guiding the adaptation of an online toolkit to support family carers of persons living with dementia residing in LTC. Applied thematic analysis was used to analyze the focus group data. FINDINGS/RESULTS: Carers dealt with the significant changes they experienced through the process of "building a new life" consisting of two sub-processes: a) building new relationships (with their family member, LTC staff and others outside of LTC), and b) finding space for themselves (sharing of care and finding balance). Understanding dementia, support from others (staff, family and friends), connecting with resources, and being included in care decisions helped carers build a new life. CONCLUSION: The process of building a new life describes the ways that family carers deal with the life-altering changes they experienced when a family member is admitted to LTC. Carers may be supported in building their new life, by providing them with information about dementia and how to relate to staff and their family member living with dementia. The quality of care being provided and the LTC environment may also play an important role in how carers deal with the significant changes they experience.

Service process factors affecting patients' and clinicians' experiences on rapid teleconsultation implementation in out-patient neurology services during COVID-19 pandemic: a scoping review.

BACKGROUND: The adoption of teleconsultation for outpatient neurology services was limited until the onset of the COVID-19 pandemic which forced many outpatient neurology services to rapidly switch to virtual models. However, it remains unclear how this change has impacted patients' and clinicians' perceptions of service quality. The purpose of this scoping review is to identify process factors that influence patients' and clinicians' experiences of outpatient teleconsultation services during COVID-19. METHODS: Arksey and O'Malley scoping review framework was used to search PubMed, Scopus, CINAHL, and PsycInfo for original peer-reviewed research studies that examined the experiences of synchronous teleconsultation between a clinician and patient in a home-setting since the World Health Organization announced the COVID-19 global pandemic. The service quality model SERVQUAL was used to conduct a deductive thematic analysis to identify the key factors that impacted the patients' and clinicians' perception of teleconsultation services. RESULTS: A total of nineteen studies published between January 1, 2020, and April 17, 2021, were identified. The most common service process factors affecting the patients' and clinicians' experiences of teleconsultation were technical issues, addressing logistical needs, communication, ability to perform clinical activities, appropriate triage, and administrative support. CONCLUSIONS: Our findings identified six key service process factors affecting the patients' and clinicians' teleconsultation experiences in outpatient neurology services. The need for improvement of triage process and standardizing administrative virtual care pathway are identified as important steps to improve patients and clinicians' teleconsultation experiences compared to pre-COVID era. More research is needed to assess outpatient neurology teleconsultation service quality from patients' and clinicians' perspectives.

Improving dementia care: insights from audit and feedback in interdisciplinary primary care sites.

BACKGROUND: Many primary care sites have implemented models to improve detection, diagnosis, and management of dementia, as per Canadian guidelines. The aim of this study is to describe the responses of clinicians, managers, and staff of sites that have implemented these models when presented with audit results, their insights on the factors that explain their results, their proposed solutions for improvement and how these align to one another. METHODS: One audit and feedback cycle was carried out in eight purposefully sampled sites in Ontario, Canada, that had previously implemented dementia care models. Audit consisted of a) chart review to assess quality of dementia care indicators, b) questionnaire to assess the physicians' knowledge, attitudes and practice toward dementia care, and c) semi-structured interviews to understand barriers and facilitators to implementing these models. Feedback was given to clinicians, managers, and staff in the form of graphic and oral presentations, followed by eight focus groups (one per site). Discussions revolved around: what audit results elicited more discussion from the participants, 2) their insights on the factors that explain their audit results, and 3) solutions they propose to improve dementia care. Deductive content and inductive thematic analyses, grounded in causal pathways models' theory was performed. FINDINGS: The audit and feedback process allowed the 63 participants to discuss many audit results and share their insights on a) organizational factors (lack of human resources, the importance of organized links with community services, clear roles and support from external memory clinics) and b) clinician factors (perceived competency practice and attitudes on dementia care), that could explain their audit results. Participants also provided solutions to improve dementia care in primary care (financial incentives, having clear pathways, adding tools to improve chart documentation, establish training on dementia care, and the possibility of benchmarking with other institutions). Proposed solutions were well aligned with their insights and further nuanced according to contextual details. CONCLUSIONS: This study provides valuable information on solutions proposed by primary care clinicians, managers, and staff to improve dementia care in primary care. The solutions are grounded in clinical experience and will inform ongoing and future dementia strategies.

Namaste care delivered by caregivers of community-dwelling older adults with moderate to advanced dementia: A mixed methods study protocol.

AIM: The aim of this study is to adapt and evaluate the feasibility, acceptability, and preliminary effectiveness of a multisensory, psychosocial intervention called Namaste Care delivered by family and friend caregivers of community-dwelling older adults with moderate to advanced dementia. DESIGN: A multiphase mixed methods design combining quantitative and qualitative methods will be used. METHODS: This study is composed of two phases. Phase 1 is guided by a qualitative description approach. Small group workshop sessions with 8-10 caregivers of community-dwelling older adults with moderate to advanced dementia will be conducted to adapt Namaste Care. In Phase 2, 10-20 caregivers will receive training and implement the adapted Namaste Care approach at home. A one group, before-after design will be used to evaluate feasibility, acceptability and preliminary effectiveness of the approach over 3 months. Feasibility will be assessed using quantitative measures and acceptability will be explored using qualitative methods. Outcomes to evaluate preliminary effectiveness include quality of life (QoL), positive perceptions of caregiving, self-efficacy, and caregiver burden. DISCUSSION: There are currently few skill-building interventions that can be delivered by caregivers of people with moderate to advanced dementia at home. Caregivers should be involved in developing programs to enhance program relevance. This research will be the first to explore the feasibility of implementing the Namaste Care approach at home by caregivers. IMPACT: Study results will provide important information about the feasibility and preliminary effects of an adapted form of Namaste Care. This program has the potential to improve the QoL of caregivers and may prevent hospitalization or long-term care placement of older persons with moderate to advanced dementia. The revised Namaste Care program supports building the skills of caregivers so that their needs and the needs of older persons with dementia living at home are being addressed.

Study protocol: pragmatic randomized control trial of my tools 4 care- in care (MT4C-in care) a web-based tool for family Carers of persons with dementia residing in long term care.

BACKGROUND: When a family member resides in long term care facility (LTC), family carers continue caregiving and have been found to have decreases in mental health. The aim of My Tools 4 Care - In Care (an online intervention) is to support carers of persons living with dementia residing in LTC through transitions and increase their self-efficacy, hope, social support and mental health. This article comprises the protocol for a study to evaluate My Tools 4 Care-In Care (MT4C-In Care) by asking the following research questions: 1) Is there a 2 month (immediately post-intervention) and 4 month (2 months post-intervention) increase in mental health, general self-efficacy, social support and hope, and decrease in grief and loneliness, in carers of a person living with dementia residing in LTC using MT4C-In CARE compared to an educational control group? 2) Do carers of persons living with dementia residing in LTC perceive My Tools 4 Care- In Care helps them with the transitions they experience? METHODS: This study is a single blinded pragmatic mixed methods randomized controlled trial. Approximately 280 family carers of older persons (65 years of age and older) with dementia residing in LTC will be recruited for this study. Data will be collected at three time points: baseline, 2 month, and 4 months. Based on the feasibility study, we hypothesize that participants using MT4C-In Care will report significant increases in hope, general self-efficacy, social support and mental health quality of life, and significant decreases in grief and loneliness from baseline, as compared to an educational control group. To determine differences between groups and over time, generalized estimating equations analysis will be used. Qualitative descriptive analysis will be used to further evaluate MT4C-In Care and if it supports carers through transitions. DISCUSSION: Data collection will begin in four Canadian provinces (Alberta, Manitoba, Ontario and Saskatchewan) in February 2020 and is expected to be completed in June 2021. The results will inform policy and practice as MT4C-In Care can be revised for local contexts and posted on websites such as those hosted by the Alzheimer Society of Canada. TRIAL REGISTRATION: NCT04226872 ClinicalTrials.gov Registered 09 January 2020 Protocol Version #2 Feb 19, 2020.

Study protocol for a hospital-to-home transitional care intervention for older adults with multiple chronic conditions and depressive symptoms: a pragmatic effectiveness-implementation trial.

BACKGROUND: Older adults (> 65 years) with multiple chronic conditions (MCC) and depressive symptoms experience frequent transitions between hospital and home. Care transitions for this population are often poorly coordinated and fragmented, resulting in increased readmission rates, adverse medical events, decreased patient satisfaction and safety, and increased caregiver burden. There is a dearth of evidence on best practices in the provision of transitional care for older adults with MCC and depressive symptoms transitioning from hospital-to-home. This paper presents a protocol for a two-armed, multi-site pragmatic effectiveness-implementation trial of Community Assets Supporting Transitions (CAST), an evidence-informed nurse-led six-month intervention that supports older adults with MCC and depressive symptoms transitioning from hospital-to-home. The Collaborative Intervention Planning Framework is being used to engage patients and other key stakeholders in the implementation and evaluation of the intervention and planning for intervention scale-up to other communities. METHODS: Participants will be considered eligible if they are > 65 years, planned for discharged from hospital to the community in three Ontario locations, self-report at least two chronic conditions, and screen positive for depressive symptoms. A total of 216 eligible and consenting participants will be randomly assigned to the control (usual care) or intervention (CAST) arm. The intervention consists of tailored care delivery comprising in-home visits, telephone follow-up and system navigation support. The primary measure of effectiveness is mental health functioning of the older adult participant. Secondary outcomes include changes in physical functioning, depressive symptoms, anxiety, perceived social support, patient experience, and health and social service use and cost, from baseline to 6- and 12-months. Caregivers will be assessed for caregiver strain, depressive symptoms, anxiety, health-related quality of life, and health and social service use and costs. Descriptive and qualitative data from older adult and caregiver participants, and the nurse interventionists will be used to examine implementation of the intervention, how the intervention is adapted within each study region, and its potential for sustainability and scalability to other jurisdictions. DISCUSSION: A nurse-led transitional care strategy may provide a feasible and effective means for improving health outcomes and patient/caregiver experience and reduce service use and costs in this vulnerable population. TRIAL REGISTRATION: # NCT03157999 . Registration Date: April 4, 2017.

Family member eating assistance and food intake in long-term care: A secondary data analysis of the M3 Study.

AIM: To determine if protein and energy intake is significantly associated with a family member providing eating assistance to residents in long-term care homes as compared with staff providing this assistance, when adjusting for other covariates. BACKGROUND: Who provides eating support has the potential to improve resident food intake. Little is known about family eating assistance and if this is associated with resident food intake in long-term care. DESIGN: Cross-sectional, secondary data analysis. METHODS: Between October and January 2016, multilevel data were collected from 32 long-term care homes across four Canadian provinces. Data included 3-day weighed/observed food intake, mealtime observations, physical dining room assessments, health record review, and staff report of care needs. Residents where family provided eating assistance were compared with residents who received staff-only assistance. Regression analysis determined the association of energy and protein intake with family eating assistance versus staff assistance while adjusting for covariates. RESULTS: Of those residents who required any physical eating assistance (N = 147), 38% (N = 56) had family assistance during at least one of nine meals observed. Residents who received family assistance (N = 56) and those who did not (N = 91) were statistically different in several of their physiological eating abilities. When adjusting for covariates, family assistance was associated with significantly higher consumption of protein and energy intake. CONCLUSION: Energy and protein intake is significantly higher when family provides eating assistance. Family are encouraged to provide this direct care if it is required. IMPACT: Residents who struggle with independent eating can benefit from dedicated support during mealtimes. Findings from this study provide empirical evidence that family eating assistance is associated with improved resident food intake and provides strong justification to encourage families to be active partners in the care and well-being of their relatives. Home administrators and nursing staff should support the specialized care that families can provide at mealtimes.

Healthcare providers' experiences in supporting community-living older adults to manage multiple chronic conditions: a qualitative study.

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.

A Comparison of Users and Nonusers of a Web-Based Intervention for Carers of Older Persons With Alzheimer Disease and Related Dementias: Mixed Methods Secondary Analysis.

BACKGROUND: A self-administered Web-based intervention was developed to help carers of persons with Alzheimer disease and related dementias (ADRD) and multiple chronic conditions (MCC) deal with the significant transitions they experience. The intervention, My Tools 4 Care (MT4C), was evaluated during a pragmatic mixed methods randomized controlled trial with 199 carers. Those in the intervention group received free, password-protected access to MT4C for three months. MT4C was found to increase hope in participants at three months compared with the control group. However, in the intervention group, 22% (20/92) did not use MT4C at all during the three-month period. OBJECTIVE: This mixed methods secondary analysis aimed to (1) examine differences at three months in the outcomes of hope, self-efficacy, and health-related quality of life (HRQOL) scores in users (ie, those who used MT4C at least once during the three-month period) compared with nonusers and (2) identify reasons for nonuse. METHODS: Data from the treatment group of a pragmatic mixed methods randomized controlled trial were used. Through audiotaped telephone interviews, trained research assistants collected data on participants' hope (Herth Hope Index; HHI), self-efficacy (General Self-Efficacy Scale; GSES), and HRQOL (Short-Form 12-item health survey version 2; SF-12v2) at baseline, one month, and three months. Treatment group participants also provided feedback on MT4C through qualitative telephone interviews at one month and three months. Analysis of covariance was used to determine differences at three months, and generalized estimating equations were used to determine significant differences in HHI, GSES, and SF-12v2 between users and nonusers of MT4C from baseline to three months. Interview data were analyzed using content analysis and integrated with quantitative data at the result stage. RESULTS: Of the 101 participants at baseline, 9 (9%) withdrew from the study, leaving 92 participants at three months of which 72 (78%) used MT4C at least once; 20 (22%) participants did not use it at all. At baseline, there were no statistically significant differences in demographic characteristics and in outcome variables (HHI, GSES, and SF-12v2 mental component score and physical component score) between users and nonusers. At three months, participants who used MT4C at least once during the three-month period (users) reported higher mean GSES scores (P=.003) than nonusers. Over time, users had significantly higher GSES scores than nonusers (P=.048). Reasons for nonuse of MT4C included the following: caregiving demands, problems accessing MT4C (poor connectivity, computer literacy, and navigation of MT4C), and preferences (for paper format or face-to-face interaction). CONCLUSIONS: Web-based interventions, such as MT4C, have the potential to increase the self-efficacy of carers of persons with ADRD and MCC. Future research with MT4C should consider including educational programs for computer literacy and providing alternate ways to access MT4C in addition to Web-based access. TRIAL REGISTRATION: ClinicalTrials.gov NCT02428387; https://clinicaltrials.gov/ct2/show/NCT02428387.

Health care provider experiences in primary care memory clinics: a phenomenological study.

BACKGROUND: There is a growing need for community-based services for persons with Alzheimer's disease and related dementias (ADRD). Memory clinic (MC) teams in primary care settings have been established to provide care to people with ADRD. To consider wider adoption of these MC teams, insight is needed into the experiences of practitioners working in these models. The purpose of the current study is to explore the experiences of health care providers (HCPs) who work in primary care Memory Clinic (MC) teams to provide care to persons with Alzheimer's disease and related dementias (ADRD). METHODS: This study utilized a phenomenological methodology to explore experiences of 12 HCPs in two primary care MCs. Semi-structured interviews were completed with each HCP. Interviews were recorded and transcribed verbatim. Colaizzi's steps for analyzing phenomenological data was utilized by the authors. RESULTS: Three themes emerged from the analysis to describe HCP experiences: supporting patients and family members during ADRD diagnosis and treatment, working in a team setting, and personal and professional rewards of caring for people with ADRD and their family members. CONCLUSIONS: Findings provide insight into current practices in primary care MCs and on the motivation of HCPs working with persons with ADRD.

Impact of Internet-Based Interventions on Caregiver Mental Health: Systematic Review and Meta-Analysis.

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).

Caregiver-Focused, Web-Based Interventions: Systematic Review and Meta-Analysis (Part 2).

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).