Caring Near and Far by Connecting Community-Based Clients and Family Member/Friend Caregivers Using Passive Remote Monitoring: Protocol for a Pragmatic Randomized Controlled Trial.

BACKGROUND: Significant chronic disease challenges exist among older adults. However, most older adults want to remain at home even if their health conditions challenge their ability to live independently. Yet publicly funded home care resources are scarce, private home care is expensive, and family/friend caregivers have limited capacity. Many older adults with chronic illness would require institutional care without the support from family member/friend caregivers. This role raises the risk of physical health problems, stress, burnout, and depression. Passive remote monitoring (RM), the use of sensors that do not require any action by the individual for the system to work, may increase the older adult's ability to live independently while also providing support and peace of mind to both the client and the family member/friend caregiver. OBJECTIVE: This paper presents the protocol of a study conducted in two provinces in Canada to investigate the impact of RM along with usual home care (the intervention) versus usual home care alone (control) on older adults with complex care. The primary outcome for this study is the occurrence of and time to events such as trips to emergency, short-term admission to the hospital, terminal admission to the hospital awaiting admission to long-term care, and direct admission to long-term care. The secondary outcomes for this study are (1) health care costs, (2) client functional status and quality of life in the home, (3) family/friend caregiver stress, and (4) family/friend caregiver functional health status. METHODS: The design for this study is an unblinded pragmatic randomized controlled trial (PRCT) with two parallel arms in two geographic strata (Ontario and Nova Scotia). Quantitative and qualitative methodologies will be used to address the study objectives. This PRCT is conceptually informed by the principles of client-centered care and viewing the family as the client and aims at providing supported self-management. RESULTS: This study is supported by the Canadian Institutes for Health Research. A primary completion date is anticipated in fall 2022. CONCLUSIONS: Findings from this real-world rigorous randomized trial will support Canadian decision-makers, providers, and clients and their caregivers in assessing the health, well-being, and economic benefits and the social and technological challenges of integrating RM technologies to support older adults to stay in their home, including evaluating the impact on the burden of care experienced by family/friend caregivers. With an aging population, this technology may reduce institutionalization and promote safe and independent living for the elderly as long as possible. TRIAL REGISTRATION: International Standard Randomised Controlled Trial Number (ISRCTN) 79884651; http://www.isrctn.com/ISRCTN79884651. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/15027.

A Framework for Supporting Post-acute Care Transitions of Older Patients With Hip Fracture.

OBJECTIVE: Improving care transitions is of critical importance for older patients, especially those with complex care needs. Our study examined the "Transitions of Care" (ToC) of complex, post-acute older adults at multiple time points. The objective of this article is to identify domains relevant to health care transitions of post-acute older patients with hip fracture so as to inform future ToC interventions. DESIGN: Here we conducted a framework-based synthesis of the 12 peer-reviewed manuscripts that were published from our multisite, ethnographic study. SETTING AND PARTICIPANTS: All 12 manuscripts were based on 1 study, described here. Data were collected in multiple regions, in acute and sub-acute care wards, rehabilitation programs, home care agencies, long-term care and assisted living facilities, and patients' private homes. We completed 51 interviews with 23 postoperative hip fracture patients aged ≥65 years, 24 interviews with 19 family caregivers, and 96 interviews with 92 health care providers. Interviews with patients, family caregivers, and health care providers were conducted at each transition point for a total of 171 individual interviews. RESULTS: Taken together, our framework analysis of the 12 manuscripts identified 8 themes related to ToC. Two themes, patient complexity and system constraints, are contextual factors that tend to impede ToC and may be less amenable to change. The remaining 6 themes, patient involvement and choice, family caregiver roles, strong relationships, coordination of roles, documentation, and information sharing, have the potential to support and improve ToC. CONCLUSIONS AND IMPLICATIONS: With comprehensive data from a range of stakeholders, collected at multiple transition points along the health care continuum, in our final 6 themes we identify potential points of intervention for clinicians and teams seeking to improve ToC for older complex patients.

Mixed-methods single-arm repeated measures study evaluating the feasibility of a web-based intervention to support family carers of persons with dementia in long-term care facilities.

BACKGROUND: Following institutionalization of a relative with Alzheimer disease and related dementias (ADRD), family carers continue to provide care. They must learn to negotiate with staff and navigate the system all of which can affect their mental health. A web-based intervention, My Tools 4 Care-In Care (MT4C-In Care) was developed by the research team to aid carers through the transitions experienced when their relative/friend with ADRD resides in a long-term care (LTC) facility. The purpose of this study was to evaluate MT4C-In Care for feasibility, acceptability, ease of use, and satisfaction, along with its potential to help decrease carer's feelings of grief and improve their hope, general self-efficacy, and health-related quality of life. METHODS: The study was a mixed-methods single-arm repeated measures feasibility study. Participants accessed MT4C-In Care over a 2-month period. Data were collected at baseline and 1 and 2 months. Using a checklist, participants evaluated MT4C-In Care for ease of use, feasibility, acceptability, and satisfaction. Measures were also used to assess the effectiveness of the MT4C-In Care in improving hope (Herth Hope Index), general self-efficacy (GSES), loss and grief (NDRGEI), and health-related quality of life (SF12v2) of participants. Qualitative data were collected at 2 months and informed quantitative findings. RESULTS: The majority of the 37 participants were female (65%; 24/37), married (73%; 27/37), and had a mean age of 63.24 years (SD = 11.68). Participants reported that MT4C-In Care was easy to use, feasible, and acceptable. Repeated measures ANOVA identified a statistically significant increase over time in participants hope scores (p = 0.03) and a significant decrease in grief (< 0.001). Although significant differences in mental health were not detected, hope (r = 0.43, p = 0.03) and grief (r = - 0.66, p < 0.001) were significantly related to mental health quality of life. CONCLUSION: MT4C-In Care is feasible, acceptable, and easy to use and shows promise to help carers of family members with ADRD residing in LTC increase their hope and decrease their grief. This study provides the foundation for a future pragmatic trial to determine the efficacy of MT4C-In Care. TRIAL REGISTRATION: ClinicalTrials.gov NCT03571165. June 30, 2018 (retrospectively registered).

Web-Based Intervention for Family Carers of Persons with Dementia and Multiple Chronic Conditions (My Tools 4 Care): Pragmatic Randomized Controlled Trial.

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).

A Web-Based Intervention to Help Caregivers of Older Adults With Dementia and Multiple Chronic Conditions: Qualitative Study.

BACKGROUND: Caregivers (ie, family members and friends) play a vital role in the ongoing care and well-being of community-living older persons with Alzheimer disease and related dementia in combination with multiple chronic conditions. However, they often do so to the detriment of their own physical, mental, and emotional health. Caregivers often experience multiple challenges in their caregiving roles and responsibilities. Recent evidence suggests that Web-based interventions have the potential to support caregivers by decreasing caregiver stress and burden. However, we know little about how Web-based supports help caregivers. OBJECTIVE: The objectives of this paper were to describe (1) how the use of a self-administered, psychosocial, supportive, Web-based Transition Toolkit, My Tools 4 Care (MT4C), designed by atmist, Edmonton, Alberta, Canada, helped caregivers of older adults with Alzheimer disease and related dementia and multiple chronic conditions; (2) which features of MT4C caregivers found most and least beneficial; and (3) what changes would they would recommend making to MT4C. METHODS: This study was part of a larger multisite mixed-methods pragmatic randomized controlled trial. The qualitative portion of the study and the focus of this paper used a qualitative descriptive design. Data collectors conducted semistructured, open-ended, telephone interviews with study participants who were randomly allocated to use MT4C for 3 months. All interviews were audio-taped and ranged from 20 to 40 min. Interviews were conducted at 1 and 3 months following a baseline interview. Qualitative content analysis was used to analyze collected data. RESULTS: Fifty-six caregivers from Alberta and Ontario, Canada, participated in either one or both of the follow-up interviews (89 interviews in total). Caregivers explained that using MT4C (1) encouraged reflection; (2) encouraged sharing of caregiving experiences; (3) provided a source of information and education; (4) provided affirmation; and for some participants (5) did not help. Caregivers also described features of MT4C that they found most and least beneficial and changes they would recommend making to MT4C. CONCLUSIONS: Study results indicate that a self-administered psychosocial supportive Web-based resource helps caregivers of community-dwelling older adults with Alzheimer disease and related dementia and multiple chronic conditions with their complex caregiving roles and responsibilities. The use of MT4C also helped caregivers in identifying supports for caring, caring for self, and planning for future caregiving roles and responsibilities. Caregivers shared important recommendations for future development of Web-based supports.

Evaluating dementia home care practices: The reification of care norms.

This critical ethnographic study examined how power relations shape the nature and enactment of caregivers' evaluation of home-based dementia care practices. As the home care sector continues to evolve and prepare itself as a key element in caring for people living with dementia and their families, this study grounds our understanding of how dementia home care practices are enacted and evaluated, particularly at the interface of formal and familial caregiving. The critical finding from our data is that not all evaluations of care practices were considered equally meaningful or relevant, and, moreover, their significance depended on whether the evaluation was made by someone in a position of power. Renewed awareness of and attention to power relations, such as class and gender, are implicated in the evaluation of care practices. Consequently, challenging how power is enacted in ways that (re)produces and reifies care norms is vital in order to foster equitable and supportive partnerships in home-based dementia care.

Study protocol: pragmatic randomized control trial of an internet-based intervention (My tools 4 care) for family carers.

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.

Needs of family caregivers in home care for older adults.

Objective: to reveal the felt and normative needs of primary family caregivers when providing instrumental support to older adults enrolled in a Home Care Program in a Primary Health Service in the South of Brazil. Methods: using Bradshaw's taxonomy of needs to explore the caregiver's felt needs (stated needs) and normative needs (defined by professionals), a mixed exploratory study was conducted in three steps: Descriptive quantitative phase with 39 older adults and their caregiver, using a data sheet based on patient records; Qualitative exploratory phase that included 21 caregiver interviews, analyzed by content analysis; Systematic observation, using an observation guide with 16 caregivers, analyzed by descriptive statistics. Results: the felt needs were related to information about instrumental support activities and subjective aspects of care. Caregivers presented more normative needs related to medications care. Conclusion: understanding caregivers' needs allows nurses to plan interventions based on their particularities.

Balancing safety and harm for older adults with dementia in rural emergency departments: healthcare professionals' perspectives.

INTRODUCTION: The emergency department (ED) is a potentially harmful environment for older adults with dementia, and rural EDs face unique challenges in providing care to this population. The purpose of this study was to understand safety and harm in rural ED transitional care for community dwelling older adults with dementia from the perspective of healthcare professionals (HCPs). METHODS: An interpretive, descriptive exploratory design from a social ecological perspective was used. Using purposive and snowball sampling, HCPs were recruited from two rural hospital EDs in two Canadian provinces. Data collection involved participant interviews using a semi-structured interview guide. Audio-recorded interviews were transcribed, transcripts coded, and themes identified using constant comparative analysis with thematic coding. RESULTS: A total of 12 HCPs, seven from one province and five from the other, participated in the study. HCPs worked directly in the ED or consulted in the ED from hospital-based social work, rehabilitation and community liaison services. Three themes were identified: physical environment (space, design and equipment), work environment (pressure to perform) and practice environment (family, knowledge and processes). A conceptual model was developed to illustrate how HCPs worked to balance safety and harm for older patients with dementia within a milieu created by the overlapping and synergistically interacting environments. CONCLUSIONS: HCPs in rural EDs working at the interface of hospital and community constantly attempt to balance promoting safety and avoiding harm for older adults with dementia. Participants perceived safety broadly, understanding that the consequences of the milieu were created through an interaction between physical, work and practice environments. These consequences related to the physical, cognitive and emotional wellbeing of older adults with dementia and their caregivers. Within the practice environment, participants identified a 'rural advantage' that was tied to their knowledge of community and the people with dementia and their caregivers who sought care in the participating EDs. However, familiarity can be a double-edged sword and to minimize potential harm healthcare professionals must seek input from caregivers regarding altered functional status, and policies to change triage to include gerontological knowledge and create elder-friendly rural ED environments are needed.

Needs of family caregivers in home care for older adults / Necessidades dos cuidadores familiares na atenção domiciliar a idosos / Necesidades de los cuidadores familiares en la atención domiciliaria a ancianos

ABSTRACT Objective: to reveal the felt and normative needs of primary family caregivers when providing instrumental support to older adults enrolled in a Home Care Program in a Primary Health Service in the South of Brazil. Methods: using Bradshaw's taxonomy of needs to explore the caregiver's felt needs (stated needs) and normative needs (defined by professionals), a mixed exploratory study was conducted in three steps: Descriptive quantitative phase with 39 older adults and their caregiver, using a data sheet based on patient records; Qualitative exploratory phase that included 21 caregiver interviews, analyzed by content analysis; Systematic observation, using an observation guide with 16 caregivers, analyzed by descriptive statistics. Results: the felt needs were related to information about instrumental support activities and subjective aspects of care. Caregivers presented more normative needs related to medications care. Conclusion: understanding caregivers' needs allows nurses to plan interventions based on their particularities.

RESUMO Objetivo: identificar as necessidades sentidas e normativas dos cuidadores familiares principais no apoio instrumental a idosos registrados em um Programa de Atenção Domiciliar em uma Unidade Básica de Saúde no Sul do Brasil. Métodos: usando a Taxonomia de Necessidades de Bradshaw para explorar as necessidades sentidas (necessidades declaradas) e normativas (definidas por profissionais), desenvolveu-se um estudo exploratório misto em três etapas: Etapa descritiva quantitativa, envolvendo 39 idosos e seus cuidadores, com a ajuda de um folha de dados baseada no prontuário do paciente; Etapa exploratória qualitativa, baseada em entrevistas com 21 cuidadores, analisadas mediante a análise de conteúdo; Observação sistemática, aplicando um roteiro de observação a 16 cuidadores, com análise estatística descritiva. Resultados: as necessidades sentidas estavam relacionadas a informações sobre atividades de apoio instrumental e aspectos subjetivos do cuidado. Os cuidadores apresentaram maior número de necessidades normativas associadas ao cuidado com as medicações. Conclusão: compreender as necessidades dos cuidadores permite aos enfermeiros planejar intervenções baseadas em suas particularidades.

RESUMEN Objetivo: descubrir las necesidades sentidas y normativas de los cuidadores primarios familiares en la prestación de apoyo instrumental a ancianos registrados en un Programa de Atención Domiciliaria en una Unidad Básica de Salud en el sur de Brasil. Métodos: usando la Taxonomía de Necesidades de Bradshaw para explorar las necesidades sentidas (necesidades declaradas) y normativas (definidas por profesionales), fue desarrollado un estudio exploratorio mixto en tres etapas: Etapa descriptiva cuantitativa, involucrando 39 ancianos y sus cuidadores, mediante una hoja de datos basada en el archivo del paciente; Etapa exploratoria cualitativa, basada en entrevistas con 21 cuidadores, analizadas mediante el análisis de contenido; Observación sistemática, aplicando un manual de observación a 16 cuidadores, con análisis estadístico descriptivo. Resultados: las necesidades sentidas estaban relacionadas a informaciones sobre actividades de apoyo instrumental y aspectos subjetivos de la atención. Los cuidadores presentaron mayor número de necesidades normativas asociadas al cuidado con medicaciones. Conclusión: comprender las necesidades de los cuidadores permite a los enfermeros planificar intervenciones basadas en sus particularidades.

Simultaneous temporal trends in dementia incidence and prevalence, 2005-2013: a population-based retrospective cohort study in Saskatchewan, Canada.

BACKGROUND: Original studies published over the last decade regarding time trends in dementia report mixed results. The aims of the present study were to use linked administrative health data for the province of Saskatchewan for the period 2005/2006 to 2012/2013 to: (1) examine simultaneous temporal trends in annual age- and sex-specific dementia incidence and prevalence among individuals aged 45 and older, and (2) stratify the changes in incidence over time by database of identification. METHODS: Using a population-based retrospective cohort study design, data were extracted from seven provincial administrative health databases linked by a unique anonymized identification number. Individuals 45 years and older at first identification of dementia between April 1, 2005 and March 31, 2013 were included, based on case definition criteria met within any one of four administrative health databases (hospital, physician, prescription drug, and long-term care). RESULTS: Between 2005/2006 and 2012/2013, the 12-month age-standardized incidence rate of dementia declined significantly by 11.07% and the 12-month age-standardized prevalence increased significantly by 30.54%. The number of incident cases decreased from 3,389 to 3,270 and the number of prevalent cases increased from 8,795 to 13,012. Incidence rate reductions were observed in every database of identification. CONCLUSIONS: We observed a simultaneous trend of decreasing incidence and increasing prevalence of dementia over a relatively short 8-year time period from 2005/2006 to 2012/2013. These trends indicate that the average survival time of dementia is lengthening. Continued observation of these time trends is warranted given the short study period.

Availability and Primary Health Care Orientation of Dementia-Related Services in Rural Saskatchewan, Canada.

Community-based services are important for improving outcomes for individuals with dementia and their caregivers. This study examined: (a) availability of rural dementia-related services in the Canadian province of Saskatchewan, and (b) orientation of services toward six key attributes of primary health care (i.e., information/education, accessibility, population orientation, coordinated care, comprehensiveness, quality of care). Data were collected from 71 rural Home Care Assessors via cross-sectional survey. Basic health services were available in most communities (e.g., pharmacists, family physicians, palliative care, adult day programs, home care, long-term care facilities). Dementia-specific services typically were unavailable (e.g., health promotion, counseling, caregiver support groups, transportation, week-end/night respite). Mean scores on the primary health care orientation scales were low (range 12.4 to 17.5/25). Specific services to address needs of rural individuals with dementia and their caregivers are limited in availability and fit with primary health care attributes.

Incidence and prevalence of dementia in linked administrative health data in Saskatchewan, Canada: a retrospective cohort study.

BACKGROUND: Determining the epidemiology of dementia among the population as a whole in specific jurisdictions - including the long-term care population-is essential to providing appropriate care. The objectives of this study were to use linked administrative databases in the province of Saskatchewan to determine the 12-month incidence and prevalence of dementia for the 2012/13 period (1) among individuals aged 45 and older in the province of Saskatchewan, (2) according to age group and sex, and (3) according to diagnosis code and other case definition criteria. METHODS: We used a population-based retrospective cohort study design and extracted data from 10 provincial health databases linked by a unique health services number. The cohort included individuals 45 years and older at first identification of dementia between April 1, 2001 and March 31, 2013 based on case definitions met within any one of four administrative health databases (Hospital Discharge Abstracts, Physician Service Claims, Prescription Drug, and RAI-MDS, i.e., Long-term Care). RESULTS: A total of 3,270 incident cases of dementia (7.28 per 1,000 PAR) and 13,012 prevalent cases (28.16 per 1,000 PAR) were identified during 2012/13. This study found the incidence rate increased by 2.8 to 5.1 times and the prevalence rate increased by 2.6 to 4.6 times every 10 years after 45 years of age. Overall, the age-standardised incidence rate was significantly lower among females than males (7.04 vs. 7.65 per 1,000 PAR) and the age-standardised prevalence rate was significantly higher among females than males (28.92 vs. 26.53 per 1,000 PAR). Over one-quarter (28 %) of all incident cases were admitted to long-term care before a diagnosis was formally recorded in physician or hospital data, and nearly two-thirds of these cases were identified at admission with impairment at the moderate to very severe level or a disease category of Alzheimer's disease/other dementia. CONCLUSIONS: Linking multiple sources of registry data contributes to our understanding of the epidemiology of dementia across multiple segments of the population, inclusive of individuals residing in long-term care. This information is foundational for public awareness and policy recommendations, health promotion and prevention strategies, appropriate health resource planning, and research priorities.

Exercise programs for people with dementia.

BACKGROUND: This is an update of our previous 2013 review. Several recent trials and systematic reviews of the impact of exercise on people with dementia are reporting promising findings. OBJECTIVES: Primary objectiveDo exercise programs for older people with dementia improve their cognition, activities of daily living (ADLs), neuropsychiatric symptoms, depression, and mortality? Secondary objectivesDo exercise programs for older people with dementia have an indirect impact on family caregivers' burden, quality of life, and mortality?Do exercise programs for older people with dementia reduce the use of healthcare services (e.g. visits to the emergency department) by participants and their family caregivers? SEARCH METHODS: We identified trials for inclusion in the review by searching ALOIS (www.medicine.ox.ac.uk/alois), the Cochrane Dementia and Cognitive Improvement Group's Specialised Register, on 4 September 2011, on 13 August 2012, and again on 3 October 2013. SELECTION CRITERIA: In this review, we included randomized controlled trials in which older people, diagnosed with dementia, were allocated either to exercise programs or to control groups (usual care or social contact/activities) with the aim of improving cognition, ADLs, neuropsychiatric symptoms, depression, and mortality. Secondary outcomes related to the family caregiver(s) and included caregiver burden, quality of life, mortality, and use of healthcare services. DATA COLLECTION AND ANALYSIS: Independently, at least two authors assessed the retrieved articles for inclusion, assessed methodological quality, and extracted data. We analysed data for summary effects. We calculated mean differences or standardized mean difference (SMD) for continuous data, and synthesized data for each outcome using a fixed-effect model, unless there was substantial heterogeneity between studies, when we used a random-effects model. We planned to explore heterogeneity in relation to severity and type of dementia, and type, frequency, and duration of exercise program. We also evaluated adverse events. MAIN RESULTS: Seventeen trials with 1067 participants met the inclusion criteria. However, the required data from three included trials and some of the data from a fourth trial were not published and not made available. The included trials were highly heterogeneous in terms of subtype and severity of participants' dementia, and type, duration, and frequency of exercise. Only two trials included participants living at home.Our meta-analysis revealed that there was no clear evidence of benefit from exercise on cognitive functioning. The estimated standardized mean difference between exercise and control groups was 0.43 (95% CI -0.05 to 0.92, P value 0.08; 9 studies, 409 participants). There was very substantial heterogeneity in this analysis (I² value 80%), most of which we were unable to explain, and we rated the quality of this evidence as very low. We found a benefit of exercise programs on the ability of people with dementia to perform ADLs in six trials with 289 participants. The estimated standardized mean difference between exercise and control groups was 0.68 (95% CI 0.08 to 1.27, P value 0.02). However, again we observed considerable unexplained heterogeneity (I² value 77%) in this meta-analysis, and we rated the quality of this evidence as very low. This means that there is a need for caution in interpreting these findings.In further analyses, in one trial we found that the burden experienced by informal caregivers providing care in the home may be reduced when they supervise the participation of the family member with dementia in an exercise program. The mean difference between exercise and control groups was -15.30 (95% CI -24.73 to -5.87; 1 trial, 40 participants; P value 0.001). There was no apparent risk of bias in this study. In addition, there was no clear evidence of benefit from exercise on neuropsychiatric symptoms (MD -0.60, 95% CI -4.22 to 3.02; 1 trial, 110 participants; P value .0.75), or depression (SMD 0.14, 95% CI -0.07 to 0.36; 5 trials, 341 participants; P value 0.16). We could not examine the remaining outcomes, quality of life, mortality, and healthcare costs, as either the appropriate data were not reported, or we did not retrieve trials that examined these outcomes. AUTHORS' CONCLUSIONS: There is promising evidence that exercise programs may improve the ability to perform ADLs in people with dementia, although some caution is advised in interpreting these findings. The review revealed no evidence of benefit from exercise on cognition, neuropsychiatric symptoms, or depression. There was little or no evidence regarding the remaining outcomes of interest (i.e., mortality, caregiver burden, caregiver quality of life, caregiver mortality, and use of healthcare services).

Evolution of a community-based participatory approach in a rural and remote dementia care research program.

BACKGROUND: Community-based participatory research (CBPR) approaches are valuable strategies for addressing complex health and social problems and powerful tools to support effective transformation of social and health policy to better meet the needs of diverse stakeholders. OBJECTIVES: Since 1997, our team has utilized CBPR approaches to improve health service delivery for persons with dementia and their caregivers in rural and remote settings. We describe the evolution of our approach, including benefits, challenges, and lessons learned over the last 15 years. METHODS: A multistage approach initiated an ongoing CBPR research program in rural dementia care and shaped its direction based on stakeholders' recommendation to prioritize both community and facility-based care. Strategies to develop and foster collaborative partnerships have included travel to rural and remote regions, province-wide community meetings, stakeholder workshops, creation of a Decision-Maker Advisory Council to provide ongoing direction to the overall program, development of diverse project-specific advisory groups, and a highly successful and much anticipated annual knowledge exchange and team-building event. LESSONS LEARNED: Partnering with stakeholders in the full research process has enhanced the research quality, relevance, application, and sustainability. These benefits have supported the team's evolution from a relatively traditional focus to an integrated approach guiding all aspects of our research. CONCLUSIONS: Developing and sustaining the full range of stakeholder and decision-maker partnerships is resource-and time-intensive, but our experience shows that community-based participatory strategies are highly suited to health services research that is designed to support sustainable service delivery improvements.

The journey with dementia from the perspective of bereaved family caregivers: a qualitative descriptive study.

BACKGROUND: With increasing rates of dementia among older adults, many people will be affected by this disease; either by having the disease or by caring for a relative with dementia. Due to a shift toward home and community-based care there will be an increase in the number of family caregivers caring for persons with dementia. The caregiving experience in the dementia journey is influenced by many factors. Currently there is a paucity of research that examines the dementia caregiving experience from the perspective of bereaved caregivers or that presents the complete caregiving journey. The purpose of this study was to describe the dementia caregiving journey as revealed by bereaved family caregivers. METHODS: This study utilized qualitative description to describe the overall dementia caregiving journey as told by 11 bereaved caregivers. Open-ended interviews resulted in rich detailed descriptions of the caregiving journey from before a dementia diagnosis and into bereavement. RESULTS: Findings are discussed based on the following caregiving themes: (a) getting a diagnosis; (b) managing at home; (c) transition to long-term care; (d) end of life; and (e) grief in bereavement. Subthemes reflect the dementia caregiving journey using the words of the participants. Participants spoke of grieving throughout the caregiving experience. CONCLUSIONS: Bereaved caregivers have similar experiences to active caregivers over comparable points in the journey with dementia. Findings from this work contribute new understanding to the literature around the unique perspective of bereaved caregivers, while presenting the overall dementia caregiving journey.

Information sharing with rural family caregivers during care transitions of hip fracture patients.

INTRODUCTION: Following hip fracture surgery, patients often experience multiple transitions through different care settings, with resultant challenges to the quality and continuity of patient care. Family caregivers can play a key role in these transitions, but are often poorly engaged in the process. We aimed to: (1) examine the characteristics of the family caregivers' experience of communication and information sharing and (2) identify facilitators and barriers of effective information sharing among patients, family caregivers and health care providers. METHODS: Using an ethnographic approach, we followed 11 post-surgical hip fracture patients through subsequent care transitions in rural Ontario; in-depth interviews were conducted with patients, family caregivers (n = 8) and health care providers (n = 24). RESULTS: Priority areas for improved information sharing relate to trust and respect, involvement, and information needs and expectations; facilitators and barriers included prior health care experience, trusting relationships and the rural setting. CONCLUSION: As with knowledge translation, effective strategies to improve information sharing and care continuity for older patients with chronic illness may be those that involve active facilitation of an on-going partnership that respects the knowledge of all those involved.

An interprofessional nurse-led mental health promotion intervention for older home care clients with depressive symptoms.

BACKGROUND: Depressive symptoms in older home care clients are common but poorly recognized and treated, resulting in adverse health outcomes, premature institutionalization, and costly use of health services. The objectives of this study were to examine the feasibility and acceptability of a new six-month interprofessional (IP) nurse-led mental health promotion intervention, and to explore its effects on reducing depressive symptoms in older home care clients (≥ 70 years) using personal support services. METHODS: A prospective one-group pre-test/post-test study design was used. The intervention was a six-month evidence-based depression care management strategy led by a registered nurse that used an IP approach. Of 142 eligible consenting participants, 98 (69%) completed the six-month and 87 (61%) completed the one-year follow-up. Outcomes included depressive symptoms, anxiety, health-related quality of life (HRQoL), and the costs of use of all types of health services at baseline and six-month and one-year follow-up. An interpretive descriptive design was used to explore clients', nurses', and personal support workers' perceptions about the intervention's appropriateness, benefits, and barriers and facilitators to implementation. RESULTS: Of the 142 participants, 56% had clinically significant depressive symptoms, with 38% having moderate to severe symptoms. The intervention was feasible and acceptable to older home care clients with depressive symptoms. It was effective in reducing depressive symptoms and improving HRQoL at six-month follow-up, with small additional improvements six months after the intervention. The intervention also reduced anxiety at one year follow-up. Significant reductions were observed in the use of hospitalization, ambulance services, and emergency room visits over the study period. CONCLUSIONS: Our findings provide initial evidence for the feasibility, acceptability, and sustained effects of the nurse-led mental health promotion intervention in improving client outcomes, reducing use of expensive health services, and improving clinical practice behaviours of home care providers. Future research should evaluate its efficacy using a randomized clinical trial design, in different settings, with an adequate sample of older home care recipients with depressive symptoms. TRIAL REGISTRATION: Clinicaltrials.gov identifier: NCT01407926.

Exercise programs for people with dementia

BACKGROUND: This is an update of our previous 2008 review. Several recent trials and systematic reviews of the impact of exercise on people with dementia are reporting promising findings. OBJECTIVE: Primary: Do exercise programs for older people with dementia improve cognition, activities of daily living (ADLs), challenging behaviour, depression, and mortality in older people with dementia? Secondary: Do exercise programs for older people with dementia have an indirect impact on family caregivers' burden, quality of life, and mortality? Do exercise programs for older people with dementia reduce the use of healthcare services (e.g. visits to the emergency department) by participants and their family caregivers? METHODS: Search methods: We identified trials for inclusion in the review by searching ALOIS (www.medicine.ox.ac.uk/alois), the Cochrane Dementia and Cognitive Improvement Group's Specialised Register, on 4 September 2011, and again on 13 August 2012. The search terms used were: 'physical activity' OR exercise OR cycling OR swim* OR gym* OR walk* OR danc* OR yoga OR 'tai chi'. Selection criteria: In this review, we included randomized controlled trials in which older people, diagnosed with dementia, were allocated either to exercise programs or to control groups (usual care or social contact/activities) with the aim of improving cognition, ADLs, behaviour, depression, and mortality. Secondary outcomes related to the family caregiver(s) and included caregiver burden, quality of life, mortality, and use of healthcare services. Data collection and analysis: Independently, at least two authors assessed the retrieved articles for inclusion, assessed methodological quality, and extracted data. Data were analysed for summary effects using RevMan 5.1 software. We calculated mean differences or standardized mean difference (SMD) for continuous data, and synthesized data for each outcome using a fixed-effect model, ...

Informal caregivers' hopes and expectations of a referral to a memory clinic.

Although only 20-50% of individuals with dementia are diagnosed, early diagnosis enables patients and families to access interventions and services, and plan for the future. The current study explored the experiences of rural family caregivers in the period leading up to a diagnostic assessment at a Canadian memory clinic, their hopes and expectations of the assessment, and their experiences in the six months following diagnosis. Using a longitudinal, retrospective and prospective qualitative research design, caregivers of 30 patients referred to the clinic were interviewed during the diagnostic assessment process and again six months after the diagnosis. Most caregivers reported first noticing symptoms two years prior to diagnosis. The pre-diagnostic interviews revealed a prevalent 'need to know' among caregivers that drove the help-seeking process. Caregivers hoped that the diagnosis would have the benefits of 'naming it,' 'accessing treatment,' 'knowing what to expect,' and 'receiving guidance.' When asked six months later about the impact of the diagnosis, the main theme was 'acceptance and moving forward.' Caregivers reported that the diagnosis provided 'relief,' 'validation,' and 'improved access to services.' These findings can inform care practices of primary health care providers who represent the first point of contact regarding expectations and experiences of dementia-related diagnoses.