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

Purpose: As the Canadian population ages the provision of high quality dementia care may be increasingly challenging, particularly in under-resourced rural areas. Researchers have also suggested that rural care providers have unmet dementia-related educational needs and would benefit from formal knowledge exchange supports, such as a knowledge broker (KB). The current research aimed to address this issue by employing a KB to facilitate the development and implementation of integrated knowledge translation (iKT) strategies within two rural home care centres.Methods: In this longitudinal multiple case study, iKT processes at each site were assessed at baseline, 6 months, and following the termination of KB assistance. Data from 38 semi-structured interviews at the latter time points with registered and licensed practical nurses, health care aides, managers, and other care providers (n=19) were analyzed thematically to examine their perceptions of strategy processes and impacts, including the KB role.Findings: Perceived facilitators of iKT strategy development and implementation included collaborative development by knowledge users, alignment with organizational values and culture, and regular communication. Home care providers (HCPs) identified the importance of leadership and perceived the KB to be integral for facilitating communication, keeping strategies on track, and brokering information. Barriers to strategy implementation also emerged however, including significant time constraints, limited resources, and the variable nature of dementia. HCP reported that the iKT strategies enabled rural/community-specific solutions, enhanced their knowledge and ability to use best practice dementia information, increased their capacity to exchange dementia knowledge, and ultimately enhanced family and client well-being.Conclusions: HCPs reported professional benefits from their participation in the iKT strategies, and perceived benefits for people living with dementia and their caregivers. Findings suggest the utility of such strategies for addressing ongoing education needs of rural care providers. Keywords: dementia, integrated knowledge translation, home care, rural DOI: http://dx.doi.org/10.14574/ojrnhc.v18i2.509

Purpose: To understand the lived experience of persons with dementia and their family caregivers who receive home care in northern Alberta, Canada, and to reveal how integrated knowledge translation (iKT) strategies influence the uptake of best available dementia care evidence over time.\ud \ud \ud Sample: Three persons living with dementia and thirteen family caregivers were interviewed at the beginning of the study, nine months after implementation of the knowledge broker (KB), and six months after termination of the KB role (total interviews = 41).\ud \ud \ud Method: The PARiHS framework guided our longitudinal case study that included two rural home care centres. A qualitative interpretive descriptive approach was used. A KB was hired for 12 months to facilitate the development of different iKT strategies with staff. Site A developed two strategies: 1) a planning meeting to discuss local needs and suggestions for improving access to dementia care information and community supports; and 2) the development of an information package. Site B focused on working through modules of the U-First program that entailed dementia education and training for the home care providers (HCPs). They then used the U-First wheels with clients during their home visits.\ud \ud \ud Findings: Persons living with dementia spoke of both positive and negative aspects of their dementia journey and how they attempted to manage their lives. Family caregivers struggled to find the best approaches and supports to use to enable their family member with dementia to remain at home for as long as possible. iKT strategies such as a KB, the information resource package developed by the HCPs, use of the U-First modules and wheels, and a support group were examples of effective iKT.\ud \ud \ud Conclusion: iKT strategies and projects increased access to dementia care information and supports. These assisted caregivers to better care for their family member for longer periods at home.\ud \ud \ud Keywords: Persons living with dementia, family caregivers, integrated knowledge translation strategies, rural, and home care

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

Background 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

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.

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.

This is a protocol for a Cochrane Review (Intervention). The objectives are as follows: Primary: To assess the efficacy of posatirelin treatment in improving function, cognition, mood, behaviour, quality of life, and mortality in older persons with dementia. Secondary: To assess the efficacy of posatirelin treatment in decreasing medication use for the purpose of minimizing negative drug interactions (for example, ChEIs, whose effectiveness can decrease when paired with incontinence medication) and number of adverse drug reactions. To make recommendations for consumers, healthcare professionals, decision‐makers, and researchers regarding the efficacy of posatirelin treatment for dementia.

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. CLINICALTRIAL ClinicalTrials.gov NCT02428387; https://clinicaltrials.gov/ct2/show/NCT02428387 (Archived by Webcite at http://www.webcitation.org/708oFCR8h).

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.

Living and working in isolated northern communities pose challenges in using evidence to inform dementia care. Purpose : To better understand the contextual dimensions of two home care centres in two Canadian northern, rural communities that influence the use of evidence from the perspectives of home care providers (HCPs). Sample : A ll clinical leaders, managers, and home care providers (n=48 FTE) in the two home care centres were sent an information letter outlining the study’s purpose, expectations, and benefits and invited to participate in focus groups conducted in two home care centres. Fourteen staff participated in the two focus groups. Method: A qualitative interpretive descriptive approach was used. Semi-structured questions were used to guide the audiotape recorded focus groups. Transcripts were coded using Lubrosky’s thematic analysis. Findings : Our findings are described in broad contextual themes (e.g., challenges in using the RAI-HC, availability of resources, relationships in a rural community, leadership, and evaluation) that included both positive and negative contextual dimensions that influenced the use of evidence. Conclusions : Most importantly, reallocated resources are needed in northern home care settings. Challenges in exchanging evidence related to difficult relationships with physicians, clients, and their family caregivers. Leadership and collaboration dimensions were fundamental to establishing a vibrant workplace in which HCPs provided and exchanged evidence-based dementia care. Keywords: Evidence-based dementia care, northern home care, home care contextual dimensions, knowledge exchange. DOI: http://dx.doi.org/ 10.14574/ojrnhc.v15i1.344

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.

© 2017 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.

Background: Community­based 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 set­ tings. 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 facility­based care. Strategies to develop and foster collaborative partnerships have included travel to rural and remote regions, province­w ide community meetings, stakeholder workshops, creation of a Decision­Maker 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 team­building 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 decision­maker partnerships is resource­ and time­intensive, but our experience shows that commu­ nity­based participatory strategies are highly suited to health services research that is designed to support sustainable service delivery improvements.

For older adults with complex health conditions, transitions between care settings are common and a major risk to quality of care and patient safety. Care transition interventions have shown positive impacts on continuity of care and health service use, however, most require additional human resources (e.g., transition coach), focus on one transition or “handoff”, and provide support for individual patients without addressing underlying challenges of health system integration. We sought to develop a framework for system-level enhancements to care transitions for older adults. We report a secondary framework analysis of an ethnographic investigation (the “InfoRehab” project) of care transitions for older persons who had experienced a hip fracture. The ethnographic study involved interviews, observations, and document reviews for 23 patients, 19 family caregivers, and 92 health care providers. Data were collected at each transition point (1-4/patient) along the care continuum, at three Canadian sites (large urban, mid-size urban, rural). Our framework analysis followed the approach described by Gale et al. (2013), using as cases 12 peer-reviewed papers which had reported InfoRehab results. Two researchers coded findings from each paper, then developed an analytical framework of eight themes by consensus; these include: patient involvement and choice, family caregiver involvement, patient complexity, health care provider coordination, information sharing, documentation, system constraints, and relationships. NVivo 11 was used to index findings into these themes and to generate a matrix. We are working with system stakeholders, including patients and caregivers, to apply this framework in the development of improved systems for care transitions.

Bien que l’incontinence urinaire peut etre gere d’une maniere conservatrice, c’est une cause principale de la degradation des soins de famille dans la maison. Cette etude a examine les processus d’interaction sociale et de l’application des connaissances (AC) se rapportant a la facon dont la gestion de l’incontinence urinaire (IU) peut etre traduit dans les soins a domicile. Les donnees provenant des entretiens approfondis ont ete receuillies aupres d’un echantillon theorique des 23 aidants familiaux, des beneficiaires âges et des prestataires de soins a domicile. Les comparaisons constantes et les criteres d’analyse de Glaser ont ete utilises pour arriver a traduire les connaissances a travers une theorie de fond. Dix sous-themes sont inclus: comment vivre avec le probleme; le renforcement de connaissances experientielles; le developpement du confort; l’assouplissement dans une relation de travail; la mutualite nourriciere; facilitant l’echange de connaissances; le renforcement de la confiance; l’affinage de connaissances; mettant tous ensemble, et la gestion de soins a domicile. Les resultats sont instructifs pour l’AC au sujet d’IU a la fois dans la theorie et la pratique des soins a domicile, grâce a avoir eclaire comment l’intersubjectivite et les interactions bi-directionelles sont indispensables a l’application des connaissances des soins a domicile chroniques, ce qui sont largement tacites et empiriques. Abstract: Although urinary incontinence (UI) can be managed conservatively, it is a principal reason for the breakdown of in-home family care. This study explored the social interaction processes of knowledge translation (KT) related to how UI management knowledge might be translated within in-home care. In-depth interview data were collected from a theoretical sample of 23 family caregivers, older home care recipients, and home care providers. Constant comparison and Glaser’s analysis criteria were used to create translating knowledge through relating , a substantive theory with 10 subthemes: living with the problem; building experiential knowledge; developing comfort; easing into a working relationship; nurturing mutuality; facilitating knowledge exchange; building confidence; fine-tuning knowledge; putting it all together; and managing in-home care. Findings inform both theory and practice of in-home UI KT, illuminating how intersubjectivity and bi-directional relational interactions are essential to translating in-home chronic care knowledge, which is largely tacit and experiential in nature.

Purpose: To examine information exchange by physiotherapists during care handoffs of patients with hip fracture in a rural health care setting. Methods: This qualitative ethnographic study used observation and interviews of 11 networks of patients with hip fracture (n=11), family caregivers (n=8), and health care providers (n=24). Patients were followed from acute care through each subsequent care setting. Data were supplemented by health care records and policy documents. Results: Findings revealed that handoffs were less successful when information transfer was untimely or incomplete. Family caregivers experienced challenges in obtaining information required to facilitate the handoff, especially when direct contact with physiotherapists was not possible as a result of distance or other factors. Physiotherapists had to navigate multiple data sources to retrieve important information, and managed information gaps in various ways. Information flow was often unidirectional and suggested no further clinical accountability for the discharging physiotherapist. Conclusions: Providing information in a structured and timely fashion facilitated physiotherapy handoffs. Inadequate handoffs compromised continuity of care, delayed progress in rehabilitation, and resulted in families' missing information of vital importance to their caregiving role. A multi-directional exchange of information is needed between patients, families, and health care providers across care settings.

D’ici a 2038, le nombre d’heures de soins non remunerees aux aines offert par les membres de la famille devraient tripler. Les membres des familles sont souvent supplies d’aider dans le processus parce que vivre avec la demence peut inhiber la capacite pour prendre une decision. Cette etude ethnographique a soumis les relations au sein de soins de la demence a domicile a un examen critique par le biais des entrevues face-a-face et les observations des participants des clients, des aidants naturels et des prestataires de soins a domicile. Les resultats ont revele comment les decisions sont imposees dans le contexte du systeme de soins a domicile formels, et ont mis en evidence trois themes: (1) L’accommodation de la competence/incompetence, comme definie cliniquement ; (2) La prise de decisions inopportunes; et (3) Le renforcement de l’exclusion des dements dans la prise de decision. Ces themes illuminent la facon dont les valeurs culturelles (la competence), les croyances (l’immuabilite du systeme) et les pratiques (le reglage des decisions) dans le systeme de soins a domicile sont finalement deterministes dans la prise de decisions pour les dements et leurs aidants. Afin d’optimiser la sante des dements qui se font soignes a domicile, il faut accorder d’attention supplementaire aux pratiques collaboratives et inclusives des membres des familles. Abstract: The hours of unpaid elder care by family members are projected to triple by 2038. Because living with dementia can inhibit decision-making abilities, family members are often besought to assist in this process. In this ethnographic study, relationships within home-based dementia care were critically examined through face-to-face interviews and participant observations with clients, family caregivers, and home care providers ( n = 51). The findings revealed how the formalized home care system contextually imposes decisions, and revealed three themes: (1) accommodating clinically defined competence/incompetence , (2) making untimely decisions , and (3) reinforcing exclusion in decision making . These themes shed light on how cultural values (competency), beliefs (immutability of the system), and practices (timing of decisions) of the home care system are ultimately deterministic in decision making for persons with dementia and caregivers. Additional attention to the collaborative and inclusive practices of all family members in dementia home care is imperative in order to optimize health.

RÉSUMÉLa détection précoce de la démence est essentielle pour guider les praticiens en premier ligne de soins de santé concernant de nouvelles évaluations cliniques et des traitements. Il y a une pénurie de la littérature qui évalue l’efficacité des outils de dépistage pour prédire le développement de la démence; ainsi, nous avons effectué une revue systématique pour combler cette lacune. Le but de l’examen systématique était de formuler des recommandations pour les praticiens de soins de santé sur lequel outil de dépistage prévoit mieux le développement de la démence et serait la plus faisable dans le contexte de soins primaires. On a cherché dix bases de données, ce qui a donné 751 articles. Parmi eux, 12 ont satisfait les critères de pertinence pour être inclus. Les outils de dépistage ont été évalués pour la précision des tests, la couverture du domaine cognitif, la capacité prédictive, et la faisabilité. Quatre outils de dépistage ont été recommandées. L’Examen cognitive d’Addenbrooke (ECA) a été considéré comme l’outil idéal. Une version revisée de cet outil est utilisée maintenant dans la pratique clinique, mais les propriétés psychometriques de l’ECA-R restent à déterminer.

The purpose of this research was to critique the nature of rural dementia care from the perspectives of persons with dementia, their family caregivers and home care providers through a social inclusion/exclusion lens. A critical gerontology approach within a human rights framework (Townsend, 2006) was used. Three rural dementia care networks were included consisting of persons with dementia (n=3), spouse caregivers (n=3), adult children (n=9), grandchildren (n=2) and home care providers (n=3). Thematic analysis (Lubrosky, 1994) revealed three overarching inclusion/exclusion themes. Members of the dementia care network were being denied and afforded opportunities with respect to: (i) experiencing quality relationships among network members; (ii) having a voice in dementia care decisions; and (iii) participating in care, social, and work activities. This study contributes evidence that challenges the myth of the idyllic nature of rural places. Findings revealed the diversity of lived experiences within dementia care network members who described both positive (e.g., close community ties, life-long work opportunities) and negative (e.g., stigma of dementia, dangers of rural setting) aspects of the link between living in a rural setting and living with dementia.

Background: In Canada, one in five women lives in a rural area. These rural women often experience different health challenges than urban women, including lower life expectancy, higher rates of disability and cancer, fewer available health care resources and greater distances to access health care services. Nurse practitioners [NPs] provide important primary health care [PHC] services to rural women. Research Objective: The purpose of this research study was to explore rural women’s experiences with primary health care nurse practitioners [PHCNPs]. Method and Sample: In-depth, face-to-face interviews using interpretive description methodology were conducted with nine rural women, aged 18-80, who used NP services in rural southwest Ontario, Canada. Results: The participants in the study particularly appreciated the nursing knowledge of the NP, the time the NPs spent with them, and the thoroughness of the care provided by NPs. These foundational elements of the participants’ experiences with rural NPs created a sense of trust and respect, which lead to a collaborative partnership between the NP and the rural women. Conclusions: Results of this study suggest that these rural women were overwhelmingly satisfied with the care provided by NPs. In particular, they valued the collaborative partnership with the NP. These findings have important implications for rural health care practice, policy, and education.

Context: Examination of factors related to the retention or voluntary turnover of Registered Nurses (RNs) has mainly focused on urban, acute care settings. Purpose: This paper explored predictors of intent to leave (ITL) a nursing position in all rural and remote practice settings in Canada. Based on the conceptual framework developed for this project, potential predictors of ITL were related to the individual RN worker, the workplace, the community context, and satisfaction related to both the workplace and the community(s) within which the RN lived and worked. Methods: A national cross-sectional mail survey of RNs in rural and remote Canada provided the data (n = 3,051) for the logistic regression analysis of predictors of ITL. Findings: We found that RNs were more likely to plan to leave their nursing position within the next 12 months if they: were male, reported higher perceived stress, did not have dependent children or relatives, had higher education, were employed by their primary agency for a shorter time, had lower community satisfaction, had greater dissatisfaction with job scheduling, had lower satisfaction with their autonomy in the workplace, were required to be on call, performed advanced decisions or practice, and worked in a remote setting. Conclusions: The statistical evidence for predictors of ITL supported our framework with determinants related to the individual, the workplace, the community, and satisfaction levels. The importance of community makes this framework uniquely relevant to the rural health context. Our findings should guide policy makers and employers in developing retention strategies.

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.

The increasing prevalence of dementia in older adults will increase the demands for care from families and the health care system. Caring for a relative with dementia is often viewed as burdensome and stressful in nature; however, of late, attention has been given to the positive aspects of the caregiving journey. The purpose of this article is to discuss the qualitative findings related to the positive aspects of family caregiving from a mixed methods study. A strengths-based perspective was used in the secondary analysis of six focus groups (N = 36) and three personal interview transcripts of family caregivers to persons with dementia. Findings reveal that family caregivers can view their role as an opportunity to give back, to discover personal strengths, and to become closer to the care receiver. The results suggest that identifying and mobilizing caregiver strengths can be an effective strategy for supporting family caregivers in their role.

With the aging of the population, especially in Canadian rural areas, providing home care services will be particularly challenging as care is needed by increasingly vulnerable rural older adults in increasingly vulnerable rural settings with fewer services, supports, and caregivers. The purpose of this paper is to present examples of the federal (e.g., First Nations and Inuit Home and Community Care) and provincial (e.g., Ontario's Community Care Access Centres) home care policy context in which Canadian home care is provided, to identify the challenges faced by home care providers in meeting the needs of rural residents, and to offer solutions to these challenges. The most pressing challenges in aging rural settings are to ensure effective access to quality health care services and to address the shortage of home care providers, especially registered nurses. Provincial and federal home care models would be enhanced by an integrative model of continuing care and a national home care framework that would address the broader funding and human resource issues. Other uniquely rural recruitment and retention strategies are suggested such as maximizing the "fit" between the home care provider's attributes and the needs and expectations of the rural community. Sufficient public funding and resources for rural and remote home care programs are needed to develop and implement (1) the expanded role of case managers; (2) health care teams that include both professionals and paraprofessionals; (3) standardized assessment tools and reporting systems; (4) innovative use and training in the use of technology; and (5) partnerships that optimize resources and build support networks for rural home care providers, clients, and family and friend caregivers.

Little attention has been given to the perceptions of formal care providers on the nature and quality of home- and community-based dementia care. The purpose of this descriptive interpretive research was to explore formal care providers' perceptions of their experiences with Canadian home- and community-based dementia care. Participants within three personal interviews and six focus groups (n = 41) included nurses, social workers, therapists, home care aides, and Alzheimer Society personnel (front line/management) in rural and urban areas of Saskatchewan (n = 16), Manitoba (n = 20), and Ontario (n = 8). Two overarching thematic categories, Service Availability and Service Acceptability, emerged from the data analysis. Subthemes of availability were identified as: (a) challenges of service availability, including service wait lists, lack of home care provider training, lack of community-based dementia care infrastructure, and sociocultural and geographic barriers to accessing dementia services; and (b) essential facilitators of availability, including service infrastructure, service bridging, and agency partnerships to form coordinated care systems. Subthemes of acceptability were revealed as: (a) essential components of dementia care, including provision of comprehensive personal care and the use of dementia care professional practice knowledge within a home care setting; and (b) service challenges, including inadequate service time for the physical care and socioemotional support of the client and family caregiver, caregiver and formal provider difficulty with navigation of a fragmented care system, lack of system coordination, and financial costs of services. Essential, integrated dementia care could be established by listening to the "voices of formal care providers," thereby decreasing dementia care costs and increasing the quality of life for those with dementia, and their family caregivers.

This article presents a participatory action knowledge translation (PAKT) framework for creating a learning organization to implement and sustain evidence-based practice in health services. Developed and piloted in the home care sector in Ontario, Canada, the PAKT framework inextricably intertwines organizational, team and individual effort in a never-ending cyclical process of refining evidence-based practice, overcoming fragmented, hierarchical bureaucratic functioning by evolving as a learning organization. The process reflects Giddens' (1982, 1984, 1991) structuration theory. Participants combine bottom-up pull in decision-making, organizational leader push toward evidence-based practice and social interaction to create knowledge that integrates research evidence with tacit understanding and experience, thereby refining evidence-based practice. The PAKT approach makes organizational commitment to knowledge translation visible, undoes bureaucratized hierarchical relationships, fragmented work effort and entrenched work patterns, and creates an opportunity for all involved to question the status quo and move toward more evidence-based practice. Managers are positioned to influence the accommodation of externally imposed policies and system trends, as well as internal cultural and structural attributes, resource considerations, policies and priorities. The costs of knowledge translation are accounted as a 'need to have' part of service delivery, rather than 'added-on' staff education. The approach, however, requires time, effort and belief in service providers' ability and willingness to integrate their experiential and tacit knowledge and judgement with research evidence.

Background: Practising physicians frequently seek advice on the most effective interventions for dementia. In this article, we provide practical guidance on nonpharmacologic and pharmacologic interventions for the management of mild to moderate dementia based on recommendations from the Third Canadian Consensus Conference on the Diagnosis and Treatment of Dementia. Methods: We developed evidence-based guidelines using systematic literature searches, with specific criteria for the selection and quality assessment of articles, and a clear and transparent decision-making process. We selected articles published from January 1996 to December 2005 that dealt with the management of mild to moderate stages of Alzheimer disease and other forms of dementia. Recommendations based on the literature review were drafted and voted on. Consensus required 80% or more agreement by participants. Subsequent to the conference, we searched for additional articles published from January 2006 to April 2008 using the same major keywords and secondary search terms. We graded the strength of the evidence using the criteria of the Canadian Task Force on Preventive Health Care. Results: We identified 1615 articles, of which 954 were selected for further study. From a synthesis of the evidence in these studies, we made 48 recommendations for the management of mild to moderate dementia (28) and dementia with a cerebrovascular component (8) as well as recommendations for addressing ethical issues (e.g., disclosure of the diagnosis) (12). The updated literature review did not change these recommendations. An exercise program is recommended for patients with mild to moderate dementia. Physicians should decide whether to prescribe a cholinesterase inhibitor on an individual basis, balancing anticipated benefits with the potential for harm. For mild mood and behavioural concerns, nonpharmacologic approaches should be considered first. Interpretation: Although the available therapies for dementia can help with the management of symptoms, there is a need to develop more effective interventions.

Beliefs about the causes of events have implications for emotional reactions, distress, expectations for the future, and behavioral responses. In this article we report on two issues: the organizational context that contributes to nursing aide (NA) assault and reporting, and serendipitous findings that arose from investigating unexpected response rates to a survey. Data were collected in 11 rural nursing homes using a structured prospective event-reporting diary to collect detailed information about incidents of physical aggression, followed by focus groups to further explore NAs' perceptions of these events. Here we report on analysis of 19 focus groups conducted with 138 NAs. Participants described organizational-level factors that constrained their practice, affected their interactions with residents, and created a context that put them at risk for physical assault. These factors also affected their willingness to provide written documentation about aggressive incidents. The key issues were frustration at being blamed for causing aggression, lack of action to address the problem, and a desire for respect and involvement in decision making. Organizational changes are needed to modify the contextual factors contributing to assault risk. Researchers must be willing to modify study designs to more fully understand the nature of the problem studied.

Objective: The objective of this analysis was to identify the meaning of rurality for registered nurses (RNs) practising in rural and remote Canada. Setting and design: An existing Statistics Canada definition was used to stratify Canada's 10 provinces into urban and rural areas. As part of a national multi-method study, a random sample of RNs in these rural strata, plus all RNs working in outpost settings and northern territories, were surveyed concerning the nature of nursing practice. Content analysis was used to identify themes from an open-ended question: ‘How do you define rural/remote?’ Refinement of the themes was conducted by the survey team and credibility was supported through investigator triangulation. Participants: Of the 3933 RNs who responded to the survey (68% response rate), 3412 provided a definition of rural/remote. A subsample of 1285 RNs was used for detailed thematic analysis because these respondents provided definitions with a clear referent to rural and/or to remote; the remaining sample was used for verification of themes. Results: Four defining themes were identified by RNs for both rural and remote: community characteristics, geographical location, health human and technical resources, and nursing practice characteristics. Conclusions: The themes can be used as content domains or dimensions of rurality to improve our understanding of how to describe rural communities, including geographical location and nursing practice, from the perspective of RNs.

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. Electronic supplementary material The online version of this article (doi:10.1186/s12877-015-0075-3) contains supplementary material, which is available to authorized users.

Systematic reviews assist nurses, other health care providers, decision makers, and consumers in managing the explosion of health care information by synthesizing valid data and reporting the effects of interventions. Nurses are increasingly using systematic reviews to guide their practice and develop policy. The purpose of the article is to outline the steps involved in conducting a systematic review with examples taken from a systematic review titled “Strategies to Manage the Behavioral Symptoms Associated With Alzheimer’s Disease.” The steps of a systematic review include: (a) formulating a well-defined question, (b) developing relevance and validity tools, (c) conducting a comprehensive search to retrieve published and unpublished reports, (d) assessing the reports using relevance and validity tools, (e) data extraction, (f) synthesis of the findings, and (g) report writing. Understanding the steps involved in a systematic review will assist nurses in critically appraising reviews and in conducting their own reviews.

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.

Using data from a sample of 169 patients, this study evaluates the acceptability and feasibility of telehealth videoconferencing for preclinic assessment and follow-up in an interprofessional memory clinic for rural and remote seniors. Patients and caregivers are seen via telehealth prior to the in-person clinic and followed up at 6 weeks, 12 weeks, 6 months, 1 year, and yearly. Patients are randomly assigned to in-person (standard care) or telehealth for the first follow-up, then alternating between the two modes of treatment, prior to 1-year follow-up. On average, telehealth appointments reduce participants’ travel by 426 km per round trip. Findings show that telehealth coordinators rated 85% of patients and 92% of caregivers as comfortable or very comfortable during telehealth. Satisfaction scales completed by patient–caregiver dyads show high satisfaction with telehealth. Follow-up questionnaires reveal similar satisfaction with telehealth and in-person appointments, but telehealth is rated as significantly more convenient. Predictors of discontinuing follow-up are greater distance to telehealth, old-age patient, lower telehealth satisfaction, and lower caregiver burden.