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.

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.

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.

Knowledge exchange throughout the dementia care journey by Canadian rural community-based health care practitioners, persons with dementia, and their care partners: an interpretive descriptive study.

INTRODUCTION: Accessing, assessing, exchanging, and applying dementia care information can be challenging in rural communities for healthcare practitioners (HCPs), persons with dementia (PWD), and their care partners. The overall purpose of this research was to enable HCPs, care partners, and PWD to use dementia care information more effectively by examining their information needs, how these change over time, and how they access, assess, and apply the knowledge. METHODS: A qualitative interpretive descriptive approach was used. A convenience sample was initially recruited through study collaborators in Southwestern Ontario, followed by purposive sampling. Nine rural dementia care networks consisting of PWD (n = 5), care partners (n = 14), and HCPs (n = 14) were recruited and 80 interviews were conducted at three time points. Transcripts were coded using Lubrosky's thematic analysis. RESULTS: Six stages of the dementia care journey were identified: (1) recognizing the symptoms; (2) receiving a diagnosis; (3) loss of independence; (4) initiating and using home care and respite services; (5) long-term care (LTC) placement; and (6) decisions related to end-of-life care. Rural care partners identified the need for different types of knowledge during each of these critical decision points of the dementia care journey. They accessed information from family members, friends, local organizations, and dementia internet sites. Persons with dementia tended not to identify the need for dementia care information. The HCPs accessed dementia care information from their own organization, other organizations, and internet sites. Care partners and HCPs assessed the trustworthiness of the information based on whether the source was a well-known agency or their own organization. Barriers to knowledge exchange included: lack of rural community-based services for dementia care; care partners reluctant to seek help and had limited energy; and lack of integration of dementia-related services and supports. Facilitators of knowledge exchange included: rural care partners with healthcare experience who were actively seeking information; development of trusting relationships between HCPs, care partners, and PWD; and formal mechanisms for exchanging information within and across rural community-based organizations. METHODS: This research illustrates the stages of the dementia care journey, and the types of information typically needed, accessed, assessed, and applied at each stage. Healthcare practitioners can use these findings to support rural care partners in navigating their dementia care journey. Support is needed as care partners often do not have the time, energy, skills, or knowledge to seek out dementia care information independently. In addition, PWD typically do not recognize the need for this knowledge, leaving care partners potentially isolated in this journey. Developing formal linkages within and across rural organizations will facilitate knowledge exchange and the delivery of cost-effective, quality dementia care. However, additional rural community-based resources are urgently needed to implement these recommendations. This may require a redistribution of resources from acute care to rural community care.

Formal dementia care among first nations in southwestern Ontario.

This article explores how dementia care is provided to First Nations communities in southwestern Ontario. Data were collected through in-depth interviews with health care providers and analysed using a constructivist grounded-theory methodology. Two interrelated frameworks for understanding dementia care were identified: a care delivery framework and a knowledge framework. The care delivery framework identified care goals, care elements being provided, care barriers, and strategies and solutions to deliver care and overcome barriers. The knowledge framework defined four groups of knowledge stakeholders: persons with dementia, informal care providers, formal care providers, and the First Nations community. It identified the knowledge each stakeholder held or needed and processes of sharing - or failing to share - knowledge in dementia care. Several barriers, many created by a lack of knowledge, negatively impacted dementia care. However, health care professionals had effective strategies for providing care, designed to overcome barriers and which encompassed elements of knowledge sharing.

Nursing aide reports of combative behavior by residents with dementia: results from a detailed prospective incident diary.

OBJECTIVES: This study examined nursing aides' (NAs) perspectives of specific incidents of combative behavior from nursing home residents with dementia, particularly their attributions for the behaviors. DESIGN: This research is part of a larger mixed-method study exploring combative behavior as experienced by NAs. The data for this component were collected using a cross-sectional survey design. NAs used a prospective event-reporting log or "diary" to record consecutive incidents of combative resident behaviors. SETTING: Eleven rural nursing homes located in a mid-Western Canadian province. PARTICIPANTS: Eighty-three full-time, part-time, and casual NAs. MEASUREMENTS: NAs used the diary instrument to document details of each incident of combative behavior over a 144-hour period. Findings from the diaries were explored in subsequent focus groups (reported elsewhere). RESULTS: The 83 NAs reported 409 incidents linked to residents with dementia, with a range of 1 to 28 incidents per aide. The frequency of incidents in the preceding month was reported as follows: none (11.1%), 1-5 times (58.7%), 6-10 times (11.1%), more than 10 times (19.0%). Most incidents occurred in residents' rooms (65%) during personal care, with the most frequent behaviors reported as slapping, squeezing, punching or hitting, and shoving. The main perceived causes of the behavior were cognitive impairment and residents not wanting care. NAs reported they could control or modify the cause in only 3% of incidents, and they were not optimistic about preventing future combative behaviors. They continued to provide care in 89% of incidents. CONCLUSION: In the diaries, NAs identified resident-related factors (cognitive impairment and not wanting care) as the main causes of combative behavior, and they reported having no control over these factors. In the focus groups conducted to explore diary findings, NAs reported system-level factors, also beyond their control, which affected their practices and increased their risk of exposure to combative behavior. Taken together, the results of this research program suggest a need for a broad multifaceted strategy aimed at addressing the modifiable risk factors, which includes recognizing NAs as equal partners in a team process backed by strong organizational support and commitment.

Depression in nurses.

Patient outcomes are reliant on nursing calibre, which in turn is dependent on the health of work environments and practice settings. The National Survey of the Work and Health of Nurses (NSWHN) examined a broad spectrum of nurses' work and health, with one finding of particular concern: Nurses have a higher rate of depression (1 in 10) than their counterparts (as found in other national surveys). This secondary analysis of the data focused on the outcome of depression in a subsample of the nurses surveyed by the NSWHN and examined associations between depression and work-related variables such as job strain, role overload, respect, social and employer supports, and nurses' perception of the quality of the care they provided. A multivariate logistic regression found an increased risk of depression in nurses experiencing job strain, role overload, and a lack of respect.

Taking the lead: community pharmacists' perception of their role potential within the primary care team.

BACKGROUND: Patient-focused care provided by an interprofessional team has long been presented as the preferred method of primary care delivery. Community pharmacists should and can provide leadership for many clinical and managerial activities within the primary care team. OBJECTIVE: To determine the extent to which community pharmacists are prepared to be members of the health care team, and to assess their support for general expansion of clinical responsibilities. METHODS: A mail questionnaire (in either English or French) was sent to 1500 community pharmacists between February and April 2004. Respondents were asked to indicate the necessity of pharmacy leadership for a range of clinical and managerial services associated with a primary care team. Respondents were also asked to indicate the extent to which they should be more involved in drug therapy selection and monitoring, as well as assuming greater responsibility for treating both minor and chronic illnesses. RESULTS: The response rate was 35.2% (470/1337) with the highest response rate in the Prairie provinces (40.6%) and the lowest in Quebec (24.4%). Most pharmacists in the study did not advocate a strong leadership role for non-discipline-specific clinical and managerial activities. Most of them indicated that community pharmacists should be more involved in selecting (69.9%) and monitoring (81.0%) drug therapy, and be more responsible for treating minor illnesses (72.0%). Support for more responsibility declined to 50% for chronic illnesses. CONCLUSIONS: The findings of the study suggest substantial variability among pharmacists in their perception of the need for pharmacy leadership across 16 clinical and managerial activities.

Canadian home care policy and practice in rural and remote settings: challenges and solutions.

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.

Formal care providers' perceptions of home- and community-based services: informing dementia care quality.

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.

Availability and acceptability of Canadian home and community-based services: perspectives of family caregivers of persons with dementia.

Thirty-five percent of Canadians over the age of 85 have dementia, and up to 90% of their home care is provided by family and friends. The purpose of this study was to explore the use and satisfaction with home and community-based services for persons with dementia from the perspectives of family caregivers. The study was conducted using an interpretive, descriptive, qualitative approach. Six focus groups (N = 36) and three personal interviews were conducted with rural and urban caregivers in Ontario, Manitoba, and Saskatchewan, Canada. Using Lubrosky's (1994) thematic analysis, the overarching themes identified were availability and acceptability of services. The findings suggest a need for an integrated continuing care model that includes the person living with dementia and their family caregivers as partners in care, addresses all of the determinants of health, and embraces sensitivity, diversity, flexibility, and supportive services to enhance the availability and acceptability of Canadian home and community-based services.

Gender differences in use and availability of home and community-based services for people with dementia.

The purpose was to examine the use and availability of home and community-based services by men and women with dementia using data from the 2003 Canadian Community Health Survey. Variables of interest were based on the Andersen and Newman model and included predisposing, enabling, need, and use of health service variables, perceived unmet health and home care needs, and availability of home and community-based health services. Women reported better health and received more supportive care yet had more unmet home care needs than men.Thus, the caregivers of men with dementia (often their wives) were particularly vulnerable to negative outcomes, as their care recipients had poorer health yet received fewer services. These gender differences should be considered when policies and programs are developed, the needs of care recipients and caregivers are assessed, and services are provided.

Taking the hit: focusing on caregiver "error" masks organizational-level risk factors for nursing aide assault.

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.

Rural and urban Canadians with dementia: use of health care services.

The purpose of this research was to examine the characteristics of older Canadians with dementia (compared to those without dementia), their use of health care services, and the impact of place (rural/urban) on use of services. Andersen and Newman's Behavioural Model of Health Services Use (1973) guided the study. A cross-sectional design used data from the Canadian Community Health Survey (CCHS) Cycle 1.1 (N=49,995 older Canadians; those with dementia=313). Results indicated that among Canadian females between the ages of 50 and 64, those with dementia were more likely than those without dementia to live in rural areas. Among females 80 years of age and over, those with dementia had higher levels of education and income than those without dementia. In addition, a higher proportion of white than of visible minority Canadians was afflicted with dementia. The results further suggest that Canadians with dementia primarily required support services and that they were more likely than persons without dementia to report that their health care needs were unmet. It is recommended that publicly funded national home care programs be expanded to ensure that the supportive services needed by this population are available.

Interprofessional health care teams: attitudes and environmental factors associated with participation by community pharmacists.

The purpose of this study was to determine whether community pharmacists are prepared to assume a more active role as members of the primary health care team. A secondary objective was to develop multi-items scales for future studies involving pharmacists, as well as other health professions. This paper reports on rates of participation by community pharmacists as members of interprofessional health care teams, the extent to which this participation was related to pharmacists' attitudes about their preparedness for this role, their relationship with physicians, and their assessment of potential barriers to interprofessional teamwork within their practice setting. A mail questionnaire was sent to community pharmacists across Canada between February and April, 2004. The overall response rate was 35.2% (470/1337) with the highest response rate in the Prairie Provinces (40.6%) and the lowest in Quebec (24.4%). Pharmacists on teams were more likely to agree their training and skills were sufficient to participate, and to report good relations with physicians. Pharmacists on teams were more likely to agree there was more opportunity to meet and get to know other health disciplines, and to see teamwork as part of their role. They were also more likely to agree physicians wanted their input, and less likely to see other disciplines as being too protective of their professional "turf". Pharmacists on teams did not differ from those not on teams in rating lack of time, bad past experiences with teamwork, financial reimbursement or proximity to other health care workers as barriers to being a member of a community-based primary care team.