Rural Dementia Care Research Articles

A stakeholder engagement strategy for an ongoing research program in rural dementia care: Stakeholder and researcher perspectives.

Participatory research approaches have developed in response to the growing emphasis on translation of research evidence into practice. However, there are few published examples of stakeholder engagement strategies, and little guidance specific to larger ongoing research programs or those with a rural focus. This paper describes the evolution, structure, and processes of an annual Rural Dementia Summit launched in 2008 as an engagement strategy for the Rural Dementia Action Research (RaDAR) program and ongoing for more than 10 years; and reports findings from a parallel mixed-methods study that includes stakeholder and researcher perspectives on the Summit's value and impact. Twelve years of stakeholder evaluations were analyzed. Rating scale data were summarized with descriptive statistics; open-ended questions were analyzed using an inductive thematic analysis. A thematic analysis was also used to analyze interviews with RaDAR researchers. Rating scale data showed high stakeholder satisfaction with all aspects of the Summit. Five themes were identified in the qualitative data: hearing diverse perspectives, building connections, collaborating for change, developing research and practice capacity, and leaving recharged. Five themes were identified in the researcher data: impact on development as a researcher, understanding stakeholder needs, informing research design, deepening commitment to rural dementia research, and building a culture of engagement. These findings reflect the key principles and impacts of stakeholder engagement reported in the literature. Additional findings include the value stakeholders place on connecting with stakeholders from diverse backgrounds, how the Summit was revitalizing, and how it developed stakeholder capacity to support change in their communities. Findings indicate that the Summit has developed into a community of practice where people with a common interest come together to learn and collaborate to improve rural dementia care. The Summit's success and sustainability are linked to RaDAR's responsiveness to stakeholder needs, the trust that has been established, and the value that stakeholders and researchers find in their participation.

Remote and Rural Dementia Care: Policy, Research and Practice, Anthea Innes, Debra Morgan, and Jane Farmer (eds)

Remote and Rural Dementia Care: Policy, Research and Practice, Anthea Innes, Debra Morgan, and Jane Farmer (eds)

Telegerontology as a Novel Approach to Address Health and Safety by Supporting Community-Based Rural Dementia Care Triads: Randomized Controlled Trial Protocol.

BackgroundTelegerontology is an approach using videoconferencing to connect an interdisciplinary team in a regional specialty center to patients in rural communities, which is becoming increasingly practical for addressing current limitations in rural community-based dementia care.ObjectiveUsing the remotely-delivered expertise of the Telegerontology dementia care team, we aim to enhance the caregiver/patient/physician triad and thereby provide the necessary support for the person with dementia to “age in place.”MethodsThis is a cluster randomized feasibility trial with four rural regions in the province of Newfoundland and Labrador, Canada (2 regions randomly assigned to “intervention” and 2 to “control”). The study population includes 22 “dementia triads” that consist of a community-dwelling older Canadian with moderate to late dementia, their family caregivers, and their Primary Care Physician (PCP). Over the 6-month active study period, all participants will be provided an iPad. The intervention is intended as an adjunct to existing PCP care, consisting of weekly Skype-based videoconferencing calls with the Telegerontology physician, and other team members as needed (occupational therapist, physical therapist etc). Control participants receive usual community-based dementia care with their PCP. A baseline (pre-) assessment will be performed during a home visit with the study team. Post intervention, 6- and 12-month follow-up assessments will be collected remotely using specialized dementia monitoring applications and Skype calls. Primary outcomes include admission to long-term care, falls, emergency room visits, hospital stays, and caregiver burden.ResultsResults will be available in March of 2018.ConclusionsResults from this study will demonstrate a novel approach to dementia care that has the potential to impact both rural PCPs, family caregivers, and people with dementia, as well as provide evidence for the utility of Telegerontology in models of eHealth-based care.

The dynamics of voluntarism in rural dementia care

In this article, we contribute to the social sciences literature on voluntarism by examining the dynamics of voluntary service provision for people living with dementia in rural settings. Although volunteer-based organizations provide community support services across a range of Western countries, little attention has been directed towards understanding the organization and actions of volunteers and voluntarism in dementia care. To address this gap, we conducted a case study of Alzheimer support organizations in Ontario, Canada, using questionnaires with service providers (N=20) and semi-structured interviews with people with dementia (N=46) and partners in care (N=43). In our analysis, we identify challenges related to increasing demands for support, partner relations, reaching rural communities, a lack of early stage supports, a lack of volunteers for programs that families have requested, and loss of volunteers in programs families depended on. Moreover, we argue that the current model of voluntary sector service provision for people living with dementia is unevenly developed and potentially unsustainable.

Rural and remote dementia care challenges and needs: perspectives of formal and informal care providers residing in Saskatchewan, Canada

Rural and remote settings pose particular healthcare and service delivery challenges. Providing appropriate care and support for individuals with dementia and their families living in these communities is especially difficult, and can only be accomplished when the needs of care providers and the context and complexity of care provision are understood. This paper describes formal and informal caregivers' perceptions of the challenges and needs in providing care and support for individuals with dementia living in rural and remote areas of Saskatchewan, Canada. A mixed-methods exploratory approach was used to examine caregivers' needs. This research was a component of a broader process evaluation designed to inform the initial and ongoing development of a community-based participatory research program in rural dementia care, which included the development of the Rural and Remote Memory Clinic (RRMC). Four approaches were used for data collection and analyses: (1) thematic analysis of consultation meetings with rural healthcare providers: documented discussions from consultation meetings that occurred in 2003-2004 with rural physicians and healthcare providers regarding plans for a new RRMC were analysed thematically; (2) telephone and mail questionnaires: consultation meeting participants completed a subsequent telephone or mail questionnaire (2003-2004) that was analysed descriptively; (3) thematic analysis of referral letters to the Rural and Remote Memory Clinic: physician referral letters over a five-year period (2003-2008) were analysed descriptively and thematically; and (4) examination of family caregiver satisfaction: four specific baseline questionnaire questions completed by family caregivers (2007-2010) were analysed descriptively and thematically. Both physician and non-physician healthcare providers identified increased facilities and care programs as needs. Physicians were much more likely than other providers to report available support services for patients and families as adequate. Non-physician providers identified improved services, better coordination of services, travel and travel burden related needs, and staff training and education needs as priorities. Physician needs, as determined via referral letters, included confirmation of diagnosis or treatment, request for further management suggestions, patient or family request, and consultation regarding difficult cases. One-third of informal caregivers expressed not being satisfied with the care received prior to the Rural and Remote Memory Clinic assessment visit, and identified lack of diagnosis and long wait times for services as key issues. Delivering services and providing care and support for individuals with dementia living in rural and remote communities are especially challenging. The need for increased extent of services was a commonality among formal and informal caregivers. Primary care physicians may seek confirmation of their diagnosis or may need assistance when dealing with difficult aspects of care, as identified by referral letters. Differences between the needs identified via referral letters and questionnaire responses of physicians may be a reflection of the rural or remote context of care provision. Informal caregiver needs were more aligned with non-physician healthcare providers with respect to the need for improved access to additional healthcare professionals and services. The findings have implications for regional policy development that addresses human and other resource shortages.

Who steers the ship? Rural family physicians’ views on collaborative care models for patients with dementia

Little is known about the views of rural family physicians (FPs) regarding collaborative care models for patients with dementia. The study aims were to explore FPs' views regarding this issue, their role in providing dementia care, and the implications of providing dementia care in a rural setting. This study employed an exploratory qualitative design with a sample of 15 FPs. All rural FPs indicated acceptance of collaborative models. The main disadvantages of practicing rural were accessing urban-based health care and related services and a shortage of local health care resources. The primary benefit of practicing rural was FPs' social proximity to patients, families, and some health care workers. Rural FPs provided care for patients with dementia that took into account the emotional and practical needs of caregivers and families. FPs described positive and negative implications of rural dementia care, and all were receptive to models of care that included other health care professionals.

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

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. 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. 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. 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.

“Her World Gets Smaller and Smaller With Nothing To Look Forward To” Dimensions of Social Inclusion and Exclusion Among Rural Dementia Care Networks

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.

Rural families caring for a relative with dementia: barriers to use of formal services

Planning for the care of increasing numbers of elderly persons with dementia has become an urgent health services concern in Canada and elsewhere, yet little is known about the challenges of providing appropriate dementia care in rural areas. A community-based approach was used to obtain input from decision-makers and others to develop the objectives and design for a study of rural dementia care in the province of Saskatchewan, Canada. The resulting study design, which used both qualitative and quantitative methods, was then pilot tested in one rural health district (16,000 km 2, population 20,000). This paper describes the study development process and reports selected findings from focus groups conducted with home care staff and family members, focussing on the theme of low use of formal supportive services such as home care and support groups by family caregivers. Participants identified eight barriers to the use of formal services, described consequences of low service use, and suggested strategies for addressing this concern.