Debra Morgan

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 km2, 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.

Diagnosis and treatment of dementia: 5. Nonpharmacologic and pharmacologic therapy for mild to moderate dementia

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.

Job strain among staff of rural nursing homes: A comparison of nurses, aides, and activity workers

Caring for growing numbers of residents with Alzheimer’s disease and related dementias increases the potential for stress among nursing home staff. To better understand occupational stress among caregivers in rural nursing homes, the authors studied differences in job strain among registered nurses, nursing aides, and activity workers. The authors discuss data from their survey questionnaires and focus group interviews with staff, providing insight into job strain and possible intervention strategies to improve the work environment.

Improving access to dementia care: Development and evaluation of a rural and remote memory clinic

The availability, accessibility and acceptability of services are critical factors in rural health service delivery. In Canada, the aging population and the consequent increase in prevalence of dementia challenge the ability of many rural communities to provide specialized dementia care. This paper describes the development, operation and evaluation of an interdisciplinary memory clinic designed to improve access to diagnosis and management of early stage dementia for older persons living in rural and remote areas in the Canadian province of Saskatchewan. We describe the clinic structure, processes and clinical assessment, as well as the evaluation research design and instruments. Finally, we report the demographic characteristics and geographic distribution of individuals referred during the first three years.

The Positive Aspects of the Caregiving Journey With Dementia: Using a Strengths-Based Perspective to Reveal Opportunities

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.

Management of mild to moderate Alzheimer’s disease and dementia

The authors were charged with making a series of evidence‐based recommendations that would provide concrete advice on all aspects of the management of mild to moderate stages of dementia and Alzheimers disease (AD). The recommendations were primarily targeted to primary care physicians practicing in Canada. The assigned topic area did not include either the assessment of a patient with suspected dementia or the prevention of AD and other dementias. An extensive examination of the available literature was conducted. Explicit criteria for grading the strength of recommendations and the level of evidence supporting them were used. The 28 evidence‐based recommendations agreed on are presented in this article.

Diagnosis and treatment of dementia: 4. Approach to management of mild to moderate dementia

Background: The management of mild to moderate dementia presents complex and evolving challenges. Practising physicians are often uncertain about the appropriate approaches to issues such as the disclosure of the diagnosis, driving and caregiver support. In this article, we provide practical guidance on management 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 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. In brief, patients and their families should be informed of the diagnosis. Although the specifics of managing comorbid conditions might require modification, standards of care and treatment targets would not change because of a mild dementia. The use of medications with anticholinergic effects should be minimized. There should be proactive planning for driving cessation, since this will be required at some point in the course of progressive dementia. The patients ability to drive should be determined primarily on the basis of his or her functional abilities. An important aspect of care is supporting the patients primary caregiver. Interpretation: Much has been learned about the care of patients with mild to moderate dementia and the support of their primary caregivers. There is a pressing need for the development, and dissemination, of collaborative systems of care.

The Physical Environment of Special Care Units: Needs of Residents with Dementia from the Perspective of Staff and Family Caregivers

To manage the care of increasing numbers of residents with dementia, many long-term care facilities have created special care units (SCUs) designed to meet the unique needs of this group. This article describes results of the qualitative component of a larger research project examining environment-behavior relationships in dementia care settings. Eighteen in-depth interviews were conducted with 9 staff and 9 family members of SCU residents. Thematic analysis was conducted using grounded theory techniques. Participants described residents’ needs in relation to both the physical and social environments. This article focuses on the five areas of need identified by participants in relation to the physical environment: safety, homelike setting, optimal stimulation, cues, and options for privacy and social interaction.

Dementia care in rural and remote settings: A systematic review of informal/family caregiving

OBJECTIVES The purpose of this review is to critically evaluate the available evidence from the published scientific literature on informal/family dementia care in rural and remote settings to assess the current state of knowledge, identify support implications, and make recommendations for future research. METHODS A systemic review of the literature indexed in ISI Web of Knowledge, PsychInfo, Medline, Healthstar, CINAHL, EMBASE, and Sociological Abstracts was conducted. Data were extracted from papers meeting inclusion criteria: peer-reviewed papers that focused on dementia or Alzheimers Disease (AD), and examined informal or family caregiving in relation to persons with AD or dementia in remote or rural locations. RESULTS The search identified 872 articles for review, reduced to 72 after removing duplicates and articles not meeting inclusion criteria. Of the 72 remaining, 26 are included in this review focusing on informal/family caregiving. A previous review focused on the 46 studies on formal/paid care. Four themes that correspond to the current state of knowledge about rural informal/family dementia caregiving in the 26 included studies were: service use, carer experience, support and education, and rural perceptions of dementia. CONCLUSIONS Despite the growing body of evidence over the 20 years of this review, and the widespread interest in family dementia caregiving generally, much of the research exploring family caregiving in rural areas focuses on the experience, use and barriers to formal service provision. There is limited work examining the experiences of rural caregivers and their education and support needs. More research is needed about the impact of rurality on caregiving and the education and support needs of rural informal family caregivers.

Translating research in elder care: an introduction to a study protocol series

BackgroundThe knowledge translation field is undermined by two interrelated gaps – underdevelopment of the science and limited use of research in health services and health systems decision making. The importance of context in theory development and successful translation of knowledge has been identified in past research. Additionally, examination of knowledge translation in the long-term care (LTC) sector has been seriously neglected, despite the fact that aging is increasingly identified as a priority area in health and health services research.AimsThe aims of this study are: to build knowledge translation theory about the role of organizational context in influencing knowledge use in LTC settings and among regulated and unregulated caregivers, to pilot knowledge translation interventions, and to contribute to enhanced use of new knowledge in LTC.DesignThis is a multi-level and longitudinal program of research comprising two main interrelated projects and a series of pilot studies. An integrated mixed method design will be used, including sequential and simultaneous phases to enable the projects to complement and inform one another. Inferences drawn from the quantitative and qualitative analyses will be merged to create meta-inferences.OutcomesOutcomes will include contributions to (knowledge translation) theory development, progress toward resolution of major conceptual issues in the field, progress toward resolution of methodological problems in the field, and advances in the design of effective knowledge translation strategies. Importantly, a better understanding of the contextual influences on knowledge use in LTC will contribute to improving outcomes for residents and providers in LTC settings.