Family physicians and dementia in Canada: Part 1. Clinical practice guidelines: awareness, attitudes, and opinions.

OBJECTIVE: To assess Canadian family physicians' awareness of, attitudes toward, and use of the 1999 Canadian Consensus Conference on Dementia (CCCD) clinical practice guidelines (CPGs); to explore the barriers and enablers to implementing dementia CPGs in clinical practice; and to identify more effective strategies for future dementia guideline development and dissemination. DESIGN: Qualitative study using focus groups. SETTING: Academic family practice clinics in Calgary, Alta, Ottawa, Ont, and Toronto, Ont. PARTICIPANTS: Eighteen family physicians. METHODS: Using a semistructured interview guide, we conducted 4 qualitative focus groups of 4 to 6 family physicians whose practices we had audited in a previous study. Transcripts were coded using an inductive data analytic strategy, and categories and themes were identified and described using the principles of thematic analysis. MAIN FINDINGS: Four major themes emerged from the focus group discussions. Family physicians 1) were minimally aware of the existence and the detailed contents of the CCCD guidelines; 2) had strong views about the purposes of guidelines in general; 3) expressed strong concerns about the role of the pharmaceutical industry in the development of such guidelines; and 4) had many ideas to improve future dementia guidelines and CPGs in general. CONCLUSION: Family physicians were minimally aware of the 1999 CCCD CPGs. They acknowledged, however, the potential of future CPGs to assist them in patient care and offered many strategies to improve the development and dissemination of future dementia guidelines. Future guidelines should more accurately reflect the day-to-day practice experiences and challenges of family physicians, and guideline developers should also be cognizant of family physicians' perceptions that pharmaceutical companies' funding of CPGs undermines the objectivity and credibility of those guidelines.

Family physicians and dementia in Canada: Part 2. Understanding the challenges of dementia care.

OBJECTIVE: To explore the challenges Canadian family physicians face in providing dementia care. DESIGN: Qualitative study using focus groups. SETTING: Academic family practice clinics in Calgary, Alta, Ottawa, Ont, and Toronto, Ont. PARTICIPANTS: Eighteen family physicians. METHODS: We conducted 4 qualitative focus groups of 4 to 6 family physicians whose practices we had audited in a previous study. Focus group transcripts were analyzed using the principles of thematic analysis. MAIN FINDINGS: Five major themes related to the provision of dementia care by family physicians emerged: 1) diagnostic uncertainty; 2) the complexity of dementia; 3) time as a paradox in the provision of dementia care; 4) the importance of patients' families; 5) and familiarity with patients. Participants expressed uncertainty about diagnosing dementia and a strong need for expert verification of diagnoses owing to the complexity of dementia. Time, patients' family members, and familiarity with patients were seen as both barriers and enablers in the provision of dementia care. CONCLUSION: Family physicians face many challenges in providing dementia care. The results of this study and the views of family physicians should be considered in the development and dissemination of future dementia guidelines, as well as by specialist colleagues, policy makers, and those involved in developing continuing physician education about dementia.

Quality of life and Economic Aspects of Community Support Programs for Caregivers of Dementia Patients.

This economic analysis of community programs for caregivers of dementia patients first reviews the clinical data on caregiver stress and the effectiveness of a variety of intervention programs. The authors then discuss issues relevant to the measurement of the true costs of specific community support programs and their impact on the quality of life of caregivers. Using cost data derived from other published studies, the authors conducted a cost-utility analysis using incremental costs per quality-adjusted life-year (QALY) gained. A sensitivity analysis of cost: utility ratios reveals a range from $3,333 (1988 US. dollars) to $28,571 per QALY gained. Although this is comparable to other health care programs, community support programs for caregivers of dementia patients present special challenges for evaluation of outcome.

To tell or not to tell? Professional and lay perspectives on the disclosure of personal health information in community-based dementia care.

Developments in information technology and the ongoing restructuring of health services to increase provision in community settings militate in favour of a streamlining of communications and the exchange of information about patients among health and social care providers. Yet the principles of confidentiality and privacy appear to inhibit this process. In order to explore the practical, ethical, and legal imperatives attendant upon personal health information exchange, we conducted a series of interviews with professional care providers, persons with early-stage dementia, and their family caregivers. The findings indicate some degree of discordance. Professionals reported valuing disclosure both to colleagues and family caregivers on the basis of its being in the patients' best interests. Patients also valued inter-professional exchange, but sought strong control over disclosure to family members. Family caregivers valued being kept informed of the patient's condition, even without the latter's consent. Implications for research and policy are discussed.

Pathways to dementia diagnosis among South Asian Canadians.

Urban centers are increasingly ethnically diverse. However, some visible minorities are less likely than their majority counterparts to seek and receive services and treatment for dementia. This study explored experiences of South Asian Canadians, Canada's largest visible minority group, prior to dementia diagnosis. Six persons with dementia and eight of their family carers described their early perceptions of dementia-related changes, actions taken, including help seeking and diagnosis, and affective responses. Early signs were attributed to aging or personality. Even after cognitive enhancers were prescribed, some respondents continued to believe that the dementia symptoms were 'normal'. Family carers' affective responses may be related to their attributions. Before seeking medical attention, family carers modified physical or social environments because of symptoms. Help seeking was delayed up to four years, even with significant dementia symptoms. Recognition of a health problem was influenced by safety concerns, emergence of new symptoms following trauma, and treatment for other health problems. For some, relatives living outside the home or outside Canada were instrumental in recognizing a problem and convincing family carers and persons with dementia to seek medical attention. The pathway to diagnosis might be easier with outreach to help South Asian immigrants differentiate between normal aging and dementia. Symptom recognition by physicians treating other acute conditions was a portal to dementia services for others. Screening and referral in acute care could result in earlier diagnosis and treatment.

Pathways to diagnosis: exploring the experiences of problem recognition and obtaining a dementia diagnosis among Anglo-Canadians.

Increasing evidence suggests that early diagnosis and management of dementia-related symptoms may improve the quality of life for patients and their families. However, individuals may wait from 1-3 years from the onset of symptoms before receiving a diagnosis. The objective of this qualitative study was to explore the perceptions and experiences of problem recognition, and the process of obtaining a diagnosis among individuals with early-stage dementia and their primary carers. From 2006-2009, six Anglo-Canadians with dementia and seven of their carers were recruited from the Alzheimer's Society of Calgary to participate in semi-structured interviews. Using an inductive, thematic approach to the analysis, five major themes were identified: becoming aware of memory problems, attributing meanings to symptoms, initiating help-seeking, acknowledging the severity of cognitive changes and finally obtaining a definitive diagnosis. Individuals with dementia reported noticing memory difficulties earlier than their carers. However, initial symptoms were perceived as ambiguous, and were normalised and attributed to concurrent health problems. The diagnostic process was typically characterised by multiple visits and interactions with health professionals, and a diagnosis was obtained as more severe cognitive deficits emerged. Throughout the diagnostic pathway, carers played dynamic roles. Carers initially served as a source of encouragement to seek help, but they eventually became actively involved over concerns about alternative diagnoses and illness management. A better understanding of the pre-diagnosis period, and the complex interactions between people's beliefs and attributions about symptoms, may elucidate some of the barriers as well as strategies to promote a timelier dementia diagnosis.

Consumer fraud and the elderly: a review of Canadian challenges and initiatives.

Financial abuse is the most common type of elder abuse. Consumer fraud, a form of financial abuse perpetrated by criminals who do not know the victim, is not well studied. Seniors represent a disproportionate percentage of the victims of consumer fraud. This article reviews the data on the prevalence of consumer fraud (primarily telemarketing scams) in Canada. It examines the reasons why Canadian seniors are targets of fraud. It also describes many unique initiatives developed at the local, provincial and national level in Canada to educate seniors and those who care for them about the types of scams and the risks of fraud.

Psychiatric issues in retrospective challenges of testamentary capacity.

BACKGROUND: Challenges to Wills on the basis of lack of testamentary capacity are likely to increase due to a combination of economic factors, high prevalence of mental disorders in old age and the complexity of many modern families. Geriatric psychiatrists and other experts will be asked to provide expert assessment of the testamentary capacity of individuals whose Wills are being challenged retrospectively. The traditional criteria described in the Banks vs Goodfellow case have been held as the standard for testamentary capacity. However, these criteria may not be comprehensive enough for the coming generation of expert assessors. METHOD: The literature and selected international case law relevant to testamentary capacity were reviewed. Particular focus is placed on the conceptual and empirical approaches to the assessment of complex capacities that may inform the development of specific legal standards. In addition, 25 consecutive medico-legal reports on retrospective testamentary capacity were analyzed according to co-morbid medical and psychiatric disorders as well as psychosocial and behavioural variables. Illustrative case vignettes are included. RESULTS: The typical profile for retrospective challenges to testamentary capacity included a radical change from a previous Will (72%), where undue influence was alleged (56%), in a testator with no biological children (52%), who executed the Will less than a year prior to death (48%). Co-morbid conditions were dementia (40%), alcohol abuse (28%) and other neurological/psychiatric conditions (28%). CONCLUSIONS: While Banks vs Goodfellow continues to provide a sound basis for assessing testamentary (task-specific) capacity, the complexity and subtlety of the issues reflected in these cases highlight the need to go beyond the traditional criteria and assess situation-specific factors. Expert assessors need to determine whether the testator appreciated the consequences of executing or changing a Will, especially when there has been a radical change in the context of a complex or conflictual family environment. Empirical studies addressing the cognitive functions relevant to testamentary capacity and the development of legal standards based on a competency construct may also help to inform retrospective capacity assessments.

Surrogate decision making: special issues in geriatric psychiatry.

Surrogate decision-makers, usually family and friends, are often called on to assist seniors who are incapable of making certain decisions. The literature to date has focused primarily on decisions regarding medical treatment. Less has been written about issues faced by surrogates when making other types of decisions that often arise in the practice of geriatric psychiatry. This article outlines a case relating to personal care decision-making. The discussion focuses on areas that need to be addressed to understand and assist surrogates in making personal care decisions in the future.

Positive aspects of caregiving: rounding out the caregiver experience.

OBJECTIVES: To identify positive aspects of caregiving and examine how they are associated with caregiver outcomes. METHOD: This study used a national sample of caregivers derived from the Canadian Study of Health and Aging (part 2). Two hundred and eighty-nine caregivers caring for seniors living in the community were questioned about their experience of caregiving. Caregivers were asked whether they could identify any positive aspects related to their role, the type of positive aspects and to rate their feelings about caring. Using a conceptual model developed by Noonan and Tennstedt (1997), a staged stepwise multiple regression approach was used factoring the background/contextual variables, stressor variables (3 MS score, ADL limitations), mediator variables (positive aspects of caregiving, number of services used) and outcome variables (depression, burden and self-assessed health measures) into the model. RESULTS: Two hundred and eleven caregivers (73%) could identify at least one specific positive aspect of caregiving. An additional 20 (6.9%) could identify more than one positive aspect. Positive feelings about caring were associated with lower CES-D scores ( p<0.001), lower burden scores ( p<0.001) and better self assessed health ( p<0.001). CONCLUSION: Clinicians should inquire about the positive aspects of caregiving if they are to fully comprehend the caregiver experience and identify risk factors for negative caregiver outcomes.