Nicholas Pimlott

Why health expectations and hopes are different: the development of a conceptual model

Background  In the literature, ‘hope’ has often been thought of as an ideal expectation. However, we believe the classification of hope as a type of expectation is problematic. Although both hopes and expectations are future‐oriented cognitions, expectations are distinct in that they are an individual’s probability‐driven assessment of the most likely outcomes, while hopes are an assessment of the most desirable – but not necessarily the most probable – outcomes.

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 Alzheimers 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 peoples beliefs and attributions about symptoms, may elucidate some of the barriers as well as strategies to promote a timelier dementia diagnosis.

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.

Role expectations in dementia care among family physicians and specialists.

Background The assessment and ongoing management of dementia falls largely on family physicians. This pilot study explored perceived roles and attitudes towards the provision of dementia care from the perspectives of family physicians and specialists. Methods Semi-structured, one-to-one interviews were conducted with six family physicians and six specialists (three geriatric psychiatrists, two geriatricians, and one neurologist) from University of Toronto-affiliated hospitals. Transcripts were subjected to thematic content analysis. Results Physicians’ clinical experience averaged 16 years. Both physician groups acknowledged that family physicians are more confident in diagnosing/treating uncomplicated dementia than a decade ago. They agreed on care management issues that warranted specialist involvement. Driving competency was contentious, and specialists willingly played the “bad cop” to resolve disputes and preserve long-standing therapeutic relationships. While patient/caregiver education and support were deemed essential, most physicians commented that community resources were fragmented and difficult to access. Improving collaboration and communication between physician groups, and clarifying the roles of other multi-disciplinary team members in dementia care were also discussed. Conclusions Future research could further explore physicians’ and other multi-disciplinary members’ perceived roles and responsibilities in dementia care, given that different health-care system-wide dementia care strategies and initiatives are being developed and implemented across Ontario.