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

Abstract

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.

Negotiating a Labyrinth: experiences of assessment and diagnostic journey in cognitive impairment and dementia

“…As reported by others (Hinton et al ., ; Hutchings et al ., ; Leung et al ., ; Robinson et al ., ; Chrisp et al ., ), participants' accounts in this study suggest that memory problems are the predominant reason for seeking help, and most approached their GP initially. Encounters with GPs were generally positive, contrary to previous criticisms of the attitudes of primary care physicians towards people presenting with self‐reported memory problems or symptoms of cognitive impairment (Bamford et al ., ; Downs et al ., ; Benbow et al ., ).…”

Time to diagnosis in young-onset dementia as compared with late-onset dementia

“…Furthermore, it could be that age does not explain a greater part of the variance because distinct factors related to older age can cause a diagnostic delay in this age group. For example, patients and their relatives as well as general practitioners may be more likely to put down memory problems to ' old age ' in the elderly than in younger people, or attribute them to co-morbidities or medication use (Cahill et al 2006 ;Leung et al 2011).…”

Help-Seeking for Dementia

“…20,25,28,[37][38][39][40] Increased caregiver's burden was also a common factor for increased HS. The most common beliefs mentioned as barriers were: the belief that it is the family's responsibility to care for sick/unwell family members, the belief that dementia is a normal part of aging, 17,28,42,43 and futility of treatment. The most common beliefs mentioned as barriers were: the belief that it is the family's responsibility to care for sick/unwell family members, the belief that dementia is a normal part of aging, 17,28,42,43 and futility of treatment.…”