Dementia Diagnosis Disclosure

Abstract

This paper reports the findings of a descriptive, exploratory, qualitative study of patient and caregiver perspectives of the disclosure of a dementia diagnosis. Data were collected at 3 points in time: (1) the disclosure meeting, (2) patient and caregiver interviews, and (3) focus group interviews. Thirty patient-caregiver dyads participated in the disclosure meetings at the Geriatric Day Hospital at the Ottawa Hospital, Ottawa, Canada. Within a week of the disclosure of diagnosis, 27 (90%) patients and 29 (97%) caregivers were interviewed in their homes, and 12 caregivers participated in 3 focus group interviews within 1 month after the disclosure meeting. Most patients and caregivers said they preferred full disclosure of the diagnosis. Patients expressed satisfaction with the physician providing the diagnosis and with their caregivers being present at the disclosure meeting, however, wanted more information about their condition. Caregivers provided further insight regarding the patient response, and suggested the need to emphasize hope in the face of a difficult diagnosis, the use of progressive disclosure to allow the person (and caregivers) to prepare, and the provision of detail about the disease and its progression.

The lived experience of people newly diagnosed with dementia: A narrative study using a phenomenological approach

“…The findings of this study would therefore parallel the findings of studies [37,38] that people with dementia are often unaware of their condition, pre-diagnosis.The news of a diagnosis of dementia was met with feelings of shock and disbelief and was upsetting for all three women. This study therefore supports previous findings [39][40][41] with regard to a diagnosis of dementia causing emotional distress.…”

Psychosocial Factors That Shape Patient and Carer Experiences of Dementia Diagnosis and Treatment: A Systematic Review of Qualitative Studies

“…It often took a trigger event or tipping point such as a hospitalisation or bereavement [34],[37],[40],[42],[51],[53],[92],[114],[118],[138] before people sought help. Family members often recognised something was wrong before the person with dementia did, and were frequently instrumental in obtaining a diagnosis [32],[40],[41],[45],[54],[72],[88],[115],[129]. There was evidence of greater stigma among minority ethnic populations and evidence that they were less likely to recognise symptoms of dementia as an illness than white individuals, and more likely to ascribe these symptoms to the ageing process [32],[86],[118],[119].…”

“…A desire to preserve a pre-dementia identity sometimes led to people being reluctant to disclose their diagnosis to family or wider social networks [52],[53],[109], which could lead to social isolation [53],[62],[105]. Despite this, some studies suggested that eventually both the individuals with dementia and their carers reached a state of acceptance [36],[45],[88],[91].…”

“…Although diagnosis was often traumatic [38],[50],[51],[62],[152], the validation of suspicions could come as a relief [45],[93],[129]. There was also a proportion of individuals with dementia and carers who continued to consider memory loss insignificant even after diagnosis [51],[93],[119].…”

Patients' attitudes of dementia screening across the Atlantic

“…Experiences related to care coordination, physician-patient relationships, medical errors, use of prescription medications and access to needed care have been identified as common areas that lead to a global perception of dissatisfaction in general health system quality (Blendon et al ., 2003). Similar comparative concerns develop surrounding the acceptance of screening and disclosing a diagnosis of a disease or impairment such as dementia (Brodaty et al ., 1994; Byszewski et al ., 2007; Cahill et al ., 2006; Connell and Gallant, 1996; Domenighetti et al ., 2003). …”