Disclosure of the diagnosis of Alzheimer's disease: caregivers' opinions in a Brazilian sample

Abstract

-Background: Disclosure of the diagnosis of Alzheimer's disease (AD) remains a contentious issue, and has been little studied in developing countries. Objective: To investigate the influence of socio-demographic factors and the experience of being a caregiver on opinion about disclosing AD diagnosis to the patient in a Brazilian sample. Method: Caregivers of 50 AD patients together with 50 control participants that did not have the experience of being a caregiver of AD patient were interviewed using a structured questionnaire. Results: Most of the participants (73.0%) endorsed disclosure of the diagnosis, while caregivers were less prone to disclose (58.0%) than controls (88.0%; p=0.0007). Logistic regression confirmed that only the experience of being a caregiver was associated with a lesser tendency for disclosure endorsement. Conclusion: The majority of participants was in favor of disclosing the diagnosis, but caregivers were less willing to disclose the diagnosis to the AD patient.Key worDS: Alzheimer's disease, diagnosis, disclosure, caregiver, dementia. a revelação do diagnóstico de doença de alzheimer: opiniões de cuidadores em uma amostra brasileiraResumo -Fundamento: A revelação do diagnóstico de doença de Alzheimer (DA) tem sido tema polêmico e pouco estudado em países em desenvolvimento. Objetivo: Investigar a influência de fatores sócio-demográficos e a experiência de ter sido cuidador na opinião sobre a revelação do diagnóstico em uma amostra brasileira. Método: Cuidadores de 50 pacientes com DA e 50 indívíduos controle que não tinham tido experiência como cuidadores de pacientes com DA foram entrevistados com o uso de um questionário estruturado. Resultados: A maioria dos participantes (73,0%) manifestou-se a favor da revelação diagnóstico aos pacientes, mas cuidadores foram menos favoráveis (58,0%) que controles (88,0%; p=0,0007). regressão logística demonstrou que apenas a experiência como cuidador foi associada com menor tendência a apoiar a revelação do diagnóstico. Conclusão: A maioria dos participantes foi a favor da revelação do diagnóstico ao paciente, mas aqueles com experiência como cuidadores de pacientes com DA foram menos favoráveis.PALAvrAS-ChAve: doença de Alzheimer, diagnóstico, revelação, cuidador, demência.

Criteria for the diagnosis of Alzheimer's disease: Recommendations of the Scientific Department of Cognitive Neurology and Aging of the Brazilian Academy of Neurology

“… 19 Family members and physicians not wishing to reveal the diagnosis more frequently would like such a diagnosis revealed to themselves if they were the patient (90% and 76.8%, respectively). 18 , 19 Family members with a higher level of education 18 and doctors with longer periods of training 19 appear to be more in favor of not revealing the diagnosis.…”

“…The percentage of family members of patients with AD who would like to have the diagnosis revealed to the patient ranges from 17 to 76% depending on the country of study. 17 In Brazil, 58% of family members of patients were found to be in favor of revealing the diagnosis, 18 which is routinely done by 44.7% of doctors. 19 Family members and physicians not wishing to reveal the diagnosis more frequently would like such a diagnosis revealed to themselves if they were the patient (90% and 76.8%, respectively).…”

Preferences regarding disclosure of a diagnosis of dementia: a systematic review

“…The studies investigating the preferences of relatives of dementia patients if they were to develop dementia (n = 8) showed that 58% to 98% favored disclosure (Maguire et al, 1996;Heal and Husband, 1998;Mimura, 2003;Pinner and Bouman, 2003;Lin et al, 2005;Shimizu et al, 2008;Mormont et al, 2012;). The pooled percentage in favor was 85%.…”

Disclosing a diagnosis of dementia: a background to the phenomenon

“…A study conducted in Brazil (Shimizu et al 2008) found that only 58 per cent of carers of people with dementia believed the diagnosis should be disclosed. In a similar study in Taiwan, this number was 76 per cent (Lin et al 2005) and in a study in Finland (Laakkonen et al 2008), 97 per cent of carers believed diagnosis should be disclosed to their relative.…”