Family members' attitudes toward telling the patient with Alzheimer's disease their diagnosis

Maguire, Conor; Kirby, Michael; Coen, Robert F.; Coakley, Davis; Lawlor, Brian A.; O’Neill, Desmond

doi:10.1136/bmj.313.7056.529

Cited by 122 publications

(100 citation statements)

References 5 publications

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“…A primary concern is the potential for disclosure to precipitate a severe depressive episode in the patient, thus compounding an already d i fficult caregiving situation for the family. Maguire and associates 5 confirmed this to be a salient concern in families of dementia patients. The authors surveyed 100 consecutive family members accompanying patients diagnosed with AD about whether they wished the patient to be told about the diagnosis.…”

Section: The Canadian Journal Of Neurological Sciencesmentioning

confidence: 83%

Disclosing a Diagnosis of Alzheimer’s Disease: Patient and Family Experiences

Smith

Beattie

2001

Can. J. Neurol. Sci.

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Suppl. 1 -S67Disclosing a diagnosis of A l z h e i m e r's disease (AD) to patients and family members is a complex event that requires the physician to consider the potential for psychosocial harm and the patient's moral and legal rights to receive the diagnosis. 1,2 Recent evidence about disclosure practices indicates that physicians are beginning to acknowledge these rights. In a random survey of physicians in British Columbia, Bell-Irving, Donnelly and Berkowitz found that 90% of respondents made it their practice to communicate the diagnosis of dementia to the patient in some ABSTRACT: Background: Informing patients and families about the diagnosis of Alzheimer's disease (AD) is a complex ethical and practical issue. This qualitative study explores the psychosocial impact of disclosing a diagnosis of AD on patients and family members. Methods: This study identified 14 patients and their accompanying family members undergoing a multidisciplinary assessment for dementia at an outpatient clinic for AD and related disorders. Of the group, three patients had probable AD and five had possible AD as per NINCDS-ADRDAcriteria. Six patients were not demented as per DSM IIIR criteria. Disclosure of diagnosis occurred, in a family conference, within six to eight weeks of the assessment. Data collection methods included observation of the assessment and the family conference as well as in-depth home interviews with family members and with each patient whenever feasible. The interviews were transcribed verbatim and coded for recurrent themes. Results: A total of 40 individuals across 14 families participated in this study. Only two families chose not to have the patient attend the family conference. The disclosure of a diagnosis of probable AD brought on an experience of relief in three families, marking the end of a lengthy period of confusion about the nature of memory problems. Patients diagnosed with possible AD and their families interpreted how indicative the diagnosis was of the presence of the disease with varying degrees of certainty depending on pre-assessment beliefs about the cause of memory problems. In the group diagnosed as not demented, four patients had complaints of forgetfulness likely related to minor depression. The disclosure of a diagnosis of no dementia did not produce the anticipated relief. Two patients continued to believe their memory problems were caused by the early onset of AD or some other "organic" problem. Interpretation: This study reveals that disclosure of the diagnosis of AD to patients and family members is generally beneficial but that there are variations in the understanding of the diagnostic information, particularly in instances where the assessment results are ambiguous.

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Section: The Canadian Journal Of Neurological Sciencesmentioning

confidence: 83%

Disclosing a Diagnosis of Alzheimer’s Disease: Patient and Family Experiences

Smith

Beattie

2001

Can. J. Neurol. Sci.

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“…Maguire et al showed 83% of carers said their relative should not be told (although 71% would want to know the diagnosis were they to have dementia). 11 Holroyd et al found only 36% of carers thought it helpful for patients to be told; 12 and Bradford and colleagues' review revealed nine studies where family/carer(s) denied or preferred not to know the patient's condition. 13 However, Pinner and Bouman found that 92% of patients with mild dementia wished to be fully informed of their diagnosis.…”

Section: Introductionmentioning

confidence: 99%

Difficulties in disclosing the diagnosis of dementia: a qualitative study in general practice

Phillips

Pond²,

Paterson³

et al. 2012

Br J Gen Pract

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“…Un estudio realizado por Maguire en Irlanda, de 100 familiares de pacientes con EA mostró que 83% de ellos expresó su deseo de que el paciente no sepa el diagnóstico, siendo el motivo principal de ocultar el diagnóstico el prevenir una depresión. Sin embargo, 71% de estos mismos cuidadores refi ere que les gustaría saber el diagnóstico de EA si lo padecieran 14 .…”

Section: Actitudes De Los Cuidadores/familiaresunclassified

Comunicación diagnóstica en enfermedad de Alzheimer: Reflexión y propuesta

Prato

2012

Rev. méd. Chile

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Family members' attitudes toward telling the patient with Alzheimer's disease their diagnosis

Cited by 122 publications

References 5 publications

Disclosing a Diagnosis of Alzheimer’s Disease: Patient and Family Experiences

Disclosing a Diagnosis of Alzheimer’s Disease: Patient and Family Experiences

Difficulties in disclosing the diagnosis of dementia: a qualitative study in general practice

Comunicación diagnóstica en enfermedad de Alzheimer: Reflexión y propuesta

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