Smith A P, Beattie B L
Department of Sociology, McGill University, Montreal QC, Canada.
Can J Neurol Sci. 2001 Feb;28 Suppl 1:S67-71. doi: 10.1017/s0317167100001220.
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.
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-ADRDA criteria. 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.
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.
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.
向患者及其家属告知阿尔茨海默病（AD）的诊断是一个复杂的伦理和实际问题。这项定性研究探讨了披露AD诊断对患者和家庭成员的心理社会影响。
本研究确定了14名患者及其陪同家属，他们正在一家AD及相关疾病门诊接受痴呆的多学科评估。根据NINCDS-ADRDA标准，该组中有3名患者可能患有AD，5名患者可能患有AD。根据DSM IIIR标准，6名患者未患痴呆症。在评估后的六至八周内，在一次家庭会议上进行了诊断披露。数据收集方法包括观察评估和家庭会议，以及在可行的情况下对家庭成员和每位患者进行深入的家庭访谈。访谈内容逐字记录，并对反复出现的主题进行编码。
14个家庭中的40个人参与了这项研究。只有两个家庭选择不让患者参加家庭会议。披露可能患有AD的诊断在三个家庭中带来了一种解脱感，表示漫长的对记忆问题本质的困惑期结束。被诊断为可能患有AD的患者及其家属根据对记忆问题原因的评估前信念，以不同程度的确定性来解读该诊断对疾病存在的指示性。在被诊断为未患痴呆症的组中，有4名患者抱怨健忘，可能与轻度抑郁有关。披露未患痴呆症的诊断并没有产生预期的解脱感。两名患者继续认为他们的记忆问题是由AD的早期发作或其他一些“器质性”问题引起的。
这项研究表明，向患者和家属披露AD诊断总体上是有益的，但对诊断信息的理解存在差异，特别是在评估结果不明确的情况下。
