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

Abstract

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.

Disclosing a diagnosis of dementia: a systematic review

“…The empirical evidence reviewed in this paper suggests that for many practitioners, patients and carers, (Husband, 1999;Husband, 2000;Young, 2002) Negative effects on self-esteem and personhood 3 (Husband, 1999;Husband, 2000;Pratt and Wilkinson, 2003) Restricted activities 3 (Husband, 1999;Husband, 2000;Pratt and Wilkinson, 2003) Hypervigilance 2 (Husband, 1999;Husband, 2000) Preoccupation with diagnosis 2 (Husband, 1999;Husband, 2000) Can be a 'crisis' time following disclosure 1 (Pratt and Wilkinson, 2003) Positive outcomes End to uncertainty 3 (Husband, 1999;Husband, 2000;Smith and Beattie, 2001 (Young, 2002;Pratt and Wilkinson, 2003) Planning, short term goals 2 (Husband, 2000;Pratt and Wilkinson, 2003) disclosing a diagnosis of dementia is neither inevitable nor straightforward. With the emergence of newer disease entities, such as mild cognitive impairment, the process will become even more complex.…”

“…Although disclosure of a diagnosis of dementia has negative impacts, non-disclosure or the provision of a vague or possible diagnosis was also identified as confusing, upsetting and difficult to interpret (McWilliams, 1998;Robinson et al, 1998;Smith and Beattie, 2001;Pratt and Wilkinson, 2003). Positive impacts of disclosure identified by people with dementia include, an end to uncertainty, confirmation of suspicions and increased understanding of problems (McWilliams, 1998;Robinson et al, 1998;Husband, 1999;Husband, 2000;Smith and Beattie, 2001;Pearce et al, 2002;Pratt and Wilkinson, 2003).…”

“…Positive impacts of disclosure identified by people with dementia include, an end to uncertainty, confirmation of suspicions and increased understanding of problems (McWilliams, 1998;Robinson et al, 1998;Husband, 1999;Husband, 2000;Smith and Beattie, 2001;Pearce et al, 2002;Pratt and Wilkinson, 2003). The importance of a supportive social context in helping people adjust to the diagnosis has been highlighted (Pratt and Wilkinson, 2003).…”

Primary care and dementia: 1. diagnosis, screening and disclosure

“…The benefits of a sharing a diagnosis include (Pratt and Wilkinson, 2003;Bamford et al, 2004) ending uncertainty, confirming suspicions, increasing understanding of problems, giving access to support, promoting positive coping strategies, facilitating planning and fulfilment of short term goals. (Husband, 1999(Husband, , 2000Smith and Beattie, 2001).…”

Editorial: The hazards of early recognition of dementia: a risk assessment

“…There is some evidence that disclosure of the diagnosis ends a period of confusion and brings relief (Smith & Beattie, 2001), so the risk may be worth taking. However, increased suspicion of dementia by general practitioners may have a number of unintended consequences, including 'false positive' diagnoses and overloading of specialist services.…”