Attitudes of Older Adults' on Being Told the Diagnosis of Alzheimer's Disease

Holroyd, Suzanne; Snustad, Diane G.; Chalifoux, Zona L.

doi:10.1111/j.1532-5415.1996.tb06409.x

Cited by 54 publications

(50 citation statements)

References 7 publications

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“…Paradoxically, 71 of those family members indicated that they themselves would want to be told about their diagnosis should they be diagnosed with AD in the future. Holroyd, Snustad and Chalifoux 6 found that 80% of 156 older persons without dementia surveyed by questionnaire indicated a similar wish. Erde, Nadal and Scholl 7 reported that 90% of 224 nondemented adult patients indicated that they would also want to be told of their diagnosis.…”

Section: The Canadian Journal Of Neurological Sciencesmentioning

confidence: 99%

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: 99%

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

Smith

Beattie

2001

Can. J. Neurol. Sci.

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“…4 A number of studies indicate that individuals without dementia report wanting to be told of their diagnosis should they ever develop dementia, but that they have reservations about sharing similar information with a family member should that family member ever be diagnosed with dementia. 5,6 Studies of clinical practice reveal differing approaches among clinicians to the issue of sharing the diagnosis. 7 Although many clinicians feel that the ideal is to share the diagnosis with patients, in clinical practice the direction of the discussion is often determined by practical considerations.…”

Section: Disclosure Of Dementia Diagnosismentioning

confidence: 99%

The Physician–Patient Relationship in Dementia Care

Blass

2007

Neurotherapeutics

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Summary:Medical care of patients with dementia often occurs within a physician-patient relationship whose features differ from relationships with patients without dementia. Many basic assumptions of the physician-patient relationship may not completely hold true, and certain aspects of the patient role may be shared by others besides the patient. For example, the entire premise of consent to the patient role may be inapplicable to patients who lack insight into their illness. In addition, caring for cognitively impaired patients who do not comprehend the purpose of the physician-patient interaction may render physicians vulnerable to losing empathy with their patients and objectifying them. This can lead to viewing patients as collections of symptoms rather than as humans suffering with illnesses and burdens. The fact that certain medical interventions, such as treatment of neuropsychiatric disturbances that do not trouble the patient, may appear to be initiated for the primary purpose of alleviating caregiver emotional stress also affects the physician-patient relationship. The present review examines how this relationship may be altered and presents a framework within which these alterations can be considered.

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“…Studies have looked at cognitively intact older adults in different settings and asked them their views on case vignettes about dementia and a hypothetical diagnosis (Erde et al, 1988;Holroyd et al, 1996;Pinner et al, 2001). These studies showed that a vast majority wished to be fully informed if they were faced with this condition.…”

Section: What Do Patients Want To Know?mentioning

confidence: 99%

What should we tell people about dementia?

Pinner¹,

Bouman²

2003

Adv. psychiatr. treat

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This article reviews what we should tell patients and carers about dementia. The attitudes and views of patients, carers and peer groups are examined, as is the practice of doctors and other professionals working in dementia care. Factors influencing the decision to disclose the diagnosis of dementia, including the degree of certainty of the diagnosis, the degree of insight of the patient and the severity of the dementia are considered. Advantages, disadvantages and ethical issues of disclosure are discussed, as well as when or whether and how to disclose the diagnosis. Flexible guidelines regarding the process of disclosure are introduced.

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Attitudes of Older Adults' on Being Told the Diagnosis of Alzheimer's Disease

Abstract: Although these results may support disclosure of diagnosis for most patients with AD, clinical and ethical issues remain in individual cases.

Cited by 54 publications

References 7 publications

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

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

The Physician–Patient Relationship in Dementia Care

What should we tell people about dementia?

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