Advertisement

Advertisement

Diagnosing Dementia--What to Tell the Patient and Family


Linda Boise, PhD, MPH, Director, Education/Information Transfer Core, Layton Aging & Alzheimer Disease Research Center, Oregon Health & Science University, Portland, OR, USA.
Cathleen M Connell, PhD, Professor, Department of Health Behavior and Health Education, School of Public Health; Director, Education/Information Transfer Core, Michigan Alzheimer’s Disease Research Center, University of Michigan, Ann Arbor, MI, USA.

The high prevalence of dementia and the increased availability of treatments for Alzheimer’s disease and related dementias have increased the need to find optimal approaches to disclosing the diagnosis of dementia. In this article, relevant research is reviewed on physician practices and perspectives, and on older patients’ and family members’ preferences. Research suggests that, in general, patients and families want an accurate and clearly explained diagnosis, and that they desire guidance from the physician in understanding the course of the illness over time as well as resources that will help them to cope. Considerations in disclosing a dementia diagnosis and recommendations on how to disclose a dementia diagnosis are offered.

Key words: dementia, Alzheimer’s disease, disclosure, physicians, diagnosis.

Introduction
The high prevalence of dementia,1,2 increased clinical understanding of Alzheimer’s disease and related dementias, the availability of treatments, the increasingly earlier stage of the disease at which a diagnosis is possible, and growing public awareness have drawn attention to the need to find optimal approaches to disclosing a diagnosis of dementia. Research on factors that influence disclosure and the preferences of patients and family members, drawing on recommendations from experts in the field about how best to disclose a diagnosis of dementia, are discussed.

Although recently published clinical practice guidelines do not address the specific question of whether or not, or how, a diagnosis of dementia should be disclosed, there is an implicit assumption that diagnosis and disclosure of dementia are central components of high-quality dementia care.3-5 For example, the “Fairhill Guidelines for Dementia Care,” state that “physicians should inform affected individuals and their families about the diagnosis of probable Alzheimer’s disease (AD), although some physicians resist this. The communication of the diagnosis should ordinarily occur in a joint meeting with the diagnosed individual and family in order to provide the individuals with emotional support.”6

Similarly, the Alzheimer’s Society of Canada and the U.S. Alzheimer’s Association recommend that patients be informed of their diagnosis so that they can understand their symptoms, receive treatment, learn more about their condition, seek and obtain support and assistance, and plan for the future.8

Why Physicians Don’t Disclose
Many practicing clinicians do not subscribe to these recommendations even if they are aware of them. Available research suggests that no more than 50% of clinicians regularly disclose the diagnosis to patients with dementia.9-12 In one study, diagnostic uncertainty and physicians estimate of patients’ wishes and emotional stability were cited as reasons for not disclosing a dementia diagnosis.9

Obviously, a prerequisite for disclosure is for the dementia to be recognized, evaluated, and diagnosed. Recent evidence, however, suggests that as many as 50% of cognitively impaired patients are undiagnosed.13-15 The restricted length of the patient’s doctor visits, the subtlety of symptoms of dementia (especially in early stages),16 and the lack of follow-up to evaluate symptoms even when noted in the medical chart13 are cited as contributors to this underdiagnosis. The lack of follow-up is likely due in part to the perception among some clinicians that nothing can be done once dementia is diagnosed. From the perspectives of family caregivers, however, the benefits of diagnosis and disclosure are not viewed solely in terms of drug and medical treatment but also with respect to the