Timely Diagnosis and Disclosure of Alzheimer Disease Gives Patients Opportunities to Make Choices

Holt, G. Richard MD, MSE, MPH, MABE


South Med J. 2011;104(12):779-780. 

In This Article

Abstract and Introduction


More than 5.4 million Americans are known to be living with Alzheimer disease (AD). It is also the sixth leading cause of death in the United States. Bettelheim projected that "unless effective treatment and prevention can be found, by 2050 the number of Americans with dementias will triple to nearly 16 million."[1] Caring for AD patients is difficult and problematic in a number of ways from an ethical standpoint. As the number of individuals diagnosed as having AD increases, the issue of whether to inform a person with known or suspected AD of his or her diagnosis continues to stimulate debate, as it has for the past 2 decades or more.[2] It is this author's opinion that the timely diagnosis and disclosure of AD gives patients opportunities to make choices. Fortunately, advances are being made to improve the precision of the diagnosis of mild to moderate AD, and the therapeutic options now span a wider range of medical, psychiatric, social, and rehabilitative entities.

The early diagnosis of AD is generally manifested by the presence of a mild cognitive impairment (MCI). The tools and instruments available to the clinician for this diagnosis include psychometric testing (Mini-Mental State Examination and the Geriatric Depression Scale), neuropsychiatric examination, neuroimaging (magnetic resonance imaging, positron emission tomography/computed tomography scans), biomarkers (apolipoprotein E gene 4 allele), and evaluation of skills of daily living.[3] While sensitive only at the 90% level, when used in conjunction with the temporal evaluation of a patient, they provide a realistic substantiation of the diagnosis of AD. The dilemma for the clinician is then when or whether to inform the patient of the diagnosis. Recently, in Great Britain, it was found that more than half of general practitioners who responded to a formal survey considered themselves insufficiently trained to diagnosis and manage dementias adequately.[4] Since it is the primary care physician who bears the responsibility for managing most of the AD patients, there clearly is a need to assist these clinicians with best practices guidelines and acceptable ethical options. When best prepared, the clinician will be able to make the appropriate diagnosis and, in a timely manner, inform the patient so that crises can be avoided, therapeutic and rehabilitative support can be initiated, and the patient can be adequately informed so that choices can be made for the future while decision-making capability remains.

There is a body of opinion that does not favor the disclosure of the diagnosis of AD to patients with mild to moderate disease. Cited are the following reasons:

  • Stigmatization

  • Feeling of hopelessness and despair

  • Increased risk for suicide

  • Loss of personal identity

  • Misdiagnosis[5]

Additionally, the counter argument cites difficulties in identifying the affected patient with mild to moderate AD who has the decision-making competence to plan for the future.

However, "researchers have made substantial progress in developing a model of capacity assessment that rests upon the concept of the four decision-making abilities: understanding, appreciation, choice, and reasoning."[6] Based on this framework, there is a relative preservation of the abilities of the AD patient with mild to moderate disease to choose and reason, according to Karlawish. Additionally, for those patients who have shown a comprehension of the diagnosis and prognosis when rendered, they are "highly likely to retain capacity to make decisions about their care."[6]

What then are some advantages to the patient for the timely diagnosis and disclosure of AD? Probably the most important issue for the patient is contingency planning. The AD patient and family face many short-term and long-term decisions that are best made based on knowledge of the disease process, the range of symptom progression, and the ultimate prognosis. The experienced clinician will understand the impact of the diagnosis on the patient and how she will view her personhood. Using her past and present life as the guidepost, the AD patient must plot a course with her family that will give the best opportunity to maintain her life as she wishes to continue, and to decide what would be acceptable to her when she is no longer able to interact in the same way she has enjoyed. This would include making decisions about advance directives to physicians, appointing a durable medical power of attorney, discussing end of life decisions with whoever will be designated as the surrogate (substituted) decision maker, and future living arrangements. If the patient is not informed of the diagnosis, these opportunities for planning in a meaningful and reflective manner may be lost, with increased (or even unwanted) responsibility placed on family members.

An early disclosure would also have the benefit of ascertaining the possible consent of the AD patient to participate in clinical research trials in the future or to receive current or future neuromedications that might have some promise for deterring the progression of the disease (ie, acetylcholinesterase inhibitors). If a timely diagnosis can be made in a relatively young "older" person, it cannot be predicted what medical advances might be made over the course of 20 years or so that might benefit that individual. To know whether the AD patient would agree prospectively to participate in a clinical trial would be helpful to the designated surrogate should that opportunity arise in the future. If disclosure is delayed, it might be too late to determine what the patient might have preferred.

Cognitive rehabilitation is a field with great promise for the AD patient. Here, cognitive stimulation over a broad band of problem solving appears to enhance and sustain cognitive function. There appears to be an enhancement of cognition by combining memory rehabilitation with the administration of acetylcholinesterase inhibitors.[7] Memory clinics and computer programs for AD patients engage them in activities of recollection which are not only general in nature, but also can focus on memory skills that can be directly helpful to them in activities of daily living, such as where they left a purse or wallet, or what is their living address. These memory exercises are also beneficial to their caregivers, who often get frustrated with the memory deficits of their family member.

Timely disclosure can have additional practical benefits. A caregiver, usually a family member, needs to be identified as the primary carer for the patient. Secondary caregivers should be identified, and a plan for living arrangements must be laid out. The benefit of timely disclosure allows for these practical decisions to be made over the course of time, with discussions between the patient, family, clinician, and other individuals with specific roles in the health care team. Community-based resources that can assist with the patient's care and provide support for the caregivers should be identified. Early discussions regarding financial issues can address likely shortcomings and preparations can be made for financial assistance through government programs. Practical issues such as when it is not safe for the patient to drive, home safety concerns, and wills need to be attended to.[8]

There are a number of ethical premises which support the timely diagnosis and disclosure of the AD diagnosis to patients. Our American society values the concept of autonomy, and nowhere is this truer than in biomedical issues. Patients have the right to know their medical status, unless they specifically state differently. Marzanski states that "Respect for the autonomy of dementia sufferers entails a commitment to identify and establish the conditions necessary to continue their lives in the way they are still able to and as closely as possible to the way they have normally lived."[9] Additionally, patients need to be able to trust their physicians and a good part of that trust lies in the expectation of honesty and fidelity from that clinician. Physicians are taught to be honest with their patients, even when the news can be very negative (cancer, Alzheimer's). If physicians are to discharge that fiduciary trust with the patient, then surely they must be honest in disclosing the truth of the diagnosis. The important issue is that the clinician will remain by the side of the patient through the course of the disease, administering to her, monitoring her progress or declination, assessing and reassessing her disease (and diagnosis) and supporting her throughout by also caring for her concomitant medical illnesses and conditions. When the clinician decides to diagnosis and disclose, he has made the commitment to walk the path of AD with his patient.


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