Dementia is a common condition and one that, because of its increasing incidence with age, will grow in prevalence in the future with aging of the population in the Western world and increasing life expectancy. Surveys measuring the prevalence of dementia disclose that mild cognitive impairment is present in 2.6% to 15.4% of all persons over age 65 and severe dementia is present in 1.3% to 6.2%. Because the prevalence of dementia increases with advancing age, clinically significant dementia is present in 10.5% of persons 80 to 84 years old and in 20.8% of persons 85 to 89 years old.²

Predictions of dementia prevalence in the future are even more sobering. In the United States, it has been estimated that more than 20% of the population will be over 65 years of age by the year 2030, about 10% of whom will have clinically significant intellectual impairment.³ By 2030, there will be approximately 3.5 million nursing home residents, over half of whom are expected to suffer from at least some degree of cognitive impairment.⁴ Worldwide, one recent study conservatively estimated the prevalence of dementia at 24.3 million, a number expected to double every 20 years because of population growth and increasing life expectancy.⁵

Alzheimer’s disease (AD) is the most common cause of adult dementia in community, outpatient clinic, and hospital surveys, accounting for over 70% of patients with dementia.⁶ Alzheimer’s disease is present in 6% to 8% of all persons over 65 years. Its prevalence doubles every five years after the age of 60 so that nearly 30% of all persons over 85 years are affected.⁷ The 2000 census recorded 4.5 million people in the United States with AD. By 2050, this
number is expected to climb to 13.2 million unless a cure or prevention is found.⁸ Vascular dementias, with or without AD, account for another 20% of patients with the syndrome of dementia.⁹ The remaining 10% of patients with dementia suffer one of a multitude of disorders, including Parkinson’s disease, Huntington’s disease, Wernicke-Korsakoff syndrome, head trauma, and metabolic encephalopathies.

Studies of the economic impact of AD reveal the magnitude of the effect of the disease on society, irrespective of the extent of human suffering. Adjusted to 1997 dollars, the annual cost of direct and indirect care for each patient in the United States with AD was estimated to be $35,287 with an aggregate annual cost to society of $141 billion.¹⁰ The Consortium to Establish a Registry for Alzheimer’s Disease (CERAD) analyzed the cause of these expenses using Medicare databases.¹¹ Pharmaceutical success in the arrest or reversal of cognitive impairment or in delaying in the progression of AD (none of which has been accomplished yet¹²) could be translated into substantial cost savings.¹³

One ethical dilemma results from the negative societal attitude toward demented elderly patients. The essential question is, what is the optimal care that society should provide for patients with dementia and how can we maintain humane and dignified care for them given three constraints: (1) the growing public acceptance of the finite resources society has devoted for health care; (2) the low relative value society assigns to expenditures for elderly patients with dementia and total dependency, in comparison to the values assigned to other necessary and meritorious health-care expenditures; and (3) our societal ambivalence toward the demented elderly which results from our psychological difficulty in dealing with patients with permanent cognitive loss?

A physician’s relationship with a dementia patient has unique features that may interfere with its therapeutic benefit.¹⁴ Consciously or subconsciously, many clinicians regard patients with permanent cognitive loss as undesirable and uninteresting. Early in their training, many physicians develop a sense of failure and frustration in attempting to treat demented patients. A physician may believe that she is powerless to provide any therapeutic benefit to the patient because the syndrome of dementia is inexorably progressive, irreversible, untreatable, and hopeless. A clinician may manifest this overwhelming sense of therapeutic failure through avoidance behavior, spending as little time as possible with the demented patient and thereby overlooking potentially correctable medical problems whose treatment could produce cognitive improvement.¹⁵

Physicians learn to depersonalize demented patients because they subconsciously equate the loss of intellect with the loss of personhood.¹⁶ As a consequence of their loss of their personhood, the medical subculture has coined a lexicon of pejorative, cynical, and insulting names for demented patients, the most common of which is “gomer.” Referring to a patient as a gomer reveals the depth of depersonalization; that is, the patient is no longer a person, she is now a gomer. A gomer no longer possesses the inherent privileges of personhood, namely, human respect and dignity. Therefore, a gomer can be ignored, abused, ridiculed, and neglected.¹⁷ A necessary corrective to this disturbing and insulting depersonalization is to constantly re-emphasize the person behind the illness who deserves our respect, care, and devotion.¹⁸

Caring for demented patients evokes subconscious fears in physicians because it threatens them with the thought of losing their own intellect, their most prized possession. This subconscious fear is converted into further depersonalization and avoidance behavior to enhance the physician’s denial mechanism. This nihilistic and avoidance attitude toward treating patients with dementia creates a self-fulfilling prophesy: the untreatability, irreversibility, and hopelessness of the demented patient. Because nothing possibly can be done to help the patient, nothing should be attempted. Avoidance of demented patients and therapeutic nihilism toward them further reinforce the negative societal stereotypes and fears of aging, dementia, and dependency.¹⁹

A psychological impediment that some clinicians encounter stems from their failure to shift their therapeutic expectations for demented patients from curing to caring. Some clinicians begin the patient-physician relationship expecting to cure or rehabilitate each patient. This attitude is inappropriate, however, in the management of the demented patient. Only in those rarely encountered cases of “treatable” or “reversible” dementias can a physician reasonably expect significant improvement or cure.²⁰

Physicians should adjust their therapeutic goals to caring for the demented patient. According to the model of chronic disease management, “care” requires the physician to attend to the seemingly minor and uninteresting details of the patient’s life and health. Some clinicians complain that such an approach resembles the objectives of nursing more than those of medicine. Christine Cassel has observed that the measures of chronic medical care are technically simple and compassionate steps intended to improve the quality of life, but many clinicians may resist and devalue them because they require humane dedication rather than technological virtuosity.²¹

Practical measures of chronic care of the demented patient include careful attention to the maintenance of satisfactory bowel function, peaceful sleep, and adequate dietary intake; correction of urinary incontinence; and compassionate control of agitation. Nursing home staff should permit the patient to keep familiar articles from home in her room and allow her to maintain her own schedule to the fullest extent compatible with institutional policies. For patients living at home, safety is a key objective, particularly around stairs and in the kitchen and bathroom. Patients, whether living at home or in an institution, should be permitted to exert as much control over their lives as possible in keeping with their safe and proper care.²² Increasing the level of control demented elderly patients exert over their lives improves their physical and psychological status²³ in addition to providing humane benefits.²⁴

Another principle in providing effective chronic medical care is to pay conscientious attention to treating the patient’s underlying medical illnesses.²⁵ Functional cognitive impairments in elderly demented patients are due to several concurrent factors: (1) the direct effects of the dementing illnesses; (2) the secondary toxic and metabolic effects on the brain caused by underlying organ failure and comorbid risk factors such as hypertension, diabetes, smoking, and vitamin deficiency; (3) impairments in vision and hearing; and (4) the side effects of medications. All nonessential medications should be withheld and dosages of essential medications carefully monitored to guarantee that the minimum effective dose is prescribed. Many medications, such as digoxin, benzodiazepines, tricyclic antidepressants, and eye drops with anticholinergic properties, may produce toxic encephalopathies in the demented elderly who receive the same dosages that younger patients tolerate well. Controlling hypertension and diabetes, as well as getting demented patients to quit smoking, appears to produce measurable cognitive improvements.²⁶ Elimination of smoking also removes a serious safety hazard. Improving vision with proper refraction and optimizing hearing by clearing the ear canal of wax and providing professionally prescribed and fitted hearing aids also produces measurable improvement in cognitive function.²⁷ Optimizing nutrition leads to improved cognitive performance in the elderly as well.²⁸ Identifying and treating depression in the elderly, which may present cryptically as a “pseudodementia,”²⁹ improves patient outcomes as does non-pharmacologic and behavioral treatment of depression and behavioral problems.³⁰

Physicians need not shoulder the burden alone of managing chronically ill patients with dementia. Specially trained nurse case managers can supervise outpatient care to assure adherence to published guidelines for the optimal treatment of demented patients.³¹ A recent study showed that a disease management intervention using a nurse case manager improved AD patients’ health-related quality of life, overall quality of life, quality of care by caregivers, social support, and caregivers’ needs for assistance.³² Another study showed that AD outpatients under the care of a nurse case manager showed improvement in their quality of care and a reduction in their behavioral and psychological symptoms without
increasing their need for antipsychotic or sedative-hypnotic drugs.³³

Physicians can overcome the inevitable tendency toward depersonalizing the demented patient by trying to learn about the patient’s prior life. Seeing photographs, hearing anecdotes from family members, and trying to appreciate the person prior to the onset of dementia can help diminish the tendency toward depersonalization.

Neurology, psychiatry, geriatrics, internal medicine, and family practice residency programs should teach trainees the principles of caring for patients with chronic diseases. Physicians planning to care for demented elderly patients should understand the importance of paying careful attention to the details of maintaining their patients’ health and maximizing the quality of their patients’ lives. They should be taught how to develop excellent communication skills and how to recognize and avoid the psychological pitfalls in their relationship with demented elderly patients by converting their therapeutic expectations from “curing to caring.”

Some physicians and family members believe that the diagnosis of AD should not be disclosed to the patient, and conveyed only to a family member. They attempt to justify this deception by claiming that the patient who is told the diagnosis is then subjected to unnecessary harms, such as depression and an increased risk of suicide, despite the fact that no evidence supports this assertion. They argue that no good can come of knowing the diagnosis of AD, no diagnostic certainty in AD is ever possible without a brain biopsy or post-mortem examination, and on balance it is better to protect the patient from harm.³⁴

Studies of cognitively normal patients reveal that the large majority would want to be told the diagnosis of AD once it has been made.³⁵ One study of AD family members in the United Kingdom found that whereas 71% said they would want to be told if they developed AD, 83% said that the AD patient should not be told.³⁶ Another study found that 43% of AD family members advocated for a policy of not disclosing the diagnosis of AD.³⁷

As discussed in chapter 2, diagnostic deception in this circumstance is a type of paternalism. Despite the beneficent motive, deception is ethically acceptable only if paternalism can be justified. I showed in chapter 2 that paternalism cannot be justified in the overwhelming majority of cases of diagnostic deception. Others have reached the same conclusion and advocate routine disclosure of the diagnosis.³⁸ Patients may learn of their diagnoses through reading insurance forms, medical bills, or during conversations with other clinicians. Thus, deception is not only unethical but usually unsuccessful.

The American Medical Association Council on Ethical and Judicial Affairs (CEJA) recently stated that it is unethical for physicians to withhold information from patients that they need to make a medical decision, writing, “With-holding medical information for patients without their knowledge or consent is ethically unacceptable.”³⁹ Neurologists should assess patients for their cognitive capacity to understand and the extent to which they wish to know their diagnosis. For patients with both the cognitive capacity to understand and who wish to know their diagnosis, it is wrong to withhold it because, despite the beneficent motive, paternalistic deceptiveness cannot be justified.

How to tell the truth is important. The diagnosis of AD should be communicated compassionately in simple language. Neurologists should discuss available therapies, family support groups, respite admissions, adult day care, and opportunities for research participation. Neurologists should encourage continuity of care with regular appointments and remain available for questions and advice.

In our current era of global health-care budgeting, competition for scarce resources will become greater as each group of health-care recipients asserts its priority over others. Because macroallocation decisions will be based on mutually held societal values, the future
health care of demented elderly patients is precarious. Cost-benefit analyses and econometric models are likely to assign care of the demented elderly a low priority because they no longer are productive citizens. Pure economic analyses may conclude that the demented elderly represent a disproportionate and unjustifiable economic drain.

Ethical concepts of justice, beneficence, and human dignity require, however, that we cannot forget our demented elderly. These patients are entitled to their fair share of health-care resources because of their prior contributions to society, in addition to purely humane considerations. Physicians have a special ethical duty to represent demented patients in macro-allocation decisions because they are no longer able to speak up for themselves. Physicians should advocate for these vulnerable patients in direct proportion to the patients’ inability to defend their rights.⁴⁰

In addition to macro-allocation inequities, health-care dollars already earmarked for demented patients are injudiciously distributed. Much of the health-care money currently spent on the elderly pays for high-technology, high-cost tertiary rescue care, such as intensive care unit admissions for dying patients and coronary artery bypass surgery for patients with limited life expectancies. More money should be shifted to low-technology, low-cost amenities, such as hearing aids, eyeglasses, wheelchairs, home health care, and nursing home care, that increase the quality of remaining life of many more elderly and demented patients.⁴¹

Daniel Callahan convincingly argued that public payment for high-cost, high-technology rescue care should be governed by age-based criteria. He argued that our society should be responsible for providing the elderly with decent nursing home and palliative care and low cost amenities that improve the quality of their remaining life. But it is unreasonable and unfair to expect society to provide high-technology, tertiary rescue care, intended only to extend the duration of a person’s life, after the person has outlived her expected life span of approximately 80 years.

Conversely, as a matter of fairness, society has a duty to extend the life span of its younger citizens by all reasonable means to help them achieve a normal life expectancy. Therefore, a greater proportion of health-care resources should be devoted to preventive care and to increasing the availability of health care. For elderly patients who already have achieved their normal life expectancy, their portion of the health-care budget should be devoted to providing more comprehensive chronic, palliative, and supportive care.⁴²

Several geriatricians attacked Callahan, accusing him of age discrimination. They argued that advocating age-based criteria for health-care rationing reinforces negative stereotypes of the elderly and implies that older people are less worthy of respect and less deserving of societal resources. They argued that the elderly have just as much right as citizens of any other age to receive high-technology medical care. According to these geriatricians, persons of all ages should share an equal burden in the inevitable rationing of high-cost, high-technology resources.⁴³

How should we define society’s duty to provide citizens with goods and services equitably? I side with Callahan because I believe that it is most reasonable and fair to expect society to provide all citizens with an equal opportunity to achieve a normal life expectancy. Obviously, this duty is not being exercised currently in the United States. Until it is, I agree that society’s principal duty is to provide chronic care, comfort care, and quality of life measures, but not further high-technology, life-prolonging measures for elderly patients who have exceeded their life expectancy. Patients over age 80 could purchase high-technology rescue health care privately if they desired but society does not have the responsibility to provide them given the current inequities in access to medical care.

The extent to which a patient with dementia possesses the capacity to consent to or refuse treatment is an important and changing issue
in the patient-physician relationship. In the early stages of AD, patients retain decision-making capacity but thereafter, surrogates must provide consent or refusal on behalf of the patient. Alzheimer’s patients comprise a spectrum from the partially competent to the utterly incompetent. Patients in early stage disease often are competent to consent for treatment and complete a valid advance directive for medical care. (See below.) Patients with moderate dementia can be tested reliably for their ability to make a clinical decision by using structured interviews ⁴⁴ or neuropsychological tests.⁴⁵ Bedside instruments have been developed and validated to more precisely assess the capacity of patients with AD to consent to treatment.⁴⁶ Laurence McCullough and colleagues refer to what they call the “executive control functions” that are lost progressively in dementia, result in loss of patient autonomy, and require surrogate decision making.⁴⁷

After assessing the patient’s degree of decision-making capacity, a dementia patient can be placed into one of three consent/refusal categories as discussed in chapter 2: (1) capable of valid consent or refusal; (2) capable of simple consent or refusal; or (3) unable to provide consent or refusal. Valid consents and refusals are those that are sufficient alone. Simple consents require the corroboration of a surrogate decision maker but simple refusals are sufficient alone. The severely demented patient can make neither a simple consent nor refusal and requires a surrogate for all decisions. Victor Molinari and colleagues adopted the term “assent” from the pediatric usage (discussed in chapter 2) and applied it to the somewhat analogous situation in dementia patients in a concept they termed “geriatric assent.”⁴⁸ This usage of assent is identical to the concept of simple consent, explained in chapter 2. As in children, assent means that the patient’s permission is a necessary but not sufficient condition for consent because it must be corroborated by a surrogate.

Physicians’ responses to patients’ treatment decisions are straightforward in the mild and severe dementia situations: patients have the independent capacity to provide valid consent and refusal in the former case and no capacity in the latter. Most vexing are the patients with moderate degrees of dementia who lack the capacity to provide independent consent for treatment but retain the capacity to provide independent refusals. Physicians find it difficult to know to what extent they should honor a refusal of treatment in this circumstance. There is no formulaic answer to this question. In practice, it may be useful to seek a psychiatric consultation to determine capacity, request an ethics consultation to determine the rationality of the treatment refusal, or apply one of the standardized bedside neuropsychological instruments to better assess capacity. Joseph Carrese recently described a case, similar to several I have seen as an ethics consultant, in which a demented patient insisted upon leaving the hospital to go home but lacked the physical capacity, financial resources, and social supports to live alone successfully.⁴⁹ Ethics consultants must balance the competing considerations of respect for patient autonomy and paternalistic protection of the patient in advising whether the discharge satisfies the usual safe and reasonable criteria.⁵⁰

A recent controversy involving the cognitive capacities of demented patients surrounds the question of whether they should be permitted to vote in public elections. Some commentators believe it is likely that the 2000 United States presidential election turned on the voting preferences of a relatively small group of elderly Florida voters with cognitive impairment.⁵¹ Jason Karlawish and colleagues pointed out that whether demented patients vote depends to a large extent on their caregiver. Patients with AD cared for by a spouse who feels voting is important are more likely to vote.⁵² Important ethical, legal, social, and political questions have been raised in this discussion.⁵³ Should physicians advocate a test of citizen competency to vote? Is such a test constitutional?⁵⁴ Should health-care professionals draft guidelines to determine whether and to what extent to encourage or assist demented patients to vote? Should medical societies be involved in this issue? These are broad questions that society and not only physicians must address. Neurologists can inform the discussion by their unique knowledge of AD and the measures available to assess demented patients’ capacity to make decisions.

The autonomy and self-determination of a demented patient can be furthered by following the directives for care the patient had executed validly when competent earlier. As discussed in chapter 4, competent patients can execute legally and ethically valid written advance directives and can name a legally authorized surrogate decision maker whose authority is later activated by the incompetence of the patient. As explained in chapter 4, a surrogate appointment generally is more useful than a written statement of preferences alone because the latter is rigid and often ambiguous whereas the former is flexible and permits discretion.⁵⁵

Patients in early stages of dementia can understand and issue valid advance directives.⁵⁶ Physicians managing demented patients in the outpatient setting should encourage them to execute advance directives in anticipation of subsequent cognitive incapacity.⁵⁷ The directives should be supplemented with detailed discussions with family members, surrogates, and the physician about what types of treatment the patient desires in various clinical circumstances. An advance directive alone without these supplemental discussions is an inadequate advance care plan.⁵⁸ Angelo Volandes and colleagues recently found that during advance care planning conversations, showing early-stage dementia patients a video of a patient with advanced dementia increased the percentage of patients who elected comfort care from 50% to 89%.⁵⁹

The most controversial issue in advance directives for demented patients concerns the situation in which a patient’s previously executed directive to withhold hydration and nutrition or other life-sustaining treatment conflicts with the demented patient’s contemporaneous wish to eat or receive treatment. Which directive should prevail? In general, there is a strong legal tradition for newer directives, such as a more recently executed last will and testament, to trump earlier directives. But should the fact that the earlier directive was made when the patient was competent endow it with special power to trump the later directive because the person is no longer competent?

An earlier directive designed to trump a later conflicting one has been called a “Ulysses contract,” referring to Homer’s story of Odysseus and the sirens.⁶⁰ Anticipating that he would irrationally jeopardize the voyage because of his irresistible attraction to the sirens, Odysseus instructed his men to lash him to the mast and not release him when they sailed passed the sirens, no matter how much he ordered or begged them under the sirens’ spell. His sailors therefore ignored his contemporaneous demands to be released, and followed his orders as he had originally instructed them.

Consider the case of a healthy man who has requested that all his medical treatments, including life sustaining hydration and nutrition, should be withheld to permit him to “die with dignity” if he should become demented to such an extent that he could no longer recognize the members of his family. Ten years later the patient, now severely demented, resides in a nursing home, where he appears relatively content. He is hungry, and wishes to eat, but has difficulty swallowing because of advanced AD. Are his physicians bound by the patient’s prior directive to withhold his oral feedings or placement of a feeding tube, or are they bound by the patient’s present directive, which is to be given food because he is hungry?

Ronald Dworkin had written convincingly that earlier directives executed when a patient was competent should prevail. He pointed out that a patient’s interest can be divided into experiential and critical interests, and argues that the latter are worthy of greater respect than the former because they reflect longstanding personal convictions. Experiential interests include the patient’s present ephemeral experiences of pain, hunger, pleasure, and satisfaction. Critical interests, by contrast, comprise those longstanding committed convictions about what is important in life that are intrinsic to the individual person’s identity and character. Dworkin argued that advance directives mandating withholding treatment permit the critical interest to overrule the experiential interests as they should.⁶¹ Michael Newton concurred with Dworkin that the harms inherent in denying “precedent autonomy” of critical interests exceed those of respecting it.⁶²

Other scholars, notably Rebecca Dresser, Sanford Kadish, and Daniel Callahan, take the opposite view. Kadish and Calahan pointed out that the selfhood and identity of the demented person persist even when the patient becomes utterly incompetent from progressive dementia. It is that same self that now is requesting food or treatment and that self should continue to be respected and listened to.⁶³ Similarly, Dresser argued that an objective balance of burdens and benefits favors providing nutrition and treatment for the demented patient who wishes to receive it, assuming the patient appears relatively content.⁶⁴

Although I respect Dworkin’s and Newton’s arguments, I believe that contemporaneous directives for food or treatment must be allowed to trump older directives because, with increasing dementia, the clinical circumstance now has changed and the patient’s values have changed accordingly. Experienced physicians know that preferences and values established in earlier life about what quality of life is worth living often change with increasing age, infirmity, and illness. Older and sicker patients may become perfectly content with a quality of life that would have seemed unacceptable to the same person when younger and healthier. We always allow for and respect the validity of these changes of perspective because they are part of a normal adaptation to aging and illness.

Family members usually provide the demented patient’s primary home care⁶⁵ and make treatment decisions for the patient.⁶⁶ At some point in the course of the illness, family members no longer can continue to care for the patient at home and institutionalization is required. Factors that determine the duration of successful home care include: (1) the duration, severity, and progression of the dementia; (2) the psychological morbidity of the caregiver, particularly the presence of “burnout” and depression; (3) the presence or absence of caregiver training; (4) the patient’s marital status; (5) the functional status of the patient; and (6) the age of the patient.⁶⁷ Using these factors, Yaakov Stern and colleagues validated an algorithm to predict when AD patients will need to enter nursing homes.⁶⁸ Other groups have identified similar predictors of institutionalization by using epidemiological studies⁶⁹ and surveys of caregivers.⁷⁰

Caregiver training is a critical factor in maintaining successful home care. Once caregivers are taught how to anticipate, manage, and prevent common complications of dementia, patients under their care can continue to function successfully for longer periods before institutionalization becomes necessary. At a minimum, caregivers should purchase and study one of the excellent books that provide facts and advice on home management of the demented patient.⁷¹ Where it is available, caregivers should receive training from visiting nurses or Alzheimer support groups on how to manage patients at home. Assistance from AD nurse care managers is especially useful.

Caregivers need to learn how to recognize and prevent burnout and illness in themselves. Caring for an Alzheimer patient is extremely stressful and contributes to psychiatric and medical illnesses and mortality in the caregiver.⁷² Timely psychosocial caregiver interventions and training reduce caregiver illness, dysfunction and burnout.⁷³ Several studies performed across different racial and ethnic groups showed that programs of caregiver counseling and support significantly delayed nursing home placement of patients with AD and improved patient and caregiver quality of life by preventing caregiver burnout and illness.⁷⁴ Surprisingly, the degree of caregiver depression and stress does not diminish following institutionalization of the patient, because most caregivers continue daily visits and care.⁷⁵ End-of-life care is especially stressful for caregivers who report being “on duty 24 hours a day.” They can benefit from support services including bereavement counseling.⁷⁶

Specific stresses on family caregivers that provoke institutionalization include nighttime awakening and wandering, suspiciousness, accusatory behavior, incontinence, and violence. Of these, nighttime awakening is perhaps the most important. Caregivers need rest. With adequate rest, usually they can cope with whatever unpleasant behavior the patient
exhibits during the day. But without adequate rest, they quickly fatigue and no longer can provide proper daily care. Then it is only a short time before institutionalization becomes necessary.⁷⁷

Family caregivers of demented patients should be referred to social workers for evaluation, counseling and assistance in behavioral management, as well as for secondary referral to other appropriate professional services.⁷⁸ Families of demented patients need legal and financial counseling to identify sources of available public support and to understand the rules for eligibility for financial assistance and personal services.⁷⁹ Visiting nurses can perform home assessments with the intent of arranging periodic visits by home health aides and other necessary professionals. Respite programs, including adult day care and inpatient institutional respite admissions, can be arranged to allow caretakers to have regular rest. These programs were created to prolong the duration of successful home care.

A problem that often complicates the relationship of the physician with the Alzheimer patient living at home is that family caregivers may become the physician’s “patient.” There are several reasons why this problem occurs. During office visits, the physician’s interview usually is directed more to the caregiver than to the patient because demented patients are unreliable respondents. Not only are caregivers more verbal and assertive, but the attending physician relies on them to interpret and communicate the patient’s medical and functional status. Some caregivers monopolize the physician’s time with accounts of how the daily care of the demented patient stresses them, rather than describing the patient’s condition.

Caregivers, thus, can fall into the role of a patient, with the physician attending to their needs over those of the demented patient. Two problems are created when the family caregiver becomes the patient. First, the physician may lose sight of the patient’s needs, particularly in those instances in which the needs of the patient conflict with those of the caregiver. Physicians should be alert to signs of neglect or abuse when caregivers appear preoccupied with their own plight over that of the patient.

Second, the caregiver’s growing dependency on the physician is harmful because it can reinforce feelings of incompetency in the caregiver and thereby accelerate institutionalization of the patient. Clinicians should not treat family members or other caregivers as patients; rather, they should regard caregivers as their partners in a “joint effort directed at obtaining optimal care for the patient.”⁸⁰ Although the emotional needs of the caregiver are legitimate, they should remain distinct from the medical needs of the patient.

Family members of patients with AD were interviewed in a series of monthly meetings under the aegis of the Fairhill Center for Aging in Cleveland, Ohio, to determine normative attitudes about care of their demented family members. The results of these conversations were published as a set of guidelines for the care of patients with AD from the family caregiver’s perspective.⁸¹ The topics discussed included telling the truth about diagnosis, driving automobiles, respecting choice, controlling behavior, and deciding about death and dying.

The decision to place a demented patient in a nursing home provides the context for several ethical considerations. An ethical analysis considers the concepts of patient autonomy, nonmaleficence, and beneficence as well as the psychological, social, and financial status of the caregivers. Often, nursing home placement will have occurred following a lengthy and ultimately unsuccessful attempt at home care. In other instances, placement will have occurred before reasonable alternatives have been made at home. Premature nursing home placement may suit the convenience of caregivers, such as middle-aged children who lack the dedication to try to care for an aging demented parent at home. The physician has a difficult role in such cases, in attempting to balance the rights and interests of the dependent, incompetent patient against those of the more assertive and controlling family.

Diane Meier and Christine Cassel performed an ethical analysis of physician and caregiver
roles in the process of deciding to institutionalize demented patients.⁸² The patient has autonomy-based rights requiring that caregivers and physicians try to the greatest extent possible to follow her previously expressed wishes regarding nursing home placement. Both also have nonmaleficence-based and beneficence-based duties to determine what decision is in the patient’s best interest.