The following is a summary of the Fairhill Guidelines, which were developed out of a nine-month series of discussions involving family caregivers and patients at the Fairfield Center for Aging in Cleveland. The dialogues were sponsored by the Center for Biomedical Ethics at Case Western Reserve University and the Cleveland Chapter of the Alzheimer's Association. See Post SG, et al. "Fairhill guidelines on ethics of the care of people with Alzheimer's disease: a clinical summary." J Am Geriatr Soc. 1995 Dec; 43(12): 1423-1429. Abstract.

Truthtelling and Diagnosis

• The communication of the diagnosis should ordinarily occur in a joint meeting with the diagnosed individual and family in order to provide the individual with emotional support.
  
• When the family objects to the individual being present, it is important to clarify that the diagnosed individual has a moral and legal right to be present and to receive a specific diagnosis unless he or she waives it.
  
• Disclosure should allow time for questions from the family and diagnosed individual and for recommendations from the physician. The affected person and family should come to understand that although Alzheimer's disease is irreversible and progressive, some of its symptoms can be treated, and that support groups are available.
  
• If the dementia is advanced at the time of diagnosis, disclosure to the individual is no longer meaningful or warranted.

Why it's Important for Patients and Families to Know

• The physician should advise the affected individual and family to discuss and agree upon a care plan, including discussion of personal values and use of life-prolonging technologies.
  
• Disclosing the diagnosis to mildly affected individuals allows them to plan how most to enjoy their remaining years of relatively unimpaired mental functioning.
  
• Disclosure enables the person with dementia to participate in counseling and support groups, which help to alleviate anger, self-blame, fear and depression.
  
• Disclosure also permits family caregivers to participate in support groups. Some studies indicate that support groups can improve caregiver functioning.

Driving Privileges

• Diagnosis of AD is never itself sufficient reason for loss of driving privileges. During the first 3 years after early diagnosis of AD, the risk of automobile crashes is well within the accepted range.
  
• Mandating physicians to report people with AD to motor vehicle departments compromises confidentiality, and may cause individuals to delay seeking medical care.
  
• Negotiation involving the individual, family members and health care professionals may be a preferable approach. The individual may agree to restrict driving (e.g. to familiar neighborhoods) and decide upon a time to terminate driving.
  
• To encourage acceptance, the individual who agrees to limits should be assured that others will assist in providing transportation.
  
• When an individual loses insight, however, family members may even have to disable the motor vehicle.

Respecting Choice: Autonomy, Capacity and Competence

• People with dementia should be allowed to exercise their remaining capacities for specific tasks and choices. Denying these choices challenges their independence and dignity. Decision-making capacity includes capacities to understand and communicate, to reason and deliberate on future consequences, and to possess some stability in values and goals.
  
• Family members can avoid considerable conflict by identifying alternatives to risky activities. Ideally, loss of a privilege is balanced by offering ways to fill the gaps, diminish the sense of loss and retain a sense of self-control.
  
• In order to extend one's autonomy prospectively when loss of capacity is anticipated, estate wills, living wills and durable powers of attorney for health care are necessary. Laws on living wills vary from state to state, so patients and families should be advised to consult a legal expert or contact the state bar association for legal guidance.
  
• Legal judgments of competency and incompetency should reflect the mental condition of the person with dementia, not the needs or intolerance of others. Poor hygiene, lack of inhibition, inclination to mishaps and inability to maintain residences in good appearance are not of themselves grounds for a finding of legal incompetence.
  
• Appointment of a legal guardian for specific tasks (e.g. financial management) might allow the individual to remain in the community and maintain a degree of independence.

The Physician's Role in Judging Capacity

• Assessing capacity (e.g. for participating in medical decisions) can be straightforward and based on common sense. A patient may be judged incapable if he or she is obviously incoherent in conversation, responds to the same repeated question with antithetical statements, and lacks insight into the consequences of a decision or its alternatives. When such judgments are difficult, the physician may request a formal psychiatric evaluation.
  
• Even a person with somewhat advanced dementia may have intermittent periods of lucidity that allow for significant decision making. (Some are relatively lucid in early hours, for example.) Tests such as the Mini-Mental State Examination do not determine task-specific capacity. Conversation and questioning are needed to assess reasoning capacities for a specific task at hand.

Dilemmas of Behavior Control

• Wandering occurs in about 26% of home residents and 59% of institutional residents with dementia. Some studies suggest wandering should be encouraged as a person's way of coping with stress. People with AD should be free to wander in safe areas. It is important to consider possible causes of wandering, for example changes in environment, overmedication leading to confusion, disturbing noises or physical needs.
  
• Efforts to change the physical or psychosocial environment should be tried before drugs are prescribed.
  
• Physical restraints are generally unnecessary and may be hazardous, causing physical injury and psychological anguish. Physical restraints may also increase a person's perception of threat. The use of physical restraints is decreasing as studies show they do not diminish the incidence of falls, but do accelerate dependency and cognitive deterioration. Physical restraints are very occasionally warranted only in extreme situations, such as delirium, and then only for brief periods, with frequent monitoring.
  
• Behavior-controlling drugs should be use cautiously and only for specified purposes. As few drugs as possible should be used, starting with low doses and increased only in conjunction with careful monitoring for side effects. It is important for caregivers to monitor for a response to the indicated condition on a daily basis.
  
• Ethical problems arise if behavior-controlling drugs are given at doses that interfere with remaining cognitive function. Clinical experience and scientific evidence indicate that patients' behavior can be controlled at lower dosages than are commonly given. Conversely, in some cases of depression drugs are underprescribed.

Issues in Death and Dying

• A good death requires that the values of the person be integrated into the process of dying. AD is a terminal condition, although death usually results from pneumonia and other causes. This reality should be discussed with the affected person and family in time for the individual to participate in planning.
  
• The physician who provides continuing care for the person with dementia should initiate discussion with patients and families regarding the use of aggressive measures to prolong life.
  
• One way to empower individual choice while allowing family members to deal with unforeseen situations is through an advance directive that combines the living will with the durable power of attorney for health care, which is usually held by a trusted family member.
  
• Hospice care is preferred by many physicians and family caregivers in cases of end-stage dementia. One difficulty is the Medicare requirement that hospice eligibility be determined by physician certification that death will likely occur within six months. Prediction models now exist for calculating the likelihood of dying within six months for people with advanced AD. Used in combination with clinical judgment, this can certify patients for Medicare hospice coverage.

Quality of Life and Treatment Decisions

• What counts morally is the AD-affected person's sense of quality of life, and caregivers need to learn what makes affected people feel happy (although diminished emotional life can be another qualitative aspect of AD).
• As dementia progresses to a point where the meaning and substance of human life has deteriorated, the decision not to use medical technologies (except for comfort care) becomes acceptable.
  
• If the long-term goal of dementia care is comfort and emotional well-being rather than prolongation of life, it is easier to make many specific decisions about medical treatments. Caregivers must observe the affected individual carefully and provide whatever forms of pleasure and comfort are possible, and, conversely, to resist interventions that diminish comfort. The touch of a hand will offer greater comfort than a feeding tube.
  
• Most of us assess the quality of life in AD-affected persons more negatively than is justified, largely because we hold cognitive skills in such high regard. Even severely demented individuals can continue to derive joy from wearing special clothing or participating in activities which they sense are central to their self-identity. Individuals can still enjoy music, nature and art, even if they may no longer remember a name or articulate their experience.

"It is important to realize that emotional and relational well-being can be enhanced despite dementia and to insist that human dignity still be respected. In severe dementia, the finest expression of this respect may be through the touch of a hand rather than through technology."

Research Ethics

The following recommendations were put forward by the Alzheimer's Association's National Ethics Advisory Panel in a formal document entitled "Ethical Issues in Dementia Research," which was approved by the Association's Board of Directors on 18 May 1997. The document addresses research ethics involving subjects who are impaired in their ability to make decisions, and strives to balance the needs of research with appropriate protection of individuals' rights. The document makes three main points:

• "For minimal risk research all individuals should be allowed to enroll, even if there is no potential benefit to the individual. In the absence of an advance directive*, proxy consent is acceptable."
• "For greater than minimal risk research and if there is a reasonable potential for benefit to the individual the enrollment of all individuals with AD is allowable based on proxy consent. The proxy's consent can be based on either a research specific advance directive or the proxy's judgment of the individual's best interests."
• "For greater than minimal risk research and if there is no reasonable potential for benefit to the individual only those individuals who (1) are capable of giving their own informed consent, or (2) have executed a research specific advance directive are allowed to participate. In either case, a proxy must be available to monitor the individual's involvement in the research. (Note: this provision means that individuals who are not capable of making their own decisions about research participation and have not executed an advance directive or do not have a proxy to monitor their participation, cannot participate in this category of research....)"

* "The Panel and the Association believe that for a considerable period of time after diagnosis, people with AD often retain their capacity to complete such an advance directive. The Panel noted that there are many expressions of profound altruism in which individuals with the disease indicate an explicit desire to contribute to an eventual cure of AD for the benefit of future generations."