A variety of legal and ethical issues arise over the course of the various dementing illnesses (Sadler et al., 2003). Individuals whose memory, comprehension and judgment are relatively intact can often manage their own affairs, make wills, consent to medical treatment and so on. Later, these abilities become impaired, and issues arise, such as legal competence to perform various tasks and the ability to make a will. Legal issues are best addressed while patients have the capacity to understand and communicate.

One subject that needs to be addressed routinely and early is testamentary capacity: the ability to make and execute a will. The legal standard for this function is that individuals must know--at the time they sign or execute the will--the extent of their property, their blood relations, and the general nature of their material and other assets. They must also have sufficient ability to make a reasonable judgment based on this knowledge. For this reason, people with early-stage dementing illnesses should be encouraged to review the status of their wills. Creating an inventory of all assets and liabilities; locating deeds, insurance policies, bank and brokerage accounts; and establishing the ownership of any property or property rights are also important.

In other instances, competence must also be addressed, informally or formally. The most frequent clinical issue is competence to drive an automobile. In many parts of the country, this competence is addressed only once during a person's driving career. Often, the only legal standard for continuing to drive, once having acquired a license, is the ability to complete an application and to pass the vision test. The clinician, in conjunction with the family, must estimate competence in the case of a patient with cognitive impairment and help family members find means to enforce a no driving decision. Florida, Maryland, Michigan, New York, Ohio and Virginia are a few of the states that have programs to assist physicians and families in making these determinations.

Formal assessment of competence may be needed to determine the patient's ability to enter into a contract. This is determined by whether an individual understands the nature of a specific transaction and its implications. Marriage, for example, is a contractual relationship, and there are several well-known instances in which one of the marital partners did not appear to fully grasp the situation due to a dementing illness. Marriage contracts may be invalid if one of the partners did not understand the nature of the marriage ceremony or understand the obligations and responsibilities of the marriage.

Durable powers of attorney should be considered for health care (also known as medical power of attorney) or to manage property. With an appropriate durable power of attorney, a family member can consent to medical care or manage a patient's property should the patient lose competence in either of these areas, but the patient's wishes, if known, must be respected.

Guardianship may be appropriate under some circumstances. To become a guardian, applicants must demonstrate the inability of individuals to feed, clothe and shelter themselves; to care for their own physical health; and to manage their own property or financial affairs. A person's guardian can consent to medical treatment for the patient or control the patient's financial matters without their consent.

Ethical issues begin at the time of diagnosis and include whether to tell patients their diagnosis. Giving a diagnosis can enable patients and families to plan for disability (including application for disability for those who are still employed), help ascertain patients' preferences about treatment and research participation, and facilitate support from family and community organizations. However, this is best done in a supportive setting with adequate time to answer questions and deal with the patient's and family's emotional reaction (Post and Whitehouse, 1995). Such discussions may include considerations of treatment, course of illness, the nature of the illness, and the availability of various forms of support for the patient and family. Discussions of each person's values and preferences enable appropriate decision making in clinical situations that might arise later, such as the use of a feeding tube or resuscitative measures. On the other hand, conveying a definite diagnosis or pressing these issues may result in considerable discomfort for patients and families alike, and such issues may need to be raised gradually over the course of continued visits--or be raised only with the family members responsible for patients' ongoing care.

Individuals with dementing illnesses often need assistance for activities of daily living, whether at home or in extended-care settings. This involves creating an environment that is safe, sustains the dignity of the person, and optimizes opportunities for independent decision making and functioning. Most people prefer to choose how they live. However, people who are cognitively impaired often find themselves in conflict with others about how they choose to live (e.g., maintaining residence in a house that is difficult to keep up or living at a distance from potential caregivers). In these cases, it is tempting for family members to impose their own personal views of the right way for the person to live. The health care team can assist with a careful assessment of the patient's preferences. This often leads to compromise (e.g., employing a housekeeper instead of changing place of residence). When people with cognitive impairments are dangerously self-negligent by failing to take needed medications, careless in safety (e.g., smoking in bed) or behaviorally disturbed, they may require living in a supportive facility. The process of placement should include attention to individuals' needs, interests and abilities and the ability of a facility to meet them.

Decision-making capacity changes with disease progression. The ability to choose for oneself should be respected in principle. Ongoing assessment should be made of both capacities and incapabilities. A medically important area of decision making is that of accepting treatment with a cognitive enhancer or neuroprotective agent. These medications currently provide temporary slowing of progression and, in some cases, minimal cognitive improvement, but they do not affect long-term outcome of the disease process. Given the present level of efficacy of these medications, it is appropriate for patients to decide the desirability of taking them based on personal values or medication side effects.

As dementing illnesses progress, decisions may need to be made by proxy decision-makers. In general, proxy decision-makers should be people who have knowledge and respect for the patient's values and opinions. When possible, proxy decision-makers should make decisions based on the patient's view, but there are times when decisions must be based on what the proxy decision-maker regards as best. It is desirable that the proxy decision-makers be free of conflicts of interest, but they are often spouses or adult children who may stand to benefit from withholding certain types of care or advocating others. In some states, laws concerning medical powers of attorney/durable powers of attorney for health care permit physicians to not comply with the proxy decision-maker's wishes if the physician believes that the proxy is not acting in the patient's interests.

People with dementia may engage in behaviors that are distressing to them and others. The Fairhill guidelines on the ethics of the care of people with Alzheimer's disease advocated reliance on social and environmental modifications and creative activities to preserve independence and self-esteem (Post and Whitehouse, 1995). They suggested, for example, establishing safe areas for wandering as an effective management tool. Social, environmental and activity modifications are generally preferable to physical or chemical restraint. The Health Care Financing Administration guidelines require that nursing home residents be free from chemical or mechanical restraint unless warranted by a medical diagnosis and that the least restrictive means of control be used (Federal Register, 1991).

With regard to end-of-life care, people who do not have advance directives or durable powers of attorney for health care, and whose preferences at the end of life are not known, should have the health care institution's ethics committee consider their situation.

As dementing illnesses progress, the patient's ability to gather, understand and integrate information becomes more compromised. Choosing becomes more difficult. Thus, patients with dementia may be limited in both their ability to be informed and to respond appropriately. The clinical, ethical and legal issues surrounding informed consent with dementia patients differ in clinical and research settings.

Having a dementing illness is not an indication of impaired decision-making capacity per se. Intact decision-making capacity requires recognition that the person has a choice and includes understanding the medical situation and prognosis; understanding the recommended and alternative treatments with their risks and benefits and implications of no or limited treatment; and having relatively stable decision-making capacity over time. If a patient cannot meet these general standards, a proxy may be needed.

The U.S. government has established eight general rules for informed consent documents for participating in research (Code of Federal Regulations, 1999) (Table). However, these guidelines do not address impaired decision-making capacity. People who are cognitively impaired cannot digest this mass and complexity of information, thus requiring researchers and institutional review boards to carefully weigh risks and benefits for these people and consider modifications of protocols for their protection. Finally, there should be involvement of family or other caring surrogates in the consent process.

Dr. Weiner is professor of psychiatry and associate professor of neurology at the University of Texas Southwestern Medical Center in Dallas. He holds the Aradine S. Ard Chair in Brain Science and the Dorothy L. and John P. Harbin Chair in Alzheimer's Disease Research.

Code of Federal Regulations (1999), Title 45, Vol. 1, Revised, 45CFR46.116. Washington, D.C.: U.S. Government Printing Office, pp114-116.

Federal Register (1991), Health Care Financing Administration: Medicare and Medicaid; requirements for long-term care facilities; final registration. Washington, D.C.: U.S. Government Printing Office, 56:48865-48921.

Post SG, Whitehouse PJ (1995), Fairhill guidelines on the ethics of the care of people with Alzheimer's disease: a clinical summary. Center for Biomedical Ethics, Case Western Reserve University and the Alzheimer's Association. J Am Geriatr Soc 43(12):1423-1429 [see comment].

Sadler JZ, Bernstein BE, Marson DC (2003), Legal and ethical aspects. In: The Dementias: Diagnosis, Management, and Research, 3rd ed., Weiner MF, Lipton AM, eds. Washington, D.C.: American Psychiatric Publishing Inc., pp341-369.

Legal and Ethical Issues for Patients With Dementia and Their Families