Alzheimer's cases raise murky legal issues.

The scope of the deadly brain disease called Alzheimer's has only been recognized for about a decade. Before then, cases of "senile dementia" and "hardening of the arteries" were usually chalked up to normal aging. Alzheimer's disease poses a huge and growing problem for our legal and medical systems. At least 4 million people in the United States are believed to have the disease, which usually appears late in a person's life and may last up to 20 years (7 years is average). The U.S. Department of Health and Human Services estimates that it costs society over $9 billion a year. Currently the U.S. population is growing, people are living longer, and the huge postwar baby-boom generation is rapidly approaching its 50s. The number of cases is expected to rise to 14 million by the middle of the next century.

Alzheimer's sufferers come into the courts through many doors.

* In California, a woman who had successfully taken in unwanted dogs and cats for years became a recluse and began neglecting them, herself, and her property. When the mess and noise from the hungry pets got too bad, her neighbors reported her to the community adult protective services.

* In Wisconsin, a man was placed in a nursing home because he was so confused that his family could no longer manage him. One day he became agitated and hit an experienced nurse. She sued him for negligence.

* In the District of Columbia, a neighbor moved in on an elderly woman and turned the place into a crack den. The police found her beaten and locked in her room.

These people entered the legal system because they were mentally incapacitated by Alzheimer's disease. For justice to be served, others involved--family members, social workers, police, lawyers, judges--must recognize and understand the disease. Dementia doesn't appear overnight, and along the way, symptoms may be subtle.

When the mental capacity of people brought into court is questioned, the judge can admit expert medical testimony on the extent of the person's cognitive and other impairments, said Dr. Greg Bloch of Georgetown Law Center.

"One problem for lawyers and judges is that the medical concept of capacity and the legal concept of mental competence are different," Bloch said. "Capacity is a medical assessment of a person's intellectual functioning, while competency is a legal determination of whether or not a person is authorized to make, and will be held responsible for, the class of decisions at issue."

Elder-law practitioners say the afflicted person's abilities and wishes should be honored as long as possible. "You don't lose all your rights the minute dementia is diagnosed," said Michael Gilfix of Palo Alto, California. "Mental incapacity comes in degrees. Alzheimer's is not instant brain death."

Understanding the legal issues looming over Alzheimer's sufferers is impossible without understanding the disease's peculiar features. It is progressive and terminal. The one commercially available medicine for its symptoms, Tacrin, helps only a small percentage of sufferers. The disease can be divided into five stages.

* In stage one, Alzheimer's sufferers begin to have problems with memory, energy level, attention, and mood swings, but both they and their families find it hard to recognize that they have the disease.

* In stage two, they have more and longer lapses in memory, attention, speech, and coordination. They may become anxious and have trouble with complex tasks like balancing the checkbook. But they still seem quite normal at times.

* In the third stage, it is clear that Alzheimer's patients are disabled. They may leave the stove burner on or wander away because they can't remember where they live. They may not recognize people they know well. They may "sun-down," starting the day lucid but becoming more confused or agitated in the evenings. But during their "good times" patients may still be able to make some decisions about the future, or at least choose who should do this for them.

* In stage four, Alzheimer's patients seem no longer to be themselves. They may be easily frustrated or suspicious. They may have sleep problems or hallucinations. They lose bladder and bowel control. They need round-the-clock care.

* In stage five, patients forget how to eat, walk, and talk. They are vulnerable to infections. Eventually they lapse into a coma and die.

Diagnosis of Alzheimer's is difficult. Until recently, little medical research on the disease had been done. Suggested causes include a slow virus, genetic factors, and environmental toxins. There may be more than one cause. Researchers are seeking a medical test to allow early diagnosis. Several are promising, but none works in all cases.

Unfortunately, in its early stages Alzheimer's can look like other forms of dementia and delirium that have very different prognoses and consequences. Confused mental states can also be caused by heart attack, depression, stroke, head injury, fever, dehydration, or a reaction to medication. Most of these conditions can be medically treated; some can be cured. Alzheimer's cannot. Doctors diagnose "dementia of the Alzheimer's type" through a process of elimination, ruling out other forms of dementia.

Firm diagnosis cannot be made until the patient dies and brain tissue is examined during autopsy.

Taking Care of Business

Advocates say that the best time to make plans and legal arrangements is in the early stages of the disease, despite the uncertainty of the diagnosis. Patients and their families should sit down with medical and legal counselors and devise a plan balancing patient autonomy, capacity, and needs. Delay is dangerous. As the disease progresses, patients' ability to sign legal documents comes into question.

"It's hard to face up to it, but the best thing is for the person to say early on, 'If I am ever incapacitated, this is who I want to take care of me, this is who I want to manage my property, this is how I want to leave my estate, and this is how I want to be treated medically,'" said Nancy Coleman, director of the ABA's Commission on the Legal Problems of the Elderly.

If possible, health insurance, Medicare and Medicaid eligibility, asset management, wills, and advance directives for medical care should be dealt with at this time. Experts recommend that people with Alzheimer's set up durable powers of attorney for health care and fiscal management. This will save the family from having to make decisions extralegally or go to court to get guardianship.

Issues of representation can be murky in Alzheimer's cases. Columbus, Ohio, family-law attorney Denise Mirman said it is almost inevitable that the medical interests of the sick person and the financial interests of the heirs will conflict. The more money is spent on caretaking, the less will be left to inherit.

The wishes and interests of different family members, to say nothing of the person with Alzheimer's, may be in conflict. The family members may want to make fiscal decisions that benefit them rather than the patient. The patient may want to do something that seems unwise or unconventional, like giving the house to the nurse. Or the patient and the family may agree on a plan that runs counter to the patient's best interests. In cases like these, the lawyer's role is not clearly defined.

When family members or others petition for guardianship of Alzheimer's patients, judges must evaluate the patients' wishes, their capabilities, and the proposed guardian's motivations. "The courts should emphasize preserving subject independence for as long as possible," Coleman said.

Even when patients apparently cannot think clearly, their preferences may be valid. District of Columbia attorney Shirley Williams of Legal Counsel for the Elderly, an affiliate of the American Association of Retired Persons, described a case where a son petitioned for guardianship over his father. The father resisted. He could barely explain, but he knew he did not want that son holding the reins. Investigation showed that the son had been bullying and cheating the family for years.

Outsiders, too, may try to impose. "I've seen several cases where someone just moved in and started to milk the estate," said Peter Wolf, the District of Columbia's former presiding probate judge. Good planning can also help protect against this kind of exploitation.

Wolf said guardianship cases make up a significant portion of the caseload in his court, and he believes the symptoms of Alzheimer's and the legal issues it raises are familiar to most experienced probate judges. But he thinks judges whose work has not brought them in contact with the disease, for example in courts where probate duties are rotated, may not recognize it.

As an example, Wolf described a criminal case from his pre-probate days involving a slumlord who never repaired his buildings and was constantly embroiled in landlord-tenant disputes. In one of these the man made patently untrue statements; he was prosecuted for perjury and jailed. But later, prison officials tested him and found he had Alzheimer's and may not have been legally competent to stand trial (or indeed to have managed his properties).

According to DaCosta Mason, another attorney with Legal Counsel for the Elderly, due process in guardianship proceedings varies widely in different states and even in different jurisdictions in the same state. There is little case or statutory law specific to Alzheimer's.

Many experts think the courts need standards for evaluating the capabilities and best interests of people with Alzheimer's and other dementias. Several groups are working on projects to help the legal system handle these cases.

* The National Center for State Courts has given District of Columbia lawyer Franklin Zwieg a grant to prepare a deskbook on dementias for judges.

* The Alzheimer's Panel of the National Institute on Aging is preparing a major report on the legal implications of the disease for the Department of Health and Human Services.

* The national Uniform Law Commission has proposed the Uniform Health Care Decision Act. This model law covers durable powers of attorney for medical and financial decisionmaking. "Many people with Alzheimer's dread the idea of being maintained for months or years as vegetables. The model law was designed to help ensure that their wishes on the circumstances of their death will be respected," Coleman said.

For more information, contact the Alzheimer's Disease Education and Referral Center in Silver Spring, Maryland, tel. [phone]; the American Health Assistance Foundation in Rockville, Maryland, tel. [phone]; and the Alzheimer's Association in Chicago, tel. [phone].