This page was last updated on April 15, 1999
An elderly person's decline and death particularly when intertwined
with questions of mental competence presents dramatic practical
and ethical dilemmas. This is especially true of a person suffering
from Alzheimer's Disease.
People with Alzheimer's face a host of difficult decisions. For
many, the high price of nursing home care–a likely necessity
that can cost anywhere from $24,000 to $95,000 a year–will
require detailed financial planning. Many will need legal help disposing
of assets, such as their home. They will also need to be guided
through government support programs like Medicare and Medicaid.
Their problems will range from the everyday -- whether or not they
should continue driving–to the profound–how should they
confront their final days of life? And all will be made under unprecedented
psychological and emotional stress that may require the assistance
of counselors or clergy.
The monkey wrench in this system is that the Alzheimer's sufferer,
because of the disease's degenerative effect on cognitive ability,
may not be able to make these decisions as they arise. When this
happens, there is often a vacuum of authority that must be filled
by family, doctors and institutions.
"The most difficult legal and ethical issues raised by Alzheimer's,"
explains Marshall Kapp, director of the Office of Geriatric Medicine
and Gerontology at Wright State University School of Medicine, "concern
who ought to be making medical and other kinds of decisions for
severely demented people."
According to Kapp, there are three basic models of surrogate decision-making.
In the most traditional model, the decision-maker acts according
to her own values in what she believes to be the patient's best
interest. The second approach encourages the decision-maker to imagine
what the patient's own preferences would be. The third model, known
as Advance Planning, goes one important step further, by referring
to written preferences articulated by the patient before severe
dementia set in. These stated wishes usually take the form of trusts,
durable powers of attorney, living wills, etc. They may not completely
eliminate the need for the other surrogate decision-making techniques,
but they help steer the decision-making process according to the
patient's own agenda.
Support organizations provide some limited financial and medical
planning guidance. However, most people will find it necessary to
consult a lawyer.
Elder Law, though not certified in every state, is a growing field
in which lawyers specialize in procedures important to older adults.
Even if they are not certified as elder lawyers, however, most trust
and estate lawyers are familiar with other elder law issues like
Medicaid eligibility and advance directives.
Among the elder lawyer's legal tools, trusts are perhaps most important
for clients with significant financial assets. Most trusts dictate
how resources will be handled after the individual's death. A living
trust does the same thing, but while the person is still alive.
The durable power of attorney is another important legal tool. It
allows a client to cede legal decision-making authority to another
person, usually a spouse or child. In the absence of trusts or a
durable power of attorney, a court may appoint a conservator to
manage a patient's property. This can be a cumbersome and expensive
process, however, and is best avoided.
Nursing home planning is another important elder law issue, as
most Alzheimer's patients eventually need this very expensive residential
option. While long-term care insurance is becoming more widespread,
it may be impossible to get after a person has been diagnosed with
AD. It can also be extremely expensive. Under Medicare, a voluntary
federal insurance program is available to people of all income who
are 65 and older. One can qualify for only a limited number of days
of nursing home support, provided professional care is necessary
and traceable to a condition for which the person has already been
hospitalized for at least three days. Otherwise, qualifying for
Medicaid, a program of medical benefits targeted at the poor, is
the only way to receive ongoing government assistance for long-term
nursing home care.
To help clients qualify for Medicaid, an elder lawyer must be familiar
with the intricacies of the regulations, which vary from state to
state. Often, qualifying for Medicaid can impoverish a spouse. In
many instances, there is a waiting period before the patient becomes
eligible. The elder lawyer's challenge is to help patients protect
their assets, spending or transferring them according to their wishes
without incurring unnecessary estate taxes.
Because potential business partners–a purchaser of the afflicted
person's house, say–may legitimately seek to protect themselves
from future legal challenges, it is often necessary to have a doctor
certify a sufferer's competency to conduct business transactions
or grant a durable power of attorney after the Alzheimer's diagnosis
has been made.
Ethical questions about competency will also arise in other, more modest
matters. How long should a person diagnosed with Alzheimer's continue
working? Who should be told about the diagnosis? No two people are identical,
and even within a single individual the level of competency can fluctuate.
Some Alzheimer's sufferers are more alert in the morning and become less
coherent over the course of the day. Those who drive may be perfectly
safe provided they stay within familiar neighborhoods. (Statistics indicate
that people with early onset Alzheimer's disease are generally better
drivers than 16- to 24-year-old men with new licenses). In these and countless
other situations, the afflicted person's competency must be monitored
and evaluated on a case-by-case basis.
The other major area of decision-making that Alzheimer's patients
face concerns medical treatment. While granting a durable power
of attorney over their financial affairs, patients should also consider
selecting a health care proxy–someone appointed to make medical
decisions when the patient can no longer do so. Similarly, just
as patients draft a will to put their material goods in order, they
should also take time to draft a living will, also known as an Advance
Directive, to express their wishes about medical contingencies that
may be encountered down the line. For example, should a patient
choose hospitalization and its medical imperatives, such as extreme
measures to prolong life?
Again, without such guidelines from the patient, family members,
doctors and institutions will be obligated to step in and make the
decisions themselves. It would be nice to imagine that these decisions
would be made in the patient's best interest, but this is not always
the case. A hospital, for example, may unnecessarily–some might
even say cruelly–tube-feed a dying patient in order to protect
itself from legal reproach later on.
Finally, because Alzheimer's disease is still untreatable, a patient
may have the opportunity to participate in experimental medical
protocols–studies that may or may not be personally beneficial.
Without the benefit of advanced directives, families may choose
to subject their loved one to unnecessary pain or discomfort. Or,
conversely, they may opt out of a protocol that the patient would
have willingly chosen to undertake.
In the long run, sound legal, financial and medical advance planning
will greatly reduce the hardships of Alzheimer's disease.
Where to go for more information
- The Alzheimer's Association (800) 272-3900,
www.alz.org
- National Family Caregivers Association (800) 896-3650,
www.nfcacares.org
- National Senior Citizens Law Center (202) 887-5280
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