Many people are unprepared to deal with the legal and
financial consequences of a serious illness such as Alzheimer's disease. Legal
and medical experts encourage people recently diagnosed with a serious
illness—particularly one that is expected to cause declining mental and
physical health—to examine and update their financial and health care
arrangements as soon as possible. Basic legal and financial instruments, such
as a will, a living trust, and advance directives, are available to ensure that
the person's late-stage or end-of-life health care and financial decisions are
carried out.
A complication of diseases such as Alzheimer’s is that
the person may lack or gradually lose the ability to think clearly. This change
affects his or her ability to participate meaningfully in decision making and
makes early legal and financial planning even more important. Although
difficult questions often arise, advance planning can help people with Alzheimer’s
and their families clarify their wishes and make well-informed decisions about
health care and financial arrangements.
When possible, advance planning should take place soon
after a diagnosis of early-stage Alzheimer’s disease while the person can
participate in discussions. People with early-stage disease are often capable
of understanding many aspects and consequences of legal decision making.
However, legal and medical experts say that many forms of planning can help the
person and his or her family even if the person is diagnosed with later-stage
Alzheimer’s.
There are good reasons to retain the services of a lawyer
when preparing advance planning documents. For example, a lawyer can help
interpret different State laws and suggest ways to ensure that the person's and
family's wishes are carried out. It's important to understand that laws vary by
State, and changes in situation—for instance, a divorce, relocation, or death
in the family—can influence how documents are prepared and maintained.
Legal, Financial,
and Health Care Planning Documents
When families begin the legal planning process, there are
a number of strategies and legal documents they need to discuss. Depending on
the family situation and the applicable State laws, some or all of the
following terms and documents may be introduced by the lawyer hired to assist
in this process. Broadly speaking, these documents can be divided into two
groups:
* documents that communicate the health care wishes of
someone who may no longer be able to make health care decisions.
* documents that communicate the financial management and
estate plan wishes of someone who may no longer be able to make financial
decisions.
Advance Directives for Health Care
Advance directives for health care are documents that communicate
the health care wishes of a person with Alzheimer’s disease. These decisions
are then carried out after the person no longer can make decisions. In most
cases, these documents must be prepared while the person is legally able to
execute them.
A Living Will records a person's wishes for medical
treatment near the end of life. It may do the following:
* specify the extent of life-sustaining treatment and
major health care the person wants.
* help a terminal patient die with dignity.
* protect the physician or hospital from liability for
carrying out the patient's instructions.
* specify how much discretion the person gives to his or
her proxy (discussed below) about end-of-life decisions
A Durable Power of Attorney for Health Care designates a
person, sometimes called an agent or proxy, to make health care decisions when
the person with Alzheimer’s disease no longer can do so. Depending on State
laws and the person's preferences, the proxy might be authorized to:
* refuse or agree to treatments
* change health care providers
* remove the person from an institution
* decide about making organ donations
* decide about starting or continuing life support (if
not specified in a living will)
* decide whether the person with Alzheimer’s will end
life at home or in a facility
* have
access to medical records
A Do Not Resuscitate (DNR) Order instructs health care
professionals not to perform cardiopulmonary resuscitation if a person’s heart
stops or if he or she stops breathing. A DNR order is signed by a doctor and
put in a person’s medical chart.
Access to private medical information is closely
regulated. The person with Alzheimer's disease must state in writing who can
see or use personal medical records.
Advance Directives
for Financial and Estate Management
Advance directives for financial and estate management
must be created while the person with Alzheimer’s still can make these
decisions (sometimes referred to as "having legal capacity" to make
decisions). These directives may include some or all of the following:
A Will indicates how a person's assets and estate will be
distributed upon death. It also can specify:
* arrangements for care of minors
* gifts
* trusts to manage the estate
* funeral
and/or burial arrangements
Medical and legal experts say that the newly diagnosed
person with Alzheimer’s and his or her family should move quickly to make or
update a will and secure the estate.
A Durable Power of Attorney for Finances names someone to
make financial decisions when the person with Alzheimer’s disease no longer can.
It can help people with the disease and their families avoid court actions that
may take away control of financial affairs.
A Living Trust provides instructions about the person's
estate and appoints someone, called the trustee, to hold title to property and
funds for the beneficiaries. The trustee follows these instructions after the
person no longer can manage his or her affairs.
The person with Alzheimer’s disease also can name the
trustee as the health care proxy through the durable power of attorney for
health care.
A living trust can:
* include a wide range of property
* provide a detailed plan for property disposition
* avoid the expense and delay of probate (in which the
courts establish the validity of a will)
* state how property should be distributed when the last
beneficiary dies and whether the trust should continue to benefit others
Who Can Help?
Health Care Providers—Health care providers cannot act as
legal or financial advisors, but they can encourage planning discussions
between patients and their families. Qualified clinicians can also guide
patients, families, the care team, attorneys, and judges regarding the
patient's ability to make decisions.
Elder Law Attorneys (ELAs)—An ELA helps older people and
families:
* interpret State laws
* plan how their wishes will be carried out
* understand their financial options
* learn how to preserve financial assets while caring for
a loved one
The National Academy of Elder Law Attorneys and the
American Bar Association can help families find qualified ELAs. See the list of
resources at the end of this fact sheet for more information.
Geriatric Care Managers (GCMs)—GCMs are trained social
workers or nurses who can help people with Alzheimer’s disease and their
families:
* discuss difficult topics and complex issues
* address emotional concerns
* make short- and long-term plans
* evaluate in-home care needs
* select care personnel
* coordinate medical services
* evaluate other living arrangements
* provide
caregiver stress relief
Steps for Getting
Your Affairs in Order
1. Gather everything you can about your income, property,
investments, insurance, and savings.
Put copies of legal documents and other important papers
in one place. You could set up a file, put everything in a desk or dresser drawer,
or just list the information and location of papers in a notebook.
If your papers are in a bank safe deposit box, keep
copies in a file at home. Check regularly to see if there's anything new to
add.
2. Tell a trusted family member or friend where you put
your important papers. You don't need to tell this friend or family member your
personal business, but someone should know where you keep your papers in case
of emergency. If you don't have a relative or friend you trust, ask a lawyer to
help.
Other Advance Planning Advice
3. Start
discussions early. The rate of decline differs for each person with Alzheimer’s
disease, and his or her ability to be involved in planning will decline over
time. People in the early stages of the disease may be able to understand the
issues, but they may also be defensive or emotionally unable to deal with
difficult questions. Remember that not all people are diagnosed at an early
stage. Decision making already may be difficult when Alzheimer’s disease is
diagnosed.
4. Review
plans over time. Changes in personal situations—such as a divorce, relocation,
or death in the family—and in State laws can affect how legal documents are
prepared and maintained. Review plans regularly, and update documents as
needed.
5. Reduce anxiety about funeral and burial arrangements.
Advance planning for the funeral and burial can provide a sense of peace and
reduce anxiety for both the person with Alzheimer’s and the family.
Resources for
Low-Income Families
Families who cannot afford a lawyer still can do advance
planning. Samples of basic health planning documents can be downloaded from
State government websites. Area Agency on Aging officials may provide legal
advice or help. Other possible sources of legal assistance and referral include
State legal aid offices, the State bar association, local nonprofit agencies,
foundations, and social service agencies.
Summary
Facing Alzheimer’s disease can be emotionally wrenching
for all concerned. A legal expert and members of the health care team can help the
person and family address end-of-life issues. Advance health care and financial
planning can help people diagnosed with Alzheimer’s and their families confront
tough questions about future treatment, caregiving, and legal arrangements.
