Legal and Financial Planning for 

    People with Alzheimer’s Disease

                        FA C T S H E E T 



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    and legal documents they need to discuss.            person, sometimes called an agent or proxy,
    Depending on th...
directives may include some or all of the         n   state how property should be
following:                             ...
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    n    coordinate medical services                          relocation, or death in the family—and
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Overview of Medical, Legal, and Financial Planning Documents
Medical Document                  How It Is Used
            ...
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    n   End of Life: Helping with Comfort          American Bar Association
        and Care                            ...
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Legal and Financial Planning for People with Alzheimer's Disease

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Legal and Financial Planning for People with Alzheimer's Disease

  1. 1. Legal and Financial Planning for People with Alzheimer’s Disease FA C T S H E E T M any people are unprepared When possible, advance planning to deal with the legal and should take place soon after a diagnosis financial consequences of a of early-stage AD while the person serious illness such as Alzheimer’s can participate in discussions. People disease (AD). Legal and medical experts with early-stage AD are often capable encourage people recently diagnosed of understanding many aspects and with a serious illness—particularly one consequences of legal decision making. that is expected to cause declining men- However, legal and medical experts say tal and physical health—to examine and that many forms of planning can help update their financial and health care the person and his or her family even arrangements as soon as possible. Basic if the person is diagnosed with later- legal and financial instruments, such stage AD. as a will, a living trust, and advance There are good reasons to retain the directives, are available to ensure that services of a lawyer when preparing the person’s late-stage or end-of-life advance planning documents. For health care and financial decisions are example, a lawyer can help interpret carried out. different State laws and suggest ways A complication of diseases such as to ensure that the patient’s and family’s Alzheimer’s is that the person may wishes are carried out. It’s important lack or gradually lose the ability to to understand that laws vary by State, think clearly. This change affects his or and changes in situation—for instance, her ability to participate meaningfully a divorce, relocation, or death in the in decision making and makes early family—can influence how documents legal and financial planning even more are prepared and subsequently main- important. Although difficult questions tained. often arise, advance planning can help people with AD and their families Legal, Financial, and Health clarify their wishes and make well- Care Planning Documents informed decisions about health care When families begin the legal planning and financial arrangements. process, there are a number of strategies Alzheimer’s Disease Education & Referral (ADEAR) Center A Service of the National Institute on Aging National Institutes of Health U.S. Department of Health and Human Services
  2. 2. 2 and legal documents they need to discuss. person, sometimes called an agent or proxy, Depending on the family situation and the to make health care decisions when the applicable State laws, some or all of the person with AD no longer can do so. following terms and documents may be Depending on State laws and the person’s introduced by the lawyer hired to assist preferences, the proxy might be authorized in this process. Broadly speaking, these to: documents can be divided into two groups: n refuse or agree to treatments n documents that communicate the health n change health care providers care wishes of someone who may no lon- ger be able to make health care decisions n remove the patient from an institution n documents that communicate the finan- n decide about making organ donations cial management and estate plan wishes n decide about starting or continuing life of someone who may no longer be able to support (if not specified in a living will) make financial decisions n decide whether the person with AD will Advance Directives for end life at home or in a facility Health Care n have access to medical records Advance directives for health care are documents that communicate the health A Do Not Resuscitate (DNR) Order care wishes of a person with AD. These instructs health care professionals not to decisions are then carried out after the per- perform cardiopulmonary resuscitation if son no longer can make decisions. In most a person’s heart stops or if he or she stops cases, these documents must be prepared breathing. A DNR order is signed by a doc- while the person is legally able to execute tor and put in a person’s medical chart. them. A Living Will records a person’s wishes Access to private medical for medical treatment near the end of life. information is closely regulated. It may do the following: The person with AD must state n specify the extent of life-sustaining in writing who can see or use treatment and major health care the personal medical records. person wants n help a terminal patient die with dignity Advance Directives for protect the physician or hospital from Financial and Estate n liability for carrying out the patient’s instructions Management n specify how much discretion the person Advance directives for financial and estate gives to his or her proxy (discussed management must be created while the below) about end-of-life decisions person with AD still can make these deci- sions (sometimes referred to as “having A Durable Power of Attorney for legal capacity” to make decisions). These Health Care appoints a designated 2
  3. 3. directives may include some or all of the n state how property should be following: distributed when the last beneficiary dies and whether the trust should A Will indicates how a person’s continue to benefit others assets and estate will be distributed upon death. It also can specify: Who Can Help? n arrangements for care of minors Health Care Providers—Health care n gifts providers cannot act as legal or finan- cial advisors, but they can encourage n trusts to manage the estate planning discussions between patients n funeral and/or burial arrangements and their families. Qualified clinicians can also guide patients, families, the Medical and legal experts say that the care team, attorneys, and judges newly diagnosed person with AD and regarding the patient’s ability to make his or her family should move quickly decisions. to make or update a will and secure the estate. Elder Law Attorneys (ELAs)—An ELA helps older people and families: A Durable Power of Attorney for Finances names someone to make n interpret State laws financial decisions when the person n plan how their wishes will be carried with AD can no longer do so. It can help out people with AD and their families avoid court actions that may take away n understand their financial options control of financial affairs. n learn how to preserve financial A Living Trust provides instructions assets while caring for a loved one about the person’s estate and appoints The National Academy of Elder Law someone, often referred to as the trust- Attorneys and the American Bar ee, to hold title to property and funds Association can help families find for the beneficiaries. The trustee follows qualified ELAs. See the list of resources these instructions after the person no section at the end of this fact sheet for longer can manage his or her affairs. more information. The person with AD also can name Geriatric Care Managers (GCMs)— the trustee as the health care proxy GCMs are trained social workers or through the durable power of attorney nurses who can help people with AD for health care. and their families: A living trust can: n discuss difficult topics and complex n include a wide range of property issues n provide a detailed plan for property n address emotional concerns disposition n make short- and long-term plans n avoid the expense and delay of n evaluate in-home care needs probate (in which the courts establish the validity of a will) n select care personnel 3
  4. 4. 4 n coordinate medical services relocation, or death in the family—and in State laws can affect how legal docu- n evaluate other living arrangements ments are prepared and maintained. n provide caregiver stress relief Review plans regularly, and update documents as needed. Other Advance Planning Advice Reduce anxiety about funeral and burial arrangements. Advance Start discussions early. The rate of planning for the funeral and burial decline differs for each person with AD, can provide a sense of peace and reduce and his or her ability to be involved in anxiety for both the person with AD planning will decline over time. People and the family. in the early stages of AD may be able to understand the issues, but they may Resources for Low-Income also be defensive or emotionally unable Families to deal with difficult questions. Remem- Families who cannot afford a lawyer ber that not all people are diagnosed at still can do advance planning. The an early stage. Decision making already following resources can help: may be difficult when AD is diagnosed. n Samples of basic health planning Review plans over time. Changes in documents can be downloaded from personal situations—such as a divorce, State government websites. Steps for Getting Your n Area Agency on Aging officials may Affairs in Order provide legal advice or help. n Gather everything you can about Other possible sources of legal assis- your income, property, invest- tance and referral include: ments, insurance, and savings. n State legal aid offices n Put copies of legal documents n the State bar association and other important papers in one place. You could set up a file, put n local nonprofit agencies everything in a desk or dresser drawer, n foundations or just list the information and location of papers in a notebook. If your papers n social service agencies are in a bank safe deposit box, keep copies in a file at home. Check regu- Summary larly to see if there’s anything new to add. Facing AD can be emotionally wrench- ing for all concerned. A legal expert n Tell a trusted family member or and members of the health care team friend where you put your impor- can help the person and family address tant papers. You don’t need to tell this friend or family member your per- end-of-life issues. Advance health care sonal business, but someone should and financial planning can help people know where you keep your papers in diagnosed with AD and their families case of emergency. If you don’t have confront tough questions about future a relative or friend you trust, ask a treatment, caregiving, and legal lawyer to help. arrangements. 4
  5. 5. Overview of Medical, Legal, and Financial Planning Documents Medical Document How It Is Used Describes and instructs how the person wants end-of-life Living Will health care managed Durable Power of Attorney for Gives a designated person the authority to make health care Health Care decisions on behalf of the person with AD Instructs health care professionals not to perform CPR in case Do Not Resuscitate Form of stopped heart or stopped breathing Legal/Financial Document How It Is Used Indicates how a person’s assets and estate will be distributed Will among beneficiaries after his/her death Durable Power of Attorney for Gives a designated person the authority to make legal/financial Finances decisions on behalf of the person with AD Gives a designated person (trustee) the authority to hold and Living Trust distribute property and funds for the person with AD For More Information n AD Lib (searchable online database) at www.nia.nih.gov/Alzheimers/ Alzheimer’s Disease Education and Resources/SearchHealthLiterature Referral (ADEAR) Center P Box 8250 .O. Eldercare Locator Silver Spring, MD 20907-8250 800-677-1116 (toll-free) 800-438-4380 (toll-free) www.eldercare.gov www.nia.nih.gov/Alzheimers Families often need information about com- A service of the National Institute on Aging, munity resources, such as home care, adult the ADEAR Center offers information and day care, and nursing homes. Contact the publications for families, caregivers, and Eldercare Locator to find these resources professionals on diagnosis, treatment, in your area. The Eldercare Locator is a patient care, caregiver needs, long-term service of the Administration on Aging. care, education and training, and research National Institute on Aging related to AD. Staff members answer Information Center telephone, email, and written requests P Box 8057 .O. and make referrals to local and national Gaithersburg, MD 20898-8057 resources. The ADEAR website offers free 800-222-2225 (toll-free) publications in English and Spanish, email 800-222-4225 (TTY/toll-free) alert and online Connections newsletter www.nia.nih.gov/HealthInformation subscriptions, the AD clinical trials data- www.nia.nih.gov/Espanol base, the AD Library database, and more. Additional helpful resources include: This service of the NIA offers many helpful publications, including: n Legal and Financial Issues: A List of Resources at www.nia.nih.gov/ n Age Page: Getting Your Affairs in Order Alzheimers/Publications/legal.htm 5
  6. 6. 6 n End of Life: Helping with Comfort American Bar Association and Care Commission on Law and Aging 740 15th Street, NW n So Far Away: Twenty Questions for Washington, DC 20005-1022 Long-Distance Caregivers 202-662-8690 National Library of Medicine www.abanet.org/aging MedlinePlus Family Caregiver Alliance http://medlineplus.gov 180 Montgomery Street, Suite 1100 Search for: San Francisco, CA 94104 “Advance Directives” 800-445-8106 (toll-free) “End-of-Life Issues” www.caregiver.org NIHSeniorHealth National Academy of Elder www.nihseniorhealth.gov Law Attorneys 1604 North Country Club Road Visit this senior-friendly website from Tucson, AZ 85716 the National Institute on Aging and the 520-881-4005 National Library of Medicine www.naela.org offering health information for older adults. Special features make it simple National Association of to use. For example, you can click on a Professional Geriatric Care button to have the text read out loud or Managers to make the type larger. 1604 North Country Club Road Tucson, AZ 85716 Other Organizations 520-881-8008 AARP www.caremanager.org 601 E Street, NW National Hospice and Palliative Washington, DC 20049 Care Organization 888-OUR-AARP (888-687-2277; toll-free) NHPCO Marketplace www.aarp.org/Families/legal_issues 1700 Diagonal Rd., Suite 625 Aging with Dignity Alexandria, VA 22314 P Box 1661 .O. 800-658-8898 (toll-free) Tallahassee, FL 32302-1661 877-658-8896 (Spanish/toll-free) 888-5WISHES (888-594-7437; toll-free) www.caringinfo.org/AdvanceDirectives www.agingwithdignity.org Alzheimer’s Association 225 N. Michigan Avenue, Suite 1700 Chicago, IL 60601-7633 800-272-3900 (toll-free) 866-403-3073 (TDD/toll-free) www.alz.org NIH Publication No. 08-6422 6 June 2008

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