Families face a variety of challenges when a loved one develops Alzheimer’s disease (AD) or a related disorder, including coping with legal and financial issues. This resource list provides an overview of helpful brochures, handbooks, tool kits, and other materials to help people with AD and their caregivers make appropriate decisions. The AD Lib number at the end of each item can be used to search for a full description of the item at www.nia.nih.gov/Alzheimers/Resources/SearchHealthLiterature, an online database of resources on the ADEAR Center website.
Legal and Financial Planning for People With Alzheimer’s Disease
Bethesda, MD: National Institute on Aging. June 2008. 6 p.
Available from Alzheimer’s Disease Education and Referral (ADEAR) Center. PO Box 8250, Silver Spring, MD 20907-8250. (800) 222-2225; (301) 496-1752; FAX: (301) 495-3334. E-mail: firstname.lastname@example.org. Website: www.nia.nih.gov/Alzheimers. PRICE: free print and free online access at www.nia.nih.gov/Alzheimers/Publications/legaltips.htm
This brochure offers information and advice about legal and financial planning for people with Alzheimer’s disease (AD). Because people with AD may lose the ability to think clearly and participate in decision making, advance planning for health care and financial arrangements is critical. When possible, advance planning should take place soon after a diagnosis of early AD, when the person can participate in discussions. When families begin the legal planning process, they should discuss two types of documents.
The first are documents that communicate the health care needs of someone who may no longer be able to make health care decisions. Advance directives for health care include a living will, a durable power of attorney for health care, and a do not resuscitate (DNR) order.
The second type of documents are those which communicate the financial management and estate plan wishes of someone who may no longer be able to make such financial decisions. Advance directives for financial and estate management include a will, a durable power of attorney for finances, and a living trust.
This tip sheet discusses these different kinds of advance directives, the types of professionals who can help with advance planning, general advice for advance planning, resources for low-income families, and steps for getting one’s affairs in order. (AD Lib 10646)
Connections (Newsletter of the Alzheimer’s Disease Education and Referral Center)
Connections. 15(1-2): 12 p. August 1, 2007.
Available from the Alzheimer’s Disease Education and Referral (ADEAR) Center. PO Box 8250, Silver Spring, MD 20907-8250. (800) 438-4380; FAX: (301) 495-3334. E-mail: email@example.com. Website: www.nia.nih.gov/Alzheimers. PRICE: free print and free online access at www.nia.nih.gov/Alzheimers/ResearchInformation/Newsletter
This newsletter issue provides caregiving advice and information about new resources available from the Alzheimer’s Disease Education and Referral (ADEAR) Center, a service of the National Institute on Aging (NIA). The feature article explores issues related to legal and financial planning for people with Alzheimer’s disease, with a focus on how the health care team can help.
The article emphasizes the importance of starting discussions early and revisiting plans often. It includes information about the roles of attorneys and geriatric care managers, different types of advance directives and financial management documents, resources for low-income families, and resources available from the ADEAR Center and other organizations.
Another article summarizes early results from the Alzheimer’s Disease Neuroimaging Initiative (ADNI). Regular features include highlights of materials recently added to the ADEAR Center’s online database of resources (AD Lib), updates on clinical trials and studies currently seeking volunteers, and a calendar of upcoming events. (AD Lib 10574)
Getting Your Affairs in Order
Bethesda, MD: National Institute on Aging. May 2006. 1 p. (12 panels).
Available from the National Institute on Aging Information Center (NIAIC). PO Box 8057, Gaithersburg, MD 20898-8057. (800) 222-2225; ( 800) 222-4225 (TDD). E-mail: firstname.lastname@example.org. Website: www.nia.nih.gov/HealthInformation/Publications. PRICE: Free online access at www.nia.nih.gov/HealthInformation/Publications/affairs.htm
This NIA fact sheet for patients, their families, and the general public provides practical information to aid aging people, their relatives, and friends in planning for the future and managing their legal and financial affairs. Personal and legal records and documents to prepare are listed, and steps to take for future needs are given. The importance of establishing such files, especially if caregivers live far away, is discussed. Resources are listed that provide free legal and financial services to help older people and their families. (AD Lib 01116.)
End of Life Decisions and Concerns: The Resident’s Perspective
Baltimore, MD: Video Press-University of Maryland School of Medicine. 2006. DVD. DVD, 15 min. (col)
Available from the Video Press-University of Maryland, 100 North Greene Street, Suite 300, Baltimore, MD 21201-1563. (800) 328-7450; FAX: (410) 706-8471. E-mail: email@example.com. Website: www.videopress.org . PRICE: $150.00 purchase; $75.00 rental.
This DVD explores the elderly resident’s perspective on end-of-life decisions and concerns. Some residents make decisions limiting the care they receive, while others prefer to have aggressive curative therapies no matter what their diagnosis is. All residents indicate how important family and health professional support is to them both during the decision-making process and then in respecting their wishes. Specific topics addressed in the DVD include: limiting treatment, do-not-resuscitate (DNR) orders, the medical power of attorney, feeding tubes, and artificial hydration. The presentation was taped on-location at Alice Manor Nursing Home. (AA-M). (AD Lib 10355)
Alexandria, VA: National Hospice and Palliative Care Organization. 2008.
Available from the National Hospice and Palliative Care Organization. 1700 Diagonal Road, Suite 625, Alexandria, VA 22314. (800) 658-8898. Website: www.caringinfo.org/i4a/pages/index.cfm?pageid=3277. PRICE: free online access.
The National Hospice and Palliative Care Organization (NAHCO) provides online resources to help older people and persons with a serious illness plan ahead for the kind of health care they desire for the end-of-life and how to protect one’s wishes with legal documents.
The Planning Ahead online resources on the NAHCO website include the topics: how to talk with your loved ones and your healthcare providers, deciding what kinds of life-sustaining treatment you want or do not want to put in your advance directives, and choosing a healthcare agent to make medical decisions for you when you are unable to.
This web page also links to a map of the United States with access to state-specific advance directives. In addition, the Planning Ahead web page includes financial information and advice, as well as sources for financial support and information for the person’s family and friends. A planning ahead checklist is also on this website, as well as links to other end-of-life issues.(AD Lib 10866)
Planning Your Advance Health-Care Directives. Self-Care Handbook
South Deerfield, MA: Channing Bete Company. June 2007. 31 p.
Available from Channing Bete Company. One Community Place, South Deerfield, MA 01373-0200. (800) 628-7733; FAX: (800) 499-6464. E-mail: firstname.lastname@example.org. Website: www.channing-bete.com. PRICE: $1.19 each for one to 99 copies. ITEM NUMBER: PS94347.
This user-friendly handbook is designed to help people plan their advance health-care directives and make decisions for end-of-life care. Advance directives are a means of exploring one’s wishes for medical treatment in emergency situations and at the end of life and communicating those wishes to loved ones and health care providers. Living wills and health-care proxies are two types of advance directives. Living wills are written documents that explain your wishes for care.
A living will might include instructions for life-sustaining treatments, pain management, and where you want to receive care. A health-care proxy names a person to make decisions for you if you become unable to do so. This handbook explains the two types of advance directives and offers guidance for talking about these issues with health care providers and family members. It includes worksheets for exploring values and feelings, recording important information, writing down wishes for a living will, and choosing a health-care agent. (AD Lib 10163.)
Five Wishes (Cinco Deseos)
Tallahassee, FL: Aging with Dignity. 2007. 11 p.
Available from Aging with Dignity, P.O. Box 1661, Tallahassee, FL 32302-1661. (888) 594-7437. PRICE: $5.00 single copy; $1.00 per copy for orders of 25 or more; $40.95 for family package including 10 Five Wishes, two Next Steps Guides, and one Five Wishes DVD; free online access to nonprintable version on website.
Five Wishes is an easy-to-complete legal document that lets you state exactly how you want to be treated if you become seriously ill. It is a living will that lets you talk about your personal, emotional, and spiritual needs as well as your medical wishes.
It includes instructions and pages where you can specify your wishes for: (1) the person you want to make health care decisions for you when you can’t make them for yourself, (2) the kind of medical treatment you want or don’t want, (3) how comfortable you want to be, (4) how you want people to treat you, and (5) what you want your loved ones to know. It also explains how to make the document legal and valid and what to do with it after it is completed. Five Wishes is available in English and Spanish.
Two related products also can be purchased. One is the Five Wishes Video that explains Five Wishes step-by-step; the video is available in VHS or DVD format and in English or Spanish. The other product is the Next Steps guide, which includes information on completing Five Wishes and talking to family members about their wishes, discussing Five Wishes with your doctor, and serving as a health care agent. (AD Lib 10757)
Having Your Say: Advance Directives. A Consumer’s Guide
Washington, DC: American Health Care Association. 2005. 9 p.
Available from the American Health Care Association and National Center for Assisted Living. 1201 L Street, NW, Washington, DC 20005-4015. (800) 628-8140; (202) 842-4444; FAX: (202) 842-3860. Website: www.longtermcareliving.com/prep/directives (direct access to the brochure). PRICE: free online access and free single print copy. Catalog number: 1473.
This brochure explains how you can use an advance directive to specify your medical treatment preferences if you become incapacitated and are no longer able to make informed decisions. There are two types of advance directive: a Living Will and a Medical Power of Attorney.
The Living Will generally states the kind of care you want or do not want if you become unable to make your own decisions or cannot communicate. Most states have their own Living Will forms, each somewhat different, or in some cases you can simply write a statement of your preferences for treatment.
The Medical Power of Attorney names another person such as a spouse, adult child, or significant other as your agent or proxy to make medical decisions for you if you are incapable of making them yourself. It is important to communicate with your agent in advance, and make sure they agree to this designation. Also, you can include instructions about your treatment preferences in the document.
You can modify, update, or cancel an advance directive at any time in accordance with state law. You should keep a copy of your advance directive in a safe place where it can be easily found. You should give other copies to your health care agent, doctor, long term care facility, and other health care providers. (AD Lib 09949.)
Legal Plans. Assisting the Person with Dementia in Planning for the Future
Chicago, IL: Alzheimer’s Association. 2005. 15 p.
Available from the Alzheimer’s Association. 225 North Michigan Avenue, Suite 1700, Chicago, IL 60601. (800) 272-3900; (312) 335-8700; FAX: (312) 335-1110. E-mail: email@example.com. Website: www.alz.org . PRICE: free single copy and free online access at www.alz.org/national/documents/brochure_legalplans.pdf
This booklet is designed to help families make legal plans for a loved one with dementia. Legal planning includes making plans for health care and long-term care, making plans for finances and property, and naming another person to make decisions on behalf of the person with dementia.
First, the booklet discusses the concept of legal capacity, or the ability to participate in decision-making and sign legal documents. Then, it explains important legal documents such as guardianship, the living will, living trust, power of attorney, power of attorney for health care, and will.
Next, it suggests ways to find a lawyer who specializes in elder law, to prepare for the meeting, and what to discuss at the meeting. It includes a checklist for meeting with the lawyer and a glossary of terms the lawyer might use. The back page has a list of quick tips for legal planning. (AD Lib10030.)
Advance Directives and End-of-Life Decisions
Alexandria, VA: National Hospice and Palliative Care Organization. 2005. 30 p.
Available from the National Hospice and Palliative Care Organization. 1700 Diagonal Road, Suite 625, Alexandria, VA 22314. (800) 658-8898. Website: www.caringinfo.org. PRICE: free online access.
This booklet is a guide to help older adults and family members plan for and communicate their wishes about future medical care. Choices about the kind of medical care, especially end-of-life care, that one wants may be difficult to think about, but this guide provides information about the documents to prepare in advance, such as a living will, advance directives, and medical power of attorney.
The purpose of each document is given and why they are important as written evidence of your wishes. Questions that you may have about the documents are asked with helpful answers. The guide includes Federal laws about advance directives, a glossary of terms used, a resource list for more information, and a lined page for notes. (AD Lib10865.)
Consumer’s Tool Kit for Health Care Advance Planning. 2nd ed
Washington, DC: American Bar Association (ABA) Commission on Law and Aging. 2005. 26 p.
Available from the American Bar Association (ABA) Commission on Law and Aging. 740 15th Street, N.W. Washington, DC 20005. (202) 662-8688. Website: www.abanet.org/aging . PRICE: free online access at www.abanet.org/aging/publications/onlinepublicationsconsumers.shtml
This tool kit from the American Bar Association was developed to guide people in making their health care advance directives. It does not create a formal advance directive for you, but instead helps with the tasks of discovering, clarifying, and communicating what is important to you in the face of serious illness. The kit contains 10 user-friendly tools in the form of self-help worksheets, suggestions, and resources.
The 10 tools are: (1) a guide to selecting your health care agent or proxy, (2) a worksheet that helps you think about situations in which you would not want medical treatments to keep you alive, (3) a worksheet that helps you evaluate the pros and cons of medical treatments, (4) a worksheet that helps you clarify the personal priorities and spiritual values important to your medical decisions, (5) a document for specifying your wishes about burial, autopsy, and tissue donation, (6) tips for talking with your family members about your wishes for end-of-life medical care, (7) a short quiz for evaluating how well your family, proxy, or physician knows your health care wishes, (8) information about what to do after signing your health care directive, (9) a guide to the duties and responsibilities of the health care proxy, and (10) a list of additional resources about end-of-life issues and advance planning for health care. (AD Lib 10820)
Questions and Answers When Looking for an Elder Law Attorney
Tucson, AZ: National Academy of Elder Law Attorneys, Inc. 2005. 6 p.
Available from the National Academy of Elder Law Attorneys, Inc. 1604 North Country Club Road, Tucson, AZ 85716. (520) 881-4005; FAX: (520) 325-7925. Website: www.naela.org/public/index.htm . PRICE: Free print copy and free online access at:
Elder law attorneys assist senior clients in planning for possible long- term care, including nursing home care, financial and estate planning, guardianships, and other issues relevant to the needs of Alzheimer’s disease patients and their families. This brochure provides information about elder law and what it covers and provides tips for finding an elder law attorney. Information is also given about what to do after selecting such an attorney, the discussion of fees, the establishment of a client-attorney contract, and how to make the use of an elder law attorney a good experience. (AD Lib 01280.)
Fact Sheet: Legal Issues in Planning for Incapacity
San Francisco, CA: Family Caregiver Alliance. 2004. 6 p.
Available from the Family Caregiver Alliance. 180 Montgomery Street, Suite 1100, San Francisco, CA 94104. (800) 445-8106; (415) 434-3388; FAX: (415) 434-3508. E-mail: firstname.lastname@example.org. Website: www.caregiver.org . PRICE: free online access and $1.00 for print copy.
This fact sheet addresses legal issues in planning for incapacity, such as when a family member is diagnosed with Alzheimer’s disease. First, it outlines the legal and financial matters that should be discussed when a family member has a health condition that may lead to incapacity.
Then, it explains when an attorney should be consulted, what are the options for managing assets, what are the options for paying for long-term care, how to protect assets for a well spouse, what are the options for distributing assets upon death, how to find an attorney to assist with legal planning, what kind of attorney should be consulted, and how to prepare for a legal consultation. Finally, it provides a glossary of relevant terms and a list of resources for additional information and assistance. (AD Lib 09905).
Durable Powers of Attorney and Revocable Living Trusts
San Francisco, CA: Family Caregiver Alliance. October 2001. 9 p.
Available from the Family Caregiver Alliance. 180 Montgomery Street, Suite 1100, San Francisco, CA 94104. (800) 445-8106; (415) 434-3388; FAX (415) 434-3508. E-mail: email@example.com. Website: www.caregiver.org . PRICE: single copy free, $1.00 for first five fact sheets, and free online access.
This fact sheet explains three legal mechanisms that can assist in the management of assets and health care when a person becomes incapacitated. The information may be useful for persons with Alzheimer’s disease and their families who want to prepare for making future financial and health care decisions. The mechanisms explained are the Durable Power of Attorney for Asset Management, the Durable Power of Attorney for Health Care, and the Revocable Living Trust.
The fact sheet explains the meaning of each document, how each works, who can serve as the agent or trustee, the powers conveyed to the named agent or trustee, and the implications for other aspects of legal and financial planning. A list of resources for additional information is included. (AD Lib 4113)
Money Matters. Helping the Person With Dementia Settle Financial Issues
Chicago, IL: Alzheimer’s Association. 2005. 27 p.
Available from the Alzheimer’s Association. 225 North Michigan Avenue, Suite 1700, Chicago, IL 60601. (800) 272-3900; (312) 335-8700; FAX: (312) 335-1110. E-mail: firstname.lastname@example.org. Website: www.alz.org. PRICE: free single print copy and free online access at www.alz.org/national/documents/brochure_moneymatters.pdf
This booklet is designed to help families make financial plans for a loved one with dementia. The first part explains how to get started by gathering financial and legal documents and discusses the loved one’s wishes, getting professional assistance, looking at factors that can affect income, and reviewing your own finances. The second part outlines the costs you may face now and in the future. The third part suggests some resources that can help cover those costs, including health insurance, disability insurance, long-term care insurance, life insurance, employee or retirement benefits, personal savings and investments, Social Security Disability Income, Supplemental Security Income, Medicaid, veterans benefits, tax benefits, financial help the caregiver can provide, and community support services. The back page has a list of 10 quick tips for settling money matters. (AD Lib 10032.)
About Paying for Nursing Home Care
South Deerfield, MA: Channing Bete Co., Inc. September 2006. 15 p.
Available from the Channing Bete Co., Inc. One Community Place, South Deerfield, MA 01373-0200. (800) 628-7733; (413) 665-7611; FAX (800) 499-6464. www.channing-bete.com PRICE: $1.19 for 1 to 99 copies; other quantities available. Order number: PS38679.
This booklet is designed to help families understand possible sources of funding for nursing home care. It explains the services provided by nursing homes and the importance of planning for nursing home care. It describes the different options families may use to pay for nursing home care: personal resources, Medicare, Medicaid, private long-term care insurance, veterans benefits, group insurance, and estate planning.
The booklet explains how to qualify for Medicaid, the limitations of Medicare coverage for nursing home care, and factors to consider before buying private long-term care insurance. It includes a worksheet to help families compare choices for nursing home care, identify their own financial resources and possible funding sources, and make a long-term care plan. It also includes a list of local, state, and national resources to contact for additional information and assistance. (AD Lib 06247.)
Medicare & You 2008 (Federal government handbook)
Baltimore, MD: Centers for Medicare and Medicaid Services. January 1, 2008. 120 p.
Available from the Centers for Medicare and Medicaid Services (CMS). 7500 Security Boulevard, Baltimore, MD 21244-1850. (800) 633-4113. Website: www.medicare.gov . PRICE: free print and free online access at www.medicare.gov/Library/PDFNavigation/PDFInterim.asp
Medicare & You 2008 is the official government handbook on Medicare health and prescription drug benefits and plan choices. It includes information for 2008 on your Medicare health and prescription drug plan choices, tips on what to consider when comparing plans, and resources where you can get detailed information and personalized help.
Section 1 describes Medicare Part A (hospital insurance) and what it covers, Part B (medical insurance) and what it covers, and the services that are not covered by Parts A and B.
Section 2 explains the plan choices and things to consider when choosing or changing your coverage. It covers the original Medicare plan, Medicare Advantage Plans (Part C), other Medicare health plans, Medicare Prescription Drug Coverage (Part D), other government insurance, and other private insurance options.
Section 3 suggests resources for more information, including where to get help for people with limited income and resources, how to file an appeal, how to protect yourself from identity theft and fraud, and where to get more information. (AD Lib 10745)
Long-Term Care Insurance: The Essentials. An Educational Guide
Westport, CT: MetLife Mature Market Institute. October 2006. 25 p.
Available from MetLife Mature Market Institute. 57 Greens Farm Road, Westport, CT 06880. (203) 221-6580; FAX: (203) 454-5339. E-mail: MatureMarketInstitute@metlife.com. Website: www.maturemarketinstitute.com. PRICE: free online access.
This guide is an introduction to long-term care (LTC) insurance to help adults, couples, and the general public plan and provide for any future LTC services they may need. The guide defines terminology that applies to LTC, describes some basic issues to consider before making decisions, and answers some frequently asked questions, such as the various ways to pay for LTC services, what are the costs of LTC insurance, how to select a policy, and how to evaluate a LTC insurance company.
The guide explains how certain disabilities are considered, such as if you become unable to perform two out of the six Activities of Daily Living or if a severe cognitive impairment develops (such as Alzheimer’s disease), or after you have been chronically ill for a long period of time. The MetLife website for this guide also gives access to additional information for LTC insurance for use in California, Florida, and Texas. (AD Lib10874.)
Shopper’s Guide to Long-Term Insurance
Kansas City, MO: National Association of Insurance Commissioners. 2006. 62 p.
Available from the National Association of Insurance Commissioners, NAIC Publications Department. 2301 McGee Street, Suite 800, Kansas City, MO 64108-2604. (816) 783-8300; FAX: (816) 460-7593. E-mail: email@example.com. Website: www.naic.org . PRICE: $.71 each print format; contact NAIC for bulk orders.
This guide is designed to help consumers understand long-term care and the insurance options that are available to pay for long-term care services. It answers question about what long-term care is, how much it costs, how you can pay for long-term care, who may need long-term care, who might need long-term care insurance, where you can get long-term care insurance, how long-term care insurance policies work, how your health might affect the ability to buy a policy, what happens if you have pre-existing conditions, how much long-term care policies cost, what options are available to pay the premiums on the policy, and what to consider when shopping for a policy.
It discusses the need to know which policies cover what types facilities (such as any state-licensed facility) and what disorders (such as dementia, Alzheimer’s disease, cognitive impairment, or the inability to do activities of daily living). The booklet also has a list of references, a glossary, a worksheet for recording information about local long-term care services, several worksheets for evaluating long-term care policies, a worksheet for recording personal information, and a list of helpful state agencies in the United States. (AD Lib 09798.)
Guide to Long-Term Care Insurance
Washington, DC: America’s Health Insurance Plans (AHIP). 2004. 20 p.
Available from America’s Health Insurance Plans (AHIP), 601 Pennsylvania Avenue, South Building, Suite 500, N.W., Washington, DC 20004. (202) 778-3200; FAX: (202) 331-7487. E-mail: firstname.lastname@example.org. Website: www.ahip.org. PRICE: free print copy and free online access. Also available in Spanish.
This booklet defines long-term care insurance, how it works, and costs involved. It also provides a checklist that can be used to compare insurance policies to aid people in decision-making. The text is organized in a format providing detailed answers to commonly asked questions.
Topics addressed are the need for long-term care insurance, what long-term care involves, the likelihood of the need for such care, financial responsibilities, what kind of insurance is available, what policies cost and cover, and services excluded from coverage. A summary of features of long-term care insurance, a list of addresses and telephone numbers of State insurance departments, and a glossary are appended. (AD Lib 10022)
Use Your Home to Stay at Home: A Guide for Homeowners Who Need Help Now.
Washington, DC: The National Council on the Aging. 2005. 20 p.
Available from the National Council on the Aging, 300 D Street SW, Suite 801, Washington, DC 20024. (202) 479-1200; FAX: (202) 479-0735; TDD: (202) 479-6674. E-mail: email@example.com. Website: www.ncoa.org . PRICE: free online access at www.ncoa.org/news-ncoa-publications/publications/
This guide is designed to help older homeowners decide if a reverse mortgage is right for them. Home equity can help older people pay the costs of staying in their own homes as they age. A reverse mortgage can help people with chronic conditions afford the services and supports they need to live at home.
This booklet can help older consumers understand the benefits and challenges of using home equity to pay for help at home. The first part helps you answer key questions: Will staying at home work for me? What resources do I have to help me stay at home? What other housing options are available? Once you decide that staying at home makes sense, the next step is to ensure you have adequate funds.
The second part explains the choices for tapping home equity, how much cash you can get from your house, and how to plan ahead to access home equity. The third part describes the government programs that can help older people who need help due to a chronic condition. The guide includes a list of resources for more information and some consumer tips. (AD Lib 10025.)