People face a variety of challenges when a family member develops Alzheimer's disease (AD) or a related disorder. As AD progresses, caregivers may want more support, either to help the family member stay at home or to move him or her to a long-term care facility. This list contains resources that can help caregivers learn about and choose home health care, respite care, and adult day care services; assisted living facilities and nursing homes; and hospice and palliative care services. Some items specifically address the needs of caregivers of people with AD; others pertain generally to caregivers of all older adults.
Some of the resources listed below are free; others must be purchased. To buy an item, please contact the organization listed in the "available from" section of the description. Contact information was correct at the time this list was published. However, before you send payment for an item, please confirm that the price and payment information are current. Many items are also available from retail and online booksellers.
The items in this resource list are organized alphabetically in four categories:
Alzheimer's Association CareFinder. (website).
Available from the Alzheimer's Association, 225 North Michigan Avenue, Floor 17, Chicago, IL 60601-7633. (800) 272-3900; TTY: (866) 403-3073. E-mail: firstname.lastname@example.org.Website: www.alz.org. PRICE: Free online access at www.alz.org/carefinder/index.asp.
This online guide was developed to help people with AD and their family members find good care in their communities. The guide includes four main parts: Planning Ahead, Care Options, Coordinating Care, and Support and Resources. Planning Ahead offers information about evaluating a person’s ability to make decisions, the role of advance directives, paying for care, and using tax deductions and credits. Care Options explains the types of care that are available, how to recognize good care, and how to evaluate different care settings. It includes a form for assessing a person’s needs and a form for judging the person’s cognitive impairment. Coordinating Care describes different kinds of care providers and their training; advice about communicating with other family members and caregivers; solving problems; and making changes. Support and Resources includes sections on finding support, organizations that can help, fact sheets and forms, and a glossary. '
Eldercare 911: The Caregiver's Complete Handbook for Making Decisions. 2nd ed.
Beerman, S., Rappaport-Musson, J. Amherst, NY: Prometheus Books. 2008. 668 p.
Available from Prometheus Books, 59 John Glenn Drive, Amherst, NY 14228. (800) 421-0351; (716) 691-0133. E-mail: email@example.com. Website: www.prometheusbooks.com. PRICE: $26.95. ISBN: 1591026164.
This book is a guide to caregiving for elderly family members, including those with dementia. It is designed to help the caregiver make informed decisions about typical eldercare issues. The revised and updated edition includes new chapters on: protecting yourself from “toxic” relatives, aging in place, balancing work and caregiving, what to do in emergency situations, and words of wisdom from fellow caregivers. The topics that have been updated include: knowing when your parents need help (Chapter 2), finding and using support services (Chapter 9), hiring a homecare worker (Chapter 11), making decisions about housing (Chapter 19), evaluating the move to a nursing home (Chapter 20), and death and dying (Chapter 22). The book also has a list of caregiver organizations and resources, a glossary, and an index.
Family Care Navigator: State-by-State Help for Family Caregivers. (website).
Available from the Family Caregiver Alliance, 180 Montgomery Street, Suite 1100, San Francisco, CA 94104. Toll-free calls in California (800) 445-8106; (415) 434-3388. E-mail: firstname.lastname@example.org. Website: www.caregiver.org. PRICE: Free online access at www.caregiver.org/caregiver/jsp/fcn_content_node.jsp?nodeid=2083.
The Family Care Navigator is a comprehensive online guide to help families locate government, nonprofit, and private caregiver support programs suitable for their needs. Using the Resource by State feature, you can get general information and assistance as well as more detailed information about services for family caregivers, services for care recipients living at home, resources on living arrangements for care recipients, government health and disability programs, legal help and advocacy, disease-specific organizations, and family caregiver organizations. The website also provides answers to frequently asked questions, a glossary, a link to fact sheets and publications, and a link to federal and state legislation relevant to family caregiving.
The Family Guide to Alzheimer's Disease. Volume 5: Transitions.
Nashville, TN: LifeView Resources, Inc. 2004.
Available from LifeView Resources, Inc., 2844 Logan Street, Nashville, TN 37211. (800) 395-5433. Website: www.lifeviewresources.com. PRICE: $24.95, or $99.95 for the 5-volume set.
This DVD, part of a series for families affected by AD, addresses some of the difficult transitions families face as the disease progresses. First, it explains how to adapt social activities to accommodate the loved one’s increasing disability and isolation and how maintaining ties to religious rituals and places of worship can offer comfort and meaning. It explores issues involved in the transition to a care facility, including knowing when it is time to move, finding a good facility, making the move, and staying connected after the move. Finally, it offers insights from others who have gone through the process of grieving the loss of a loved one for whom they have provided years of care.
Senior Housing: Find the Community That's Right for You! (website).
This website offers a national online, searchable database of different kinds of senior housing. Its listings include assisted living facilities, adult family homes, residential care homes, Alzheimer’s/dementia care facilities, independent living facilities, skilled nursing facilities, nursing homes, and continuing care retirement communities. One page describes the types of senior housing. Another page provides access to a free booklet called Senior Housing: What You Need to Know, which looks at some of the major factors to consider when choosing housing. Another booklet, Dementia Care and Housing: What You Need to Know, is designed to help families select an appropriate housing option for an individual with dementia. It outlines the level of care provided in various housing options and discusses factors to consider when choosing housing.
The 36-hour Day: A Family Guide to Caring for People with Alzheimer's Disease, Other Dementias, and Memory Loss in Later Life. 4th edition.
Mace, N.L., Rabins, P.V. Baltimore, MD: The Johns Hopkins University Press. 2006. 352 p.
Available from the Johns Hopkins University Press. 2715 North Charles Street, Baltimore, MD 21218. (800) 537-5487. Website: www.press.jhu.edu. PRICE: $20.95. ISBN 9780801885105.
This book offers guidance and comfort for families caring for loved ones with AD, other dementias, and memory loss in later life. Now in its fourth edition, it is considered by many to be the bible for these caregiving families. The fourth edition includes new information on diagnostic evaluation, resources for families and adult children who care for people with dementia, updated legal and financial information, current information on nursing homes and other communal living arrangements, and the latest updates on research, medications, and the biological causes and effects of dementia. Chapter 10 discusses getting outside help for a person with dementia, including home health, respite, and adult day care. Chapter 16 talks about nursing homes and other living arrangements. The fourth edition is also available in a large-print version.
Your Money and Your Health: How to Find Affordable, High Quality Healthcare.
Braverman, J. Amherst, NY: Prometheus Books. 2006. 616 p.
This book was written to help readers get the best medical care possible at a reasonable cost. It answers many questions of concern to healthcare consumers today, including questions about the impact of managed care on the kind of medical care you receive, what Medicare HMOs are and how joining one affects the purchase of Medigap insurance, how you can save money on prescription drugs, your rights as a hospital or nursing home patient, and long-term care insurance. The book has 10 chapters that cover a variety of topics, including nursing home care, home health care, and hospice care. The book also provides directories of websites and health-related organizations, a glossary, and an index.
Adult Day Centers (A los centros diurnos de cuidados).
Chicago, IL: Alzheimer's Association. 2004. 3 p.
Available from the Alzheimer's Association, 225 North Michigan Avenue, Floor 17, Chicago, IL 60601-7633. (800) 272-3900; TDD (866) 403-3073. E-mail: email@example.com. Website: www.alz.org. PRICE: Free online access at www.alz.org/documents/topicsheet_adultday.pdf. (PDF, 71K)
This fact sheet is designed to help families of people with dementia select an adult day center for their loved ones. First, it discusses some of the reasons why a family might consider using an adult day center and offers general advice about finding a center, giving it a try, and reevaluating needs over time. Then, it looks at issues families should consider when evaluating an adult day center. For example, does it have any restrictions on the types of clients served? Will it perform a comprehensive assessment of the client’s needs? Does it offer services that the client and family need, such as counseling, health services, nutrition, personal care, behavior management, and/or accommodations for special needs? What is the cost? Are transportation services available? Is the facility inviting, spacious, secure, and free of clutter? And, is the facility well staffed with qualified caregivers? Available in English and Spanish.
This website offers a free online directory that allows users to search for home care, senior housing, and hospice providers by zip code, specific type of care needed, and payment method. It also has professionally reviewed articles on related topics, a member community with message boards and expert-authored blogs, and a question-and answer-section moderated by an industry expert advisory board.
National Respite Locator Service. (online search tool).
Available from ARCH National Respite Network, c/o Chapel Hill Training-Outreach Project Inc., 800 Eastowne Drive, Suite 105, Chapel Hill, NC 27514. Phone: (919) 490-5577. E-mail: firstname.lastname@example.org. Website: www.archrespite.org. PRICE: Free online access at www.archrespite.org/respitelocator.
This national service allows users to search for respite-care providers in their communities that serve people with specific needs, including Alzheimer’s and dementia, chronic illness/stroke, frail elderly, hearing impairment, physical disabilities, and visual impairment.
Respite Care Guide: Finding What's Best for You.
Chicago, IL: Alzheimer's Association. 2007. 18 p.
Available from the Alzheimer's Association, 225 North Michigan Avenue, Floor 17, Chicago, IL 60601-7633. (800) 272-3900; TDD (866) 403-3073. E-mail: email@example.com. Website: www.alz.org. PRICE: Free online access at www.alz.org/national/documents/brochure_respitecareguide.pdf. (PDF, 402K)
Respite care gives caregivers a break from caregiving tasks and gives people with dementia a break from the daily routine and the opportunity to meet others who share some of the same challenges. Respite care, whether a few hours or several days or weeks, can help by offering a new environment or time to relax. This booklet explains different kinds of respite care and suggests how to find a service. First, it describes five common types of respite care: in-home respite care, adult day centers, informal respite care, residential respite care, and respite care for emergency situations. Then, it offers advice about selecting a respite care service, overcoming concerns, preparing the care provider, preparing the person with dementia, and evaluating the service. It also provides checklists for screening different respite care options.
There's No Place Like Home—For Growing Old. Tips from the National Institute on Aging.
Bethesda, MD: National Institute on Aging. 2007. 6 p.
Available from the National Institute on Aging Information Center, P.O. Box 8057, Gaithersburg, MD 20898-8057. (800) 222-2225; TTY: (800) 222-4225. E-mail: firstname.lastname@example.org. Website: www.nia.nih.gov. PRICE: Free print copy and free online access at www.nia.nih.gov/health/publication/theres-no-place-home-growing-old.
This tip sheet offers practical suggestions for older adults who want to stay at home as they age. First, it discusses the kinds of help that might be needed, such as personal care, health care, homemaking, meals, money management, assistive devices and products, safety, and home modification. Then, it suggests resources to find these types of help. Finally, the brochure discusses the costs of getting help and lists resources that can help pay for services. The last page provides contact information for selected agencies and organizations.
About Paying for Nursing Home Care.
South Deerfield, MA: Channing Bete Co., Inc. 2006. 15 p.
Available from the Channing Bete Co., Inc., One Community Place, South Deerfield, MA 01373. (800) 477-4776. E-mail: email@example.com. Website: www.channing-bete.com. PRICE: $1.29 for 1 to 99 copies; $1.03 for 100 to 499 copies. Item number 38679.
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.
About Skilled Nursing Facilities Under Medicare. 2008 ed.
South Deerfield, MA: Channing Bete Company, Inc. 2008. 15 p.
Available from Channing Bete Company, Inc., One Community Place, South Deerfield, MA 01373. (800) 477-4776. E-mail: firstname.lastname@example.org. Website: www.channing-bete.com. PRICE: $1.29 each for 1 to 99 copies; $1.03 each for 100 to 499 copies. Item number 39321.
This easy-to-read booklet provides general information about skilled nursing facilities (SNFs) and Medicare coverage for SNF care. SNFs provide 24-hour nursing care, rehabilitation services, other medical services, equipment, and supplies. They can be long-term care facilities, special hospital units, or rehabilitation facilities. With simple language and drawings, this booklet explains what types of services an SNF provides, how Medicare helps cover care in an SNF, how to qualify for SNF care under Medicare, which services and supplies are and are not covered by Medicare Parts A and B, and what costs must be paid out-of-pocket. It also describes other sources of coverage for SNF care and answers questions about applying for Medicare, appealing a Medicare decision, and where to get more information.
A Consumer Guide to Choosing a Nursing Home.
Washington, DC: National Consumer Voice for Quality Long-Term Care. August 2009. 12 p.
Available from National Consumer Voice for Quality Long-Term Care (formerly the National Citizens’ Coalition for Nursing Home Reform), 1828 L Street NW, Suite 801, Washington, DC 20036. (202) 332-2276. E-mail: email@example.com. Website: www.theconsumervoice.org. PRICE: Free online access at www.theconsumervoice.org/sites/default/files/advocate/A-Consumer-Guide-To-Choosing-A-Nursing-Home.pdf. (PDF, 482K)
This fact sheet gives information and advice for prospective nursing home residents and their families to consider as they search for a facility. It advises them to plan ahead before visiting facilities by gathering information from long-term care ombudsmen, citizen advocacy groups, state inspection reports, and other sources. It briefly discusses paying for nursing homes. It provides a detailed guide to interpreting information from the “Nursing Home Compare” website (see separate listing in this section), including understanding quality measures and staffing levels. The fact sheet points out red flags that may indicate problems and provides a list of questions to ask when visiting a nursing home. Finally, it describes active family involvement to ensure that residents get good care.
Guide to Choosing an Assisted Living Residence.
Fairfax, VA: Assisted Living Federation of America. April 2005. 16 p.
Available from the Assisted Living Federation of America, 1650 King Street, Suite 602, Alexandria, VA 22314. (703) 894-1805. E-mail: firstname.lastname@example.org. Website: www.alfa.org. PRICE: Free online sample; print copy available at $49 for members and $149 for nonmembers; bulk orders available in sets of 50 copies and cases of 900 copies.
This guide is designed to help consumers choose an assisted living facility that best meets their needs. Assisted living is a long-term care option that combines housing, support services, and health care, as needed. Assisted living is appropriate for someone who needs some level of assistance with everyday activities. Some residents may have AD or other memory disorders. This booklet defines assisted living and describes the typical residents, communities, services offered, and costs. It outlines the philosophy of care consumers should look for that indicates the facility makes residents its top priority. It also provides a list of resources for finding an assisted living residence, tips on searching for a place, and a checklist to use when visiting and evaluating a potential new residence. The checklist includes questions about atmosphere; physical features; needs assessments, contracts, and costs; healthcare services; individual unit features; social and recreational activities; and food service.
Guide to Choosing a Nursing Home.
Baltimore, MD: Centers for Medicare and Medicaid Services. November 2008. 68 p.
Available from the U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services, 7500 Security Boulevard, Baltimore, MD 21244. (800) 633-4227. Website: www.medicare.gov. PRICE: Free online access at www.medicare.gov/Publications/Pubs/pdf/02174.pdf. (PDF, 1.2M)
This step-by-step consumer guide explains how to find and compare nursing homes and how to pay for nursing home care. The nine sections start with general information, including what Medicare will and will not pay for in skilled nursing care and nursing home services. The guide advises readers to consider if a nursing home is the only choice for care and presents alternatives. It outlines what people need to know to find and compare nursing homes and provides an extensive checklist of items to look at and questions to ask. The guide also describes sources of financing such as government programs, long-term care insurance, and personal resources; the transition from home to a nursing home; development of a plan of care; and residents’ rights and problem resolution. The printed guide includes state-by-state resources for more information.
How to Select a Special Care Unit: A Consumer's Guide to Special Care Units for Persons with Dementia.
Topeka, KS: Kansas Department on Aging. 2007. 13 p.
Available from the Kansas Department on Aging, 503 South Kansas Avenue, Topeka, KS 66603. (800) 432-3535; (785) 296-4986. Website: www.kdads.ks.gov. PRICE: Free print copy and free online access at www.kdads.ks.gov/Publications/SpecialCare/SpecialCareUnit2008.pdf. (PDF, 243K)
This guide is designed to help families select a special care unit for a loved one with dementia. The information can be used in discussions with the nursing home administrator and staff about the services and programs offered. It provides a brief overview of AD and related dementias and guidelines for evaluating a special care unit. It includes questions to ask the unit administrator about philosophy and goals, policies, management, environment, daily resident care, therapeutic activity programming, and costs. Several state and national resources are listed to contact for further information.
How to Tour a Nursing Home. (section of website).
Available from LeadingAge, 2519 Connecticut Avenue NW, Washington, DC 20008. (202) 783-2242. E-mail: email@example.com. Website: www.leadingage.org. PRICE: Free online access at www.leadingage.org/Article.aspx?id=203.
This section of the AAHSA website offers practical guidelines on what to look for when visiting a nursing home. For example, it advises visitors to look beyond the attractive lobby and the nicest rooms to consider all parts of the nursing home, from residents’ rooms and common areas to the dining room and special units, such as those for residents with AD. Tips for evaluating a nursing home’s quality of care and quality of life are given.
Insider's Guide to Better Nursing Home Care: 75 Tips You Should Know.
Reed, D.M. Amherst, NY: Prometheus Books. 2008. 222 p.
A licensed practical nurse and attorney, the author shares her knowledge to help families ensure that their loved ones receive the best nursing home care possible. She provides important information about the rights of nursing home residents and shows how family members can become more involved advocates for the care of a loved one. The advice is presented as 75 “tips you should know” about nursing home care. Topics covered include the legal requirements for nursing homes regarding delivery of care, adherence to these requirements, detailed descriptions of how the typical nursing home works, the responsibilities of each nursing home employee, nursing home inspections, residents’ rights, how to avoid substandard care, and actions to take to improve nursing home life.
Long-term Care. (website).
Available from the U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services, 7500 Security Boulevard, Baltimore, MD 21244. (800) 633-4227. Website: www.medicare.gov. PRICE: Free online access at www.medicare.gov/longtermcare/static/home.asp.
This federal website on long-term care provides basic information about medical and nonmedical services often used by people with chronic illnesses or disabilities. It describes steps to take in planning for and selecting long-term care, with information about types of care—including community-based services, home health care, assisted living, and nursing homes—and paying for long-term care. A confidential web-based tool allows users to get customized long-term care information.
LongTermCareLiving.com. (website under construction September 2011).
Available from the American Health Care Association/National Center for Assisted Living, 1201 L Street NW, Washington, DC 20005. (202) 842-4444. Website: www.ncal.org. PRICE: Free online access at www.longtermcareliving.com.
This website is a consumer guide to planning, preparing, and paying for long-term care of all sorts. It provides information about assessing needs, preparing for the move to long-term care, coping with the transition, and financing. Several free brochures are available to view and download; print copies can also be ordered. These brochures include “Caring for Someone with Alzheimer’s Disease,” “Choosing an Assisted Living Residence: A Consumer’s Guide,” “Choosing a Nursing Home,” and “Family Questions: The First Thirty Days.” The website also features a glossary, information about Medicare Part D drug benefits, and links to additional resources.
National Clearinghouse for Long-Term Care Information. (website).
Available from the U.S. Department of Health and Human Services, Administration on Aging, Washington, DC 20201. (202) 619-0724. Website: www.aoa.gov. PRICE: Free online access at www.longtermcare.gov.
This website was developed by the U.S. Department of Health and Human Services to provide information and resources to help people plan future long-term care needs. It is primarily intended for people who do not yet require long-term care, but it includes information on services and financing options that can be helpful to all individuals. The website has three main sections. Understanding Long-Term Care defines long-term care and describes how care needs can change over time. Planning for Long-Term Care focuses on the importance of planning ahead for long-term care, the likelihood of which increases as people get older. Paying for Long-Term Care describes long-term care costs and who pays them. The website includes links to related websites, a glossary, and other resources. Visitors can also order or download a free “Own Your Own Future Long-Term Care Planning Kit,” which contains information about public coverage of long-term care services, legal issues, and financing options.
Nursing Home Compare (Compare asilos de ancianos). (Online search tool).
Available from the Centers for Medicare and Medicaid Services (CMS), 7500 Security Boulevard, Baltimore, MD 21244-1850. (800) 633-4227; TTY: (877) 486-2048. Website: www.medicare.gov. PRICE: Free online access at www.medicare.gov/nursinghomecompare/ (English) and http://es.medicare.gov/nursinghomecompare/ (Spanish).
This online search tool, available in English and Spanish, provides detailed information about the performance of every Medicare- and Medicaid-certified nursing home in the United States. Users can search for nursing homes by state or county, by proximity to a particular city or zip code, or by name. For each listed nursing home, the search tool provides the address and telephone number, mapping/directions, number of beds, initial date of certification, type of ownership, and information about quality measures, staffing, and health inspection results. The website also features a checklist for evaluating and comparing facilities as well as links to awareness campaigns, free booklets about nursing homes and Medicare coverage, state websites, and other resources.
Nursing Homes: Making the Right Choice (Cuidado a largo plazo: escogiendo el lugar correcto).
Bethesda, MD: National Institute on Aging. January 2007. 12 panels.
Available from the National Institute on Aging Information Center (NIAIC). P.O. Box 8057, Gaithersburg, MD 20898-8057. (800) 222-2225; TTY: (800) 222-4225. E-mail: firstname.lastname@example.org. Website: www.nia.nih.gov. PRICE: Free print and free online access at www.nia.nih.gov/health/publication/nursing-homes-making-right-choice.
This fact sheet discusses nursing homes and how to find one that meets an elderly person’s needs. It describes different kinds of nursing homes, including those with special care units, and discusses how to find the right facility and how to pay for care. Additional organizations are listed that can provide more information. Available in English and Spanish.
Residential Care Options.
San Francisco, CA: Family Caregiver Alliance. 2006. 8 p.
Available from the Family Caregiver Alliance, 180 Montgomery Street, Suite 1100, San Francisco, CA 94104. Toll-free calls in California (800) 445-8106; (415) 434-3388. E-mail: email@example.com. Website: www.caregiver.org. PRICE: Free online access at www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1742.
This fact sheet provides an overview of residential options that offer medical and/or personal care services for people who need assistance in daily living. It is designed to help families select a facility that would be the most comfortable, safe, appropriate, and affordable for their loved ones. The fact sheet outlines the factors that trigger the decision to move into residential care, then offers tips to conduct a search and make a smooth transition. Then, it describes housing options: board and care homes, assisted living facilities, nursing homes, continuing care retirement communities, and special care units for people with dementia. It identifies the most common sources of payment for long-term care. Lists of references, recommended readings, and sources of additional information are included.
Senior Housing Finder. (website).
Available from the Alzheimer's Association, 225 North Michigan Avenue, Floor 17, Chicago, IL 60601-7633. (800) 272-3900; TDD: (312) 335-8882. E-mail: firstname.lastname@example.org. Website: www.alz.org. PRICE: Free online access at www.alz.org/we_can_help_senior_housing_finder.asp.
The Alzheimer’s Association Senior Housing Finder allows users to search a current list of licensed assisted living residences, nursing homes, dementia care and housing, and other types of senior housing. The Senior Housing Finder is an online nationwide senior housing database, and it allows users to search by geographic criteria, name of residence, housing type, availability status, and license type. The database is free and easy to use. It has more than 65,000 facility listings, which include contact information, a facility profile, and information about accommodations, number of residents, and Medicare/Medicaid coverage.
All About Hospice: A Consumer's Guide.
Washington, DC: Hospice Association of America. 2008. 11 p.
This online guide explains that hospice is treatment to provide reduction or abatement of pain and other troubling symptoms, rather than treatment aimed at cure, with supportive social and emotional/spiritual services to terminally ill people and their families. To help people make informed choices about hospice, the guide describes hospice services, the variety of settings in which these services are delivered, and the role of volunteers, who founded and remain the “backbone” of the hospice system. The guide describes how to find and pay for hospice services, with key terms to know when looking at programs. A checklist helps readers evaluate options and avoid problems. Finally, the Hospice Association of America’s hospice patients’ bill of rights is presented. A list of state hospice associations is available at www.nahc.org/stateforum/directory.html.
End-of-Life: Helping With Comfort and Care.
Bethesda, MD: National Institute on Aging. 2008. 68 p.
Available from the National Institute on Aging Information Center. P.O. Box 8057, Gaithersburg, MD 20898-8057. (800) 222-2225; TTY: (800) 222-4225. E-mail: email@example.com. Website: www.nia.nih.gov. PRICE: Free print and free online access at www.nia.nih.gov/health/publication/end-life-helping-comfort-and-care.
End-of-life care is the term used to describe the support and medical care given during the time surrounding death. This booklet was written to help make that time more comfortable for everyone involved. It is based on research supported by the National Institute on Aging and other organizations, supplemented with suggestions from practitioners with expertise in helping patients and families through this difficult time. The booklet includes chapters on providing comfort, finding care, dementia caregiving, understanding health care decisions, what happens when someone dies, getting help for grief, and planning for end-of-life care decisions. It also includes a list of resources.
End-of-Life Choices: Holding on and Letting Go.
San Francisco, CA: Family Caregiver Alliance. 2003. 5 p.
Available from the Family Caregiver Alliance, 180 Montgomery Street, Suite 1100, San Francisco, CA 94104. Toll-free calls in California (800) 445-8106; (415) 434-3388. E-mail: firstname.lastname@example.org. Website: www.caregiver.org. PRICE: Free online access at www.caregiver.org/caregiver/jsp/print_friendly.jsp?nodeid=400.
This fact sheet discusses the shifting emotions involved in “holding on” or “letting go” as the end of life approaches. The purpose is to help families address these sensitive issues ahead of time, to allow people with chronic illnesses such as AD to have some choice about their care, and to help families with the process of making difficult decisions. This fact discusses the thoughts and feelings people may experience as death approaches. Then it discusses the issues that arise when a person has a chronic illness and the importance of talking with loved ones about their wishes for the end of life. It also offers ideas on how to make the decision when the time comes. A list of resources for additional information and assistance is included.
Chicago, IL: Alzheimer's Association. 2006.
Available from the Alzheimer's Association, 225 North Michigan Avenue, Floor 17, Chicago, IL 60601-7633. (800) 272-3900; TDD (866) 403-3073. E-mail: email@example.com. Website: www.alz.org. PRICE: Free online access from local Association chapter and free online access at www.alz.org/professionals_and_researchers_end_of_life.asp
This online fact sheet is designed to help families make decisions about the care of a loved one with AD at the end of life. It discusses the use of advance directives to honor the individual's wishes and explains the different levels of medical care (aggressive, conservative, and palliative/comfort) that are available for people in the end stages of AD. It explores the factors to consider with artificial nutrition, antibiotics to treat infections, and a do-not-resuscitate order. It also offers suggestions for resolving family conflicts, requesting a brain autopsy, and coping with feelings, and includes a list of additional resources.
Living with Grief: Alzheimer's Disease.
Doka, K.J., ed. Washington, DC: Hospice Foundation of America. 2004. 290 p.
Available from the Hospice Foundation of America. 1621 Connecticut Avenue, N.W., Suite 300, Washington, DC 20009. (800) 854-3402. E-mail: firstname.lastname@example.org. Website: www.hospicefoundation.org. PRICE: $24.95 plus shipping fee. ISBN: 1893349055.
This book explains how hospice principles can improve care for patients with AD and their families. Part 1 provides background information about AD and related dementias, including the impact of dementia on society, the biology of AD, promising therapies, dementias other than AD, cultural influences, and dementia in older adults with intellectual disabilities. Part 2 presents personal accounts of the experience of AD from both patients and family members. Part 3 is focused on helping patients and caregivers cope with loss in AD. It discusses the grief issues associated with the disease itself as well as the mourning that follows death, grief counseling for people with cognitive impairment, assessing grief in family caregivers, caregiving styles, and spiritual issues. Part 4 looks at the future of dementia care, including the challenges of providing hospice care in dementia, barriers in the Medicare hospice benefit, ethical issues in end-of-life care, quality-of-life concepts in AD, and resources for family members and caregivers.
Planning Ahead. (website).
Available from the National Hospice and Palliative Care Organization, 1700 Diagonal Road, Suite 625, Alexandria, VA 22314. (800) 658-8898. E-mail: email@example.com. Web site: www.caringinfo.org. PRICE: Free online access at www.caringinfo.org/i4a/pages/index.cfm?pageid=3277.
The National Hospice and Palliative Care Organization provides online resources to help older people and people with a serious illness plan ahead for the end of life. The Planning Ahead topics include how to talk with loved ones and healthcare providers, deciding what kinds of life-sustaining treatment are or are not desired, and choosing an agent to make medical decisions. 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, sources of financial support, and information for the person's family and friends. The website also includes a planning ahead checklist and links to other end-of-life sources of information.
What is Hospice? (section of website).
Available from Hospice Foundation of America, 1621 Connecticut Avenue NW, Suite 300, Washington, DC 20009. (800) 854-3402. E-mail: firstname.lastname@example.org. Website: www.hospicefoundation.org. PRICE: Free online access at www.hospicefoundation.org/pages/page.asp?page_id=47055.
This brief online guide explains that hospice is a concept of care, not a place, designed to provide comfort and support to terminally ill people. The goal is not to cure or treat a patient, but to improve the quality of his or her last days. Care provided by a team, including family members, concentrates on controlling pain and discomfort. Hospice also deals with the emotional, social, and spiritual aspects of dying. The website explains who is eligible for hospice care, the caregiving team, what happens upon entering a hospice, and insurance coverage of hospice services. There is also a short “myths and facts” section and an opportunity to “ask an expert” a question via the website.