Caregivers face a variety of challenges when a loved one develops Alzheimer's disease (AD) or a related disorder, including coping with their own emotions and stress. Caring for a memory-impaired person can be overwhelming. This list of resources includes words of advice and support from families, health professionals, and others who’ve been through the experience of caring for someone with AD and shared their wisdom in books, booklets, and other materials.
Some of the resources on this list 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 price and payment information are current. Many items are also available from retail and online booksellers.
In addition, many of the general resources listed in “Alzheimer’s Disease Caregiving: A Resource List,” posted on this website, contain chapters and sections that deal with caregiver emotions and stress.
The items on this resource list are organized alphabetically into two categories:
Alzheimer's: Down the Long Road. A Daughter's Journey with Her Mother.
Eastman, S. Phoenix, AZ: Sundowner Publishing. 2008. 134 p.
Available from Sundowner Publishing. 4757 East Greenway Road, Suite 107B, PMB97, Phoenix, AZ 85032-8510. E-mail: email@example.com. PRICE: $12.95. ISBN: 9780615238197.
The author’s mother had AD for the last 8 years of her life. Until that time, her mother had been an active woman who lived life to the fullest. The author and her sister accompanied their mother on her “journey through the valley of Alzheimer’s.” In this book, the author shares her experiences, thoughts, and feelings throughout that journey. She tells about recognizing that something was wrong, caring for her mother at home, joining a support group, moving her mother to residential care facilities, and coping with her death. At the end of each chapter, she offers tips for dealing with many of the problems that a family caregiver may encounter. She also provides some facts about AD and lifestyle changes that may help prevent the disease.
Alzheimer's Disease: The Dignity Within. A Handbook for Caregivers, Family, and Friends.
Callone, P.R., et al. New York, NY: Demos Medical Publishing, LLC. 2006. 128 p.
Available from Demos Medical Publishing, LLC. 386 Park Avenue South, Suite 301, New York, NY 10016. (800) 532-8663; FAX: (212) 683-0118. Website: www.demosmedpub.com. PRICE: $16.95. ISBN: 1932603131 and 9781932603132.
This handbook is a guide for caregivers, families, and friends of people with AD. It emphasizes the idea that we can better care for people with AD by recognizing the “essence within” that can be reached and empowered throughout the different stages of the disease. It also stresses the importance of self-care for caregivers. Part 1 looks at the concerns and needs of caregivers in the different stages of AD and offers solutions to these challenges. Part 2 tells the personal story of a husband and wife as they cope and come to terms with the husband’s AD. Part 3 presents true stories of the relationships that develop between people with AD and their caregivers, family members, and friends. Each story highlights different symptoms and situations that may arise at different stages of the disease and possible responses to those situations. The reader is asked to select one of the three possible responses, and these answers are used in Part 4 to assess one’s preferred caregiving style. Part 4 explains the changes to the brain that occur in AD. Appendices contain additional information about the brain and a worksheet for assessing your own brain health. References and index.
The Best Present You Can Give Your Loved One: Your Own Good Health.
Kensington, MD: National Family Caregivers Association/Caregiver Action Network. 2006. 6-panel brochure.
Available from the National Family Caregivers Association/Caregiver Action Network. 10400 Connecticut Avenue, Suite 500, Kensington, MD 20895. (800) 896-3650; FAX: (301) 942-2302. E-mail: firstname.lastname@example.org. Website: www.caregiveraction.org. PRICE: free online access; $6.50 per packet of 20 for members; $9.50 for nonmembers.
This brochure is designed to help family caregivers take better care of their own health. Family caregivers often put their loved ones’ health and well-being first and may not always do a good job of caring for themselves. However, research shows that the stress of caregiving can affect the immune system, making caregivers more prone to chronic illnesses, premature aging, and even premature death. Plus, if you become rundown, sick, or depressed, you will not be able to provide good care for your loved one. Protecting your health is a critical thing to do for both yourself and your loved one. This brochure suggests some easy ways to protect your health through physical activity, health maintenance, and finding respite, for example.
Care for the Caregiver: Managing Stress.
Clarksburg, MD: BrightFocus Foundation. 2005. 12 p.
Available from the BrightFocus Foundation. 22512 Gateway Center Drive, Clarksburg, MD 20871. (800) 437-2423; FAX: (301) 948-4403. E-mail: email@example.com. Website: www.brightfocus.org. PRICE: free print copy for up to 10 copies; 50 cents for each additional copy.
This booklet was written to help family members cope with the stress of caring for a loved one with AD. First, it outlines 10 warning signs for caregivers that stress may be having serious effects on their lives. Then, it offers advice to help caregivers recognize the things they can change for the better, and accept the things they cannot. Next, it suggests steps that caregivers can take to help manage and reduce their stress. These include taking time to meditate, doing something enjoyable every day, doing one thing at a time, making lists of things that need to be done, exercising regularly, sharing experiences with others, keeping a journal, and maintaining a sense of humor. It also explains why it is important to have a positive attitude and offers examples of how to turn pessimistic thoughts into more positive ones. Finally, the booklet lists resources for more information and assistance.
Caregiver's Friend: Dealing With Dementia.
Eugene, OR: Oregon Center for Applied Science. 2004. CD-ROM.
Available from the HealthComm Interactive, Inc. 260 East 11th Avenue, Eugene, OR 97401. (866) 846-4880; FAX: (541) 342-4270. E-mail: firstname.lastname@example.org. Website: www.hcimarketplace.com. PRICE: $39.99 plus UPS shipping and handling costs. Product number: 9.1.1.
This CD-ROM is an interactive, multimedia program that offers information and support to people caring for a family member with dementia. It covers a number of caregiver-related issues such as avoiding burnout, balancing responsibilities at home and work, caregiving phases, and changing roles. It includes videos of family caregivers talking about the ways they cope with feelings of guilt, anger, and sadness. The program also addresses common difficulties in the early, middle, and late stages of dementia. These include problems with health and safety, behaviors, emotions, communication, and daily living. Many of the topics include video dramatizations of caregivers handling these problems with their care recipients. The program can be personalized to meet individual needs. Also available as a Web-based product.
New York, NY: The Home Box Office (HBO). 2009.
Available from HBO Documentary Films. 1100 Avenue of the Americas, New York, NY 10036. (866) 316-4814; (212) 512-7467. New York, NY 10016. E-mail: AlzheimersProject@cegny.com. Website: www.hbo.com/alzheimers. PRICE: free online access and free Screening Kit at www.hbo.com/alzheimers.
“Caregivers” is part of The Alzheimer’s Project, which looks at groundbreaking scientific discoveries and seeks to increase public understanding of AD research and caregiving. This multimedia public health series is co-presented by HBO Documentary Films and the National Institute on Aging in association with the Alzheimer's Association, Fidelity Charitable Gift Fund, and the Geoffrey Beene Gives Back Alzheimer's Initiative. It includes a four-part documentary film series focusing on science and research, children touched by AD, and people across the United States with AD and their caregivers. “Caregivers” highlights the daily sacrifices and successes of people who are primary caregivers of loved ones descending into debilitating stages of dementia. “Grandpa, Do You Know Who I Am?,” narrated by Maria Shriver, shows how dementia can affect children and ways in which younger people can relate to older family members with memory problems. Other segments in the series include “The Memory Loss Tapes,” which provides personal views of seven individuals living with AD, and “Momentum in Science,” which takes viewers into the laboratories and clinics of 24 leading scientists and physicians who are working on cutting-edge research advances. The Alzheimer’s Project website offers free access to these films, as well as15 short films about scientists involved in research, interactive channels, discussion guides, tips, fact sheets, and an Alzheimer’s Tribute Wall on Facebook. A companion book, The Alzheimer’s Project: Momentum in Science, published by Public Affairs Books and a set of all films on DVD are also available.
Caring for a Person with Alzheimer's Disease: Your Easy-to-Use Guide from the National Institute on Aging.
Bethesda, MD: National Institute on Aging. June 2009. 136 p.
Available from the Alzheimer's Disease Education and Referral (ADEAR) Center. PO Box 8250, Silver Spring, MD 20907-8250. (800) 438-4380; (301) 495- 3311; 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.
This easy-to-use guide from the National Institute on Aging is designed to assist caregivers in understanding and coping with the many challenges of caring for people with AD. Written in plain language, the guide helps readers to understand how AD changes a person, cope with changes, plan for the future, make the home safe for the person with AD, and manage everyday activities like eating, bathing, dressing, and grooming. It also suggests how caregivers can take care of themselves, get help with caregiving, find out about helpful resources (including websites, support groups, government agencies, and adult day care programs), choose the right care facility for the person with AD, learn about common behavior and medical problems of people with AD, and cope with late-stage AD and end-of-life issues. This colorful publication also includes information about joining a clinical trial, a table summarizing medications used to treat AD and related disorders, and a glossary.
Dementia Caregivers Share Their Stories: A Support Group in a Book.
Markut, L..A., Crane, A. Nashville, TN: Vanderbilt University Press. 2005. 288 p.
Available from Vanderbilt University Press. Box 1813, Station B, Nashville, TN 37235. (800) 627-7377; FAX: (615) 343-8823. E-mail: firstname.lastname@example.org. Website: www.vanderbiltuniversitypress.com. PRICE: $24.95. ISBN: 97808265148. Also available in hardcover.
In this book, family caregivers share their stories about the challenges they faced at every step in the caregiving process. These caregivers were all members of an Alzheimer’s/dementia support group at a geriatric social service agency. They were interviewed to learn about their caregiving experiences, feelings, and the ways they coped with this role. Their comments are organized into chapters that follow a more-or-less chronological order of events. The topics include early symptoms and diagnosis, selection of the primary caregiver, behavior changes, maintaining meaningful involvement in life, the emotions of caregiving, getting help, holidays and other celebrations, coping with losses, caregiver stress, meaningful connections, and the death of the loved one. The caregivers also discuss how caregiving has changed them, and they offer advice for others in a similar situation. Appendices contain brief biographies of the caregivers and their loved ones with dementia and a list of resources for information and support.
Dementia, Caregiving and Controlling Frustration.
San Francisco, CA: Family Caregiver Alliance. 2003.
Available from the Family Caregiver Alliance, National Center on Caregiving. 180 Montgomery Street, Suite 1100, San Francisco, CA 94104. (800) 445-8106. E-mail: email@example.com. Website: www.caregiver.org. PRICE: free online access at www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=891.
This fact sheet offers practical suggestions for controlling frustration when caring for a person with dementia. It is important to distinguish between what is and what is not within a caregiver's power to change. Frustration often arises out of trying to change an uncontrollable situation. One thing that can be controlled, however, is how to react to that situation. In order to respond to an uncontrollable circumstance without extreme frustration, a caregiver will need to: 1) learn to recognize the warning signs of frustration, 2) intervene to calm oneself down physically, 3) modify thoughts in a way that reduces one's stress, 4) learn to communicate assertively, and 5) learn to ask for help. This fact sheet describes these steps to avoiding frustration and lists some resources for additional information and assistance.
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 14228-2197. (800) 421-0351; FAX: (716) 691-0137. Website: www.prometheusbooks.com. PRICE: $26.98. ISBN: 159102014X.
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: the pros and cons of being a caregiver, knowing when your parents need help, planning for interventions, caregiving realities, long-distance caregiving, finding and using support services, handling burnout, and managing benefits and insurance. The chapter on caregiving of family members with AD or related dementias includes information about testing and diagnosis, treatment options, effects on the family, what to expect as the disease progresses, how to organize for mild memory impairment, communication tips and coping skills, taking care of your own mind, body, and spirit, keeping a journal of your thoughts and feelings, and planning for the future. The book also has a list of caregiver organizations and resources, a glossary, and an index.
How Older Adults Can Manage Stress.
South Deerfield, MA: Channing Bete Company, Inc. 2007. 32 p.
Available from Channing Bete Co. One Community Place, South Deerfield, MA 01373-2000. (800) 477-4776; FAX (800) 499-6464. E-mail: firstname.lastname@example.org. Website: www.channing-bete.com. PRICE: $3.49 each for 1 to 99 copies; $2.99 each for 100 to 499. Item number: 92152.
Older adults may have special stressors, such as retirement, a change in living arrangements, illness, caregiving, or the loss of a loved one. If stress builds up, it can have negative effects on your physical and mental health. This handbook is designed to help older people manage stress by learning to recognize and respond to it. The first section provides an overview of stress, including its definition, effects, causes, and signs. It includes a journal that you can keep for one week to help identify some of the causes of stress in your life. The second section describes steps you can take to manage your stress. It includes general tips as well as suggestions for replacing negative thoughts with positive ones, taking care of your overall health, staying physically active, exercising your brain, avoiding alcohol and other substances, and engaging in meaningful and pleasant activities. This section includes charts for tracking your progress with the suggested actions. The last section suggests ways you can relax by practicing simple relaxation techniques, using professional services such as massage or biofeedback, taking time to do things you enjoy, and getting help from community organizations.
Lessons Learned: Shared Experiences in Coping.
Ballard, E., Poer, C.M. Durham, NC: Duke Family Support Program. 1999.
Available from the Alzheimer’s Disease Education and Referral (ADEAR) Center. P.O. 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: $7.00 for print copy.
This booklet documents the experiences of people caring for loved ones with AD. Filled with short stories and advice written by members of the Durham Evening Support Group, part of the Duke Family Support Program, it is intended for caregivers who wish to take comfort and learn from the experiences of others. Caregivers discuss milestones in the caregiving process, such as getting a diagnosis, finding support services, and making decisions about treatment, care, and living arrangements. The negative aspects of caregiving are discussed, such as stress and caregiver burden, but caregivers also talk about the rewards of caregiving and explain why they care for their loved ones. The roles of humor, love, pleasure, anger, and loneliness in caregiving are also discussed.
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, Suite 300, N.W., Washington, DC 20009. (800) 854-3402; FAX: (202) 638-5312. E-mail: firstname.lastname@example.org. Website: www.hospicefoundation.org. P RICE: $24.95 plus shipping. 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 the 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.
Mom's OK, She Just Forgets: The Alzheimer's Journey from Denial to Acceptance.
McLay, E., Young, E.P. Amherst, NY: Prometheus Books. 2006. 182 p.
Available from Prometheus Books, 59 John Glenn Drive, Amherst, NY 14228-2197. (800) 421-0351; FAX: (716) 691-0137. Website: www.prometheusbooks.com. PRICE: $17.98. ISBN: 1591024692.
This book focuses on the hidden issue of denial in families caring for a loved one with AD or another dementia. Denial may seem to be an acceptable coping mechanism when faced with a disease that has no cure. But in fact the failure to accept reality can make things worse for the patient and the whole family. In this book, the authors suggest various behaviors, tools, and techniques for moving beyond denial. Real people who have faced the many challenges of AD share their journeys from denial to loving action and an improved attitude that helps them cope with their personal troubles. Separate chapters address such issues as caregiver burnout, communication skills, difficult behaviors, when to take away driving privileges, day care for the elderly, deciding on long-term care, and the need for acceptance. The book includes lists of resources and suggested readings.
Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir.
O'Dell, C.D. Largo, FL: Kunati, Inc. Book Publishers. 2007. 208 p.
Available from Carol O'Dell. Website: www.caroldodell.com. PRICE: $19.95. ISBN: 9781601640031.
This book is the true story of a daughter coping with role reversal when her sick, aging mother moves in. Described as a “humorous and heartbreaking memoir,” the author’s frank account tells the story of her struggle to balance the ever-increasing demands of her mother with those of her three children and husband. Throughout it all, she must find time for herself for physical and spiritual renewal. This is not a how-to book on caregiving, but rather an honest exploration of the impact of caregiving on relationships, beliefs, and lives. Bibliography, index.
Pray With Me Still: Rosary Meditations and Spiritual Support for Persons With Alzheimer's, Their Caregivers and Loved Ones.
Notre Dame, IN: Ave Maria Press. 2006. 64 p.
Available from Ave Maria Press, P.O. Box 428, Notre Dame, IN 46556-0428. (800) 282-1865 ext. 1; FAX: (800) 282-5681. E-mail: email@example.com. Website: www.avemariapress.com. PRICE: $5.95. ISBN: 1594710775.
This book provides rosary meditations and spiritual support for people with AD, their caregivers, and loved ones. It begins by looking at the spiritual capabilities of AD patients through three case studies. Next, there is a section on how to pray the rosary and the prayers needed to pray it. Two different sets of meditations on the mysteries of the rosary are provided. The first set is designed to help caregivers become spiritually energized, renewed, and connected with their God. Each meditation relates some part of everyday life to one of the 20 mysteries. They can be used alone or be read along with praying the rosary. The second set is intended for use by caregivers when they are praying together with patients. These meditations are well suited for use before each decade of the rosary. The book concludes with a list of references and resources.
Pressure Points: Alzheimer's and Anger. ]
Ballard, E., Gwyther, L., Toal, T.P. Durham, NC: Duke Family Support Program. 2000. 70 p.
Available from the Alzheimer's Disease Education and Referral (ADEAR) Center, P.O. Box 8250, Silver Spring, MD 20907-8250. (800) 438-4380. E-mail: firstname.lastname@example.org. Website: www.nia.nih.gov/alzheimers. PRICE: $12.50 for print copy.
This book discusses the stress and anger that are common among caregivers of people with AD. Topics covered include defining anger, identifying risk factors for anger in AD caregiving, freeing oneself from the need to conform to expected behaviors, maintaining control, helping children deal with anger, coping when the person with AD is angry, identifying assumptions in caring for a person with AD, and dealing with abuse in the home or care facility. Also included are a personal story, a diary to record and identify anger-causing situations, and a suggested reading list. 48 references.
Strength in Caring: Giving Power Back to the Alzheimer's Caregiver.
Matloff, M. Syracuse, NY: Pathways to Harmony. 2005. (electronic book).
Available from online booksellers and lending libraries.
This electronic book is designed to help families and caregivers of people with AD strengthen themselves emotionally to cope with the demands they must face. It addresses a range of caregiving topics, including legal aspects of AD, medical facts, coping with grief, finding resources for additional help, combating negative feelings, managing stress, building happiness, and creating a plan to strengthen and empower yourself as caregiver. The chapters feature thought-producing questions, links to worksheets for practicing empowerment techniques, and lists of references and resources. The electronic version includes links to different topics within the book and to other websites. The first chapter can be downloaded free as a preview of the full book.
Strength for Caring.
Johnson and Johnson Consumer Products Company. 2006. Website: www.strengthforcaring.com.
Available from Johnson and Johnson Consumer Products Company, 199 Grandview Road, Skillan, NJ 08558-9418. (866) 466-3458. Website: www.strengthforcaring.com. PRICE: free online access at www.strengthforcaring.com.
This website is an online resource and virtual community for family caregivers developed as part of the Caregiver Initiative. It features articles, a message board, and links to other resources. The “Just for Caregivers” section has articles on family caregiving, balancing work and family, stress relief, sources of support, coping with grief, diet and wellness, comfort and relaxation, and holidays and events.
Available from the National Family Caregivers Association/Caregiver Action Network, 10400 Connecticut Avenue, Suite 500, Kensington, MD 20895. (800) 896-3650; FAX: (301) 942-2302. E-mail: email@example.com. Website: www.caregiveraction.org. PRICE: Free online access and free print subscription for CAN members and individual caregivers; $40.00 for professionals; $60.00 for nonprofit organizations; and $100.00 for for-profit organizations.
This quarterly newsletter for family caregivers focuses on needs and issues important to caregivers of chronically ill people. The purpose of the newsletter is to help maintain the psychological well-being of family caregivers and enhance their quality of life.
Take Care of Yourself: 10 Ways to be a Healthier Caregiver (La tension en las personas encargadas del cuidado de los enfermos de Alzheimer: como reconcerla que hacer).
Chicago, IL: Alzheimer's Association. 2008. 6-panel brochure.
Available from the Alzheimer's Association, 225 North Michigan Avenue, Floor 17, Chicago, IL 60601. (800) 272-3900. E-mail: firstname.lastname@example.org. Website: www.alz.org. PRICE: free print and free online access at www.alz.org/national/documents/brochure_caregiverstress.pdf.
As a caregiver, you may be so overwhelmed by taking care of someone else that you neglect your own physical, mental, and emotional well-being. If you find yourself without the time to take care of your own needs, you may be putting yourself and your health at risk. This brochure, which is available in English and Spanish, discusses 10 ways to be a healthy caregiver: 1) understand what’s going on with the patient as early as possible; 2) know what community resources are available; 3) become an educated caregiver; 4) get help; 5) take care of yourself, 6) manage your level of stress; 7) accept changes as they occur; 8) make legal and financial plans; 9) give yourself credit, not guilt; and 10) visit your doctor regularly. The brochure also lists 10 signs of caregiver stress that you should look for. It recommends that you talk to your doctor if you experience any of the signs on a regular basis.
Wait a Minute! When Anger Gets Too Much.
Durham, NC: Duke Family Support Program. 2003. 6-panel brochure.
Available from the Alzheimer's Disease Education and Referral (ADEAR) Center, P.O. Box 8250, Silver Spring, MD 20907-8250. (800) 438-4380. E-mail: email@example.com. Website: www.nia.nih.gov/alzheimers. PRICE: $2.00 for print copy.
This pamphlet was written for families who are caring for a loved one with AD or related dementia and are experiencing anger problems. Short scenarios are presented using the voices of dementia caregivers, followed by advice from Duke Family Support Program social workers. These scenarios deal with anger at the patient, anger at family members, anger at other care providers, and anger at the overwhelming circumstances. For example, in one scenario, the caregiver expresses anger about the never-ending job of cleaning up behind her husband and doing everything else over and over. This caregiver is advised to decide what is worth doing and what can be given up, to delegate whatever possible, and to lower her standards. One panel has space for writing the names and phone numbers of people who are good listeners. It encourages the caregiver to call these people when they need to vent their frustration and anger.
When a Family Member Has Dementia: Steps to Becoming a Resilient Caregiver.
McCurry, S.M. Westport, CT: Praeger/Greenwood Publishing Group, Inc. 2006. 184 p.
Available from Praeger, 88 Post Road West, Westport, CT 06881. (800) 225-5800; FAX: (877) 231-6980. E-mail: firstname.lastname@example.org. Website: www.greenwood.com/praeger.aspx. PRICE: $39.95. ISBN: 0275985741.
This book offers advice to help caregivers become more resilient as they deal with the challenges of caring for a loved one with dementia. The author is a clinical psychologist with years of experience working with family members who live with and care for a relative with dementia. In Section 1, she explores the importance of resilience for coping with the difficulties encountered in dementia caregiving. In Section 2, she offers a set of core principles that, when practiced, can help caregivers become more resilient and improve the care provided to loved ones. Her program is called “The Dementia Dance” or DANCE, an acronym for the five core principles: D: Don’t Argue, A: Accept the Disease, N: Nurture Yourself, C: Create Novel Solutions, and E: Enjoy the Moment. One chapter is devoted to each principle. In Section 3, the author shares three “secrets” that can help caregivers not to become overwhelmed and give up trying to become more resilient caregivers. Throughout the book, the author’s advice is illustrated with vignettes taken from her practice. She also provides a list of caregiving resources and a bibliography.
Alzheimer's Disease: Helping Yourself Help a Loved One.
Washington, DC: Alliance for Aging Research. April 2008. Workshop kit.
Available from the Alliance for Aging Research, 2021 K Street, N.W., Suite 305. Washington, DC 20066. (202) 293-2856; FAX: (202 785-8574. Website: www.agingresearch.org. PRICE: one free copy; $14 for each additional copy. Individual parts of the kit can be ordered for a price or downloaded for free: leader’s guide, $8; caregiver’s guide, $0.45; caregiver workbook, $8.
This kit is for a workshop on educating family caregivers on how best to care for a loved one with AD while taking care of their own needs. The materials include a leader’s guide, with tips and instructions on conducting the workshop plus updated information on the latest treatments and research; a short caregiver’s guide, with resources and information on caring for a loved one and yourself (also available in Spanish); a DVD, with stories from a family dealing with Alzheimer’s; and a caregivers workbook, which helps caregivers think about important issues and make the most of their limited time. The leader’s guide provides guidelines for planning and promoting the workshop, an outline of learning objectives and activities, a detailed workshop script, and a reproducible workshop evaluation form for participants. The caregivers workbook includes sections on keeping a health journal, preparing for health care appointments, organizing a medications list; learning about clinical trials, making the home safe, financial and legal planning, and taking care of yourself. Copies of eight workbook worksheets, including worksheets for health care appointments and medication lists, can be downloaded individually.
Caregiver Self-Assessment Questionnaire.
Chicago, IL: American Medical Association. 2005.
Available from the American Medical Association, 515 North State Street, Chicago, IL 60654. (800) 621-8335. Website: www.ama-assn.org. PRICE: Free printed packet and free online access.
This caregiver self-assessment questionnaire has been developed for distribution to physician offices. It is to be completed by caregivers when they accompany the patient for an office visit or when the physician identifies that the patient is providing long-term care to a family member. The caregiver completes the 16 yes/no items and 2 global scale items designed to measure levels of emotional and physical well-being. By using the self-assessment score as an index of caregiver distress, the physician can determine the need for supportive services and make referrals to community resources. The questionnaire is available in English and Spanish and includes instructions for scoring and interpreting the instrument, suggested actions, and a list of resources. The printed kit includes copies of English and Spanish versions as well as background information on the purpose and development of the questionnaire, how to incorporate it into a busy practice, and resources for caregivers.
Hit Pause: Helping Dementia Families Deal With Anger.
Ballard, E.L. Chapel Hill, NC: Duke Family Support Program. Duke Bryan Alzheimer's Disease Research Center. 2006. 12 p.
Available from the Alzheimer's Disease Education and Referral (ADEAR) Center, P.O. Box 8250, Silver Spring, MD 20907-8250. (800) 438-4380. E-mail: email@example.com. Website: www.nia.nih.gov/alzheimers. PRICE: $3.00 for print copy.
This booklet was written for professionals who work with families caring for a loved one with AD or a related dementia. It is designed to guide professionals in helping family caregivers who are angry with the care recipient, angry with other family members, or angry with professionals they feel are unresponsive or insensitive to the caregiver’s situation. The booklet presents typical scenarios and suggested responses for professionals helping families to maintain self-control and deal more effectively with the difficult circumstances. It also suggests ways professionals can respond to caregivers who become angry with them, such as turning a verbal attack on the professional into an opportunity to ask questions and find out what is bothering them. In addition, it includes tips to help caregivers deal with emotions such as sadness and guilt and to connect caregivers to useful organizations, publications, and other resources.