(NIA) Caregivers face a variety of challenges when a loved one develops Alzheimer’s disease or another dementia. This resource list offers a selection of articles, books, and other materials that may help caregivers cope with their own stress, anxiety, and emotions.
Some resources on this list are free; others must be purchased. To buy an item, please contact the publisher to confirm price and payment information. Many items are also available from traditional and online bookstores.
Care for the Caregiver: Managing Stress (PDF, 175K) (2013, 19 p.)
This booklet for family caregivers of people with Alzheimer’s disease outlines 10 warning signs of severe caregiver stress, including depression and sleep problems. It discusses the importance of a positive attitude and suggests strategies for managing and reducing stress, including meditating, doing something enjoyable every day, exercising, and maintaining a sense of humor. Tips for combatting negative thoughts are also given.
Published by BrightFocus Foundation. Phone: 1-800-437-2423. E-mail: [email protected]. Free online access.
Caregivers (2009 video, 49 minutes)
“Caregivers” is one of four parts of “The Alzheimer’s Project,” a multimedia public health series 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. “Caregivers” highlights the daily sacrifices and successes of primary caregivers of loved ones descending into debilitating stages of dementia.
Produced by HBO Documentary Films. Free online access.
Caregiving and Ambiguous Loss (2013, 2 p.)
Many caregivers of people with dementia experience “ambiguous loss,” a feeling that comes from caring for a person who is physically present but mentally and psychologically absent. This feeling can lead to depression, anxiety, and other health problems. This fact sheet offers tips for coping with the ambiguity of caring for a person with memory loss.
Available from the Family Caregiver Alliance. Phone: 1-800-445-8106. E-mail: [email protected]. Free online access.
Caregiving Resource Center (2014)
This website from AARP offers information, tools, and tips for caregivers, including advice on stress management and caregiver support.
Published by AARP. Phone: 1-888-687-2277. E-mail: [email protected]. Free online access.
Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide from the National Institute on Aging (2013, 104 p.)
This free guide helps caregivers understand and cope with the many challenges of caregiving. Among other topics, it offers tips for caregivers to address their physical, emotional, and spiritual needs. It lists specific ways to ask for help.
Published by the National Institute on Aging Alzheimer’s Disease Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. E-mail: [email protected]. Free online access.
Caring for Yourself (PDF, 672K)(2012, 2 p.)
This online tip sheet suggests ways for caregivers to take care of themselves and where to ask for help. It briefly discusses the importance of asking for help, offers ways to bolster one’s own feelings, and provides tips to meet spiritual needs.
Published by the National Institute on Aging Alzheimer’s Disease Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. E-mail: [email protected]. Free online access.
Dementia Caregivers Share Their Stories: A Support Group in a Book (2005, 288 p.)
This book by Lynda A. Markut and Anatole Crane presents family caregivers’ stories about caregiving challenges. The caregivers, all members of an Alzheimer’s/dementia support group, were interviewed about their experiences, feelings, and ways they coped with their caregiving role. Topics include early symptoms and diagnosis, behavior changes, emotions, and coping with losses.
Published by Vanderbilt University Press. Phone: 1-800-627-7377. E-mail: [email protected]. Hardcover $69.95, softcover $24.95, e-book $23.99.
Dementia, Caregiving and Controlling Frustration (2003)
This fact sheet offers detailed suggestions for recognizing signs of frustration that can arise when trying to change an uncontrollable situation. Caregivers can learn to recognize what is and is not within their control and to respond appropriately. Strategies to cope with frustration, such as leaving the room briefly and counting to 10 slowly, and to adapt one’s thinking are given.
Available from the Family Caregiver Alliance. Phone: 1-800-445-8106. E-mail: [email protected]. Free online access.
Depression and Caregiving (2003, 4 p.)
Many caregivers of people with dementia suffer from depression. This tip sheet describes how to spot the symptoms of depression and what to do if you think you might be depressed. Medication, psychotherapy, and other treatments are described. Available in English, Spanish, and Chinese, as well as Korean and Vietnamese.
Available from the Family Caregiver Alliance. Phone: 1-800-445-8106. E-mail: [email protected]. Free online access.
Hit Pause: Helping Dementia Families Deal with Anger (PDF, 2.1M) (2006, 12 p.)
This booklet guides professionals to help caregivers who are angry with the care recipient, other family members, or professionals they feel are unresponsive or insensitive. The booklet presents typical scenarios and suggested responses for professionals to help caregivers maintain self-control and deal more effectively with difficult circumstances. Tips to help caregivers deal with sadness and guilt are also offered.
Available from the Duke Family Support Program. Phone: 1-800-672-4213 or 1-919-660-7510. E-mail: [email protected]. $2.
Lessons Learned: Shared Experiences in Coping (PDF, 151K) (1999).
This booklet by Edna Ballard and Cornelia Poer documents the experiences of a support group of people caring for loved ones with Alzheimer’s disease. Filled with short stories and advice, it covers topics such as getting a diagnosis, finding support services, and making decisions about treatment, care, and living arrangements. The positive and negative aspects of caregiving are discussed.
Available from the Duke Family Support Program. Phone: 1-800-672-4213 or 1-919-660-7510. E-mail: [email protected]. $10.
Living with Grief: Alzheimer’s Disease (2004, 290 p.)
This book explains how hospice principles can improve care for people with Alzheimer’s disease and their families. Along with background information and personal accounts about Alzheimer’s, the book presents information to help caregivers cope with loss both before and after the death of a loved one with the disease. The challenges of providing hospice care for people with dementia are also addressed.
Published by Hospice Foundation of America. Phone: 1-800-854-3402 or 1-202-457-5811. E-mail: [email protected]. $12.48.
Minding Our Elders: Caregivers Share Their Personal Stories (2005, 136 p.)
This book is a “portable support group” that shares caregivers’ stories as a way to offer comfort and to assure other caregivers that they are not alone. Six stories are from author Carol Bradley Bursack’s experience as a caregiver for a neighbor and six family members. The others are from caregivers across the United States. The author’s Minding Our Elders website has more resources and information.
Published by McCleery and Sons Publishing. Available from online booksellers. Paperback $12.53.
Mom’s OK, She Just Forgets: The Alzheimer’s Journey from Denial to Acceptance (2006, 182 p.)
This book by Evelyn McLay and Ellen Young focuses on denial in families caring for a loved one with dementia. Denial may seem to be an acceptable coping mechanism when faced with an incurable disease, but the failure to accept reality can make things worse for the person with dementia and his or her family. The authors suggest behaviors, tools, and techniques for moving beyond denial to loving action and an improved attitude.
Published by Prometheus Books. Phone: 1-800-421-0351. Paperback $17.98.
Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir (2007, 208 p.)
This book by Carol O’Dell tells the story of a daughter coping with role reversal when her sick, aging mother moves in. As she struggles to balance the ever-increasing demands of her mother with those of her three children and husband, the author must find time for her own needs. This is not a how-to book on caregiving, but an honest exploration of the impact of caregiving on relationships, beliefs, and lives.
Available from online booksellers. Phone: 1-904-403-2186. E-mail: [email protected].
Respite care helps caregivers get a break, hold a job, and handle stress. This national searchable database helps caregivers find respite of all types—in the home, in a facility, or at a day care center. The service also has a free guide, The ABCs of Respite: A Consumer Guide for Family Caregivers. Technical assistance for respite providers is offered as well.
Available from of the ARCH National Respite Nework and Resource Center. Phone: 1-919-490-5577. E-mail: [email protected]. Free online access.
Pressure Points: Alzheimer’s and Anger (PDF, 151K) (2000, 70 p.)
This book discusses the stress and anger that are common among caregivers of people with Alzheimer’s disease. Topics include defining anger, identifying risk factors for anger in caregivers, maintaining control, helping children deal with anger, coping when the person with Alzheimer’s is angry, and dealing with abuse in a home or care facility.
Available from the Duke Family Support Program. Phone: 1-800-672-4213 or 1-919-660-7510. E-mail: [email protected]. $10.
iCare Family (website)
This website offers online information and stress management training for family caregivers of people with Alzheimer’s disease or another dementia. The NIA-funded project includes online training videos and articles that cover dealing with stress, how to relax, managing difficult behaviors, communication skills, and other topics. Developed in collaboration with Stanford University and the Alzheimer’s Association.
Produced by Photozig Inc. Phone: 1-650-694-7496. E-mail: [email protected]. Free online access.
Strength in Caring: Giving Power Back to the Alzheimer’s Caregiver (2005)
This book by Mark Matloff is designed to help families and caregivers of people with Alzheimer’s strengthen themselves emotionally to cope with the demands they must face. It addresses a range of topics, including legal aspects of Alzheimer’s, medical facts, coping with grief, managing stress, and building happiness.
Available from online booksellers. Paperback $18.
Surviving the Waves of Dementia Care Grief (PDF, 2.0M) (2011, 3 p.)
This article in the summer-fall 2011 issue of Care ADvantage magazine (p. 17-19) describes how grief unfolds for caregivers of people with Alzheimer’s, from the time of diagnosis until the time of death. It discusses how grief can come and go and can change in intensity. Ways to cope, such as keeping a journal and maintaining an exercise routine, are offered.
Published by the Alzheimer’s Foundation of America. Phone: 1-866-232-8484. Free online access.
Take Care of Yourself: 10 Ways to be a Healthier Caregiver (PDF, 866K) (2012, 6 p.)
Caregivers may be so overwhelmed that they neglect their own physical, mental, and emotional well-being. This online booklet lists the signs of caregiver stress and get suggestions for managing stress and taking positive action.
Published by the Alzheimer’s Association. Phone: 1-800-272-3900. E-mail: [email protected]. Free online access.
Taking Care of YOU: Self-Care for Family Caregivers (2012, 4 p.)
This tip sheet can help caregivers think carefully about sources of stress, barriers to reducing stress, and ways to relieve stress. It offers concrete suggestions for developing achievable goals and solutions, such as exercising or talking to a doctor.
Available from the Family Caregiver Alliance. Phone: 1-800-445-8106. E-mail: [email protected]. Free online access.
Wait a Minute! When Anger Gets Too Much (PDF, 151K) (2003, 6 p.)
This pamphlet aims to help caregivers and family members of people with dementia deal with anger and frustration. It includes short scenarios and advice from social workers for dealing with anger at the person with dementia, family members, other care providers, and overwhelming circumstances.
Available from the Duke Family Support Program. Phone: 1-800-672-4213 or 1-919-660-7510. E-mail: [email protected]. $2.
When a Family Member Has Dementia: Steps to Becoming a Resilient Caregiver (2006, 184 p.)
This book by clinical psychologist Susan McCurry offers advice to help caregivers become more resilient as they deal with the challenges of caring for a loved one with dementia. Information is based on the author’s program called “The Dementia Dance” or DANCE, an acronym for five core principles: D: Don’t Argue, A: Accept the Disease, N: Nurture Yourself, C: Create Novel Solutions, and E: Enjoy the Moment. Vignettes from the author’s practice illustrate these principles.
Published by Praeger. Phone: 1-800-368-6868. E-mail: [email protected]. $39.95; call for e-book price.
https://www.nia.nih.gov/alzheimers/relieving-stress-anxiety-resources-alzheimers-caregivers
National Institute on Aging