Alzheimer’s Disease Caregiving: A Resource List


This page contains resources listed at NIA Alzheimer's Disease Education and Referral Center (ADEAR).

Families face a variety of challenges when a loved one develops Alzheimer's disease (AD) or a related disorder. Coping with a new diagnosis of AD and providing care for a memory-impaired person can be overwhelming. Patients and families can prepare for these challenges in part by educating themselves. This resource list contains books, booklets, fact sheets, DVDs, and other materials specifically for caregivers of people with AD.

Caregivers may be able to borrow or rent some of the items on this list from a local Alzheimer's Association chapter or a hospital, public, or school library. To purchase 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.

Other ADEAR Center resource lists that may be helpful include:

The items in this resource list are organized alphabetically under each category. The categories are:

General Caregiving Resources

Books

Activities of Daily Living: An ADL Guide for Alzheimer's Care.

Laurenhue, K. Lakewood Ranch, FL: Wiser Now, Inc. 2006. 93 p.

Available from Wiser Now, Inc., 11949 Whistling Way, Lakewood Ranch, FL 34202. (800) 999-0795. E-mail: kathy@wisernow.com. Website: www.wisernow.com . PRICE: $7.95 for single copy; $15.00 for copy of this and Alzheimer's Basic Caregiving: An ABC Guide. ISBN: 097863621X.

This reader-friendly, often humorous book offers practical advice for helping people with Alzheimer’s disease (AD) and related dementias with basic activities of daily living (ADL). It is meant to be a companion to Alzheimer’s Basic Caregiving: An ABC Guide. The author emphasizes throughout that the behaviors of people with AD that are commonly viewed as problems are actually attempts to communicate, and that caregivers should try to look at the situation from the patient’s perspective. The book starts with basic rules for providing quality care for a person with AD. The next seven chapters focus on specific aspects of ADL care: reasons for resistance to care, dressing, grooming, oral hygiene, continence care, bathing, and nutrition and hydration. A list of resources and a bibliography are included at the end.

Alzheimer's Basic Caregiving: An ABC Guide.

Laurenhue, K. Lakewood Ranch, FL: Wiser Now, Inc. 2006. 127 p.

Available from Wiser Now, Inc., 11949 Whistling Way, Lakewood Ranch, FL 34202. (800) 999-0795. E-mail: Kathy@wisernow.com. Website: www.wisernow.com . PRICE: $7.95 for single copy; $15.00 for copy of this and Activities of Daily Living: An ADL Guide for Alzheimer's Care. ISBN: 0978636201.

This reader-friendly, lighthearted book offers practical advice on caring for a person with Alzheimer’s disease (AD) or related dementia. It is meant to be a companion to Activities of Daily Living: An ADL Guide for Alzheimer’s Care. Part I of Alzheimer’s Basic Caregiving provides background information about dementia in general, specific types of dementia (AD, dementia with Lewy bodies, and multi-infarct dementia), and mild cognitive impairment. It also discusses the pattern of progression in AD, how to distinguish between depression and dementia, and how to assess and relieve pain in people with AD. Part II addresses various caregiving issues, including effective communication; understanding agitated and aggressive behaviors; the role of environment; sleep disturbances; mobility, falls, and wanting to go home; shopping, gathering, rearranging, and repeating; and hallucinations, delusions, and paranoia. A list of resources is included at the end.

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 Alzheimer’s disease (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.

Caregiver Helpbook: Powerful Tools for Caregivers. 2nd ed.

Portland, OR: Legacy Caregiver Services. 2006. 232 p.

Available from Legacy Caregiver Services. 1015 NW 22nd Avenue, Portland, OR 97210. (503) 413-8018. E-mail: caregiver@lhs.org. Website: www.legacyhealth.org. PRICE: $25.00 each for fewer than 19 books. ISBN: 0978544803.

This book is designed to provide caregivers with tools to increase their self-care and confidence in handling difficult situations, emotions, and decisions. The advice is applicable to all caregivers, including those caring for a loved one with Alzheimer’s disease or other type of dementia. The first part includes chapters on taking care of oneself, reducing personal stress, communicating effectively with others, communicating effectively in challenging situations, learning from our emotions, managing caregiving transitions, and making tough caregiving decisions. The second part includes chapters on spouses and partners as family caregivers, working caregivers, long-distance caregivers, grandparent caregivers, caregiving at home, hiring in-home help, moving to a new place, sensory changes, caring for memory-impaired elders, driving issues, elder abuse, mental health, and grief and end-of-life issues. The chapter on caring for elders with memory impairment or dementia includes general guidelines for care and management, tips for effective communication, and suggestions for handling challenging behaviors such as agitation, bathing and eating problems, incontinence, repetitive speech or actions, paranoia, sleep difficulties, and wandering. A list of helpful resources is included at the end of each chapter. Classes are held in Oregon and Washington states based on this book.

A Caregiver's Guide to Alzheimer's Disease: 300 Tips for Making Life Easier.

Callone, P.R., et al. New York, NY: Demos Medical Publishing, LLC. 2006. 144 p.

Available from Demos Medical Publishing, LLC. 386 Park Avenue South, Suite 301, New York, NY 10016. (800) 532-8663. FAX: (212) 768-0118. Website: www.demosmedpub.com . PRICE: $16.95. ISBN: 1932603166.

This book offers tips and techniques to help families, friends, and caregivers assist people with Alzheimer’s disease (AD) or related dementia and ensure that they maximize the skills, talents, and abilities that remain at every stage of the illness. It also offers practical advice on how to cope with the personality and behavioral changes that occur throughout the disease’s progression. The first section presents tips for making life easier during the progression of AD. It is divided into chapters on the pre-AD, early to mild, moderate, and severe stages of the disease. Each chapter starts with a scenario depicting the changes that occur at each stage, followed by an overview of specific disease stage and description of how the disease affects different brain functions. The chapters also provide both general tips for caregivers and specific tips that will help the person with AD cope and compensate for changes that are occurring in memory, language, complex task performance, social skills, judgment and reasoning, ambulation, and the senses. The second section uses a question and answer format to provide additional information about caring for people with AD and related dementias. The third section provides lists of resources that are available for people with AD and their caregivers, family members, and friends. This book is a sequel to the book, "Alzheimer's Disease: The Dignity Within: A Handbook for Caregivers, Family, and Friends" Demos. 2006. Index.

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: adear@nia.nih.gov. Website: www.nia.nih.gov/Alzheimers. PRICE: Free print and free online access at www.nia.nih.gov/Alzheimers/Publications/CaringAD.

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.

Coach Broyles' Playbook for Alzheimer's Caregivers: A Practical Tips Guide.

Broyle, F. Fayetteville, AR: University of Arkansas. 2006. 93 p.

Available from the Alzheimer's Association. 225 North Michigan Avenue, Floor 17. Chicago, IL 60601-7633. (800) 272-3900. FAX: (312) 335-1110. E-mail: info@alz.org. Website: www.alzheimersplaybook.com . PRICE: free print copy and free online access. Arkansas residents can request book from: Barbara Broyles Legacy, 1826 North Crossover Road, Suite 1, PMB 104, Fayetteville, AR 72701. (479) 466-3739.

Frank Broyles, the author of this book, is the retired Athletic Director for the University of Arkansas Razorbacks. When his wife, Barbara, was diagnosed with Alzheimer’s disease (AD), he didn’t know much about the disease or how it would affect their lives. But he approached AD much like he would a sports opponent, with a solid game plan and dedicated team. He spent a lot of time seeking answers to questions before putting together a game plan. The information he acquired is contained in this book, which is organized like a coach’s playbook. It offers practical tips to guide others in taking care of their loved ones with AD. The book covers caregiving in the early, middle, and late stages of AD. It addresses such issues as getting a diagnosis, becoming a caregiver, taking care of legal matters, communicating with the person with AD, getting help from the family, home safety, daily routines, dealing with behavior problems, nursing home and hospice care, and letting go. Sections for each stage are color coded at the top or bottom of the page, and have a divider page to make the information easier to find.

Comfort of Home for Alzheimer's Disease: A Guide for Caregivers.

Meyer, M.M., Mittelman, M.S., Epstein, C., Derr, P. Portland, OR: CareTrust Publications, LLC. March 2008. 288 p.

Available from CareTrust Publications, LLC. P.O. Box 10283, Portland, OR 97296-0283. (800) 565-1533; FAX: (503) 221-7019. E-mail: resources@comfortofhome.com. Website: www.comfortofhome.com . PRICE: $24.95. ISBN: 9780978790301.

This book is designed to help caregivers provide day-to-day care safely and without conflict at all stages of Alzheimer’s disease (AD). Covering current practices for home care, it offers practical tips for everyday problems as well as more complicated and stressful situations. Part One, Getting Ready, describes the stages of AD and how the disease affects the person receiving care. It explains how to make the home safe and comfortable, how to get the best home care and financial advice and make decisions about the future, and how to maintain the physical and emotional health of the person with dementia. Part Two, Day-by-Day Living with Alzheimer’s Disease, offers guidance on how to communicate effectively, develop a daily schedule, and understand the changing behaviors of the person with AD while meeting one’s own needs. It includes advice on how to avoid caregiver burnout, activities of daily living, transfers and falls, understanding behavior in AD, and special occasions and challenges. Part Three, Additional Resources, provides a glossary of common medical terms to help caregivers understand the language that many health professionals use to talk about AD. It also includes a list of references for further reading and information about organizations and publications for caregivers.

Creating Moments of Joy for the Person With Dementia. A Journal for Caregivers.

Brackey, J. Polk City, IA: Enhanced Moments. 2007. 331 p. 4th ed.

Available from Enhanced Moments, P.O. Box 326, Polson, MT 59860. (406) 883-3770. E-mail: jolene@enhancedmoments.com. Website: www.enhancedmoments.com. PRICE: $17.00; ISBN: 1557533660. Also available from Purdue University Press, P.O. Box 388, 30 Amberwood Parkway, Ashland, OH 44805. (800) 247-6553; FAX: (419) 281-6883. E-mail: order@bookmasters.com. Website: www.thepress.purdue.edu. PRICE: $24.95 plus shipping and handling.

This book is a guide to creating moments of joy for people with Alzheimer’s disease (AD). Using illustrative stories, practical suggestions, and inspirational thoughts and prayers, it explores ways to help individuals with dementia enjoy moments of joy by reliving favorite pastimes and fond memories. Section one explains how people with AD may be living in another time and/or place in their minds, and why caregivers need to understand this in order to respond with understanding and patients. Section two describes strategies for creating positive outcomes. Examples include: remember their greatness, live their truth, use universal reasons, create a sense of belonging, stop correcting them, and blame it on something or someone else. Section three offers suggestions for positive verbal and non-verbal communication, quality connections, and difficult situations. Section four explains how to create an environment that provides a sense of comfort and peace. Section five suggests activities that can bring moments of joy to the care recipient and provider.

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; (716) 691-0133; FAX: (716) 564-2711. Website: www.prometheusbooks.com. PRICE: $26.95. ISBN: 9781591026167.

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, managing medical issues, overseeing medications, managing benefits and insurance, dealing with serious illness, coping with Alzheimer's disease (AD), when hospitalization is necessary, detecting and dealing with elder abuse, hiring a homecare worker, making decisions about housing, evaluating the move to a nursing home, sexual intimacy and new relationships, and death and dying. The chapter on caregiving of family members with Alzheimer's disease (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 index.

Finding the Bloom of the Cactus Generation: Improving the Quality of Life for Seniors.

Walters, M. Scottsdale, AZ: LifeSuccess Publishing, LLC. 2007. 183 p.

Available from Cactusgeneration.com. (800) 477-7681. E-mail: info@cactusgeneration.com. Website: www.cactusgen.com. PRICE: $17.95. ISBN: 1599300115. Also available as an e-book for $29.95.

When seniors can no longer care for themselves, they often end up in long-term care. Many families face the situation of moving an elderly loved one out of his or her home and into a place where they will receive assistance and care. Many of these seniors will have AD or a related dementia. This is a difficult time, and many hard decisions will have to be made. This book is a true story about working with seniors in care facilities. It is about finding means of support, other than financial, for the senior population through connection on multiple levels. The author, a massage therapist who works with seniors in long-term care, explores the quality of life for seniors in long-term care and the ways that families, caregivers, and society can continue to relate to them as they move toward the end of life. Based on her own background, she also looks at how touch can break through the barriers of AD and promote communication and healing. She includes a selected bibliography and list of resources at the end of the book.

Into the Mist: When Someone You Love Has Alzheimer's Disease.

Uetz, D. Philadelphia, PA: Xlibris Corporation. 2005. 309 p.

Available Xlibris Corporation, International Plaza II, suite 410, Philadelphia, PA 19113-1513. (888) 795-4274; FAX: (610) 915-0294. E-mail: info@xlibris.com. Website: www2.xlibris.com. PRICE: $19.54 (paperback). ISBN: 1413492606 (paperback).

This book combines information from researchers, experts, and families into a comprehensive guide for AD caregivers. The first part contains the personal accounts of three families caring for a loved one from the earliest stages to the last stages. The stories of Jack, Frank, and Shirley, told by their daughters, illustrate the commonalities and differences among AD patients and the ways their families handle the most difficult challenges. The second part offers information to help families cope with the psychological aspects of AD, making hard choices, behavior problems, and communication difficulties. The third part addresses such topics as the stages of AD, Medicare, Medicaid, long-term care insurance, geriatric care management, the diagnosis of AD, causes and prevention, and drug treatments. The book also has an interview with a leading scientist about the current state of AD research and a glossary of AD-related terms.

Mayo Clinic Guide to Alzheimer's Disease: The Essential Resource for Treatment, Coping and Caregiving.

Petersen, R., ed. Rochester, MN: Mayo Clinic Health Solutions. 2006. 350 p.

Available from the Mayo Clinic Health Solutions Bookstore. P.O. Box 3301, Big Sandy, TX 75755-9343. (800) 291-1128. E-mail: customerservice@mayopublications.com. Website: http://bookstore.mayoclinic.com . PRICE: $29.95. ISBN: 1893005410.

This guide is designed to help non-professionals understand dementia and its effects on your mind, the differences between dementia and changes associated with normal aging, and how to improve memory and maintain good mental function. Part 1 provides an overview of dementia, the physical and mental changes that occur in normal aging, and the process of diagnosing dementia. Part 2 focuses on Alzheimer’s disease, including how it develops, its stages, diagnosis, biological basis, and treatment. Part 3 discusses non-Alzheimer’s forms of dementia, including frontotemporal dementia, dementia with Lewy bodies, vascular cognitive impairment, and others. Part 4 highlights the latest information in such areas as mild cognitive impairment, ways to stay mentally sharp, and research trends. The book also provides a 100-plus-page Action Guide for Caregivers, with tips and strategies for caring for a loved one with dementia and caring for oneself.
Through a special offer online, the book includes a free copy of a 30-page booklet, Staying Mentally Sharp: Tips to Help Keep Your Memory in Shape. Illustrations, additional resources, and index.

Navigating the Alzheimer's Journey: A Compass for Caregiving.

Sifton, C.B. Baltimore, MD: Health Professions Press. 2004. 688 p.

Available from the Health Professions Press. P.O. Box 10624, Baltimore, MD 21285-0624. (888) 337-8808; FAX: (410) 337-8539. Website: www.healthpropress.com . PRICE: $26.95. ISBN: 9781932529043.

This book is a guide for caregivers of people with Alzheimer’s disease (AD). Drawing on the author’s professional and personal experience in dementia caregiving, it offers practical advice about managing the daily care of someone with dementia while caring for oneself to avoid burnout. Ten chapters address the following topics: (1) caring for the caregiver; (2) living in the moment; (3) basic information about AD and other dementias; (4) communicating with someone who has dementia; (5) creating a supportive environment; (6) maintaining a familiar lifestyle; (7) success with daily life activities; (8) using leisure activities for the person’s "re-creation"; (9) understanding, preventing, and responding to behavioral symptoms; and (10) care planning. The book includes a list of references and forms for recording the patient’s personal information, daily routines, life story, and preferences. References and resources for further information are given.

Rush Manual for Caregivers. (6th ed.)

Chicago, IL: Rush Alzheimer's Disease Center. 2004. 116 p.

Available from the Rush Alzheimer's Disease Center, Rush University Medical Center. 600 South Paulina Street, Suite 1038, Chicago, IL 60612. (312) 942-7153. E-mail: info@alz.org. Website: www.rush.edu/rumc. PRICE: $14.95 for printed version and free online access.

This manual provides an overview of the issues that family members with relatives with Alzheimer's disease (AD) may need to address to cope with dementia. Chapters describe dementia and give the stages of AD; communication difficulties experienced and suggests ways to bridge the communication gap that dementia creates; the needs of the family in coping, including children and legal matters that may need attention; guidelines for providing daily care (hygiene, home safety, mobility and exercise, and nutrition); and important considerations when handling health and behavior problems. The manual's final chapter addresses ways to obtain outside help, such as from community-based and government resources, and considerations to be addressed when selecting a nursing home or hospice care. The manual concludes with lists of selected readings for families with a member who has dementia, and for professionals, concerning such areas as activities, public policy, and nursing home care.

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. Fax: (410) 516-6998. Website: www.press.jhu.edu. PRICE: $20.95. ISBN 978080188510-5.

This book offers guidance and comfort for families caring for loved ones with Alzheimer’s disease, 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. It has 18 chapters: (1) overview of dementia, (2) getting medical help for the person with dementia, (3) characteristic behavioral symptoms of dementia, (4) problems in independent living, (5) problems arising in daily care, (6) medical problems, (7) behavioral symptoms of dementia, (8) symptoms that appear as changes in mood, (9) special arrangements if you become ill, (10) getting outside help, (11) you and the person with dementia as parts of a family, (12) how caring for a person with dementia affects you, (13) caring for yourself, (14) for children and teenagers, (15) financial and legal issues, (16) nursing homes and other living arrangements, (17) brain disorders and the causes of dementia, (18) research in dementia. The fourth edition is also available in a large print version. Index.

What If It's Not Alzheimer's? A Caregiver's Guide to Dementia. 2nd ed.

Radin, L., Radin, G., eds. Amherst, NY: Prometheus Books. 2008. 346 p.

Available from Prometheus Books. 59 John Glenn Drive, Amherst, NY 14228-2197. (800) 421-0351; (716) 691-0133; FAX: (716) 691-0137. Website: www.prometheusbooks.com. PRICE: $22.98. ISBN: 1591020875.

This second edition is a revised and updated caregiver's guide to frontotemporal dementia (FTD), the second most common dementia after Alzheimer's disease in people under 65 years of age. Designed to be both a resource and reference guide, it contains 23 chapters with practical information for health care professionals and families. Part 1 focuses on the medical aspects of FTD. It includes basic information about different types of neurodegenerative dementia as well as specific information about FTD including its clinical presentation and management, genetics, working with the health care team, drug treatments and other therapies, rehabilitation interventions, disease progression, the importance of autopsy, and future directions in FTD research. Part 2 discusses the management of daily care, including communicating, swallowing and eating, exercise and mobility, activities and socialization, hygiene and dressing, creating a safe environment, adapting to social and emotional changes, general medical care issues, and end-of-life care. Part 3, on caregiver resources, discusses home health care and adult daycare services, nursing home and assisted living options, support networks, and financial and legal issues in FTD care. Part 4 discusses caring for the caregiver, including getting respite and coping with loss and grief. The book includes a list of resources, suggested readings, and an index.

Where Did I Put My Map? A Little Manual for Caregivers of Alzheimer's Patients.

Gann, J. Bloomington, IN: AuthorHouse. 2004. 47 p.

Available from AuthorHouse, 1663 Liberty Drive, Suite 200, Bloomington, IN 47403. (888) 519-5121. Website: www.authorhouse.com. PRICE: $13.00. ISBN: 9781418418496.

This manual is a guide for family caregivers of people with Alzheimer’s disease (AD). It offers step-by-step instructions for dealing with daily problems and preparing for the inevitable progression of the disease. The first 11 chapters address various caregiving topics: (1) overview of AD, (2) safety evaluation inside and outside the home, (3) vehicle safety, (4) nutrition, (5) documenting health information and medication use, (6) personal care (bathing, clothing, exercise, incontinence), (7) basic nursing skills, (8) the cognitively impaired person in an acute-care setting, (9) self-care for caregivers, (10) responding to disasters (security matters, power failure, water problems, fire, medical problems, storms and other natural disasters, household equipment, important telephone numbers), and (11) record keeping. In chapter 12, the author describes one day in the life of her husband, who had AD. Chapter 13 contains a list of resources for additional information and various forms for record keeping.

Booklets and Fact Sheets

Alzheimer's Disease: Caregiving Challenges.

Westport, CT: MetLife Mature Market. 2005. 24 p.

Available from the MetLife Mature Market Institute, 57 Greens Farms Road, Westport, CT 06880. (203) 221-6580; FAX: (203) 454-5339. E-mail: MatureMarketInstitute@metlife.com. Website: www.maturemarketinstitute.com; and from the National Alliance for Caregiving. 4720 Montgomery Lane, 5th floor, Bethesda, MD 20814. E-mail: info@caregiving.org. Website: www.caregiving.org. PRICE: free print copies.

This guide offers practical suggestions for families caring for a loved one with Alzheimer’s disease (AD). First, it provides basic information about AD and other causes of causes of dementia, emotional responses to caregiving, the importance of seeking a diagnosis, and the changes that occur in AD. Then, it offers tips for dealing with specific aspects of caregiving, including: communicating effectively, promoting safety and independence, adapting the physical environment, making decisions about driving, dealing with challenging behaviors (agitation, repetitive actions or speech, wandering, sundowning, paranoia, and hallucinations), handling problems with activities of daily living (bathing, dressing, eating, mobility, and incontinence), getting help from others, and taking care of yourself. It also provides ‘helpful hints’ for caregivers and a list of books, Web sites, and other resources related to AD.

Caregiver Guide: Tips for Caregivers of People With Alzheimer's Disease.

Bethesda, MD: National Institute on Aging. December 2008. 23 p.

Available from 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: adear@nia.nih.gov. Website: www.nia.nih.gov/Alzheimers/Publications/caregiverguide.htm. PRICE: Free print and free online access. NIH Publication number: 01- 4013.

This booklet offers tips for caregivers of people with Alzheimer's disease (AD). It includes suggestions about dealing with the diagnosis, communicating, bathing, dressing, eating, activities of daily living, exercise, incontinence, sleep problems, hallucinations and delusions, wandering, home safety, driving, visiting the doctor, coping with holidays, visiting a person with AD, and choosing a nursing home. The booklet also provides an annotated list of organizations that offer information about AD and caregiving.

Caregiver's Handbook: A Guide to Caring for the Ill, Elderly, Disabled...and Yourself.

Boston, MA: Harvard Medical School. 2007. 48 p.

Available from Harvard Health Publications, P.O. Box 421073, Palm Coast, FL 32142-1073. (888) 386-7220. Website: www.health.harvard.edu . PRICE: $16.00 for print or electronic versions.

This report is a guide to caring for elderly, ill, or disabled loved ones while attending to one’s own needs. Although not specific to people with dementia, much of the information is applicable to caring for the confused elderly. First, it outlines the important elements of good caregiving and offers advice about developing a caregiving plan. It explains how to talk with the loved one to determine what care is needed, and provides a questionnaire that can be used to assess and document those needs. Then, it discusses the resources and documents that are useful for legal planning, financial planning, and medical planning. It also discusses the community services and professionals who can provide assistance, ways to involve family members, and tips for long-distance caregiving. Next, it offers suggestions for managing daily tasks and common problems such as mobility, meals, personal hygiene, confusion, urinary incontinence, and bowel incontinence. It also suggests strategies the caregiver can use to take care of his or her own needs. Finally, it describes options for care when the loved one can no longer stay at home. The report includes a glossary and list of resources.

Caring for Adults With Cognitive and Memory Impairments.

San Francisco, CA: Family Caregiver Alliance. 2004. 9 p.

Available from the Family Caregiver Alliance, National Center on Caregiving. 180 Montgomery Street, Suite 1100, San Francisco, CA 94104. (800) 445-8106; (415) 434-3388; FAX: (415) 434-3508. E-mail: info@caregiver.org. Website: www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=392. PRICE: free online access and $2.00 for print copy.

This fact sheet suggests strategies to help family members cope with the demands of caring for a loved one with cognitive and memory impairments. First, it reviews some of the challenges family members face when caring for a person with cognitive impairment. Then, it outlines 10 steps to prepare for caregiving: establish a baseline of information about the loved one, get a medical assessment and diagnosis, educate yourself about the disease, determine the loved one’s needs, outline a care plan, examine the loved one’s finances, review legal documents, safety proof the home, connect with other caregivers, and take care of yourself. The fact sheet also suggests ways to prevent caregiver burnout, locate community resources, and obtain information from online resources. It concludes with a list of organizations, websites, and publications for additional information and support.

Caring for Someone With Alzheimer's Disease.

South Deerfield, MA: Channing Bete Co., Inc. 2007. 16 p.

Available from Channing Bete Co., Inc. One Community Place, South Deerfield, MA 01373-0200. (800) 477-4776; FAX: (800)   499-6464. E-mail: custserv@channing-bete.com. Website: www.channing-bete.com . PRICE: $1.19 each for 1 to 99 copies; $.94 each for 100 to 499 copies. Item number: PS39271.

This illustrated easy-to-read booklet reviews issues, concerns, and challenges involved in caring for someone with AD. It considers the physical and emotional consequences of AD for both the caregiver and patient. The booklet advises the caregiver to: talk to the family healthcare provider, discuss with other family members to find ways to share the caregiving duties, consider financial resources and make arrangements for legal matters, such as a will, durable power of attorney, guardianship and advance directives. Keep the home surroundings familiar, reduce noises and distractions, and keep daily schedules simple. It is also important to make the home a safe environment, such as clear walking areas to prevent falls, safety devices, locks on doors and windows, lower the temperature on the hot water heater, and discourage alcohol and smoking. Since everyday tasks can become difficult for the person with AD, the booklet provides ideas for helping with activities of daily living, such as bathing, eating, dressing, exercising, and sleeping. Basic guidelines are given for handling problem behavior, such as communicating in a simple and calm way, finding distractions and activities when the person becomes upset, and ways to handle incontinence, wandering, depression. The book also has tips on how the caregiver can take care of his or her emotional and physical health in order not to become overcome by stressful caregiving duties, and where to turn for help, such as local support groups, respite care, local chapters of the Alzheimer's Association, state agencies on aging, and the Alzheimer's Disease Education and Referral (ADEAR) Center sponsored by the National Institute on Aging.

Home Safety for People With Alzheimer's Disease.

Silver Spring, MD: Alzheimer's Disease Education and Referral Center. December 2008. 40 p.

Available from the Alzheimer's Disease Education and Referral (ADEAR) Center. P.O. Box 8250, Silver Spring, MD 20907-8250. (800) 438-4380 or (301) 495-1080. FAX: (301) 495-3334. E-mail: adear@nia.nih.gov. Website: www.nia.nih.gov/Alzheimers/Publications/homesafety.htm. PRICE: free print copy and free online access.

This booklet is designed to help caregivers improve home safety for individuals with Alzheimer's disease (AD) or related disorders. It helps caregivers identify potential problems inside and outside of the home and offers possible solutions to prevent accidents. First, it discusses general safety concerns and offers guidelines to help determine whether it is safe to leave the person with AD alone. Next, it provides a checklist to help make each room in the home a safer environment for the person with AD. Then, it describes various behavioral and sensory changes that can create safety problems and suggests ways to help reduce risks. It also provides tips for managing driving, warning signs for unsafe driving, making special occasions and large gatherings easier for the person with AD, and planning for natural disaster safety. Suggestions are given for how to plan for ongoing care of the person with AD in case something happens to the caregiver. The booklet ends with a list of resources for family caregivers.

Late-Stage Care: Providing Care and Comfort During the Late Stage of Alzheimer's Disease.

Chicago, IL: Alzheimer's Association. 2005. 11 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: info@alz.org. Website: www.alz.org. PRICE: free single print copy and free online access. Order number: ED486Z.

This booklet offers suggestions for providing care and comfort during the late stages of Alzheimer’s disease (AD). People with late-stage AD usually have difficulty eating and swallowing, need assistance walking, need full-time help with personal care, are vulnerable to infections and pneumonia, and lose the ability to communicate with words. For the person with late-stage AD, it is important to focus on preserving quality of life and dignity. This booklet offers suggestions for keeping the body and skin healthy, maintaining bowel and bladder function, helping the person eat and drink safely, preventing infections and pneumonia, recognizing pain and illness, keeping a personal connection, and moving the loved one to a long-term care setting. It also has a list of 10 quick tips for caring for a person with late-stage AD.

So Far Away: Twenty Questions for Long-Distance Caregivers.

Bethesda, MD: National Institute on Aging. January 2006 (reprinted June 2007). 44 p.

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; FAX: (301) 589-3014. E-mail: niaic@nia.nih.gov. Website: www.nia.nih.gov/HealthInformation/Publications/LongDistanceCaregiving. PRICE: free print copy and free online access. NIH publication number: 06-5496.

This booklet addresses some of the issues unique to long-distance caregiving. It is organized in a question-and-answer format. Each of the 20 commonly asked questions has a brief, stand-alone answer. Sample questions include: What can I really do from far away? What is a geriatric care manager and where can I find one? How can my parents afford everything they need? What kinds of documents do we need? How can we make the house safer for my mother who has Alzheimer’s disease? Why does long-distance caregiving make me feel so guilty? How can I be sure my father’s caregiver isn’t mistreating him? A list of resources is included at the end.

Surviving Today and Revising Tomorrow: Caregiving Strategies for the Alzheimer's Spouse.

Blotzer, M.A.; Tully, M.W. Bethesda, MD: Friends Club. 2004. 30 p.

Available from the Friends Club, 6601 Bradley Boulevard, Bethesda, MD 20817. (301) 469-0070. E-mail: Friendsclub@verizon.net. Website: www.friendsclubbethesda.org. PRICE: $6.95 a copy; $5.00 a copy for 10 or more copies.

This booklet suggests strategies for coping with the demands of caring for a spouse with Alzheimer’s disease (AD). The first part focuses on short-range strategies for managing the routines of daily life. It includes tips for reducing caregiver stress, finding a ‘good enough’ solution, dealing with feelings, and improving the patient’s quality of life. The second part explores how caring for someone with AD fundamentally alters one’s dreams for the future and suggests methods for salvaging some elements of those dreams. These methods include envisioning a new future, planning ahead, adjusting to new roles in the relationship, maintaining one’s own interests, and making time for joy. The final chapter discusses the new set of challenges and adjustments that occur when an AD patient must be placed in a nursing home and offers suggestions for dealing with these changes.

When a Loved One Has Alzheimer's Disease: A Caregiver's Handbook.

Deerfield, MA: Channing Bete Company, Inc. 2007. 31 p.

Available from Channing Bete Company, Inc. One Community Place, South Deerfield, MA 01373-0200. (800) 477-4776; FAX: (800) 499-6464. Website: www.channing-bete.com. PRICE: Free preview copy; $3.35 each for 1 to 99 copies; $2.99 for 100 to 499 copies. Item number: 96884.

This easy-to-read handbook provides practical information and tips for caring for a person with Alzheimer's disease (AD). It defines AD and describes its diagnosis and stages. It covers the issues of reaching out for support, creating a care plan, legal and financial concerns, medications, communication methods, maintaining independence as much as possible, safety and comfort, promoting appropriate behavior, planning ahead, and caring for the caregiver. The handbook provides resources to help the caregiver learn more about AD and support services, and assess his or her readiness for caregiving. It includes worksheets, calendars, assessment forms, and spaces for monitoring changes and keeping records.

When Your Loved One Resists Care: Tips to Make Your Job Easier. (Caring for an Older, Ill or Disabled Adult).

Richmond, M. Santa Cruz, CA: Journeyworks Publishing. 2003 (revised 2005). 1 p. (6 panels).

Available from Journeyworks Publishing. P.O. Box 8466, Santa Cruz, CA 95061. (800) 775-1998. E-mail: jworks@journeyworks.com. Website: www.journeyworks.com . PRICE: $18.00 for 50, $35.00 for 100, $60.00 for 200, one free sample copy. Order number: 5339.

This easy-to-read illustrated pamphlet gives family caregivers ways to encourage older and disabled adults to accept help with activities they can no longer do by themselves. Caregivers should approach the older person with respect and ask the older person what kind of help they need or want and suggest ways someone can help them. When the older person resists any help, acknowledge their concerns, such as giving up their independence, being afraid of strangers in their home, fear that help will be too expensive, or just not wanting to bother others. Give the older person choices so he or she can help in the decision making. When the person can no longer make decision about such things as eating, bathing, paying bills, does dangerous things like leaving the stove burner on, or shows signs of memory loss or confusion, then ask the person's doctor to help evaluate the patient's needs. Other people who can help when the person refuses care are social workers, nurses, or clergy. Caregivers need to be patient and ready for the person's change in attitude or needs and can also find support by talking with friends, family members or a counselor or geriatric care manager.

 

Magazines and Newsletters

Care ADvantage. For Caregivers of People With Alzheimer's Disease and Related Illnesses.

Available from the Alzheimer's Foundation of America. 322 Eighth Avenue, 7th floor, New York, NY 10001. (866) 232-8484; FAX: (646) 638-1546. E-mail: careadvantage@alzfdn.org. Website: www.afacareadvantage.org. PRICE: free print subscription and free online access.

This quarterly magazine offers information and advice to caregivers of people with Alzheimer’s disease (AD) and related dementias.

Connections. Newsletter from the Alzheimer’s Disease Education and Referral Center.

Bethesda, MD: National Institute on Aging. 2008.

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: adear@nia.nih.gov. Website: www.nia.nih.gov/Alzheimers/ResearchInformation/Newsletter. PRICE: free online access.

This online newsletter is intended as a resource for health professionals who provide services to people with AD and their families. A typical issue includes articles about National Institute on Aging-sponsored research; clinical trials; discussion of practices and standards; brief reviews of new publications, programs, audiovisuals, and other materials; and a calendar of events.

FCA e-Update.

Available from Family Caregiver Alliance. 180 Montgomery Street, Suite 1100, San Francisco, CA 94104. (800) 445-8106; FAX: (415) 434-3508. E-mail: info@caregiver.org . Website: www.caregiver.org. PRICE: free online subscription.

This semiannual electronic newsletter features national, state, and local news and caregiving advice for families, policymakers, providers, and program developers. Includes some articles and other information about Alzheimer’s disease caregiving.

Preparation Matters. 2008 hurricane issue.

Available from Alzheimer's Community Care, Inc. 800 Northpoint Parkway, Suite 101-B, West Palm Beach, FL 33407. (561) 683-2700; FAX: (561) 683-7600. E-mail: info@alzcare.org. Website: www.alzcare.org . PRICE: free online access and free print copy.

This annual magazine is devoted to the topic of hurricane preparedness for families and facilities caring for patients with Alzheimer’s disease (AD). Although some of the information and emergency numbers are specific to Alzheimer’s community care centers in south Florida, much of it is generally applicable to individuals and service providers in areas at risk for hurricanes and other natural disasters. Brief articles emphasize the importance of preparation and address various topics, including developing an emergency plan, creating an emergency kit, and keeping an adequate supply of food, water, and medicine. Also discussed are actions to take when staying at home during a hurricane, a neighbor alert system, and daily schedules and activities for patients with AD during and after the storm.

Take Care! Newsletter.

Available from National Family Caregivers Association, 10400 Connecticut Avenue, Suite 500, Kensington, MD 20895-3944. (800) 896-3650; (301) 942-6430; FAX: (301) 942-2302. E-mail: info@thefamilycaregiver.org. Website: www.thefamilycaregiver.org. PRICE: Free online access and free print subscription to NCFA members and individual caregivers; $40.00 for professionals; $60.00 for nonprofit organizations, and $100.00 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.

 

Online Information

Alzheimer's Association CareFinder.

Website: www.alz.org/carefinder/index.asp

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: info@alz.org. PRICE: free online access.

This online guide was developed by the Alzheimer’s Association to help people with Alzheimer’s disease (AD) and their family members find good care in their communities. For users with vision problems, the website offers a choice of three text sizes for viewing the information. There are 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 what types of care are available, how to recognize good care, what the Alzheimer’s Association recommends, how to decide when to get help, and how to evaluate different care settings. It includes a form for assessing a person’s abilities and needs for personal care and daily tasks, and one for judging the person’s level of memory or cognitive impairment. Coordinating Care describes different kinds of care providers and their training and offers advice about communicating with other family members, paid help, the doctor, and residential care staff; getting involved in care and solving problems; and making changes. Support and Resources includes sections on getting support, organizations that can help, fact sheets and forms, and a glossary.

Alzheimer's Caregivers.

Website: www.nlm.nih.gov/medlineplus/alzheimerscaregivers.html

Available from the National Library of Medicine. 8600 Rockville Pike, Bethesda, MD. E-mail: custserv@nlm.nih.gov. PRICE: free online access.

This MedlinePlus Health Topic web page provides links to online resources for caregivers of people with Alzheimer’s disease and related dementias. Some of these resources are available in Spanish, and a separate link is provided for the Spanish and Chinese websites. The sites are organized into the following topic areas: overviews, nutrition, coping, miscellaneous dementia-related issues, financial issues, newsletters and other print publications, genetics, research, dictionaries and glossaries, directories, organizations, newsletters and other print publications, and law and policy. This web page is updated frequently with new resources. MedlinePlus is an online service provided by the National Library of Medicine for health professionals and the general public. The National Institute on Aging is the primary NIH organization for research on Alzheimer's caregivers.

Caregivers.

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. “The Memory Loss Tapes” provides personal views of seven individuals living with AD. Other segments in the series include “Grandpa, Do You Know Who I Am?,” narrated by Maria Shriver, which shows how dementia can affect children and ways in which younger people can relate to older family members with memory problems, 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.

Family Care Navigator: State-by-State Help for Family Caregivers.

Website: www.caregiver.org/caregiver/jsp/fcn_content_node.jsp?nodeid=2083.

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; FAX: (415) 434-3508. E-mail: info@caregiver.org. PRICE: Free online access.

The Family Caregiver Alliance has launched the Family Care Navigator, a comprehensive online guide to help families in all 50 states 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.

Strength for Caring.

Website: www.strengthforcaring.com

Available from Johnson and Johnson Consumer Products Company, 199 Grandview Road, Skillan, NJ 08558-9418. (866) 466-3458; (732) 524-0400. PRICE: free online access.

This website has four channels that feature articles, tips, stories, and other information for caregivers: Just for Caregivers, Caring for Others, Connecting Caregivers, and Resource Center. Just for Caregivers addresses work and family, stress relief, support and resources, diet and wellness, grief and bereavement, comfort and relaxation, and holidays and events. Caring for Others has information about bathing, toileting, wound care, home safety, health providers, and caring for people with specific health conditions, including Alzheimer’s disease. Connecting Caregivers offers message boards, caregiver stories, video stories, and polls. The Resource Center has articles and information about housing and money and insurance as well as a glossary and a list of related books, brochures, and websites. Users can also subscribe to an electronic newsletter.

What Is Happening to Grandpa? A Family Takes Care of a Loved One With Alzheimer's. (Que le pasa al abuelito? La Familia cuida al enfermo de Alzheimer).

Website: www.alz.org/espanol_latino_resources.asp

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: info@alz.org . PRICE: free print and free online access. Spanish publication number: CM976LRS; English publication number: CM968CS.

This online slide show, or “fotonovela,” tells the story of a Latino family who learns that a beloved grandfather has Alzheimer’s disease (AD). It traces their experiences from suspecting that something is wrong with Grandpa to taking him to the doctor to get an evaluation, learning that he has AD, and developing a plan for his care. It addresses such topics as the warning signs of AD, the importance of getting medical and emotional help, ways to reduce stress in the family, and how the Alzheimer’s Association Safe Return program can help when a person with AD is lost or found away from home. The slideshow is available in both English and Spanish, and both versions can be accessed online or printed at no cost.

 

DVDs and CD-ROMs

A Time to Care: Activities of Daily Living. (DVD)

Woodbury, CT: Macdaniel Ronalter Video Productions. 2004. DVD.

Available from Macdaniel Ronalter Productions. P.O. Box 242, Woodbury, CT 06798. (203) 206-8345. E-mail: macdanielronalter@prodigy.net Website: www.macdanielronalter.com. PRICE: $29.95 for DVD or VHS videocassette, plus $5.95 shipping and handling.

This video, available in DVD or VHS format, shows home caregivers how to deal with some of the challenges of caring for a loved one with Alzheimer’s disease. Narrated by a professional geriatric care manager, it includes a combination of caregiver interviews, expert advice, and visual demonstrations of practical approaches to routine daily activities. The topics addressed include eating, bathing, dressing, grooming, incontinence, and dental care.

Alzheimer's Early Stages: First Steps for Family, Friends and Caregivers.

Kuhn, D. Mendocino, CA: Hunter House, Inc. 2005 (based on 2003 edition of book). (3-CD set with audio, 3 hrs.)

Available from online booksellers and lending libraries. ISBN: 1933310022.

This audiobook, on three CDs, offers information and support to the relatives and friends of people in the early stages of Alzheimer’s disease (AD). Part 1 focuses on the medical aspects of the disease. It includes chapters on the need for an accurate diagnosis, how AD changes the brain, symptoms of early AD, behavioral changes, risk factors, and progress in treatment and prevention. Part 2 address the impact of AD on the patient and loved ones. It explores what it is like to have AD, the importance of the social environment, and the changes that occur in relationships and roles. It includes advice about coping when a parent has AD, making practical decisions, improving communication, planning for the future, rethinking the living situation, and keeping the person with AD active and healthy. Part 3 offers suggestions to keep the caregiver healthy and positive. It suggests specific supports such as individual and family counseling and spiritual resources as well as community services such as support groups, respite care, and adult day care.

Family Caregiving. Reference Guide and DVD set.

Yardley, PA: The StayWell Company. 2007. 126 p. (DVD, 1 hour, 49 min., and book.)

Available from The StayWell Company, Attention: Customer Service. 780 Township Line Road, Yardley, PA 19067. (800) 667-2968. E-mail: arc@staywell.com. Website: www.ShopStayWell.com . PRICE: $24.95 for book with DVD. Stock number: 653975. Or order through local American Red Cross Chapter.

About 50 million Americans care for a disabled, chronically ill, or frail family member, and that number continues to grow as the U.S. population ages. This spiral-bound book and companion DVD by the American National Red Cross are designed to provide information and support to these family caregivers. The book has nine tabbed sections on the following topics: (1) home safety, (2) caregiving skills, (3) body mechanics and transfers, (4) personal care, (5) healthy eating, (6) caring for the caregiver, (7) legal and financial matters, (8) dementia, and (9) caregiving resources. The chapter on dementia focuses on dealing with difficult behaviors, communicating, and comforting a loved one with dementia. Throughout the book are DVD icons in the margins, indicating that the DVD has more detailed information on that subject or a demonstration of a specific skill. The DVD shows how to perform caregiving skills more easily and safely in a step-by-step approach. To review a specific topic or skill, you simply navigate the chapter menu screen and scroll through the sub-menu to the topic you want.

Straight Talk About Dementia: A Caregiver's Perspective

Sherborn, MA: Aquarius Health Care Media. 2006. (DVD).

Available from Aquarius Health Care Media, 18 North Main Street, Sherborn, MA 01770. (888) 440-2963; FAX: (508) 650-1665. E-mail: aquarius@aquariusproductions.com. Website: www.aquariusproductions.com. PRICE: $125.00. Order Number: A-HNCDEMENTIAD.

This 45-minute documentary explores issues in dementia care that are important to both family and professional caregivers. Presented as a series of interviews, viewers get the straight stories directly from those who care for people with dementia every day. The interviews are arranged into the following topic areas: professional caregivers, family caregivers, sundowning, practical tips, managing changes, using memories to stimulate conversation, and having fun. The caregivers address such issues as ethical caregiving, enhancing communication, encouraging compliance, activities of daily living, fundamentals like eating and bathing, and looking after the caregiver’s health.

Your Time to Care: Basic Skills for Caring for Individuals With Alzheimer's Disease and Related Dementias at Home.

New York, NY: Alzheimer's Foundation of America. 2006. (DVD 142 min, col.)

Available from the Alzheimer's Foundation of America, 322 Eighth Avenue, 7th floor, New York, NY 10001. (866) 232-8484. E-mail: info@alzfdn.org. Website: www.alzfdn.org. PRICE: $34.95 plus $5.95 shipping and handling in the U.S. and Canada. Check for sales tax if shipped to NY State, California, Texas, and Illinois.

This 142-minute DVD provides basic skills for caregivers of persons with Alzheimer's disease (AD) and related dementias at home. It gives information about AD and other forms of dementia and effective personalized caregiving techniques for family and professional caregivers, including management of behavior problems and keeping the home safe for a person with memory and cognitive disorders.

 

Activities for People with Alzheimer’s Disease and Related Dementias

Activities at Home: Planning the Day for the Person With Dementia.

Chicago, IL: Alzheimer's Association. 2005. 11 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: info@alz.org. Website: www.alz.org . PRICE: free online access and free print copy from local Association chapter. Document order number: ED308Z.

This booklet is designed to help family caregivers plan pleasant, meaningful, and engaging activities for a person with dementia. These activities can be daily routines such as household chores and personal care activities, or others such as activities that are creative, intellectual, physical, social, spiritual, or work related. This booklet gives examples of these types of activities and suggests strategies for planning activities, creating a daily plan, and measuring the plan’s success. The strategies for planning activities focus on the person (such as considering the person’s abilities and preferences), the activity (such as focusing on enjoyment and adjusting the activity as the disease progresses), the approach (such as offering support, breaking the activity into simple steps, and being flexible), and the place (such as making the activity safe and minimizing distractions). The booklet also provides an example of a daily plan and a sample form that can be used for writing down the daily plan.

Alzheimer's Activities: Hundreds of Activities for Men and Women With Alzheimer's Disease and Related Disorders. Volume 1.

FitzRay, B.J. Windsor, CA: Rayve Productions. 2001 (fourth printing 2007). 288 p.

Available from Rayve Productions, P.O. 726, Windsor, CA 95492. (800) 852-4890; FAX: (707) 838-2220. E-mail: rayvepro@aol.com. Website: www.rayvepro.com. PRICE: $29.95 plus shipping and handling. ISBN: 9781877810800.

This book presents hundreds of activities for caregivers to engage men and women with Alzheimer’s disease (AD) and related disorders living at home or in assisted living facilities. It includes creative ideas for everyday and special occasion activities, caregiver anecdotes, helpful tips, interesting facts, and words of encouragement. To accommodate people with different levels of cognitive and physical impairment, the book includes suggestions for simple, medium, and moderately complex activities. The activities are arranged alphabetically by topic. Sample topics include airplanes, aquariums, Arbor Day, automobiles, Chinese New Year, Christmas, the Civil War, Easter, farms, food and beverages, gardening, the Great Depression, Japanese New Year, Martin Luther King, Jr. Day, the Korean War, military service, movies, Pearl Harbor Day, pets, presidents, the Roaring Twenties, science, sports, Valentine’s Day, World Wars I and II, and Yom Kippur. Background information on historical events, religious holy days, and traditional American holidays is included in some sections. The book also provides a selected bibliography, list of resources for information on AD, a chart outlining the stages of AD, contact information for product resource suppliers, and an index.

Best Friends Book of Alzheimer's Activities. Vol. 1.

Bell, V., Troxel, D., Hamon, R., Cox T. Baltimore, MD: Health Professions Press. 2004. 224 p.

Available from the Health Professions Press. P.O. Box 10624, Baltimore, MD 21285-0624. (888) 337-8808; FAX: (410) 337-8539. E-mail: custserv@healthpropress.com. Website: www.healthpropress.com. PRICE: $34.95. ISBN: 9781878812889.

This book describes 147 easy, meaningful activities for people with Alzheimer’s disease and related dementias. It is aimed primarily at people in the middle stages of the disease but includes suggestions to adapt the activities for those in the early and late stages. The activities are organized into the following categories: activities between structured times, classroom activities, creative activities, doing for others, game playing, personal care activities, activities especially for men, activities in the home, and after-dinner activities. Each activity page includes the following sections: introduction, basics (supplies, techniques, variations, planning tips) and ideas for doing the activities the “Best Friends” way. These ideas include relating the activity to the person’s life story, connecting the activity with the arts, incorporating exercise into the activity, using music and humor, adapting the activity for people in different stages of dementia, recalling old sayings, practicing retained skills, stimulating the senses, embracing spirituality, and inspiring conversation. A list of resources for activities professionals is included.

Best Friends Book of Alzheimer's Activities. Vol. 2.

Bell, V., Troxel, D., Cox, T., Hamon, R. Baltimore, MD: Health Professions Press. 2008. 248 p.

Available from the Health Professions Press. P.O. Box 10624, Baltimore, MD 21285-0624. (888) 337-8808; FAX: (410) 337-8539. E-mail: custserv@healthpropress.com. Website: www.healthpropress.com. PRICE: $36.95. ISBN: 9781932529265.

This second volume of The Best Friends Book of Alzheimer’s Activities is meant to be a companion to Volume One but also can stand alone as a guide to activity programming for people with dementia. It contains 149 ideas for creative engagements based on the Best Friends approach to dementia care. The activities are organized into 10 themes: Celebrating the Moment, Honoring the Life Story, Religious and Spiritual Traditions, Wellness, Adult Education, Let’s Create, In the Kitchen, Games and Active Things to Do Together, In the Evening, and Community Spirit. Recognizing the growing diversity in the United States, Volume Two includes many multi-cultural activities, including several on various world religions and spiritual practices. These activities are geared not only toward persons who are in their 70s and older, but also for younger persons in their 50s and 60s who have dementia. They can be implemented by professional or family caregivers of people with dementia who are at home, in an adult day center, or living in residential care. Caregivers will find a helpful grid of activities at the beginning of the book that summarizes how different activities can be used and lists the page numbers where they can be found. Illustrations, resources.

A Different Visit: Activities for Caregivers and Their Loved Ones With Memory Impairments.

Joltin, A., Camp, C.J., Noble, B.H., Antenucci, V.M. Beachwood, OH: Myers Research Institute, Menorah Park Center for Senior Living. 2005. 118 p.

Available from Myers Research Institute, Menorah Park Center for Senior Living, 27100 Cedar Road, Beachwood, OH 44122. E-mail: info@myersri.com. Website: www.myersresearch.org. Also available from Ageless Design, Inc. 3197 Trout Place, Cumming, GA 30041. (888) 693-7774. E-mail: cs@alzstore.com. Website: http://alzstore.com. PRICE: $39.95. ISBN: 0967634334.

This manual was created to help caregivers use activities to have meaningful, engaging visits with loved ones who have memory impairment. Using Montessori-based principles, the activities are aimed at working with the abilities and interests that remain, reaching the person behind the memory impairment, engaging the individual, and allowing everyone involved to feel good about the experience. The manual provides general guidelines for enjoying the activities and detailed instructions for more than 40 activities in the following categories: sorting and matching activities, games and puzzles, rhythm and melody, hand exercises, stimulating the senses, sequencing exercises, artistic expressions, helping others, keeping in touch, and community involvement. Each activity includes a brief description, a “how-to” section, tips to help make the activity successful, and adaptations to make the activity more challenging or less challenging. A DVD that comes with the manual provides access to more information, including radio interviews, a resource guide, Web links to other manuals, videos, and more.

 

Resources for Professional Caregivers

Alzheimer's Care Guide.

Available from Freiberg Press, Inc. P.O. Box 612. Cedar Falls, IA 50613. (800) 354-3371; FAX: (319) 553-0644. E-mail: klynch@cfu.net. Website: www.care4elders.com. PRICE: $55.00 annual subscription.

This bimonthly educational/training publication keeps caregivers up to date on the latest evidence-based information about caring for people with Alzheimer’s disease. News includes the latest information in dealing with behavioral problems, therapeutic activities, research news, and other topics.

Art of Dementia Care.

Kuhn, D., Verity, J. Clifton Park, NY: Thomson Delmar Learning. 2008. 119 p.

Available from Delmar Cengage Learning. Attention Customer Service. P.O. Box 6904, Florence, KY 41022. (800) 648-7450 or (800) 354-9706; FAX: (800) 487-8488. E-mail: esales@cengage.com. Website: www.delmarlearning.com. PRICE: $12.95. ISBN: 9781401899516.

This book was written for those who provide support, encouragement, and care for people with dementia in formal care settings. The authors introduce the idea that caring for people with dementia is a work of art and demonstrate how a relationship model of care can make a positive difference in the lives of those with dementia. The six chapters are intended to help caregivers rethink their attitudes and behaviors toward people with dementia. They examine some outdated conceptions of people with dementia and reveal new insights into the need for individualized approaches. In Chapter 1, they tell the story of Dr. Alzheimer and explain the need to build a bridge to reach into the world of people with dementia. In Chapter 2, they explore what it means to be an artist of dementia care. Chapter 3 highlights the need to shift from a medical model of care to a relationship model of care. Chapter 4 explains challenging behaviors associated with dementia as expressions of unmet needs. Chapter 5 describes ways to support families as they cope with the losses associated with a loved one’s dementia. Finally, Chapter 6 encourages the reader to become a great artist by practicing ‘uplifts,’ which are daily occasions for connecting with residents in ways that bring them joy.

Knowledge and Skills Needed for Dementia Care: A Guide for Direct Care Workers in Everyday Language.

Okemos, MI: Michigan Dementia Coalition. 2008. 74 p.

Available from the Michigan Dementia Coalition, Michigan Public Health Institute, 2438 Woodlake Circle, Suite 240, Okemos, MI 48864. (517) 324-7318; FAX: (517) 324-7364. E-mail: mhorst@mphi.org. Website: www.dementiacoalition.org/professionals. PRICE: free online access and free print copy.

This guide was developed to explain in everyday language the knowledge and skills that direct care workers need to provide quality care for a person with dementia. It focuses on the special skills needed for working with people with dementia, such as the ability to communicate with someone who is confused by his or her surroundings. The information is organized around specific objectives in seven competency areas: (1) knowledge of dementia disorders, (2) person-centered care, (3) care interactions, (4) enriching the person’s life, (5) understanding behaviors, (6) interacting with families, and (7) direct care worker self-care. The guide also has a glossary; information about the primary causes of dementia, the warning signs of Alzheimer’s disease and other dementias, and structures of the brain; and lists of suggested resources by competency area and in alphabetical order.

Learning to Speak Alzheimer's: An Introduction to the Habilitation Approach to Care.

Chicago, IL: Terra Nova Films. 2008. (video based on the book of the same title by Joanne Koenig Coste). (VHS videorecording or DVD video, 32 min, col.)

Available from Terra Nova Films. 9848 South Winchester Avenue, Chicago, IL 60643. (800) 779-8491; FAX: (773) 881-3368. E-mail: tnf@terranova.org. Website: www.terranova.org. PRICE: $179.00 purchase; $59.00 rental fee.

Based on the popular book of the same title, this 32-minute videorecording introduces the habilitation approach to caring for a person with Alzheimer’s disease (AD). It demonstrates how caregivers can apply the basic concepts of habilitation, defined as caregiving that embraces the remaining abilities of the person with dementia, to create a suitable environment in which the person can lead a quality life through proactive adjustments. Caregivers will learn how to (1) communicate better with individuals with AD, (2) reduce emotional or aggressive-protective reactions by identifying and removing frustration triggers, and (3) engage the person in life-enriching activities that promote positive memories and boost emotional stability and self-esteem. The video offers practical information for caregivers in nursing home, assisted living, hospital, and home settings.

Training for Faith-based Leaders: Caring for Persons With Alzheimer's.

Website: www.byrdinstitute.org/resources/caregivers.aspx

Available from the Johnnie B. Byrd, Sr. Alzheimer's Center and Research Institute, 4001 East Fletcher Avenue, Tampa, FL 33613. (813) 866-1600; (866) 700-7773; FAX: (813) 866-1601. E-mail: info@byrdinstitute.org. PRICE: free online access.

This is an online PowerPoint presentation from a training workshop for faith-based leaders on caring for people with Alzheimer’s disease. It can be downloaded for use as a PowerPoint presentation or printed for use as overheads or handouts or training materials in other educational activities. The presentation is designed to provide basic information about dementia and its effects on the patient, the challenges and rewards of caregiving, and an information and support resource for family caregivers. It includes basic facts about dementia, common symptoms, diagnosis, treatment goals, drug therapies, the characteristics of caregivers, effects on the caregiver’s emotional and physical health, and the role of the Alzheimer’s Rural Care Healthline (ARCH) in linking rural caregivers to education and support. The slide presentation was given at a faith-based conference at St. Lawrence Catholic Church, Tampa, FL, on August 9, 2006.

 

Resources in Spanish

Actividades de la vida diaria (Activities of Daily Living). Website: www.alzfdn.org/EducationandCare/activities_sp.html.

Available from the Alzheimer's Foundation of America, 322 Eighth Avenue, 7th floor, New York, NY 10001. (866) 232-8484. E-mail: info@alzfdn.org. PRICE: free online access.

This website offers tips for helping a person with dementia perform activities of daily living. The suggestions focus on eating, bathing, dressing, and toileting. For example, to help the person eat, you should have the person eat with others to increase socialization, provide preferred foods and snacks, present one item at a time to avoid confusion, and serve pre-cut or finger food if using utensils becomes difficult. To make bathing easier, you should provide privacy and be reassuring, prepare needed items in advance, ensure proper room temperature for disrobing and appropriate water temperature, and install safety equipment such as a non-skid surface and grab bars. Strategies for dressing including offering one-step directions, limiting the choice of outfits, providing loose-fitting clothes with elastic waistbands, and laying out the articles of clothing in the order they are to be put on. Toileting tips include establishing a routine for taking the person to the bathroom, responding quickly to requests to use the bathroom, posting signs with illustrations on the bathroom door, and using easy-to-remove clothing.

Como cuidar a alguien con pérdida de memoria y confusión: una guia facil para los que cuidan a alguien (Caring for a Person with Memory Loss and Confusion: An Easy Guide for Caregivers).

Santa Cruz, CA: Journeyworks Publishing. 2002. 32 p.

Available from Journeyworks Publishing. P.O. Box 8466, Santa Cruz, CA 95061. (800) 775-1998. Website: www.journeyworks.com. PRICE: $4.95 each plus shipping.

This Spanish-language booklet is a resource for family members who are caring for a loved one with memory loss and confusion, and it is useful for caregivers taking care of persons with Alzheimer's disease and other dementias or Parkinson's disease. It offers practical, easy-to-read suggestions about everyday tasks and common challenges of caregiving. Topics include: planning for daily care, creating a safe home environment, improving communication, selecting and adapting daily activities, making bathing and personal care easier, getting a better night's sleep, making mealtime easier, managing bladder and bowel problems, dealing with wandering, coping with anxiety and restlessness, and dealing with angry outbursts. It also offers advice about self-care for the caregiver and getting help from others. A list of resources for additional information and support is included.

Cómo permanecer seguro: la deambulación y el paciente con la enfermedad de Alzheimer (Staying Safe: Wandering and the Alzheimer's Patient).

Clarksburg, MD: American Health Assistance Foundation. (no date). 7 p.

Available from the American Health Assistance Foundation, 22512 Gateway Center Drive, Clarksburg, MD 20871. (800) 437-2423. FAX: (301) 258-9454. E-mail: info@ahaf.org. Website: www.ahaf.org. PRICE: one free print copy and free online access.

This booklet, offered in English or in Spanish, gives practical advice on how to prevent wandering by a patient with Alzheimer’s disease (AD) and how to find a missing patient safely and as quickly as possible. Wandering can be one of the most dangerous behaviors associated with AD. An AD patient who wanders outside alone can easily become lost, confused, injured, and, in the winter, even die from exposure. It is critical, especially in the middle stage of the disease, that caregivers take steps to prevent wandering and know what to do if the loved one is missing. To help prevent wandering, you should give the person a safe place for pacing, give the person some repetitive or easy activity to do such as sitting in a rocking chair or sweeping, install deadbolts on all doors leading to the outdoors, install safety devices on windows, install alarms or bells on outside doors, “camouflage” doors, get a medical identification bracelet for the patient, and notify neighbors that your loved one tends to wander. If the loved one is missing, you should notify the police, provide copies of a recent photograph, give pertinent information about the loved one to authorized search personnel, provide an unwashed article of clothing to assist police dogs in the search, keep a list of dangerous places that should be searched first, and keep a list of places the person likes to go. The booklet includes a list of resources for more information and assistance.

El cuidado de los adultos con trastornos cognitivos y de la memoria (Caring for Adults with Cognitive and Memory Impairments).

San Francisco, CA: Family Caregiver Alliance. 2005.

Available from the Family Caregiver Alliance, National Center on Caregiving. 180 Montgomery Street, Suite 1100, San Francisco, CA 94104. (800) 445-8106; (415) 434-3388; FAX: (415) 434-3508. E-mail: info@caregiver.org. Website: www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1408. PRICE: free online access.

This fact sheet suggests strategies to help family members cope with the demands of caring for a loved one with cognitive and memory impairments. First, it reviews some of the challenges family members face when caring for a person with cognitive impairment. Then, it outlines 10 steps to prepare for caregiving: establish a baseline of information about the loved one, get a medical assessment and diagnosis, educate yourself about the disease, determine the loved one’s needs, outline a care plan, examine the loved one’s finances, review legal documents, safety proof the home, connect with other caregivers, and take care of yourself. The fact sheet also suggests ways to prevent caregiver burnout, locate community resources, and obtain information from online resources. It concludes with a list of organizations, websites, and publications for additional information and support.

Guia del cuidador para entender la conductade los pacientes con demencia (Caregiver's Guide to Understanding Dementia Behavior).

San Francisco, CA: Family Caregiver Alliance. 2005.

Available from the Family Caregiver Alliance, National Center on Caregiving. 180 Montgomery Street, Suite 1100, San Francisco, CA 94104. (800) 445-8106; (415) 434-3388; FAX: (415) 434-3508. E-mail: info@caregiver.org. Website: www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1407 PRICE: free online access.

This Spanish-language fact sheet offers practical advice for dealing with the communication and behavioral problems commonly encountered when caring for a person with dementia. First, it provides 10 tips for communicating with a person with dementia. For example, it suggests that you set a positive mood for interaction, get the person’s attention, ask simple questions, wait patiently for a reply, and break activities into a series of steps. Then, it presents general guidelines for understanding and coping with difficult behaviors, followed by suggestions for specific problems such as wandering, incontinence, agitation, repetitive speech or actions, paranoia, sleeplessness and sundowning, eating, bathing, dressing, hallucinations, and sexually inappropriate behavior. Finally, it lists publications, organizations, and programs for additional information and assistance.

Guia para quienes cuidan personas con la enfermedad de Alzheimer (Caregiver Guide: Tips for Caregivers of People With Alzheimer's Disease).

Bethesda, MD: National Institute on Aging. January 2006. 24 p.

Available from the Alzheimer's Disease Education and Referral (ADEAR) Center. P.O. Box 8250, Silver Spring, MD 20907-8250. (800) 438-4380; (301)495-3334; FAX: (301) 495-3334. E-mail: adear@nia.nih.gov. Website: www.nia.nih.gov/Alzheimers/Publications/guia.htm PRICE: free print and free online access.

This Spanish-language booklet offers tips for caregivers of people with Alzheimer's disease (AD). It includes suggestions about dealing with the diagnosis, communicating, bathing, dressing, eating, activities of daily living, exercise, incontinence, sleep problems, hallucinations and delusions, wandering, home safety, driving, visiting the doctor, coping with holidays, visiting a person with AD, and choosing a nursing home. The booklet also provides an annotated list of organizations that offer information about AD and caregiving.

Plan de juego de el entrenador Broyles para cuidadores de personas con la enfermedad de Alzheimer: guida de consejos practices.

Broyle, F. Fayetteville, AR: University of Arkansas. 2008. 110 p.

Available from the Alzheimer's Association. 225 North Michigan Avenue, Floor 17. Chicago, IL 60601-7633. (800) 272-3900. FAX: (312) 335-1110. E-mail: info@alz.org. Website: www.alzheimersplaybook.com. PRICE: free print copy and free online access. Arkansas residents can request book from: Barbara Broyles Legacy, 1826 North Crossover Road, Suite 1, PMB 104, Fayetteville, AR 72701. (479) 466-3739.

Frank Broyles, the author of this book, is the retired Athletic Director for the University of Arkansas Razorbacks. When his wife, Barbara, was diagnosed with Alzheimer’s disease (AD), he didn’t know much about the disease or how it would affect their lives. But he approached AD much like he would a sports opponent, with a solid game plan and dedicated team. He spent a lot of time seeking answers to questions before putting together a game plan. The information he acquired is contained in this book, which is organized like a coach’s playbook. It offers practical tips to guide others in taking care of their loved ones with AD. The book covers caregiving in the early, middle, and late stages of AD. It addresses such issues as getting a diagnosis, becoming a caregiver, taking care of legal matters, communicating with the person with AD, getting help from the family, home safety, daily routines, dealing with behavior problems, nursing home and hospice care, and letting go. Sections for each stage are color coded at the top or bottom of the page, and have a divider page to make the information easier to find.

Proteccion en el hogar para las personas con la enfermedad de Alzheimer (Home Safety for People With Alzheimer's Disease).

Bethesda, MD: National Institute on Aging. May 2006. 44 p.

Available from the Alzheimer's Disease Education and Referral (ADEAR) Center. P.O. Box 8250, Silver Spring, MD 20907-8250. (800) 438-4380 or (301) 495-1080. FAX: (301) 495-3334. E-mail: adear@nia.nih.gov. Website: www.nia.nih.gov/Alzheimers/Publications/proteccion.htm PRICE: free print copy and free online access.

This Spanish-language booklet is designed to help caregivers improve home safety for people with Alzheimer’s disease (AD) or related disorders. It helps caregivers identify potential problems in the home and offers possible solutions to prevent accidents. The booklet starts with general information about the symptoms of AD, safety concerns, and how to tell if it is safe to leave the person with AD alone. Then, it provides a checklist to help make each room in the home a safer environment for a person with AD. Next, it describes the behavioral and sensory changes that can create safety hazards and offers specific safety recommendations that may help reduce risks. Some of the problems addressed include wandering, rummaging or hiding things, and hallucinating or having delusions. It also provides tips for evaluating driving ability, planning for natural disaster safety, and planning for the patient’s care in case the primary caregiver dies or becomes incapacitated. The booklet ends with a list of resources for family caregivers.

Proveedores de atención al paciente con Alzheimer (Alzheimer's Caregivers).

Website: www.nlm.nih.gov/medlineplus/spanish/alzheimerscaregivers.html.

Bethesda, MD: National Library of Medicine.

Available from the National Library of Medicine. 8600 Rockville Pike, Bethesda, MD. E-mail: custserv@nlm.nih.gov. PRICE: free online access.

This MedlinePlus Health Topic web page provides links to online resources for caregivers of people with Alzheimer’s disease and related dementias. The sites are organized into the following topic areas: resources from the National Institutes of Health, overviews, nutrition, coping, miscellaneous dementia-related issues, financial issues, newsletters and other print publications, genetics, research, dictionaries and glossaries, directories, law and policy, and related web pages. This web page is updated frequently with new resources. MedlinePlus is an online service provided by the National Library of Medicine for health professionals and the general public. The National Institute on Aging is the primary NIH organization for research on Alzheimer's caregivers.

La tension en las personas encargadas del cuidado de los enfermos de Alzheimer: como reconcerla que hacer (Taking Care of Yourself: Managing Stress as a Caregiver).

Chicago, IL: Alzheimer's Association. 2007. (print format 1 page with 6 panels; 6 pages online format)

Available from the Alzheimer's Association. 225 North Michigan Avenue, Floor 17, Chicago, IL 60601-3900. (800) 272-3900; TTY: (866) 403-3073. E-mail: info@alz.org. Website: www.alz.org. PRICE: free print and free online access.

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.

Que le pasa al abuelito? La familia cuida al enfermo de Alzheimer (What Is Happening to Grandpa? A Family Takes Care of a Loved One With Alzheimer's).

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: info@alz.org. Website: www.alz.org/national/documents/sp_latino_brochure_grandpa.pdf. PRICE: free online access.

This online slide show, or “fotonovela,” tells the story of a Latino family who learns that a beloved grandfather has Alzheimer’s disease (AD). It traces their experiences from suspecting that something is wrong with Grandpa to taking him to the doctor to get an evaluation, learning that he has AD, and developing a plan for his care. It addresses such topics as the warning signs of AD, the importance of getting medical and emotional help, ways to reduce stress in the family, and how the Alzheimer’s Association Safe Return program can help when a person with AD is lost or found away from home. The slideshow is available in both English and Spanish, and both versions can be accessed online or printed at no cost.



Page last updated Nov 12, 2010

The content of this page may be copyrighted by NIA or other organizations. The information provided by the web sites listed above is the solely responsibility of these web sites. Some resources listed in this page may have been disabled by providing organizations.

Source: NIA Alzheimer's Disease Education and Referral (ADEAR)
Original page: http://www.nia.nih.gov/Alzheimers/Resources/Lists/resourcelist.htm