Taking care – or caregiving – of someone with Alzheimer’s disease is a different kind of love

Unconditional Love

“Unconditional Love” is the selfless dedication and responsibility of taking care of a loved one. We believe that caregivers are the unsung heroes to loved ones as they take on many different roles, including:

  • making sure a loved one has proper care
  • talking with a loved one's doctor about treatment options
  • educating themselves about the disease

Let’s celebrate the more than 15 million people in the United States who selflessly dedicate time, patience and “unconditional love” to provide care to a loved one with Alzheimer’s disease or other dementia.




ABOUT ALZHEIMER’S DISEASE

Alzheimer’s disease is a progressive neurological disease characterized by problems with memory, thinking and behavior. More than five million people in the United States are currently living with Alzheimer’s disease; it is also estimated that by 2050, the number of people age 65 years and older with Alzheimer’s disease may triple to 16 million. In addition, every 67 seconds, someone in the United States develops Alzheimer’s disease.




RESOURCES

Alz Online: Alzheimer’s Caregiver Support Online

www.alzonline.phhp.ufl.edu

Alzheimer’s Caregiver Support Online (AlzOnline) provides caregivers of loved ones with Alzheimer’s disease with helpful support, such as tips and techniques for activities of daily life and managing medicine. In addition, caregivers can participate in online classes through the site.

Alzheimer’s Association

www.alz.org

The Alzheimer’s Association is an international, nonprofit organization in Alzheimer’s care. Their site includes an abundance of resources, support, information and more. The Caregiver Center on the site has personalized tools, such as a Care Team Calendar as well as message boards that allow you to connect with other caregivers.

Alzheimer’s disease Education and Referral Center

www.nia.nih.gov/alzheimers

The Alzheimer’s disease Education and Referral (ADEAR) Center is a portal created by the U.S. Congress to provide the public with support, information and news regarding research and federal initiatives.

Alzheimer’s Foundation of America

www.alzfdn.org

The Alzheimer’s Foundation of America (AFA) provides care for people with Alzheimer’s disease and their caregivers and families. Visitors to the site can access resources including educational support and programs.

Caregiver Action Network

www.caregiveraction.org

The Caregiver Action Network (CAN) is a family caregiver organization that provides support for people caring for loved ones with chronic conditions. Visit the site to watch quick videos and listen to what caregivers like you have to say.

Eldercare Locator

www.eldercare.gov

The Eldercare Locator is a public service of the Administration on Aging, U.S. Department of Health and Human Services. It is a nationwide service that connects older Americans and their caregivers with information on senior services.

Family Caregiver Alliance

www.caregiver.org

The Family Caregiver Alliance (FCA) was founded in the 1970s as the first community-based nonprofit organization in the U.S. to address the needs of caregivers. Today, the FCA offers services, educational programs and publications developed with caregivers’ expressed needs in mind, to offer real support, essential information, and tools to manage the complex and demanding tasks of caregiving.

U.S. Department of Veteran Affairs Caregiver Support Services

www.caregiver.va.gov

Family caregivers provide crucial support in caring for veterans. U.S. Department of Veterans Affairs (VA) offers a number of services that are designed specifically to assist caregivers of veterans, including the VA Caregiver Support Line as well as support from local Caregiver Support Coordinators.

NIH Senior Health

www.nihseniorhealth.gov/alzheimersdisease

The NIH (National Institute of Health) Senior Health site offers general health and wellness information for older adults and caregivers. Here you will find a wealth of information organized in an easy-to-use index format.


The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer's Disease, Related Dementias and Memory Loss

Caregivers are responsible for a lot. This guide contains detailed advice to make caring for people with Alzheimer’s disease a little easier. It also includes condition information, management tips, and advice concerning out-of-home care.

The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss. Nancy L. Mace and Peter V. Rabins, Mass Market Paperback, 2012. ISBN: 978-1455521159

Caregiver Survival Series

Caregivers work long, hard hours under constant emotional pressure and that can make it hard to stay motivated and committed to caregiving. This series contains caregiving tips and techniques for managing the day-to-day responsibilities of caregiving.

Caregiver Survival Series. Sherman, James R. Pathway Books.

  • Preventing Caregiver Burnout (1996) ISBN: 978-0935538168
  • Creative Caregiving (1996) ISBN: 978-0935538175
  • Coping with Caregiver Worries (1998) ISBN: 978-0935538205

The Caregiver’s Handbook: A Complete Guide to Home Health Care

Experienced caregivers, volunteers and staff from the Visiting Nurse Associations of America wrote this illustrated handbook for caregivers like you. It provides practical tips on nutrition, personal hygiene, communicating and adapting the home to meet your loved one’s needs.

Caregiver’s Handbook: A Complete Guide to Home Health Care. Visiting Nurse Associations of America, DK Publishing, 1998. ISBN: 978-0789419699

The Caregiver’s Manual: A Guide to Helping the Elderly and Infirm

This manual provides step-by-step advice for caregivers who are taking care of elderly or critically ill people, as well as guidance on coping with the emotional toll that caring for another can take.

The Caregiver’s Manual: A Guide to Helping the Elderly and Infirm. Williams, G. and Kay, P. Citadel Press, 1995. ISBN: 978-0806515977

Caregiving: The Spiritual Journey of Love, Loss, and Renewal

In this book, the author shares her journey as a caregiver and provides advice from leaders in the fields of aging, medicine, finance, and spirituality. Issues such as depression, stress, housing, home care and end-of-life concerns are also touched upon in this book. A list of additional resources is provided in the back of the book.

Caregiving: The Spiritual Journey of Love, Loss, and Renewal. McLeod, B. John Wiley and Sons, Inc., 1999. ISBN: 978-0471254089

Comfort of Home: An Illustrated Step-by-Step Guide for Caregivers, 2nd Edition

Comfort of Home is an illustrated guide that can help caregivers do their job, both now and as new healthcare needs arise. This guide walks caregivers through various obstacles and tasks, such as providing a safe and comfortable environment for their loved one. It can also help with managing day-to-day needs, such as hygiene. This guide also addresses end-of-life healthcare documents and tips for avoiding caregiver burnout.

Comfort of Home: An Illustrated Step-by-Step Guide for Caregivers, 2nd Edition. Meyer, M. and Derr, P. CareTrust Publications, 2002. ISBN: 978-0966476736

Counting on Kindness: The Dilemmas of Dependency

Counting on Kindness: The Dilemmas of Dependency depicts what life is like for the loved one who is now dependent on a caregiver. It tells of the emotional struggles, including self-esteem and loss of identity as a condition progresses.

Counting on Kindness: The Dilemmas of Dependency. Lustbader, W. The Free Press, 1994. ISBN: 978-0029195161

Helping Yourself Help Others: A Book for Caregivers

In this book, Rosalynn Carter talks about the social issues surrounding caregiving. She also offers solutions to the problems caregivers often experience, such as loneliness, burnout, anger and feelings of helplessness.

Helping Yourself Help Others: A Book for Caregivers. Carter, R. PublicAffairsTM. 2013. ISBN: 978-1610393522

Hiring Home Caregivers: The Family Guide to In-Home Eldercare

In-home eldercare, a difficult subject for caregivers, is explored through both an emotional and practical lens in this guide. This book offers a breakdown of a caregiver job description, describes the hiring process and how to do background checks. It also includes a suggested employment agreement and tax, legal and insurance information. Samples of checklists and worksheets are included.

Hiring Home Caregivers: The Family Guide to In-Home Eldercare. Susik, D. Impact Publishers/American Source Books, 1995. ISBN: 978-0915166916

The Hospice Handbook: A Complete Guide

Hospice care can be an incredibly difficult topic for caregivers to discuss. The Hospice Handbook can help caregivers to review options and offer advice regarding quality of life for the terminally ill. Topics include in-home care, palliative care and pain management.

The Hospice Handbook: A Complete Guide. Beresford, L. Little, Brown and Co., 1993. ISBN: 978-0316091381

Kind Words for Caring People: Daily Affirmations for Caregivers

Keeping a positive attitude is very important when you are caring for an aging or disabled family member. In Kind Words for Caring People: Daily Affirmations for Caregivers, Sefra Pitzele has put together a series of daily affirmations with the intention of inspiring positivity for caregivers.

Kind Words for Caring People: Daily Affirmations for Caregivers. Pitzele, S. Health Communications, 1992. ISBN: 978-1558742109

Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill

When caring for a loved one with a serious illness, the tasks and responsibilities involved can be overwhelming. Share the Care offers guidelines, suggestions and an easy-to-use workbook section to help you create your own support circle.

Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill. Capossela, C. and Warnock, S. Fireside Books/Simon & Schuster, 2004. ISBN: 978- 0743262682

Taking Charge: Overcoming the Challenges of Long-Term Illness

Long-term illnesses such as Alzheimer’s disease can often take a toll on the whole family. This step-by-step book can help caregivers and their families navigate and overcome new challenges.

Taking Charge: Overcoming the Challenges of Long-Term Illness. Pollin, I. and Golant, S. Times Books, 1994. ISBN: 978-0812922585

Taking Time for Me: How Caregivers Can Effectively Deal with Stress

More often than not, caregivers put themselves last. In Taking Time for Me, Katherine L. Karr encourages caregivers to develop a healthier balance between their own well-being and that of those who depend on them.

Taking Time for Me: How Caregivers Can Effectively Deal with Stress. Karr, K. Golden Age Books, 1992. ISBN: 978-0879757960

Today’s Caregiver Magazine

Today’s Caregiver Magazine delivers up-to-date information for caregivers, such as advice, news, recipes, and celebrity caregiver interviews.

Today’s Caregiver Magazine. 3350 Griffin Road, Ft. Lauderdale, FL 33335; 1-800-829-2734, or www.caregiver.com.

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

This playbook is a social model, not a medical model (doing things with your loved one, not for your loved one). It was written to give practical tips to help guide you in taking care of your loved one with Alzheimer's disease.


SUPPORTING YOURSELF

Get support

Try joining a support group where you can learn from others' experiences and share your own.

Reduce guilt

Don't feel guilty if you need to set aside some time for yourself. Taking care of your own needs is an important part of staying physically and emotionally healthy.

Set limits

It's okay to say no to requests that may drain your energy rather than restore it. And it's okay to say yes to offers for help from friends and family.

Nurture your body

Not getting enough sleep is a major cause of stress and illness. You may experience times of irritability, anger and exhaustion, which can be compounded by a lack of sleep.

Ease your mind

Take breaks as you need them. And while it may be difficult, it is helpful to deal with family conflicts that pertain to providing care. Acknowledge loss and grief. Maintain connections with family and friends to help keep your spirits high while keeping things in perspective.

Live a healthy lifestyle

Eat a healthy diet and get regular exercise. These can help you look and feel better about yourself—and help boost your own confidence about your caregiving abilities.


THE TEAM

meet Kailen Rosenberg

“The Love Architect” and hailed by Oprah Winfrey as a “Love Ambassador,” Kailen Rosenberg is more than just a matchmaker, she is a respected author and teacher of “love on a higher level.”

meet Betsy Broyles Arnold

Betsy is the daughter of football icon Coach Frank Broyles who, along with her twin sister, Linda, became the primary caregiver to their mother, Barbara, who lost her battle with Alzheimer’s in 2004. That experience led her -- together with her sister and father -- to create The Frank and Barbara Broyles Foundation to help families and caregivers who are caring for a loved one with Alzheimer’s.


References

1. “What is Alzheimer’s?” Alzheimer’s Association. 2014.

Read Article

Accessed February 5, 2015.

2. “2014 Alzheimer’s disease Facts and Figures.” Alzheimer’s Association. 2014.

Read Article

Accessed February 5, 2015.