Resources for Caregivers

Millions of people are caring for loved ones who are sick or disabled. In fact, 1 in 4 US adults report providing care or assistance to someone with a long-term illness or disability.¹

In our 2020 Caregiving In America survey, we explored the experiences of people serving as caregivers. More than 500 people completed the survey, providing a unique look at their role. Caregivers mentioned that they spend about 30 hours per week giving care. Nearly half do not get any help from others for what they do.

All told, some 90 million Americans are caring for loved ones with disabilities, disease, or chronic conditions. While being a caregiver can be rewarding, it can also cause stress and depression.^1,2

The good news is that there is help out there. While there will be good days and bad ones, resources are available to help keep you feeling supported, positive, and healthy. Perhaps you would like to attend an in-person or a virtual support group. You may want to hire a reliable caregiver to give you an occasional break. Maybe you would like to learn some stress-relief techniques. Here is a helpful guide to what you can find.

General resources for caregivers

Family Care Navigator helps family caregivers find public, private, and nonprofit programs and services nearest to their loved one. Its website outlines government health and disability programs, legal resources, and disease-specific organizations. Click on your state to find services available to you.

The Caregiver Action Network’s Care Support Team can help you deal with a variety of caregiving challenges. Experts are available to take your call from 8 AM to 7 PM EST. The Caregiver Help Desk offers no-cost resources for family caregivers on a variety of topics.

The National Center for Chronic Disease Prevention and Health Promotion offers advice on how to communicate with the care recipient’s doctor. It also gives tips on what to do before, during, and after the person’s doctor’s visit. It is run by the Centers for Disease Control and Prevention (CDC). The CDC also has a Complete Care Plan that lets you summarize the care recipient’s health condition and current treatments for their care.

The Eldercare Locator offers a variety of resources for caregivers. Learn where you can get help with transportation, what services may be available to older Americans who are veterans, or how to find activities and wellness programs for older adults.

Several free, password-protected sites help you organize meals and other services that your loved one may need:

• Lotsa Helping Hands has the option to share calendars for care team coordination.
• Tyze allows you to quickly and easily build a network for support and stay connected to your care team.
• CaringBridge, the site or app, includes tools you need to keep your family and friends updated while caring for your loved one.

Virtual support groups

Living in a rural area, having difficulty traveling, or fearing large groups of people can prevent some people from finding and attending in-person support groups. There are options for those who prefer to find online support:

• Chronic-Kidney-Disease.net Facebook page
• The Caregiver Space, a community of family, community, and professional caregivers who share their experiences

Finding a qualified professional caregiver

If having another caregiver to help you sounds like a great idea, there are a few resources that are worth checking out:

• The Caregivers section of the National Association of Area Agencies on Aging helps connect you with local providers who can help you create a caregiving plan, address certain challenges, or find support services.
• The National Respite Locator lets you search for respite providers and programs as well as respite funding. It also provides general family caregiver information.
• Family Caregiver Alliance is a useful resource if you are considering hiring in-home help.

Resources for long-distance caregivers

If you are caring for your loved one but do not live close by, try these:

• Eldercare Locator is a search tool offered by the US government’s Administration on Aging. It can connect you to various options for care. Or you can call the service at 1-800-677-1116.
• The National Adult Day Services Association helps you find programs that may be available to your care recipient. More than 5,000 adult day services centers serve over 260,000 participants and family caregivers around the United States.

The 2020 Caregiving In America survey was conducted online from September 2019 through August 2020. Of the 577 people who completed the survey, 348 are current caregivers, 36 are past caregivers for someone who is alive, and 193 are past caregivers for someone who is now deceased.