Caregiver Resources: Where Caregivers Can Go for Support
Millions of people are caring for loved ones who are sick or disabled. In fact, some 25 percent of U.S. 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, and they provided a unique look at their role. Caregivers mentioned that they are spending about 30 hours per week providing care, and 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, plenty of resources are available to help keep you feeling supported, positive, and healthy. Maybe 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, or perhaps you would like to learn some stress-relief techniques. Here is a helpful guide to what you will find.
General resources for caregivers
Family Care Navigator helps family caregivers find public, private, and nonprofit programs and services nearest to their loved one, whether that person lives at home or in a residential facility. Government health and disability programs, legal resources, and disease-specific organizations are outlined; you click on your state to find services available to you.
The Caregiver Action Network’s Care Support Team can help you navigate a variety of complex caregiving challenges. Experts are available to take your call from 8 am to 7 pm EST. Because of the COVID-19 pandemic, the Caregiver Action Network has created a Caregiver Help Desk that 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, plus 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. Visit this site to 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, which has the option to share calendars for care team coordination
- Tyze, which allows you to quickly and easily build a network for support and stay connected to your care team
- CaringBridge, a site or app, that includes tools you need to keep your family and friends updated while caring for your loved one.
Virtual support groups
For some, living in a rural area, difficulty traveling, or being in large groups of people can prevent people from finding and attending in-person support groups. Those who prefer to find online support, there are places out there for you.
- ParkinsonsDisease.net Facebook page
- The nonprofit TheCaregiverSpace.org, is 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:
- Caregivers section of the National Association of Area Agencies on Aging, which helps connect you with local providers who can help you create a caregiving plan, address specific challenges, or identify support services.
- National Respite Locator lets you search for respite providers and programs, search for respite funding, and provides general family caregiver information.
- Family Caregivers 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 you don’t live close to him or her, there are
- Eldercare Locator, a search tool offered by the U.S. government’s Administration on Aging, 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 260,000 participants and family caregivers are served by over 5,000 adult day services centers 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.
Do you or a loved one use smartphone apps to help with PD management?