If you’re in the midst of a caregiving journey, you’re not alone: 34.2 million Americans provide unpaid care to an adult over 50.
Caring for an aging loved one is both rewarding and challenging. Caregivers selflessly juggle their own needs and the needs of their loved one.
But no one needs to shoulder the load alone. A variety of local health organizations, support groups, financial assistance programs and more can provide caregivers with tactical help, peer support, and advice. This guide can help you find support available in your community.
Organizations for Specific Conditions
Caregiving needs can vary depending on your loved one's condition. Luckily, there are numerous organizations dedicated to supporting caregivers taking care of people with specific conditions, like Alzheimer’s, Parkinson’s, Heart Disease, and more.
Alzheimer’s Association
Over 6 million Americans are living with Alzheimer’s disease. That number is projected to rise dramatically as Baby Boomers continue to age. For those caring for someone with Alzheimer’s or other types of dementia, connecting with the local Alzheimer’s Association chapter can provide education, support groups, and even care consultations.
Here are some of the many services the Alzheimer’s Association offers:
- 24/7 helpline for caretakers to ask questions confidentially
- Support groups for caretakers led by skilled clinicians
- Care consultation to help families tackle complex medical issues
- MedicAlert Safely Home registry for dementia patients who wander
- TrialMatch clinical trial matching with the latest research studies
- Caregiver education programs, both in-person and virtually
The phone number to the 24/7 helpline is 1-800-272-3900.
Parkinson’s Disease
The American Parkinson Disease Association (APDA) is a non-profit that provides support to those caring for someone with a movement disorder.
The APDA offers caregivers a wealth of resources and support to help them manage the challenges of caring for someone with Parkinson's disease. These include educational materials, webinars, and training courses to enhance knowledge and skills.
Additionally, APDA provides access to support groups, health and wellness programs, and a resource library filled with practical information.
The phone number to the national headquarters is 1-800-223-2732.
Cancer
Local chapters of the American Cancer Society (ACS) provide incredible resources for cancer patients and their caregivers.
ACS offers a variety of programs to provide support throughout the treatment journey. For instance, the ACS can provide transportation assistance to and from treatment appointments, which can be a major hurdle for patients experiencing fatigue or side effects. Additionally, they offer peer support programs that connect caregivers with others facing similar challenges. These groups can provide a space to share experiences, ask questions, and gain valuable insights from those who have gone through a similar experience.
The ACS also offers nurse navigation programs, where experienced nurses help patients and families navigate the healthcare system. This can be especially helpful during diagnosis and when navigating treatment options.
The phone number to the national offices is 800-227-2345.
Heart Disease & Stroke
The American Heart Association (AHA) provides amazing resources to support caregivers of those with heart disease and stroke.
AHA local chapters empower caregivers with a variety of different resources, including events, educational resources, and guides on how to eat and cook well.
Nationwide, "Go Red for Women” groups supply female caregivers with specialized heart health education. They also provide caregiver support network meetings and referrals to rehabilitation that can help restore independence post-cardiac or stroke events.
The phone number to contact their national headquarters is 1-800-242-8721.
Kidney Disease
Local branches of the National Kidney Foundation (NKF) offer a comprehensive range of support for caregivers of those with kidney disease, especially those undergoing dialysis.
The NKF connects caregivers to peer mentors who can share in their experience and provide support. Patients undergoing dialysis can also get many educational resources, including nutritional support. Social workers from the NKF can also assist families in navigating the complexities of the healthcare system, insurance coverage, and accessing financial aid.
The phone number to the helpline is 1-855-653-2273.
Lewy Body Dementia
The Lewy Body Dementia Association (LBDA) is a vital resource for caregivers supporting loved ones who have been diagnosed with Lewy Body Dementia (LBD).
The LBDA connects caregivers with specialists who can offer guidance on managing symptoms and challenges. Additionally, they have a support helpline, the Lewy Line, that is a lifeline for caregivers facing difficult situations who are in need of a listening ear.
The LBDA also connects caregivers with clinical trial opportunities for LBD treatments, and keep their community updated on new advancements happening in LBD treatment.
The Lewy Line phone number is 1-800-539-9767.
Family Caregiver Alliance
The Family Caregiver Alliance (FCA) is a central hub for all caregivers supporting a loved one.
Unlike condition-specific organizations, the FCA offers a comprehensive range of resources applicable to a broad spectrum of caregiving situations.
Caregivers can find guidance on essential caregiving tasks, such as daily living assistance, medication management, and managing communication. The FCA also tackles complex legal and financial issues that often arise, like navigating healthcare power of attorney, managing long-term care costs, and accessing government benefits.
The phone number to the national helpline is 1-800-445-8106.
Community Assistance Programs
From navigating the healthcare system to finding resources to help with transportation and food, there are so many aspects of caregiving that can be challenging. Grassroots assistance programs sponsored by local governments, charities, religious groups and health systems can be a huge help. Beyond national organizations, your local community may offer valuable resources that can make a difference in your day-to-day life.
Depending on where you live, local resources may include:
Transportation Assistance: Organizations like Angel Wheels, ITNAmerica, and local church groups often coordinate volunteer medical transportation for seniors who can no longer drive independently to appointments.
Friendly Visitor Programs: To help provide engagement to those who may be isolated, and/or giving family caregivers needing respite, trained volunteers make regular social visits, play games and assist with errands through programs found at senior centers, religious congregations, charities, and more.
Discharge Planners & Patient Navigators: Those struggling to navigate the healthcare system should ask the hospital and/or a social worker about access to discharge planners or other patient navigator programs. These programs introduce you to professionals who specialize in linking patients to resources post-discharge.
Home Maintenance & Repair: If you need handyman-type support around the home, a local organization may be able to assist. Often, church projects or Eagle Scout troops’ community service can be of help.
Accessing grassroots assistance often starts with contacting a local church, hospital, or community center. You can also dial 211 from most locations in the United States to speak with a specialist who can provide information on local assistance programs.
Peer Support Groups
Often, the best advice comes from others who have gone through a similar experience. Local caregiver peer support groups hosted by senior centers, religious congregations, healthcare systems or independent non-profits provide opportunities for participants to share their experience.
Discovering the right community helps with stresses and feelings of isolation. These gatherings can prove especially valuable for those assuming caregiving responsibilities without family support nearby.
If you can’t find a group near you, you can also access the myriad of virtual support groups that are available.
Bill Pay & Money Management
As caregivers, there are so many details to deal with - and one of the most frustrating can be money management for a loved one. Sorting medical bills and insurance statements and organizing payments can often fall by the wayside.
Money management services like Silverbills eliminate headaches by streamlining paperwork, essential admin, and more. They can even negotiate better rates and payment plans around expenses.
Alternatively, daily money management programs from non-profits like Money Management International assign trained volunteers to help. They can pay routine bills and keep budgets on track for those unable to do so independently. This avoids utilities being shut off or other vital expenses slipping through the cracks.
And though they're not a non-profit resource, EverSafe monitors financial accounts for unusual activity to protect against fraud.
Government Benefits and Legal Assistance
Sorting through the range of government benefits available to older adults is a research project on its own.
Thankfully, legal advocates make understanding coverage easier. Many law schools sponsor pro-bono elder law clinics to assist local residents with Medicaid applications, proper asset management to fund care needs, preparation of advanced directives, and more. It’s worth reaching out to a law school near you to see if any of these services are available.
In addition to expert legal advice, each U.S. state supports Area Agencies on Aging, which are equipped to guide older adults and caretakers through available benefit programs, including Medicaid and VA Aid. These agencies also oversee local senior centers, providing caregiver support groups, respite care, and healthy living activities.
You can find your local AAA through the National Association of Area Agencies on Aging website.Here are other resources to explore government benefits:
- Benefits.gov: Use the Benefits Finder tool to identify government benefits you or your loved one may be eligible for.
- Social Security Administration: Provides information on disability benefits and Medicare.
- Legal Services Corporation: Offers free legal aid to low-income individuals.
- National Academy of Elder Law Attorneys: This can help you find an elder law attorney in your area.
Respite for Recharging
Managing around-the-clock caregiving responsibilities often leads us to disregard our own health, relationships and interests – even if we know that our ability to support our loved one requires taking care of ourselves. Building in respite helps prevent fatigue and frustration from accumulating.
There are many government-funded respite programs that reimburse caregivers’ purchases for short-term respite care and adult day services. Inquire with your local AAA to see if anything is available in your area.
How to Find and Access Resources
Here are ways to find and access resources in your area:
- Use online directories: Utilize the Eldercare Locator website to find resources near you.
- Contact your local Department of Aging: They can provide information on area-specific resources.
- Consult with healthcare providers: Doctors and social workers can often refer you to local resources.
- Join online communities: Often, local Facebook groups will have people near you that have experience caring for a loved one who have great tips and ideas.
- Attend local health fairs: These events often showcase various community resources and services.
Seeking Solutions Together
There are often a breadth of resources for older adults and caregivers in each community. Local aging agencies can link families to adult day programs that has structured around social engagement. Support groups and case management assist with the emotional and practical hurdles. Non-profits can support you with high-quality educational caregiving resources. Volunteer networks are willing to lend an extra hand with household duties, transportation, companionship and care coordination.
No one should have to navigate caregiving alone. With an openness to ask questions and seek solutions, the path becomes more manageable, one step at a time.
