Resources for Family Caregivers

Taking care of a loved one can be an equally rewarding and stressful experience. Many family caregivers express that caregiving allows them to build a strong bond with the care recipient, and providing care gives them a sense of purpose.

Being an informal caregiver can also negatively impact financial and mental health.1 Most family caregivers work outside of the home while providing care, and some struggle to pay for regular expenses. Family caregivers are also prone to burnout without receiving support or being able to ask for help.

The resources in this guide are designed to help caregivers ease some of that burden. Accessing services, support groups, government programs, or online resources created to help caregivers is essential to taking on this role. You shouldn’t have to do this alone — let these resources help you take advantage of what’s out there.

A family caregiver takes care of an aging, ill, or disabled family member. This care can involve everything from simple tasks like checking the mail to 24-hour, constant care.2 Many family caregivers live with the care recipient, but some caregivers provide care from a distance, known as long-distance caregiving.

The type of care depends on the care recipient’s situation and the caregiver's availability. Some care recipients are more independent than others and can take care of daily needs on their own. Others require assistance with:

• Everyday tasks like going to the bathroom, getting dressed, or eating meals
• Housework like cooking or cleaning
• Errands such as grocery shopping or picking up medications
• Medical care, including taking prescriptions or attending doctor’s appointments
• Decisions regarding healthcare, finances, or legal issues1

Some care recipients start off needing a lot of care and progressively get better — if they are recovering from an illness or injury, for example. Other care recipients gradually need more care for progressive diseases like Alzheimer’s disease or other forms of dementia.

Sometimes, family caregiving involves outside help from other family members or medical professionals. A family caregiver may also need to work or take care of children while balancing caregiving duties. Other relatives may need to pitch in and provide some care in these cases. There are also organizations, facilities, and medical providers who can step in to supplement family caregiving when needed. Arranging these interventions can often be a financial burden (see the “Support for family caregivers section” for information on financial assistance).

Family caregivers are also often given the additional responsibility of handling the care recipient’s legal, financial, medical, and end-of-life needs. A family caregiver does not just address daily care but sometimes becomes the decision-maker on the care recipient’s behalf.

Obviously, this can be a stressful and intense role. Juggling other responsibilities with caregiving can lead some caregivers to burn out or suffer other mental health issues. Many experts emphasize self-care and support networks to lessen the burden that some caregivers experience.

In 2020, the National Alliance on Caregiving (NAC) and AARP released their list of U.S. caregiving statistics.3 The report revealed that 53 million people in the U.S. characterize themselves as caregivers. This is up from 43.5 million in 2015, meaning that nearly one-fifth of the U.S. population now cares for a loved one.

Here are some more facts and stats from that report:

• 61% of caregivers are women, and 39% are men.
• 24% of family caregivers care for more than one person.
• 26% expressed difficulty coordinating healthcare.
• 26% of caregivers provide care for someone with Alzheimer’s disease or dementia. This is up from 22% in 2015.
• 23% say that being a caregiver has made their own health decline, with 21% characterizing their health as fair to poor.
• 61% of caregivers work in addition to providing care.
• 45% have been impacted financially by caregiving.

The report also breaks down the survey results based on demographic information and type of caregiver. For example, it states that the “typical” African American caregiver is 47.7 years old and cares for the care recipient in their home without assistance. About half felt forced to take on the caregiving role, but most feel it’s an overall rewarding experience.4 (The report uses the word typical in quotation marks to signify that these statistics are the results of this specific survey and may not be broadly true of all caregivers that fall into these categories.)

These reports are incredibly detailed, but here are a few highlights:

• The “typical” Asian caregiver is 49.3 years old and has been providing care, on average, for 4.7 years. More than any other demographic, Asian caregivers find caregiving highly stressful.5
• The “typical” Hispanic caregiver is 43.3 years old, the youngest of the racial demographic categories. Most provide care without paid help and have experienced financial strain due to caregiving.6
• The “typical” LGBTQ caregiver is 42.4 years old and takes care of a parent or grandparent. LGBTQ caregivers spend about 28 hours per week with the care recipient, making them the primary caregiver.7
• The “typical” student caregiver is 30.6 years old and is more likely not to have health insurance than any other caregiver type. Student caregivers are also more likely to use technology to care for and check on their loved ones.8
• A rural care recipient's “typical” caregiver is 48.8 years old and is commonly a white woman. The caregiver usually does not live in the rural area but still devotes an average of 26.3 hours per week to caregiving.9

Additional reports cover “typical” Gen X, Millennial, High Intensity, No Choice, and Feeling Alone caregivers.

It’s important to remember that becoming a caregiver doesn’t mean that you instantly have the skills and know-how to assume the role effectively. It takes time, practice, and resources to ensure that you successfully care for your loved one. Luckily, many online and in-person resources are available to help you develop caregiving skills.

• Powerful Tools for Caregivers offers virtual and in-person courses that help you hone caregiver skills, including self-care tools and community resources. They also provide The Caregiver Helpbook, which includes all course content.
• UCLA Health offers a series of videos and webinars designed to help those who take on patients with Alzheimer’s disease or other forms of dementia. The resources include topics like depression, home safety, and repetitive questions.
• The Family Caregiver Alliance offers a wealth of resources, including their Caregiving 101 series that provides information about starting out as a caregiver, utilizing self-care techniques, and asking for help.

Other resources

• The HelpGuide to Family Caregiving
• CareLink’s How to Become an In-Home Family Caregiver
• Food and Drug Administration: Caring for Others: Resources to Help You

Many family caregivers may feel like they are alone in caring for their loved ones. The truth is that there are many services and professionals available to help assist you if you know where to look.

Some caregivers rely on other people, like relatives or friends, to help them with caregiving duties. Family caregivers may also consider support groups, transportation services, community programs, and social services to supplement care. You may even be able to obtain financial assistance through your employer or the government to ease some of the financial strain.

• Sites like the Caregiver Action Network provide comprehensive resources and guidance for family caregivers to access help and connect with other caregivers.
• CaringInfo provides step-by-step information on preparing to become a caregiver, including filing paperwork, finding providers, and considering hospice or palliative care.
• The Family Caregiver Alliance provides free support, information, and resources for various caregivers, including family caregivers and those caring for themselves.
• The Caregiver Support Program of the Office of Veterans Affairs helps those caring for veterans obtain information, support, and clinical services.

Browse the categories below to learn more about other forms of support available for family caregivers.

Family resources

• How to Share Caregiving Responsibilities with Family Members
• AARP Resources for Caregivers and their Families

Professional care

• Residential Facilities, Assisted Living, and Nursing Homes
• Family Caregiver Alliance: Hiring In-Home Help
• Meals on Wheels
• National Adult Day Services Association
• National Volunteer Caregiving Network
• National Respite Locator

Finances

• National Family Caregiver Support Program
• U.S. Department of Veterans Affairs: Paying for Long-Term Care
• AARP: How to Receive Pay When Becoming a Family Caregiver

Community resources

• Caregiving at Home: A Guide to Community Resources
• Family Caregiver Alliance: Services by State
• U.S. Department of Veterans Affairs: Home and Community-Based Services

The mental health of family caregivers is essential.10 The responsibility of caregiving can be rewarding but also overwhelming, so caregivers must take care of themselves by getting enough rest, eating a balanced diet, taking a break when they need it, and asking for help.11 Focusing on self-care can help family caregivers avoid burnout.

One effective way to take care of your mental health is through therapy. This can involve talk therapy or support groups with other caregivers. Online therapy offers a convenient way for caregivers to get help without being away from home. There are also many online resources for caregivers to help them cope with the stresses of providing care.

• Powerful Tools for Caregivers offers courses to teach caregivers how to balance caregiving responsibilities with self-care.
• AgingInPlace provides resources about Caregiver Burnout to help you identify the signs and prevent burnout from happening.
• The National Institute on Aging offers the resource Taking Care of Yourself: Tips for Caregivers that helps you navigate the stresses of caregiving.
• Read our guide to the Best Online Therapy for reviews and resources to help you find a therapist that fits your needs.

When we think of family caregiving, we might assume that the caregiver and patient live in the same household. But many loved ones provide care from afar. Long-distance family caregiving presents its own challenges, and family members may wonder how best to support the care recipient even if they can only visit or call. Many resources offer advice and guidance for long-distance caregivers.

• Family Caregiver Alliance: Handbook for Long-Distance Caregivers
• National Institute on Aging: Getting Started with Long-Distance Caregiving
• National Institute on Aging: Eight Tips for Long-Distance Caregiving
• AARP: Tips for Being a Long-Distance Caregiver
• Alzheimer’s Association: Long-Distance Caregiving
• American Psychological Association: Long-Distance Caregivers

It’s important to listen to the care recipient’s wishes and help them make decisions about their care. Often, family caregivers assume medical, financial, and legal responsibility for the patient.12 Having an open dialogue about things like money, medical care, and end-of-life requests may be uncomfortable, but it’s necessary to help preserve the care recipient’s dignity.

Many caregivers may not be experienced in legal or financial issues and may need to seek help from professionals to feel comfortable caring for their loved ones in this way. Thankfully, online resources are available to walk caregivers through these processes.

The National Institute on Aging provides a long list of resources for caregivers regarding legal, financial, and medical issues:

• Paying for Care
• Aging in Place: Growing Older at Home
• Finding Long-Term Care for a Person with Alzheimer’s
• Advance Care Planning: Healthcare Directives
• Legal and Financial Planning for People with Dementia

Other resources

• Family Caregiver Alliance: Making End-of-Life Decisions
• U.S. Department of Veterans Affairs: Making Decisions and Advance Care Planning

There are many reasons why a loved one may need a caregiver. Sometimes, caregivers must help someone recover from an injury or illness. Caregivers may also be needed to help aging relatives or patients with illnesses or disabilities. It’s impossible to cover every scenario where a caregiver might be needed, but the links below provide resources for various caregiving needs.

Dementia or Alzheimer’s disease

While caring for someone with dementia can be rewarding, the disease's progressive nature can also lead to caregiver exhaustion and burnout.13 For this reason, there are many groups and resources devoted to helping caregivers. Studies have also shown that telehealth services greatly benefit dementia patients and caregivers since leaving home for appointments can add strain to providing care.14 Check out our Best Online Doctors guide for more information on your telemedicine options.

• Alzheimers.gov: Resources for Caregivers
• Alzheimer’s Association: Caregiving
• Alzheimer’s Foundation: Caregiving Resources
• Lewy Body Dementia Association: Caregivers
• National Institute on Aging: Alzheimer’s Disease and Related Dementias
• U.S. Department of Veterans Affairs: Dementia Care
• The 36 Hour Day: A Family Guide to Caring for Persons with Alzheimer’s Disease, Related Dementing Illnesses, and Memory Loss by Nancy Mace and Peter Rabins, Sixth Edition (2017)

Aging

• Aging Life Care Association
• Eldercare Locator
• Centers for Medicare and Medicaid Services
• The Complete Eldercare Planner: Where to Start, Which Questions to Ask, and How to Find Help by Joy Loverde (2009)

Disability

• Financial Wellness: A Guide for Individuals with Disabilities, Their Families, and Caregivers
• Disability and Health Information for Family Caregivers
• Centers for Disease Control and Prevention: Developmental Disabilities
• Brain Injury Association: Caregiver Information Center
• Autism Society: Caregiver’s Toolkit
• National Alliance on Mental Illness: Family Members and Caregivers
• United Cerebral Palsy: Parents and Families

Illness

• Next Step in Care
• Cancer Support Community
• Help for Cancer Caregivers
• National Cancer Institute: Informal Caregivers in Cancer
• American Cancer Society: Cancer Caregiver Support
• ALS Association: Support for ALS Caregivers
• Muscular Dystrophy Association: Resources for Caregivers
• National Multiple Sclerosis Society: Caregivers
• National Organization for Rare Disorders: Patient and Caregiver Resource Center