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Resources for Family Caregivers

If you’re a caregiver for an elder or a loved one with an illness or disability, you may need help with finances, advocacy, or self-care. Read this guide for valuable resources.

Last Updated: Apr 27, 2022
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.

Jump to:

What is a family caregiver?
Family caregiver facts and stats
Learning to be a family caregiver
Support for family caregivers
Family caregiver mental health and self-care
Long-distance family caregiving
Preparing for the patient’s future
Specific family caregiving needs
References

What is a family caregiver?

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.

Family caregiver facts and stats

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.

Learning to be a family caregiver

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

Support for family caregivers

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

Professional care

Finances

Community resources

Family caregiver mental health and self-care

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.

Long-distance family caregiving

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.

Preparing for the patient’s future

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:

Other resources

Specific family caregiving needs

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.

Aging

Disability

Illness

References

[1] U.S. National Library of Medicine. (2022, March 15). Caregivers. MedlinePlus. Retrieved April 27, 2022, from https://medlineplus.gov/caregivers.html

[2] Schulz, R., & Eden, J. (Eds.). (2016). Families caring for an aging America. The National Academies Press.

[3] Caregiving in the US 2020. The National Alliance for Caregiving. (2020, May 11). Retrieved April 27, 2022, from https://www.caregiving.org/caregiving-in-the-us-2020/

[4] The National Alliance for Caregiving. (2020, May). The “typical” African American caregiver – AARP fact sheet. AARP. Retrieved April 27, 2022, from https://cdn.aarp.net/content/dam/aarp/ppi/2020/05/african-american-caregiver.doi.10.26419-2Fppi.00103.006.pdf

[5] The National Alliance for Caregiving. (2020, May). The “typical” Asian caregiver – AARP fact sheet. AARP. Retrieved April 27, 2022, from https://www.aarp.org/content/dam/aarp/ppi/2020/05/asian-caregiver.doi.10.26419-2Fppi.00103.007.pdf

[6] The National Alliance for Caregiving. (2020, May). The “typical” Hispanic caregiver – AARP fact sheet. AARP. Retrieved April 27, 2022, from https://www.aarp.org/content/dam/aarp/ppi/2020/05/hispanic-caregiver.doi.10.26419-2Fppi.00103.011.pdf

[7] The National Alliance for Caregiving. (2020, May). The “typical” LGBTQ caregiver – AARP fact sheet. AARP. Retrieved April 27, 2022, from https://www.aarp.org/content/dam/aarp/ppi/2020/05/lgbtq-caregiver.doi.10.26419-2Fppi.00103.012.pdf

[8] The National Alliance for Caregiving. (2020, May). The “typical” student caregiver – AARP fact sheet. AARP. Retrieved April 27, 2022, from https://www.aarp.org/content/dam/aarp/ppi/2020/05/student-caregiver.doi.10.26419-2Fppi.00103.016.pdf

[9] The National Alliance for Caregiving. (2020, May). The “typical” caregiver of a care recipient living in a rural area – AARP fact sheet. AARP. Retrieved April 27, 2022, from https://www.aarp.org/content/dam/aarp/ppi/2020/05/rural-caregiver.doi.10.26419-2Fppi.00103.015.pdf

[10] Dias Lopes da Rosa, R., Pedro Simões-Neto, J., Luiza Santos , R., Torres, B., Alice Tourinho Baptista, M., Ramos Santos Kimura, N., & Cristina Nascimento Dourado, M. (2020, February). Caregivers’ resilience in mild and moderate Alzheimer’s disease. National Library of Medicine. Retrieved April 27, 2022, from https://pubmed.ncbi.nlm.nih.gov/30499333/

[11] Hughes, R. G. (Ed.). (2008, April). Supporting family caregivers in providing care. National Library of Medicine. Retrieved April 27, 2022, from https://www.ncbi.nlm.nih.gov/books/NBK2665/

[12] U.S. Department of Health and Human Services. (2017, May 1). What is long-term care? National Institute on Aging. Retrieved April 27, 2022, from https://www.nia.nih.gov/health/what-long-term-care

[13] Ashrafizadeh, H., Gheibizadeh, M., Rassouli, M., Hajibabaee, F., & Rostami, S. (2021, June 24). Explain the experience of family caregivers regarding care of Alzheimer’s patients: A qualitative study. National Library of Medicine. Retrieved April 27, 2022, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8264438/

[14] U.S. Department of Health and Human Services. (2020, September 23). Telehealth: Improving dementia care. National Institute on Aging. Retrieved April 27, 2022, from https://www.nia.nih.gov/news/telehealth-improving-dementia-care