Caregiving

Millions of Americans take care of a family member or with a health condition. Being a caregiver can be a labor of love, but it can also be stressful. Learn how you can be an effective caregiver while also taking care of yourself.

Overview

Caregiving can be rewarding and meaningful. Many people find it provides a sense of fulfillment and that they like feeling useful and needed. But the ongoing demands of taking care of someone else can strain even the most resilient person.

The need for long-term care can arise suddenly, such as after a heart attack or stroke. More often, however, the need for long-term care develops gradually as people require more care as they get older and frailer or as a serious, ongoing illness or health condition gets worse.

Common Caregivers

Millions of Americans take care of someone with a serious health condition. Many caregivers are family members, friends, or neighbors.

Spouses and adult children are the most common family caregivers for older adults. In many cases, one person takes on most of the everyday responsibilities of caring for an older person. This tends to be a spouse or the child or sibling who lives closest.

Many people live far away from their family or friends who need help. You can still provide support and help as a long-distance caregiver.

Additionally, many older adults are caregivers for their grandchildren or other young relatives. These kinds of families are often called grandfamilies, in the case of grandparents and grandchildren, or kinship families more generally.

Many caregivers care for their children as well as an aging parent or partner. These caregivers are referred to as the “sandwich generation” and may face additional emotional and financial challenges.

The Many Roles of a Caregiver

Caregiving is more than a single role — it can involve many types of responsibilities and skills, including:

Medical coordinator: Making appointments, managing tests, coordinating with doctors and specialists, keeping track of medicines, working with insurance providers, and ordering medical equipment and supplies
Advocate and/or Power of Attorney: Advocating for and arranging services and supports, ensuring safety and security, and respecting independence. Advance care planning such as choosing a health care proxy and preparing a living will
Support system: Providing comfort, helping cope with new fears and anxieties, and offering optimism
Family member: Sharing routines, engaging in familiar activities, and socializing with friends and family
Personal assistant: Running errands, cooking meals while managing dietary restrictions, arranging transportation, paying bills, managing prescriptions, and money management
Home health aide: Providing medicines and treatments, monitoring symptoms, and helping with self-care routines

Long-Distance Caregiving

If you live an hour or more away from a person who needs care, you are a long-distance caregiver. This kind of care can take many forms, from helping with money management and arranging for in-home care to providing respite care for a primary caregiver and planning for emergencies.

From a distance, a caregiver may be able to accomplish some of the tasks listed above. They may also provide support by:

Arranging for supplemental care management or in-home care by hiring formal caregivers such as home health aides to support caregiving efforts
Serving as an information coordinator by researching information about relevant health conditions and medicines
Researching long-term care options, such as an assisted living facility or nursing home
Creating a list of important phone numbers and email addresses in a shared document
Setting up a shared calendar online or in a smartphone app to coordinate with other caregivers
With permission, attending the person’s telehealth visits
Helping the older person learn about the features of their mobile or smart phone, such as texting and video calls

Caring for Person with Dementia

Caring for a person with dementia takes a lot of time and effort, and it often exceeds what one person can provide on their own. Some caregivers need help when the person is in the early stages of dementia. Other caregivers look for help when the person is in the later stages of the disease. It’s okay to seek help whenever you need it. See the dementia page for more information on caregiving for dementia.

Getting Started with Caregiving

It’s not always possible to plan for future caregiving needs. When possible, however, the best time to think about long-term care is before it is needed. Planning for the possibility of long-term care gives you and your family time to learn about services available in your community and what they cost. In the case of care for older adults, planning ahead can help older adults make decisions about their future care early.

As you get started, especially if you have never been a caregiver before, it may feel daunting at first. There might be tasks to organize, new medical terms to learn, and schedules to coordinate. Start by thinking about:

Your loved one’s needs
Family members and friends who can help you with caregiving tasks
Services and community resources, such as home health care or adult day care centers
Options for paying for care

Learn About the Person's Medical Situation

Learn about the person’s health and any treatments they are receiving. Knowing the details of their situation can help you understand what is going on, anticipate how an illness might change or worsen over time, and manage the person’s health care. It can also make talking with the person’s doctors easier and reduce the likelihood of a medical crisis.

The older person may be hesitant to share their health information. They may not want to worry you, or they may not want others to know how serious their health issues have become. Approach these conversations sensitively and explain why you’re asking questions about their health.

If the person isn’t comfortable talking about it themselves, they may be willing for you to talk with their health care provider instead. By law, you will need written permission to receive medical information about the person unless they are with you in person and able to give consent. The health care provider’s office can explain the process and provide the necessary forms.

Another thing to consider is emergency medical alert systems. These respond to medical and other emergencies via an electronic monitor that a person wears. The monitor alerts emergency personnel when a person becomes lost, falls, or needs urgent medical assistance.

Determine Where to Get Help

Consider asking family members and friends to share caregiving tasks. If someone you know and trust is also a caregiver, ask them for tips and recommendations for resources near you. You can also look for resources online or in your community, such as local and state offices on aging, social service agencies, or nearby senior centers.

The Eldercare Locator can help you find resources in your area, including in-home help, transportation, and modifications to make a person’s home safer and easier to get around. It can also provide information about paying for care. Visit the Eldercare Locator or call 800-677-1116.

Get Training if Needed

Many people don’t have caregiving experience when they are first needed. Caregiver training is available from many sources, including hospitals, state and local governments, and nonprofit organizations. Training courses are often free or low-cost, and some can be completed online. Medicare and Medicaid will sometimes pay for caregiver training.

Long-Distance Caregivers

Ask the person receiving care and the primary caregiver, if there is one, how you can be most helpful.
Talk to people you know who are long-distance caregivers to see if they have suggestions about ways to help.
Develop a good understanding of the person’s health issues and other care needs.
Offer to provide occasional respite care to give the primary caregiver a break.
When you visit, look for tasks that need to be done and can be taken care of from a distance.

Managing a Changing Relationship

The relationship you have with the person you care for will likely change as you begin to help with more daily activities. Navigating the change in a relationship can be difficult.

Experts suggest caregivers consider 3 common issues:

Listening and communication: The person you care for may not want to ask for what they need out of fear of being a burden. One suggestion is to set aside a block of time during each visit or day when you can give the person your full attention.
Identifying needs: The person you care for may be reluctant to share what they need. One solution experts offer is to respectfully ask the person about what they need or would like, rather than assuming you know.
Privacy: People receiving care from family members can feel embarrassed at needing help dressing or bathing. Experts suggest switching to a professional manner when helping with such tasks and focusing on being matter-of-fact and detached can feel less intrusive.

Related Health Effects

Caregivers tend to have a higher risk of physical and mental health issues, sleep problems, and chronic conditions such as high blood pressure. They are even at an increased risk of premature death.

Caregivers are less likely than others to get preventive health services, like annual checkups, and to practice regular self-care.

Family caregivers make a lot of sacrifices. Some even quit their jobs to care for the person full time. Costs such as travel expenses, paying bills, and buying household essentials can add up to create a significant financial burden for caregivers.

It is not always obvious when a caregiver needs help. Watch for these signs of caregiver stress:

Feeling exhausted, overwhelmed, or anxious
Becoming easily angered or impatient
Feeling lonely or disconnected from others
Having trouble sleeping or not getting enough sleep
Feeling sad or hopeless, or losing interest in activities you used to enjoy
Having frequent headaches, pain, or other physical problems
Not having enough time to exercise or prepare healthy food for yourself
Skipping showers or other personal care tasks such as brushing your teeth
Misusing alcohol or drugs, including prescription medicines

Signs of anxiety include hot and cold flashes, fast heartbeat, chest tightness, snowballing worries, or obsessive thinking. Signs of depression can include loss of interest in activities, withdrawal from family and friends, changes in weight or appetite, trouble sleeping, feelings of worthlessness, and increased sadness.

Long-distance caregivers face their own kinds of stress. Caregivers who live far away may feel guilty about not being closer, not doing enough, or not having enough time with the person. They may even feel jealous of those who live closer and can do more.

Don’t wait until you are completely overwhelmed. Learn what your own warning signs are and take steps to minimize sources of stress where possible.

Living With Caregiving

Asking for Help

Accepting help from others isn’t always easy. You may worry about being a burden, or you may feel uncomfortable admitting that you can’t do it all yourself. But many caregivers later say they did too much on their own, and they wished they had asked for more support from family and friends.

Here are some tips for asking for help:

Ask for small things at first, if that makes it easier for you.
If you aren’t comfortable asking face-to-face, send a text or email with your request.
Consider a person’s skills and interests when thinking about how they could help.
Be prepared with a list of things that need to be done and let the other person choose what they’d like to do.
If someone offers to help, practice saying, “Thanks for asking. Here’s what you can do.”
Be honest about what you need and what you don’t need.
Be prepared for some people to say “no,” and don’t take it personally.

Taking Care of Yourself

Taking care of yourself is one of the most important things you can do as a caregiver. If you can find small ways to lower your stress and boost your mood, you’ll have more strength and stamina to take care of someone else.

Here are some steps that may help:

Be active: Find something active that you enjoy, such as walking, dancing, gardening, or playing with a pet. Even short periods of exercise can be beneficial.
Eat well: Work on having a well-balanced diet that includes a variety of healthy foods.
Prioritize sleep: Aim to get 7–9 hours of sleep each night. Develop a relaxing bedtime routine to make it easier to fall asleep.
Reduce stress: Experiment with relaxation techniques like meditation, tai chi, or yoga. Download a smartphone app with guided meditations or relaxing music. Many of these apps are free.
Make time to relax: Carve out time each week to do something you enjoy that has nothing to do with caregiving. It can be as simple as watching a favorite TV show, reading a magazine, or working on a hobby.
Keep up with your own health: Make that doctor’s appointment you’ve been putting off. Tell your doctor that you’re a caregiver. They may be able to suggest resources online or in your community.
Be kind to yourself: You don’t have to pretend to be cheerful all the time. Feelings of sadness, frustration, and guilt are normal and understandable.

Support Groups

Caregiver support groups are made up of people who, like you, are dealing with the demands and challenges of caring for another. Support groups are helpful because they can provide both a sense of community and tips for managing the everyday issues that caregiving presents.

Good support groups offer:

A caring atmosphere with trust between group members
A clear structure and purpose
Agreed-upon group rules, including confidentiality
Help in dealing with family members
Information and tools to help you
Advice about what to expect
A safe place to share true feelings
A way to make new friends

Where to find a support group:

Referrals from your health care provider
Social work department at hospitals
Adult day care centers
Volunteer organizations
Faith communities
Local senior center
Local Area Agency on Aging

Your Emotional Health

Caring for a person with a serious illness takes a lot of time and effort. You may feel discouraged, sad, lonely, frustrated, confused, or angry. These feelings are normal.

Here are some things you can say to yourself that might help you feel better:

I’m doing the best I can.
What I’m doing would be hard for anyone.
I’m not perfect, and that’s okay.
I can’t control everything that happens.
Sometimes, I just need to do what works for right now.

Some caregivers find that going to a church, temple, or mosque helps them cope with the daily demands placed on them. For others, simply having a sense that larger forces are at work in the world helps them find a sense of balance and peace.

Mental health professionals and social workers can help you deal with stress you may be feeling. They can help you understand difficult feelings, such as anger, sadness, or feeling out of control. They can also help you make plans for unexpected or sudden events.

If you are experiencing depression or have thoughts of harming yourself, immediate help is available. Call or text the 24-hour 988 Suicide & Crisis Lifeline at 988 or 800-273-TALK (800-273-8255). For TTY, use your preferred relay service or dial 711 then 988.

Find Clinical Trials

Clinical trials uncover better ways to prevent, diagnose, treat, and understand diseases and conditions. To ensure results apply to everyone, volunteers of all ages, sexes, and backgrounds, including both healthy individuals and those with specific medical conditions, are needed. Find clinical trials on caregiving.

The Clinical Trials Finder on Alzheimers.gov includes studies and trials for caregivers.

Find Support

Because you might need to take a break, travel, or just need a day to yourself, it is a good idea to set up a care management team so that caregiving may continue in your absence or to supplement your caregiving responsibilities.

Sharing Caregiving Responsibilities

Caring for a person often requires teamwork with family, friends, or formal caregivers. While a person who lives nearby might take on most of the everyday responsibilities, people who live farther away can also play an important role in coordinating care.

Splitting caregiving responsibilities is a multistep process. Many find that the best first step is to name a primary caregiver. This is the person who takes on most of the everyday caregiving responsibilities. Even if a primary caregiver is not needed immediately, identifying someone now will allow that person to step in right away if there is a crisis.

When deciding how to share caregiving responsibilities, consider these questions:

Who is best at finding information and keeping people up to date on changing conditions?
Who is most comfortable using email, text messages, and other forms of technology?
Who do people call when they need emotional support and someone to talk to?
Who is most confident about speaking with medical staff and conveying information to others?
Who lives close enough to assist with day-to-day tasks, such as grocery shopping, cooking, and cleaning?
Who is good with numbers and could take charge of tasks such as paying bills and reviewing insurance policies?

Over time, these decisions may need to be revised.

Respite Care

Respite care provides short-term relief for primary caregivers, giving them time to rest, travel, or spend time with other family and friends. The care may last anywhere from a few hours to several weeks at a time. Respite care can take place at home, in a health care facility, or at an adult day care center.

Ways to ensure that you have respite care:

Find a secondary caregiver to be a backup so you can take a break, too.
Look for local programs for senior support in your area.
If you are able, look into options for support with other household duties, such as meal support or meal delivery services, cleaning services, laundry services, and lawn services.
Prepare in advance if you need to travel. Find a backup caregiver to support your loved one while you are away. Meet in advance to review your loved one’s care plan. This should include emergency numbers, medicine lists, power of attorney details, and any other medical documents.

Costs to know:

Respite services charge by the hour or by the number of days or weeks that services are provided.
For a person receiving hospice care, Medicare will cover most of the cost for up to five consecutive days of respite care in a hospital or skilled nursing facility.
Medicaid also may provide payment assistance.
Most private health insurance plans do not cover the costs of respite care.

To find respite care programs in your area, visit the ARCH National Respite Locator Service.

Home Health Care Services

Home health care services may be available to help older people with many aspects of health care, such as medicines, wound care, medical equipment, and physical therapy. The provider may come for a few hours each day or stay 24/7.

Home health care services may include in-home nursing care to help a person recover from surgery, an accident, or an illness. In-home health services can also help manage long-lasting (chronic) conditions such as diabetes.

Costs to know:

Home health services charge by the hour.
Medicare has limited coverage of home health service costs; the services must be short-term and provided by agencies certified by Medicare.
Medicaid also provides coverage, but these benefits vary by state.
Most private health insurance plans do not cover these costs.

To find a home health care service, ask your doctor or other health care professional about good options in your area. You can also use this online tool to find and compare Medicare-certified home health agencies.

Adult Day Care Services

Adult day care services can provide a much-needed break for caregivers at home. These programs provide a safe environment for older adults with trained staff in a nearby facility. An adult day care center may offer social activities, exercise, meals, personal care, and basic health care services. Some will provide transportation.

Costs to know

Adult day care tends to be less expensive than in-home or nursing home care.
Medicare will not pay for adult day care, but Medicaid and other government programs may provide coverage.
Most private health insurance plans don’t cover the costs of adult day care.

To find an adult day care center in your area, contact the National Adult Day Services Association online or by calling 877-745-1440.

Geriatric Care Managers

A geriatric care manager, also called an aging life care expert, is usually a licensed nurse or social worker who specializes in geriatrics (health care for older adults). Geriatric care managers work with older adults and their families to identify needs, make a care plan, and find services in the community. They can be especially helpful when a caregiver lives far away.

Geriatric care managers can:

Discuss difficult topics and complex issues
Make home visits and suggest services
Address emotional concerns and provide support
Make short- and long-term plans
Evaluate in-home care needs
Coordinate medical services
Refer to other care specialists
Evaluate potential living arrangements
Provide stress relief to caregivers

Costs to know:

The cost of an initial evaluation varies and may be expensive.
Geriatric care managers charge by the hour.
Medicare and Medicaid do not pay for this service.
Most people must pay for some or all of this service themselves.

To locate a geriatric care manager, contact the Aging Life Care Association online or by calling 520-881-8008.

Mental Health Professionals

Counselors can help older adults and caregivers deal with stress they may be feeling. They can help you understand your feelings, such as anger, sadness, or feeling out of control and overwhelmed. Counselors can also help develop plans for unexpected or sudden events.

Professionals who provide mental health counseling include psychologists, therapists, and social workers, among others. Counseling can occur in-person at an office, at a person’s home, or in a community setting. Virtual counseling sessions, which take place remotely on a computer or smartphone, are becoming more common.

Costs to know:

Professional mental health counselors charge by the hour, and rates vary widely.
Medicare or Medicaid may cover some of the costs.
Some private health insurance companies will cover some of the costs.

Check with your health insurance provider to find out which counselors and services are in your plan’s network.

Nutrition, Food, and Meal Services

Maybe you’re worried that an older person isn’t eating nutritious meals or is eating alone too often. You might suggest they share cooking duties with a friend or have a potluck dinner with a group of neighbors. Find out if their religious community or a local senior center serves meals. Is it hard for the person to get out? Plan to bring them a healthy meal a few times a week, ask a neighbor or friend to help out, or consider a meal delivery program.

Meal delivery programs bring healthy, nutritious meals to a person’s home on a daily or weekly basis. Many of these services offer options for special diets and can handle dietary restrictions. However, the delivery staff do not assist with making meals at home or feeding the person.

What to know about costs:

In some cases, a person must qualify for the service based on certain guidelines. These can include age, mobility, and economic need.
Medicare does not generally cover meal delivery services, although under certain circumstances, it will provide this benefit for a short time. Medicaid may pay for some meal delivery services if the person is eligible.
Some meal delivery services do not require payment. Others charge a fee or accept donations.

To find a meal delivery service in your area, contact Meals on Wheels America online or by calling 888-998-6325. Some local governments provide low- or no-cost meals to older adults. Call or check their websites for details. Your health care provider or local senior center may also be able to recommend a service.

Additionally, there are many subscription services that deliver ready-to-eat meals and meal kits. These can be arranged online and generally involve a regular weekly or monthly charge.

Transportation services

If an older person can no longer drive, neighbors or volunteers may be able to help take them to the doctor’s office or run errands, such as grocery shopping. Transportation services can also help. They drive people to and from medical appointments, shopping centers, and other places in the community.

Various state and local agencies, nonprofit organizations, and companies offer transportation services for older adults. Some senior housing complexes and community groups also offer rides. Public transit agencies often have discounted fares and other services for older adults and people with disabilities. Many communities also have taxis, ride-sharing services, and other transportation resources available. If needed, you can request a vehicle that will accommodate a wheelchair, walker, or electric scooter.

What to know about costs:

Some transportation services are free. These include programs from state and local governments and some nonprofit organizations.
Other services, such as taxis, car services, and ride-sharing companies, charge a fee for transportation. Some offer discounts for older adults.
For people who do not have access to a ride, Medicaid provides transportation for emergency medical care and for doctor’s appointments. Medicare provides transportation via ambulance for health care emergencies and limited nonemergencies (such as a ride to a dialysis facility).

End of Life Care

Not all end-of-life experiences are alike. Death can come suddenly, or a person may linger in a near-death state for days. For some older adults at the end of life, the body weakens while the mind stays clear. Others remain physically strong while cognitive function declines. It's common to wonder what happens when someone is dying. You may want to know how to provide comfort, what to say, or what to do. Always remember to check with the person’s health care team to make sure these suggestions are appropriate for the situation.

Paying for Long-Term Care

Many caregivers and older adults worry about the costs of long-term care. These expenses can use up a significant part of monthly income, even for people who thought they had saved enough. How people pay for long-term care depends on their financial situation and the kinds of services they use.

Some people believe that their current health or disability insurance will pay for their long-term care needs, but most of these insurance policies include limited, if any, long-term care benefits. In most cases, people must find other means of paying for long-term care. They may rely on a variety of payment sources, including personal funds, federal and state government programs, and private financing options. Read on to find out more about each of these options.

Personal Funds

Many older adults pay for part or all long-term care with their own money, also known as personal or “out of pocket” funds. They may use personal savings, a pension or other retirement fund, income from investments, or proceeds from the sale of a home.

Initially, family and friends often provide personal care and other services, such as transportation, for free. But as a person’s needs increase, paid services may be needed.

Government Programs

Older adults may be eligible for some government health care benefits. Caregivers can help by learning more about possible sources of financial help and assisting older adults in applying for aid as appropriate.

Several federal and state programs provide help with health care-related costs. Over time, the benefits and eligibility requirements of these programs can change, and some benefits differ from state to state. Check with the individual programs directly for the most recent information.

Many states offer some form of pay for family caregivers, but the laws, eligibility, and funding for this support vary by state. The most common source of assistance is Medicaid, which offers several state-based programs to people who are eligible based on income or disability. These programs include home- and community-based services, adult foster care, and Medicaid personal care services. Contact your state Medicaid agency to learn more.

Veterans and people living with certain diseases may also be eligible for financial assistance through federal and state agencies or private organizations. Information is available by visiting the Eldercare Locator.

Private Financing Options

In addition to personal funds and government programs, there are several private payment options, including long-term care insurance, reverse mortgages, certain life insurance policies, annuities, and trusts. Which option is best depends on many factors, including the person’s age, health status, and financial situation.

LongTermCare.gov

LongTermCare.gov provides information about long-term care needs and available benefits. Visit the Costs & Who Pays page to learn more about the costs of long-term care, who pays for services, what is covered by insurance, and options for paying on your own.

Community Support

Note: This resource list is for informational purposes only. It is not comprehensive, and an organization’s inclusion does not constitute an endorsement by NIH. 

Research Information

The National Institutes of Health (NIH) is the largest public funder of biomedical research in the world. NIH invests most of its budget in medical research seeking to enhance life and to reduce illness and disability. NIH-funded research has led to breakthroughs and new treatments helping people live longer, healthier lives, and building the research foundation that drives discovery. 

The National Institutes of Health supports research to test strategies to reduce stress and improve overall well-being for caregivers.

Find NIH-funded research projects using NIH RePORTER, a searchable database of current and past research projects supported by NIH and other federal agencies. 