Informal or unpaid caregivers (family members or friends) are the backbone of long-term care provided in people’s homes. While some aspects of caregiving may be rewarding, caregivers can also be at increased risk for negative health consequences. These may include stress, depression, difficulty maintaining a healthy lifestyle, and staying up to date on recommended clinical preventive services.

Who are caregivers?

Caregivers provide care to people who need some degree of ongoing assistance with everyday tasks on a regular or daily basis. The recipients of care can live either in residential or institutional settings, range from children to older adults, and have chronic illnesses or disabling conditions.

Approximately 25% of U.S. adults 18 years of age and older reported providing care or assistance to a person with a long-term illness or disability in the past 30 days, according to 2009 data from CDC’s state-based Behavioral Risk Factor Surveillance System. This is termed “informal or unpaid care” because it is provided by family or friends rather than by paid caregivers. The one year value of this unpaid caregiver activity was estimated as $450 million dollars in 2009.

What is the impact of providing care for an older adult?

Informal or unpaid caregiving has been associated with:

• Elevated levels of depression and anxiety
• Higher use of psychoactive medications
• Worse self-reported physical health
• Compromised immune function
• Increased risk of early death

Over half (53%) of caregivers indicate that a decline in their health compromises their ability to provide care.

Furthermore, caregivers and their families often experience economic hardships through lost wages and additional medical expenses. In 2009, more than one in four (27%) of caregivers of adults reported a moderate to high degree of financial hardship as a result of caregiving.

What are the positive aspects of caregiving?

For many people, providing care for a family member with a chronic illness or a disabling condition can provide:

• A sense of fulfillment
• Establishment of extended social networks or friendship groups associated with caregiving
• Feeling needed and useful
• Learning something about one’s self, others, and the meaning of life

More caregivers will be needed

As the number of older Americans increases, so will the number of caregivers needed to provide care. The number of people 65 years old and older is expected to double between 2000 and 2030. It is expected that there will be 71 million people aged 65 years old and older when all baby boomers are at least 65 years old in 2030.

Currently, there are 7 potential family caregivers per adult. By 2030, there will be only 4 potential family caregivers per adult.

How to Develop a Care Plan

• The plan should include information about:
• health conditions
• medications
• healthcare providers
• emergency contacts
• caregiver resources
• Having and maintaining a care plan will help you balance both your life and that of the person you are providing care

Caregiving can be overwhelming, especially when you’re starting out. Take a deep breath! Then tackle one task at a time.

First, assess your loved one’s needs. What types of help are needed? Ask family members and friends to share tasks. Look for resources in your community, such as home health care or adult day care centers. The Eldercare Locator can help you find in-home help; transportation; resources to install ramps, grab bars, or other home modifications; and other resources in your area. It can also help you learn about options for paying for care.

Developing and maintaining a care plan will help you balance both your life and that of the person to whom you are providing care!

Are you a caregiver for someone with Alzheimer’s disease, dementia, or another chronic health condition? Caregivers are often family members or friends of a person who is in need of care. Caregivers may manage everything from medications and getting dressed in the morning to doctor appointments, social events, and meals.

What is a care plan?

A care plan is a form that summarizes a person’s health conditions and current treatments for their care. The plan should include information about:

• Health conditions
• Medications
• Healthcare providers
• Emergency contacts
• Caregiver resources

You can ask the doctor of the person you care for to help you complete the care plan. At that time, you can also discuss advanced care plan options such as what follow-up care is necessary, end of life care options, and resources that are available to help make things easier for you as a caregiver. Try to update the care plan every year or if the one you care for has a change in health or medications to keep the care plan current, and remember to respect the care recipient’s privacy after reviewing their personal information.

How do you develop a care plan?

1. Start a conversation about care planning with the person you take care of. You can use the “My Care Plan” [1.48 MB] form to help start the conversation. If your care recipient isn’t able to provide input, anyone who has significant interaction with the care recipient (a family member or home nurse aide) can help complete the form.
2. Talk to the doctor of the person you care for or another health care provider. Use the “My Care Plan” [1.48 MB form as a starting point for your discussion. A physician can review the form you started and help to complete it, especially if there is a conversation about advanced care planning.
3. Ask about what care options are relevant to the person you care for. Medicare covers appointments that are scheduled to manage chronic conditions and for discussing advanced care plans. Beginning in January of 2017, Medicare covers care planning appointments specifically for people with Alzheimer’s, other dementias, memory problems, or suspected cognitive impairment.
4. Discuss any needs you have as a caregiver. 84% of caregivers report they could use more information and help on caregiving topics especially related to safety at home, dealing with stress, and managing their care recipient’s challenging behaviors. Caregivers of people with dementia or Alzheimer’s are particularly at greater risk for anxiety, depression, and lower quality of life compared to caregivers of people with other chronic conditions.

What are the benefits of a care plan?

• Care plans can reduce emergency room visits, hospitalizations, and improve overall medical management for people with a chronic health condition, like Alzheimer’s disease resulting in better quality of life for all care recipients.
• Care plans can provide supportive resources for you, the caregiver, to continue leading a healthy life of your own.

It can be helpful to know where your loved one’s important papers are stored so you can find them when you need them.

Another tip: Get formal permission from your loved one to talk with his or her lawyer, bank, and healthcare providers in advance. Many of these institutions have their own forms that must be signed with your loved one’s consent.

There are many different types of legal documents that can help you plan how your affairs will be handled in the future. Many of these documents have names that sound alike, so make sure you are getting the documents you want. Also, State laws vary, so find out about the rules, requirements, and forms used in your State.

Wills and trusts let you name the person you want your money and property to go to after you die.

Advance directives let you make arrangements for your care if you become sick. Two common types of advance directives are:

• A living will gives you a say in your health care if you become too sick to make your wishes known. In a living will, you can state what kind of care you do or don't want. This can make it easier for family members to make tough healthcare decisions for you.
• A durable power of attorney for health care lets you name the person you want to make medical decisions for you if you can't make them yourself. Make sure the person you name is willing to make those decisions for you.

For legal matters, there are ways to give someone you trust the power to act in your place.

• A general power of attorney lets you give someone else the authority to act on your behalf, but this power will end if you are unable to make your own decisions.
• A durable power of attorney allows you to name someone to act on your behalf for any legal task, but it stays in place if you become unable to make your own decisions.

If you live an hour or more away from a person who needs care, you are a long-distance caregiver. There are a number of jobs you can take on even if you live far away. You can arrange and coordinate care in the person’s home or long-term care facility, help with finances, organize legal and financial paperwork, or help make the home safer. You can also research local resources and learn how to make the most of your limited time when you visit an older relative far away.

You can also hire a geriatric care manager—a specially trained professional who can help your family identify needs and make a plan to meet those needs.

Whatever kind of help your loved one needs — for example, with personal care, transportation, or meal preparation — it may be available in your community. You can get more information from your local Area Agency on Aging, local and state offices on aging or social services, tribal organization, or nearby senior center.

The decision about whether your parents should move is often tricky and emotional. Each family will have its own reasons for wanting (or not wanting) to take such a step.

One family may decide a move is right because the parents can no longer manage the home. For another family, the need for hands-on care in a long-term care facility motivates a change.

In the case of long-distance caregivers, the notion of moving can seem like a solution to the problem of not being close enough to help. For some caregivers, moving a sick or aging parent to their own home or community can be a viable alternative. Some families decide to have an adult child move back to the parent’s home to become the primary caregiver.

Keep in mind that leaving a home, community, and familiar medical care can be very disruptive and difficult for the older parent, especially if they are not enthusiastic about the change. You might first want to explore what services are available in your parents’ community to help them in their home—including home health care, housekeeping, personal care, and transportation services.

Older adults and their families have some options when it comes to deciding where to live, but these choices can be limited by factors such as illness, ability to perform activities of daily living (for example, eating, bathing, using the toilet, dressing, walking, and moving from bed to chair), financial resources, and personal preferences.

Making a decision that is best for your parent—and making that decision with your parent—can be difficult. Try to learn as much as you can about possible housing options.

Older adults, or those with serious illness, can choose to:

• Stay in their own home or move to a smaller one
• Move to an assisted-living facility
• Move to a long-term care facility
• Move in with a family member

Some families find a conference call is a good way to talk together about the pros and cons of each option. The goal of this call is to come up with a plan that works for everyone, especially your parent. If the decision involves a move for your mom or dad, you could, even from a distance, offer to arrange tours of some places for their consideration.

Experts advise families to think carefully before moving an aging adult into an adult child’s home. There are a lot of questions to consider, for example:

• Is there space in your home?
• Is someone around to help the older person during the whole day?
• What are your parents able to do for themselves?
• What personal care are you willing and able to provide—moving your parent from a chair to a bed or toilet, changing adult diapers, or using a feeding tube, for example?
• What kinds of home care services are available in your community?
• What kind of specialized medical care is available nearby?

Sometimes, an older person you care for can no longer live safely in his or her own home. Some may move in with family or friends. People who require lots of help might move to a residential facility, such as an assisted living facility, nursing home, or continuing care retirement community. But how can you find a place that will take good care of the older person you love and meet his or her needs? If possible, it’s best to plan ahead for long-term care.

Board and care homes, also called residential care facilities or group homes, are small private facilities, usually with 20 or fewer residents. Rooms may be private or shared. Residents receive personal care and meals and have staff available around the clock. Nursing and medical care usually are not provided on site.

Assisted living is for people who need help with daily care, but not as much help as a nursing home provides. Assisted living facilities range in size from as few as 25 residents to 120 or more. Typically, a few "levels of care" are offered, with residents paying more for higher levels of care.

Assisted living residents usually live in their own apartments or rooms and share common areas. They have access to many services, including up to three meals a day; assistance with personal care; help with medications, housekeeping, and laundry; 24-hour supervision, security, and on-site staff; and social and recreational activities. Exact arrangements vary from state to state.

Nursing homes, also called skilled nursing facilities, provide a wide range of health and personal care services. Their services focus on medical care more than most assisted living facilities. These services typically include nursing care, 24-hour supervision, three meals a day, and assistance with everyday activities. Rehabilitation services, such as physical, occupational, and speech therapy, are also available.

Some people stay at a nursing home for a short time after being in the hospital. After they recover, they go home. However, most nursing home residents live there permanently because they have ongoing physical or mental conditions that require constant care and supervision.

Continuing care retirement communities (CCRCs), also called life care communities, offer different levels of service in one location. Many of them offer independent housing (houses or apartments), assisted living, and skilled nursing care all on one campus. Healthcare services and recreation programs are also provided.

In a CCRC, where you live depends on the level of service you need. People who can no longer live independently move to the assisted living facility or sometimes receive home care in their independent living unit. If necessary, they can enter the CCRC's nursing home.

There are many sources of information about facility-based long-term care. A good place to start is the Eldercare Locator at 1-800-677-1116 or https://eldercare.acl.gov. You can also call your local Area Agency on Aging, Aging and Disability Resource Center, department of human services or aging, or a social service agency.

Many caregivers and older adults worry about the cost of long-term care. These expenses can use up a significant part of monthly income, even for families 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. Often, they rely on a variety of payment sources, including personal funds, federal and state government programs, and private financing options. Veterans may also be eligible for assistance through the U.S. Department of Veterans Affairs.

Family caregivers make a lot of sacrifices to care for older or sick relatives. Some even quit their jobs to care for a loved one full-time. Your state may offer help to certain caregivers. Programs vary, so contact your local Area Agency on Aging to find out what programs are available in your neighborhood. Veterans, Medicaid recipients, and people living with certain diseases may also be eligible for financial assistance through federal, state, and private organizations.

Talk with the person’s doctors and social workers about how his or her health might make it harder to get around and take care of themselves at home. Local and state offices on aging and social service agencies may be able to provide or tell you about services to make the home easier and safer to live in. Think about things like ramps at the front and back doors, grab bars in the shower and next to the toilet, and handles on doors and faucets that are easier to use.

Many older adults find it helpful to bring a family member or friend with them to the doctor’s office. Just remember to get formal permission from your relative to speak with his or her health care providers. Before the appointment, you can help your relative prepare for the visit, write down concerns, and go over what to say to the doctor. During the visit, you can take notes. After the appointment, review what the doctor said to help your loved one remember.

Working with doctors and other healthcare professionals can be an important part of being a caregiver. Some things caregivers may find especially helpful to discuss are: what to expect in the future, sources of information and support, community services, and ways they can maintain their own well-being.

If you go with the person you care for to see his or her doctor, here are a few tips that will help you be an ally and an advocate:

• Bring a list of questions, starting with what is most important to you and the person, and take notes on what the doctor recommends. Ask the person in advance how you can be most helpful during the visit. Both the questions and the notes you write down can be helpful later, either to give information to another caregiver or family member, or to remind the patient what the doctor said.
• Before the appointment, ask the person and the other caregivers if they have any questions or concerns they would like you to bring up.
• Bring a list of ALL medicines and dietary supplements the person is taking, both prescription and over-the-counter, and include the dosage and schedule. If he or she sees several different doctors, one may not necessarily know what another has prescribed.
• When the doctor asks a question, let the person answer unless you have been asked to do so.
• It’s easy to get into a two-way conversation between the doctor and yourself—try not to do this. Always include both the person you care for and the doctor when you talk.
• Respect the person’s privacy, and leave the room when necessary.
• If you live out of town, talk to the doctor about how you can keep up to date on the person’s health since you live out of town.
• Ask the doctor to recommend helpful community resources.
• Larger medical practices, hospitals, and nursing homes may have a social worker on staff. The social worker may have valuable suggestions about community resources and other information.

Watch for Signs of Depression and Share with Healthcare Professionals

If you are worried that the person might be depressed, you might want to discuss this with the doctor before the appointment. Depression is not a normal part of aging. Emotions like sadness, grief, and temporary “blue” moods are normal, but continuing depression that interferes with daily living is not okay.

Even some health professionals seem to think depression is a normal response to the illnesses and other problems that can happen as we grow older. Make sure the doctor is taking action in response to your concerns.

Taking care of a sick family member is hard work. But taking care of yourself is important too. When you feel overwhelmed and exhausted, you can’t be a good caregiver to your loved one. All caregivers need a break from time to time. Take a walk, talk with friends, or get some sleep. Eating healthy foods and staying physically active will help you stay healthy. Joining a caregiver support group — either in your community or online — can help you feel less alone and gives you a chance to exchange stories and ideas. Don’t be afraid to ask for help from family members or friends. Respite care services may also be an option.

Respite care provides short-term relief for primary caregivers. It can be arranged for just an afternoon or for several days or weeks. Care can be provided at home, in a healthcare facility, or at an adult day center.

Respite Care Costs

Respite services charge by the hour or by the number of days or weeks that services are provided. Most insurance plans do not cover these costs. You must pay all costs not covered by insurance or other funding sources. Medicare will cover most of the cost of up to 5 days in a row of respite care in a hospital or skilled nursing facility for a person receiving hospice care. Medicaid also may offer assistance.

Abuse can happen to anyone, no matter the person’s age, sex, race, religion, or ethnic background. Abuse can be physical, emotional, financial, or sexual, and it can happen at a facility, at a family member’s house, or at home.

From a distance, it can be hard to assess the quality of your family member’s caregivers. Ideally, if there is a primary caregiver on the scene, he or she can keep tabs on how things are going.

Perhaps you have already identified friends or neighbors who can stop in unannounced to be your eyes and ears. Sometimes, a geriatric care manager can help.

You can stay in touch with your family member by phone and take note of any comments or mood changes that might indicate neglect or mistreatment. These can happen in any setting, at any socioeconomic level. Abuse can take many forms, including domestic violence, emotional abuse, financial abuse, theft, and neglect.

Sometimes the abuser is a hired caregiver, but he or she can also be someone familiar. Stress can take a toll when adult children are caring for aging parents, or when an older person is caring for an aging spouse or sibling. In some families, abuse continues a long-standing family pattern. In others, the older adult’s need for constant care can cause a caregiver to lash out verbally or physically. In some cases, especially in the middle to late stages of Alzheimer’s disease, the older adult may become difficult to manage and physically aggressive, causing harm to the caregiver. This might cause a caregiver to respond angrily.

But no matter who is the abuser or what is the cause, abuse and neglect are never acceptable responses. If you feel that your family member is in physical danger, contact the authorities right away. If you suspect abuse, but do not feel there is an immediate risk, talk to someone who can act on your behalf: your parent’s doctor, for instance, or your contact at a home health agency. Suspected abuse must be reported to adult protective services.