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. If you live far away from the person who needs care, you may need to find new ways to stay in touch. This article can help you figure out where to start as a caregiver.

What is caregiving?

Caregiving involves helping another person with everyday activities and tasks. Many caregivers are family members, friends, or neighbors. The kinds of activities that a caregiver may assist with include:

• Personal care, such as dressing, bathing, grooming, using the toilet, and brushing teeth
• Household tasks, such as shopping, laundry, and cleaning
• Preparing food, feeding, and monitoring dietary restrictions
• Health care, including talking to doctors, coordinating medical appointments, and keeping track of medications
• Transportation, such as car rides to appointments
• Financial and legal matters, such as paying bills and organizing important documents

New to caregiving? Here’s what to do first

Caregiving can be overwhelming, especially at the beginning. Try to tackle one task at a time. The following offers some ways to get started.

Find out as much as you can 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.

Determine where to get help

Consider asking family members and friends to share caregiving tasks. Read more about sharing caregiving responsibilities with family members.

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, which are government insurance programs, will sometimes pay for caregiver training.

You can also review these worksheets to help you coordinate care and keep track of your caregiving responsibilities and needs.

How can you help with caregiving when you live far away?

Many people live far away from their family or friends who need help. If you don’t live nearby, you can still provide support and assistance as a long-distance caregiver.

These are a few ways to begin:

• 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.
• Find out more about available resources in the older person’s community. For suggestions, search the Eldercare Locator or call 800-677-1116.
• 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.

Find more information about long-distance caregiving, including how you can help, ways to stay in touch, and resources for caregivers who live far away.

To learn more, please visit https://www.nia.nih.gov/health/caregiving/getting-started-caregiving.

Scientists continue to make great strides in identifying potential new ways to diagnose, treat, and even prevent Alzheimer’s disease and related dementias. These medical advances would not be possible without the participation of a diverse range of clinical trial and study volunteers.

When you choose to participate in research, you become an important part of scientific discovery. Your contribution may also help your family, community, and future generations lead healthier lives.

Why participate in Alzheimer’s and related dementias research?

There are many reasons you might choose to participate in Alzheimer’s and related dementias research. You may want to:

• Help people, including family members, who may be at risk for developing Alzheimer’s or a related dementia in the future
• Feel like you’re playing a more active role in your health
• Learn more about dementia and your health, including symptoms and risk factors
• Find out about resources, such as educational materials and support groups

Who can participate in dementia research?

Nearly everyone can participate in Alzheimer’s and related dementias research. To ensure that prevention strategies and treatments help as many people as possible, volunteers are needed from a wide variety of communities and backgrounds. You do not need to be an older adult or be living with dementia to participate in clinical trials and studies.

Volunteers include:

• Participants of different sexes, races, ethnicities, and life experiences
• Both younger and older individuals
• People diagnosed with Alzheimer’s or a related dementia, such as Lewy body dementia, vascular dementia, frontotemporal disorders, or limbic-predominant age-related TDP-43 encephalopathy (LATE)
• People with symptoms of dementia who have no diagnosis or an uncertain diagnosis
• People who may have an increased risk of Alzheimer’s or a related dementia, given their family history, genetic makeup, or biomarkers, which are measures that could signal very early stages of disease
• People living with Down syndrome, who are at higher risk for Alzheimer’s
• People without memory loss or dementia
• Caregivers of people living with dementia

How do I know if a clinical trial or study is a good fit for me?

Are you looking for something short-term or research that follows participants over a longer time? Do you want to be part of in-person research, or would you be more interested in taking online surveys? Many different types of clinical trials and studies are available, and there are likely options that would work for you.

Researchers carefully screen all volunteers to ensure they are appropriate for particular studies. The screening may involve cognitive and physical tests, and you may be asked questions about your health, medications, and family history. Researchers also need to make certain that people are a good fit for safety reasons. For example, if a study involves MRI, the research team will ask questions to confirm that type of scan is safe for you.

To take part in a clinical trial or study, you may need to have certain characteristics called inclusion criteria. These criteria might include age, stage of dementia, sex, genetic profile, and whether or not you have a study partner who can accompany you.

Some people are unable to participate in certain clinical trials because they have particular characteristics, which are called exclusion criteria. These criteria can include factors such as specific health conditions or medications that could interfere with the study. Most of the time, you can only participate in one research study at a time.

Learn more about how researchers decide who participates in clinical research studies.

What new approaches are researchers exploring?

When people think of research, they often think of a clinical trial that is testing a new drug. But there are many types of research that need participants. Here are some of the areas related to Alzheimer’s and related dementias that researchers are exploring:

• Medications. Drug trials evaluate the safety and effectiveness of medications and therapies designed to help prevent disease or slow disease progression.
• Non-medication strategies. These studies evaluate the safety and effectiveness of lifestyle and behavioral changes, such as exercise, changes in diet, or brain training, to help prevent disease, slow disease progression, or improve quality of life for people with dementia.
• Diagnostic tools. New approaches, such as a blood test or a new type of brain scan, are tested to see whether they can accurately diagnose Alzheimer’s or a related dementia.
• Medical devices. Medical devices are instruments, tools, and other equipment that can monitor and manage disease symptoms. Examples include electronic devices that directly stimulate the brain and digital assistants to help with everyday tasks. Studies of medical devices determine whether they are safe and effective.
• Treatments for changes in mood and personality. These studies test medication and non-medication strategies to treat common behavioral symptoms of Alzheimer’s, including sleeplessness, wandering, agitation, anxiety, aggression, restlessness, and depression.
• Support for caregivers. Caring for someone with dementia can be challenging. Researchers are testing ways to reduce stress and increase overall well-being for caregivers and quality of life for people living with dementia.
• Attitudes and knowledge. Some studies are designed to learn people’s views about dementia, caregiving, or particular treatments, or to test educational tools to increase people’s knowledge.

How can I learn about dementia research near me?

Looking for clinical research about Alzheimer’s or a related dementia? Talk to your health care provider and use online resources to:

• Sign up for a registry or a matching service that may invite you to participate in studies or trials when they are available in your area.
• Contact one of the NIA-funded Alzheimer’s Disease Research Centers near you. They offer information about diagnosis and treatment, research participation opportunities, and support groups.
• Search the Alzheimers.gov Clinical Trials Finder.
• Explore clinical trials and studies sponsored by NIA.

After you find one or more clinical trials or studies that you are interested in, the next step is for you or your doctor to contact the research staff and ask questions. You can usually find contact information in the description of the study.

Let your health care provider know if you are thinking about joining a clinical trial or study. Your provider may want to talk to the research team to ensure the research is safe for you and to help coordinate your care.

How do researchers ensure that someone with dementia understands and agrees to a study?

Typically, before someone decides to participate in a clinical trial or study, research coordinators will go over all the key details with that person. If the volunteer understands and agrees to participate in the trial, they sign a form. During the study, the researchers will continue to provide information to the participant and answer any questions. This process of going over the research details, signing the form, and having ongoing communication is called informed consent.

Informed consent can work differently with research participants who have dementia. While some people with dementia can still make decisions for themselves about participating in research, others cannot. The “decision-making capacity” of a person living with dementia is determined by their health care provider or someone from the research team. If the person cannot provide informed consent because of cognitive impairment, an authorized legal representative or health care proxy may give permission for the person to participate.

After the research is explained, the person or their legal representative will be asked to sign the informed consent form, which states that they understand what the study involves and agree to participate. This document is not a contract — you can leave the study at any time and for any reason. You should feel free to discuss any concerns with the study coordinators.

Read more about informed consent and other safeguards to protect clinical research volunteers.

What questions should I ask before participating in clinical research?

Choosing to participate in research is an important decision for you and your family. Take your time deciding whether a clinical trial or study is right for you. Get answers to your questions and know your options before you decide. Here are a few questions you might ask the research team when thinking about participating:

• What is this study trying to find out?
• How is the study different from standard medical care?
• If the study tests a treatment, what are the possible risks, side effects, and benefits?
• Where will the study take place and how long will it last?
• Will I learn any information about my own brain health or risk factors?
• Will I and/or my study partner be paid for our time or reimbursed for travel expenses?
• How will the research team protect my health while I participate?
• What happens if I withdraw from the study early?
• What can I expect after the study ends?

Read more questions you might want to ask before participating in clinical research.

To learn more, please visit https://www.nia.nih.gov/health/clinical-trials-and-studies/participating-alzheimers-disease-and-related-dementias-research.

Physical activity is essential for healthy aging, and it can be beneficial at any stage of life. Some potential benefits are immediate, such as reduced feelings of anxiety, reduced blood pressure, and improved sleep. Others are long term and require consistent physical activity over time, such as reduced risk of cardiovascular disease, type 2 diabetes, and some cancers.

Importance of an active lifestyle for older adults

It’s never too late to start being physically active and to achieve the benefits of an active lifestyle. Older adults can benefit from all three types of exercise: aerobic, muscle-strengthening, and balance. Many activities, from exercise programs to household tasks, can count towards the 150 minutes of moderate-intensity aerobic activity and two days of muscle-strengthening activities recommended each week.

Physical activity can be an opportunity to participate in activities you enjoy, spend time with friends and family, get outdoors, improve fitness, and maintain a healthy weight. Additionally, being physically active as an older adult may improve your health and health-related quality of life. Active older adults also tend to live longer!

Functional ability and fall prevention

Physical activity improves physical function, making it easier to perform tasks of daily living — including household chores, getting into or out of a bed or chair, and moving around the neighborhood. This increased functional ability can help maintain independence and support independent living for older adults.

Movement and exercise may offer protection against osteoporosis and age-related loss of muscle mass, strength, and function, also known as sarcopenia. The health and functional ability of bones and muscles are especially important for older adults, who are at higher risk for falls and fall-related injuries. Improved physical function can reduce the risk of falls and likelihood of serious injury if there is a fall.

Disease risk and chronic health conditions

Physical activity helps to prevent certain diseases and chronic health conditions that are common among older adults. Older adults who are physically active have a lower risk of:

• Cardiovascular disease (including heart disease and stroke) and death caused by it
• High blood pressure
• Type 2 diabetes
• High cholesterol
• Obesity
• Cancers of the bladder, breast, colon, endometrium, esophagus, kidney, lung, and stomach
• Dementia (including Alzheimer’s disease)
• Depression

Being active can also help to slow or manage chronic disease and to delay death. For older adults who are managing a diagnosis, exercising with chronic conditions can improve quality of life and reduce the risk of developing new health conditions.

Mental and emotional health

Physical activity supports emotional and mental health in addition to physical health. Physical activity can help reduce feelings of depression and anxiety, improve sleep, and benefit overall emotional well-being. It may also improve or maintain some aspects of cognitive function, such as your ability to shift quickly between tasks, plan an activity, and ignore irrelevant information. Older adults who exercise with others get the added benefit of social connection as well.

Try these exercise ideas and see how you feel!

• Walking, bicycling, or dancing. Endurance activities increase your breathing, get your heart pumping, and boost chemicals in your body that may improve mood.
• Yoga. This mind and body practice typically combines physical postures, breathing exercises, and relaxation.
• Tai Chi. This “moving meditation” involves shifting the body slowly, gently, and precisely, while breathing deeply.
• An activity you enjoy. Whether it’s gardening, playing tennis, kicking around a soccer ball with your grandchildren, or something else, choose an activity that you want to do, not have to do.

To learn more, please visit https://www.nia.nih.gov/health/exercise-and-physical-activity/health-benefits-exercise-and-physical-activity.

There may come a time when you can no longer care for a person with Alzheimer’s disease at home. When that happens, you will need to find another place for that person to live.

You may feel guilty or upset about this decision, but as the disease worsens, it could be the best or even the only way to provide the optimal level of care that your loved one needs. Remember that many caregivers reach this point. Moving the person to a care facility may give you greater peace of mind.

Even after you decide the person needs to relocate, choosing the right place can be challenging. The process involves learning about long-term care facilities, arranging visits, and asking the right questions.

Different types of long-term care facilities

Long-term care facilities are not one-size-fits-all. Facility-based long-term care services include assisted living facilities, group homes, and nursing homes. Some facilities offer only housing and housekeeping, but many also provide personal care and medical services. Many facilities offer special programs for people with Alzheimer’s or other types of dementia.

Learn about the different types of places to determine where the person with Alzheimer’s will feel most comfortable.

• Assisted living facilities. Assisted living facilities have rooms or apartments. They’re for people who may need some help with daily tasks but do not need around-the-clock care. Some assisted living facilities have special Alzheimer’s units with staff who check on and care for people with dementia. You must pay for the cost of the room or apartment, and you may need to pay extra for any special care. Some assisted living facilities are part of a larger organization that also offers other levels of care. For example, continuing care retirement communities offer independent living and skilled nursing care.
• Group homes. A group home is a home for people who can no longer care for themselves. Several people receiving care live in the home. At least one caregiver is on site at all times. The staff takes care of the people living there by making meals, helping with grooming and medication, and providing for other needs. These homes may not be inspected or regulated but may still provide high-quality care.
• Nursing homes. Nursing homes are for people who can’t care for themselves anymore and may need ongoing medical care. Some nursing homes have special Alzheimer’s care units. These units are often in separate sections of the building where staff members have special training to care for people with dementia. Some units are designed with the goal of making the person feel more like they are at home. They provide special activities, meals, and medical care. Nursing homes are inspected and regulated by state governments.

Visiting facilities

Once you decide what kind of long-term care facility works for your loved one’s needs, choose a few places to visit. Talk with friends, relatives, social workers, or your religious community to find out what places they suggest. Check with health care providers about which nursing homes they feel provide good care. Call the facilities to learn more and to schedule visits.

Visit at different times of day and meet with the facility’s leaders to get a full understanding of how the facility works and treats the people who stay there.

Ask yourself:

• How does the staff care for the residents?
• Is the staff friendly?
• Does the place feel comfortable?
• How do the people who live there look? Are they clean and well cared for?
• Are mealtimes comfortable for people living there?
• Is the facility well-maintained? Does it look and smell clean?
• Do staff members speak to residents with patience and respect?

Ask the staff:

• What activities are planned for residents?
• How many staff members are at the facility? And how many of them are trained to provide medical
• care if needed?
• How many residents in the facility have Alzheimer’s?
• Does the facility have a special unit for people with Alzheimer’s? If so, what kinds of services does it provide? Are the costs for this unit different than those for the rest of the facility?
• Is there a doctor who checks on residents on a regular basis? How often?
• What is a typical day like for the person with Alzheimer’s?
• Is there a safe place for the person to go outside?
• What is included in the fee? What services or options would cost extra?
• How would my loved one get to medical appointments?

Talk with other caregivers who have a loved one at the facility. Find out what they think about the place. Ask about the total costs of care. Each facility is different, so you want to find out if long-term care insurance, Medicaid, or Medicare will pay for any of the costs.

If you’re asked to sign a contract, ensure you understand what you are agreeing to.

Making moving day easier

Moving a person with Alzheimer’s to an assisted living facility, group home, or nursing home is a big change for both the person and their caregiver. You may feel many emotions, from a sense of loss and sadness to guilt or even relief. It is okay to have all these feelings. A social worker or someone from a private service may be able to help you plan for and adjust to this big change. It’s important to have support during this difficult step.

Here are some things that may help:

• Know that the moving day can be very stressful.
• Talk to a social worker about your feelings about moving the person into a new place. Find out how to help the person with Alzheimer’s adjust.
• Get to know the staff before the person moves into a facility. Talk with them about ways to make the transition go smoothly.
• Be an advocate for the needs and preferences of the person with Alzheimer’s.
• Be supportive and listen to any concerns, but don’t argue with the person with Alzheimer’s about why they need to be there.

Once the person has moved to their new home, check in regularly to see how they are doing. As the caregiver, you probably know the person best. Look for signs that they may need more attention, are taking too much or not enough medication, or may not be getting the care they need. Build a relationship with staff so that you work together as care partners.

You may also be interested in

• Learning more about long-term care
• Reading about ways to pay for long-term care
• Getting tips for how to take care of yourself as an Alzheimer’s caregiver

For more information

NIA Alzheimer’s and related Dementias Education and Referral (ADEAR) Center
800-438-4380
adear@nia.nih.gov
www.nia.nih.gov/alzheimers
The NIA ADEAR Center offers information and publications for download (PDF) about Alzheimer’s and related dementias for families, caregivers, and health professionals. ADEAR Center staff answer telephone, email, and written requests and make referrals to local and national resources.

Alzheimers.gov
www.alzheimers.gov
Explore the Alzheimers.gov website for information and resources on Alzheimer’s and related dementias from across the federal government.

Eldercare Locator
800-677-1116
eldercarelocator@USAging.org
https://eldercare.acl.gov

LongTermCare.gov
202-619-0724
aclinfo@acl.hhs.gov
https://acl.gov/ltc

Family Caregiver Alliance
800-445-8106
info@caregiver.org
www.caregiver.org