Care for a Caregiver

The Challenge

More than more than one in five Americans (21.3 percent) are unpaid family caregivers, having provided care to an adult or child with special needs within the past year — that’s 53 million people, according to a comprehensive study, “Caregiving in the U.S. 2020.” Nearly 42 million of those family caregivers provide unpaid care for adults age 50+. These family caregivers help meet the needs of family members, neighbors and friends. The task of caregiving is enormous. A quarter of family caregivers care for multiple people, and caregiving is becoming more complex.

Caregivers often put themselves at the bottom of the list when it comes to self-care. In doing so, they put their own health at risk and often end up isolated from their social networks. This puts them at risk for various physical and mental health issues and may also jeopardize the well-being of the people who rely on them for care.

How You Can Help

You can help a caregiver in many ways — for example, by giving their loved one rides to the doctor’s office, organizing medicines, preparing meals or finding resources that can help families. It’s always good to remind caregivers that if they let others help them, they may be better caregivers, and avoid burnout. When you support a family caregiver, you’re helping both the caregiver and the loved ones they care for. 

You can choose the time commitment that works best for you, whether it’s a one-time offer of help with an errand or a more long-term commitment. Or you might find that you want to devote time each week to helping a caregiver. The ideas in this guide require varying levels of commitment.

Always ensure that you do not have a cold or other contagious condition when visiting a caregiver and/or care recipients.

Getting Started in 3 Steps

Step 1: YOUR TIME, YOUR TALENT
Determine how much time you may have to devote to assisting the caregiver and in what ways you can contribute most by using your talents and skills. Lighten the load of the caregiver with your unique abilities, whether it be organizing, research, shopping, driving, cooking/baking, financial management, caring, listening or creativity.

Step 2: DETERMINE YOUR AREA OF INTEREST
There are many ways you can help. Caregivers often need help with basic daily tasks such as household or yard chores, grocery shopping, preparing meals or getting their loved ones to medical appointments. Besides assisting with these tasks, you might consider helping a caregiver in a variety of other areas. This project guide provides tips for the following areas (tip sheets may also be downloaded from the Supplemental Materials  at the end of this guide):

• Navigating public benefits: Help someone find and understand federal, state, and private programs that help cover the costs of food, medicine, and utilities for the caregiver or the care recipients.
• Finding transportation
• Assisting caregivers in evaluating home safety
• Supporting healthy behaviors
• Managing health and medication records

Simply distributing the Tip Sheets in the guide is a great way to help others.

Step 3: AGREE TO A FIRST STEP
Offer to help in some small way and then check in to see if more help would be welcome. If you begin to help more often, try to plan a regular schedule. Keeping designated times improves quality of life for the caregiver and the people receiving care. If caregivers know they can rely on you, they can plan ahead. And if you are able to give caregivers a break, they can even plan for self-care such as doctor visits, exercise, rest and renewal and fun activities.

Tips for Navigating Public Benefits

The Challenge
Many caregivers are not aware that their loved ones could receive support from government programs to cover the cost of necessities. Challenging application processes complicate the problem since each program’s application and eligibility requirements can be different.

Help a Caregiver
There are a number of public benefits available to people who meet various age, income and need requirements. One good way to help a caregiver identify those for which they or their loved ones qualify is to download their state’s public benefits guide and share it with the caregiver. (AARP has compiled links to public benefits guides in every state.) You may also offer to make phone calls, download and fill out forms, and help them navigate the requirements and applications. The National Council on Aging also offers Benefits CheckUp, which is a comprehensive and useful guide to benefits.

Get Started
Discuss priority needs with caregivers and help them target the areas where they most need support. Assist them in using screening tools to determine benefits they may be eligible for, make phone calls to learn more about eligibility and assist with applications if needed. Volunteers might accompany caregivers and/or care recipients to appointments at local government agencies to learn more about benefits.

Online Resources and Tools

You can find expert advice, free education and helpful information on Medicare, financial relief, food assistance, choosing an appropriate prescription drug plan and more by using the free tools listed below:

AARP’s Medicare Resource Center (www.aarp.org/medicare): Includes AARP’s Medicare Q&A tool

AARP’s Caregiving Site (https://www.aarp.org/caregiving/): This hub offers a wealth of caregiver information, advice and resources, including a HomeFit guide to help find ways to make a home more livable, a caregiver community and caregiving resources in Spanish.

State Health Insurance Assistance Program (www.shiphelp.org): The State Health Insurance Assistance Programs (SHIP) provide local, in-depth, and objective insurance counseling and assistance to Medicare-eligible individuals, their families, and caregivers.

Medicare (www.medicare.gov)

Medicare Interactive Tool (www.medicareinteractive.org/index.php)

Medicare Part D Guide (www.aarp.org/health/medicare-insurance/medicare_partD_guide/)

Food Assistance-Supplemental Nutritional Assistance Program SNAP (formerly Food Stamps) (www.aarp.org/snap)

Tips for Finding Transportation Options

The Challenge
Caregivers often report that they are interested in receiving help with transportation services for their loved ones who can no longer drive. Alternative transportation options become crucial to care recipients’ independence and ability to stay connected to their community and the people and services that support their health and quality of life. Caregivers may not know how to find these alternative transportation services in their neighborhoods — and they may have difficulty finding the time to drive their loved ones to appointments and social events.

Help a Caregiver

Volunteers can help caregivers by exploring transportation options in the care recipient’s neighborhood. Getting the facts on transportation services takes another burden off the caregiver’s shoulders. Investigate available transportation services for older adults who don’t drive in your community. Many programs provide door-to-door and/or door-through-door rides. Some can even arrange for a driver to stay with his or her passengers at a destination until they are ready to return home. The best public transportation services in your community are clean, safe, reliable and user-friendly, as well as accessible and affordable. Try these resources to find transportation options:

• The Eldercare Locator (https://eldercare.acl.gov/public/Resources/LearnMoreAbout/Transportation.aspx), can help you locate your regional Area Agency on Aging to access information about transportation offices.
• State Plans for Independent Living (SPILs) and Centers for Independent Living (CILs) may offer additional resources. The Administration for Community Living has compiled a useful list of these programs by state.
• Your local transit agency may provide helpful information.
• The Community Resource Finder allows you to search for services by zip code (www.communityresourcefinder.org — click on “Community Services”, then “Transportation”).
• Call 211 and ask about local transportation services.
• As a helper, you can also give a ride to a caregiver and/or the one they care for — or you can find a volunteer driving program in your community. Please check your auto insurance policy if you decide to become a volunteer driver.

Get Started
Volunteers can start by discussing transportation needs and priorities with caregivers and care recipients. Then explore options including reliable public transportation, taxis, car services and on-demand services like dial-a-ride, senior transportation, medical transport, or volunteer drivers. Volunteers may assist caregivers in applying for special transportation programs and/or scheduling rides. Several modes of transportation may be necessary to meet caregiving needs

Online Resources

AARP’s Caregiving Site (https://www.aarp.org/caregiving/home-care/info-2020/transportation-services.html): “Transportation: What Caregivers Need to Know”

AARP’s Livable Communities Initiative – AARP RoadMap to Livability Collection, Transportation Workbook (www.aarp.org/content/dam/aarp/livable-communities/livable-documents/documents-2018/Book-4-Roadmap-to-Livability-Transportation-051118lr.pdf)

AARP’s Public Policy Institute, Livable Communities, Transportation

(www.aarp.org/ppi/issues/livable-communities/transportation/?intcmp=AE-PPI-LIVCOMM-TERTNAV-TRSNP)

AARP Driver Safety Program (www.aarp.org/drive)

We Need to Talk Seminar (www.aarp.org/auto/driver-safety/we-need-to-talk/)

Easter Seals Senior Transportation Toolkit The American Public Transportation Association (www.apta.com/research-technical-resources/public-transportation-links/)

Tips for Home Safety

The Challenge
By 2060, the Census Bureau estimates that 19 million people in the U.S. will be age 85 or older. Most people would like to stay in their homes as long as possible, and caregivers often face the challenge of making sure their loved one’s house is safe and comfortable.

Help a Caregiver
Volunteers can learn about steps that caregivers can take to ensure the home can support the changing needs and lifestyle of their loved one for as long as possible. You can help caregivers reduce the risk of accidents in the house and provide more peace of mind for the caregiver and the care recipient. And you can help caregivers find professionals to assist with home evaluation and updates.

Get Started
Home design can make a big difference in whether loved ones can continue to stay in their home comfortably and safely. Discover how small, simple updates to a home may make it easier for the caregiver to help their loved ones go about their daily activities while staying comfortable, independent and injury-free in their home.

Volunteers can help to assess these simple safety questions:

• Do doorknobs, cabinet handles and faucets have lever handles, which are easier to use than rounded knobs?
• Does the bathtub and/or shower have a nonslip surface? Are there properly installed grab bars in appropriate places?
• Is the toilet height comfortable and easy to get on and off?
• Are hallways and staircases well lit?
• Are there secure handrails on both sides of stairways?
• Can you replace traditional light switches with lower-placed rocker-style light switches and thermostat controls?

These are just a few no-cost/low-cost things to help make a home more comfortable and safer to live in.

Help reduce falls by installing a seat in the shower, putting handrails on both sides of the stairway, and using brighter, non-glare lights.

Help to assess the home to identify potential issues early. That way you can explore options for fixing problems and see what kind of budget may be needed to make any major changes. A great volunteer activity is to go room by room with the caregiver using AARP HomeFit Guide (www.aarp.org/homefit) to identify potential safety issues. The website includes videos and helpful checklists that volunteers could help caregivers complete. The free HomeFit AR app (available for iPhone and iPad) can also be used to identify the improvements that help make a home comfortable, safe and a great fit. Then you may want to contact a physical or occupational therapist, or a Certified Aging-in-Place Specialist (www.nahb.org/capsdirectory — check “CAPS” in the search fields) who can identify, recommend and/or provide home modifications.

Online Resources

• AARP HomeFit Guide (www.aarp.org/homefit)
• AARP article: “Your Home Checklist for Aging in Place” (https://www.aarp.org/home-family/your-home/info-2021/aging-in-place-checklist.html)

Tips for Adopting Healthy Behaviors

The Challenge
Caregiving can be rewarding, but it is also demanding. In a 2020 study by the National Alliance for Caregiving and AARP, researchers found that nearly four in 10 caregivers consider their caregiving situation to be highly stressful. A 2022 Pew Research Center report found that about a quarter of adults are in the “sandwich generation,” caring for both aging loved ones and children. By helping a caregiver take care of him or herself, you’re helping them be better caregivers, which helps both them and the people they care for.

Help a Caregiver
Stress can negatively affect overall health, well-being and the ability to provide care. Help a caregiver by sharing some of the immediate benefits of adopting an active, healthy lifestyle such as:

• Increased energy
• Lower blood pressure
• Better sleep
• Reduced tension and stress
• Reduced risk of heart disease, stroke, diabetes, and some cancers
• Elevated mood (a clinically proven benefit of exercise)

Get Started
One way to help caregivers have time to care for themselves is to help them find respite care (someone else to care for their loved ones so they can nurture themselves and take a break, rest, go to health care appointments or have fun). Share the list of tips below with the caregiver you’re supporting:

• Be social. This may take advance planning, but it’s worth it. Isolation increases stress and causes negative health outcomes, while having fun with friends and family helps to balance your emotions.
• Take care of your own needs. You can offer the best support when your physical, mental, and emotional self is in prime shape.
•  Ask friends and relatives for help. Make a list of tasks you need to get accomplished and ask friends and relatives to help complete the tasks. Loved ones who live far away can still provide plenty of support using phones and computers or offering financial support.
•  Reach out to community services. This is where friendly volunteers jump in! Home-health aides, shopping helpers, homemakers, and repair people all can shoulder some of the many aspects of caregiving. Consider tapping into volunteer networks or staff from faith-based or civic groups to visit, cook or help you with driving.
• Take a break. You need it. Think about respite care by friends, relatives, respite care providers or volunteers. Try for a weekend or a longer vacation by using respite care programs, home-health agencies, nursing homes, assisted living residences and group care homes, which sometimes accept short-term residents when space permits. Adult day-care centers, which usually operate five days a week, provide care in a group setting for older people who are isolated, need socialization or can’t be home alone.
• Let it out. Talk with friends, family and perhaps leaders at your place of worship about the challenges and rewards of caregiving. Open up to coworkers in similar situations when appropriate. Join a support group for caregivers and join online caregiver support forums such as the AARP Family Caregivers Discussion Group on Facebook (www.facebook.com/groups/aarpfamilycaregivers).
• Allow your mind to rest and rejuvenate. Do something you enjoy, whether it’s reading, walking, or listening to music. Some people meditate or use relaxation techniques such as mindfulness, deep breathing or visualizing a positive place. Many find prayer helpful.
• Organize. A good plan will give you more personal time and help you feel more in control. Set priorities and realistic goals. List your caregiving priorities and get the important ones done first. Remember to pace yourself.
• Ditch negative feelings. Keep your focus on the positive. Hold a family meeting to resolve conflicts with siblings and other relatives. Feel positive about your accomplishments as a caregiver instead of dwelling on perceived shortcomings. There are no perfect caregivers — just do your best; that makes you a successful caregiver.

Online Resources
AARP Caregiving site (www.aarp.org/caregiving)
AARP Life Balance while caregiving (www.aarp.org/caregiving/life-balance)

AARP article: “Caregiver Burnout: Steps for Coping with Stress” (www.aarp.org/caregiving/life-balance/info-2019/caregiver-stress-burnout.html)

AARP Wellness Resources (www.aarp.org/health/healthy-living)
Alzheimer’s Association (www.alz.org) or 1-800-272-3900
Family Caregiver Alliance (www.caregiver.org) or 1-800-445-8106
National Alliance for Hispanic Health (www.hispanichealth.org)
Su Familia: The Hispanic Family Health Helpline, toll-free at 1-866-783-2645
Aging Life Care Association (www.aginglifecare.org) or 1-520-881-8008

National Women’s Health Information Center (www.womenshealth.gov) or 1-800-994-9662

Tips for Managing Health and Medication Records

The Challenge
People have lots to juggle — and to remember — when it comes to their health. Having incomplete or inaccurate health records may interfere with good care, as the records should contain the facts that doctors need to know to treat patients properly.
Health records need to include up-to-date descriptions of medications. Most adults aged 45 and older take an average of four prescription drugs daily. And that’s in addition to any vitamins, supplements, or over-the-counter medicines they may take as well. There are many challenges related to managing medications, including a lack of care coordination among doctors, other health professionals and caregivers, which often causes unintended medication interactions, side effects, etc.

Help a Caregiver
At any age, it’s easy to forget important information about medical history — when the last physical or health screening occurred and what medications are currently being prescribed.

Help a caregiver keep track of a loved one’s health and medication record in one place by downloading a medication or medical records form and sharing it with them. This helps the caregiver  create a valuable record to share with health care providers. You may also check in with the caregiver every two to three months or so to remind them to keepthe records updated.   Following are some useful tools to share. You might also remind them to note general information such as age, emergency contacts, health insurance, doctor’s names, allergies, and any relevant medical devices or equipment, such as having a pacemaker or use of oxygen or a CPAP machine. A list of health care providers — including their dentist, pharmacy, social workers, case managers, care providers, and any other key health or care professionals – may also be important. They should also list any conditions, such as high blood pressure and diabetes, as well as any operations or other medical procedures. Record hospitalizations, office visits, screenings, immunizations, and tests should also be noted, as well as the conditions that blood relatives have had and their causes of death if they are deceased. Check the Tools section for some easy-to-use resources to help get them started.

Remind the caregiver to prepare several copies of the health and medication record to give to the loved one’s doctors, professional caregivers, and appropriate family members.

Remind the caregiver to include the names of all medicines, including prescriptions, over-the-counter drugs, and any vitamins or dietary supplements the loved one takes. The medication section of the health record should describe who prescribed the drugs and why they are taken, their form (pill, liquid, caplet, cream, nasal spray, inhaler, etc.), the dosage (how often and when), the start and stop dates, refill dates, and any special notes or instructions. Encourage the caregiver to think about whether their loved one is taking medications as directed, or if help is needed in the form of medication reminders or administration of medications and discuss those concerns with medical providers. The caregiver may also wish to think about the answers to key questions that can be shared with health care practitioners:

• Are there side effects to look out for? Is a loved one already experiencing possible side effects that should be discussed with the pharmacist or doctor?
• Are there alternative drugs that might be more effective or have fewer side effects?
• Does the medication work safely with the other ones the patient is taking or are there negative drug interactions?
• Are there similarly effective, lower-cost brand-name or generic drugs?

Tools to Help the Caregiver Get Started

Personal Medication Record: Caregivers can track medications and help health professionals have the most updated information by creating a Personal Medication Record. This form, available in both English and Spanish, upon completion will contain a list of all the medicines being taken, including over-the-counter drugs and herbal supplements, the doses and frequency. www.aarp.org/health/drugs-supplements/info-2007/my_personal_medication_record.html Or find a how-to kit on helping others with the Rx Snapshot medication record at createthegood.aarp.org/volunteer-guides/help-manage-medications.html

AARP article: “Recording Health History: The Basics” (https://www.aarp.org/caregiving/health/info-2017/record-history.html)

Food and Drug Administration’s “My Medicine Record (https://www.fda.gov/files/about%20fda/published/My-Medicine-Record-%28PDF%29-%2A%2ANote--For-best-form-functionality--Right-click-3664-link-and-click-Save-Link-As%E2%80%A6-to-save-to-your-desktop-and-then-open-the-file.pdf)

AARP Caregiving Guides (www.aarp.org/preparetocare)

Family Health Portrait: The U.S. Surgeon General's Office has an Internet-based tool called “My Family Health Portrait” (https://cbiit.github.io/FHH/html/index.html). Caregivers can use the tool to record the family’s health history and print out a family tree for the doctor.

Online Resources
AARP information on Drugs and Supplements (www.aarp.org/health/drugs-supplements)

AARP information on Conditions and Treatments (www.aarp.org/health/conditions-treatments/?intcmp=GLBNAV-SL-HEA-COND)

AARP Information on Brain Health (www.aarp.org/health/brain-health/)

AARP Eye Center (www.aarp.org/health/conditions-treatments/eye-center/)

AARP Vaccine Guide (www.aarp.org/health/conditions-treatments/info-2020/getting-covid19-vaccine.html)

AARP Medicare Resource Center (www.aarp.org/health/medicare-insurance/)

Supplemental Materials

Tip Sheet: Find all the tips provided in this guide in this downloadable PDF file.