Most family caregivers were never trained, and Medicare now pays to teach them

Key takeaways

• In a 2025 national survey, 63 million Americans, nearly 1 in 4 adults, were giving ongoing care, about 20 million more than in 2015¹.
• More than half of caregivers handle medical tasks such as injections, wound care or medicines, yet only about 1 in 5 has formal training for that work¹.
• In a federally funded trial of 642 dementia caregivers, 12.6% of those in a six-month coaching program called REACH II had clinical depression, compared with 22.7% of a comparison group³.
• Medicare pays clinicians to train family caregivers, and its GUIDE dementia program can cover up to $2,500 a year of respite care for eligible families⁷⁹¹⁰.
• The Eldercare Locator, 1-800-677-1116, connects you with your local Area Agency on Aging, which can point you to respite, counseling and caregiver training¹¹¹².

In 2025, the head of AARP told the story of Jacquelyn J. Revere in the group’s Bulletin². At 29, Revere was building a career writing for television. She took a 21-day leave and flew to California to check on her family².

Her grandmother was deep into dementia, and her mother was too confused to handle everyday life². The three weeks never ended. Revere quit her job, left her home and friends behind, and cared for both women until each one died².

Her story is unusual in its timing and common in its shape. A national survey by AARP and the National Alliance for Caregiving counted 63 million Americans giving ongoing care in 2025¹. Few of them were ever trained for the role¹.

Caregiving can bring meaning and closeness. It also brings a strain that builds slowly: lost sleep, lost income and lost time for yourself. This guide covers how researchers measure that strain, which programs have been tested, what Medicare now pays for and where to find a real break.

Caregiving now looks like a second job, often unpaid

The 2025 survey of 6,858 caregivers paints a picture of long hours and long stretches¹:

• Time. Nearly 1 in 4 caregivers give 40 or more hours of care a week. One-third have been at it for five years or longer¹.
• Children, too. Nearly 1 in 3 caregivers are also raising kids under 18. Among caregivers younger than 50, it’s 47%¹.
• Work. Six in 10 caregivers have jobs, and half of those workers report disruptions such as coming in late or leaving early¹.
• Money. Nearly half have suffered a major financial blow, like new debt, halted savings or trouble affording food¹.
• Health. One in 5 report fair or poor health. Nearly 1 in 4 say caregiving makes it hard to look after their own health, and nearly 1 in 4 feel socially isolated¹.

The skills gap may be the most surprising finding. More than half of caregivers manage complex tasks such as injections, wound care or medicines. Just over 20% have formal training in medical or nursing tasks¹.

A note on who paid for the survey: its funders included AARP, foundations, insurers such as Genworth and New York Life, the home care company Home Instead and the drug maker Novo Nordisk¹. The survey used Ipsos’s probability-based online panel, a method built to represent the country¹.

Our article on chronic stress looks at what the big studies of caregivers’ health found, and why researchers watch strain more closely than caregiving itself.

Researchers measure strain with a 22-question tool

How do scientists tell a busy caregiver from an overloaded one? One of the most widely used yardsticks is the Zarit Burden Interview, first published in 1980 by researchers Zarit, Reever and Bach-Peterson⁶.

The full version has 22 items, and a 12-item short form came later⁶. Caregivers rate a series of statements about how caring for someone touches their life, and the result is a burden score⁶. It shows up in many caregiving studies, including a trial of an online caregiver class⁶.

We describe the tool rather than reproduce it. A burden score is not a diagnosis, and a clinician or researcher should interpret it.

The lesson for families: researchers measure how caregivers feel, not just the hours they log. Two people with the same schedule can carry very different loads.

A tested program left far fewer caregivers depressed

In 2006, the National Institutes of Health (NIH) announced results from REACH II, a trial run at five U.S. sites and funded by the National Institute on Aging and the National Institute of Nursing Research³.

It enrolled 642 people caring for a relative with dementia. Hispanic, white and African American families each made up a group of over 200³. Within each group, caregivers were assigned by chance to the program or to a comparison group, which got education materials and two short check-in calls³.

Over six months, the program included nine home visits, three half-hour phone calls and five structured support sessions by phone³. Coaches taught stress management and caregiving skills, rehearsed hard moments through role-play and worked through problems step by step³.

The results were striking for a single study³:

• Clinical depression showed up in 12.6% of the program group, compared with 22.7% of the comparison group.
• Large gains in quality of life showed up for 45% of Hispanic caregivers in the program, versus 7% in the comparison group, and for 40% of white caregivers, versus 13%.
• African American caregivers improved too (28% versus 11%), but the benefit was clear mainly among those caring for a spouse.
• Nursing home placement was lower in the program group, 4.3% versus 7.2%, but that gap could have been chance.

Later reviewers were more cautious. In 2021, a National Academies of Sciences, Engineering, and Medicine committee leaned on a federal review of dementia care studies⁴. It found low-strength evidence that REACH II reduced caregiver depression at six months, and not enough evidence that it reduced caregiver strain⁴.

The committee singled out REACH II and team-based “collaborative care” as the two dementia care approaches with enough evidence, though only low-strength, to consider for wider use⁴⁵. Even so, it judged both ready for more real-world testing, not for nationwide rollout⁴.

Adapting the program outside the original trial has hit snags. A German version managed only 70% of the core modules in its manual, and in a Texas version, young and Black caregivers dropped out of follow-up more often⁴.

Savvy caregiver is another option many states offer. It’s a six-week class of about 12 hours that teaches dementia caregivers skills and ways of thinking about the role⁶. Two early trials of the workshops it grew from found moderate gains in burden, depression, anxiety and a sense of mastery, and the class has spread to more than a dozen states⁶.

Those early trials used wait-list comparison groups, who simply got the class later. That design can’t fully separate the class from the boost of extra attention. An online version, Tele-Savvy, has since been put through a formal trial⁶.

Medicare now pays for help aimed at the caregiver

Medicare has long paid for the patient’s care. Paying clinicians to teach the family is new: Medicare first paid for caregiver training services in 2024⁷.

How the benefit works, according to the National Alliance for Caregiving’s summary of the federal rules⁷:

• Who teaches. Doctors, nurse practitioners, physician assistants, clinical psychologists and certain therapists can provide the training. Some can have trained staff do it under their supervision.
• What it covers. Training must support the patient’s treatment plan. Since 2025, it can include hands-on clinical skills. Other codes cover training in managing difficult behaviors.
• Consent. The patient must agree. Since 2025, that consent can be spoken or written.
• Video. In the 2026 payment rule, Medicare made caregiver training a permanent part of its telehealth list⁸.

There are catches. Advocates asked Medicare to clarify billing, set training standards and review the copays families owe. The 2026 rule didn’t address those requests⁸.

The GUIDE model targets dementia. Medicare launched it on July 1, 2024, as an eight-year test⁹¹⁰. It’s open to people with dementia who live in the community and have Original Medicare, Parts A and B⁹. People in Medicare Advantage, PACE, hospice or long-term nursing home care don’t qualify⁹.

GUIDE programs provide a trained care navigator, a 24/7 support line for the caregiver, and caregiver education and skills training⁹. For people with moderate to severe dementia who have a caregiver, GUIDE can pay for respite⁹. CMS caps that at $2,500 a year, and its billing rules allow respite in the home, at an adult day center or in a facility¹⁰.

As of August 2026, CMS listed GUIDE as active, with 292 participating programs¹⁰. It works only through those programs, so ask the person’s doctor or memory clinic whether one serves your area. Because it’s a test, it’s too early to know how much it helps.

Respite is the help many caregivers say they need

Almost 40% of caregivers in the 2025 survey said respite services would help them¹. Respite means someone else takes over for a few hours or days, at home, in an adult day program or in a care facility¹⁰.

The federal National Family Caregiver Support Program, created in 2000, funds five kinds of help through states¹¹:

• information about local services;
• help getting those services;
• counseling, support groups and caregiver training;
• respite care;
• limited extra services.

It serves adults caring for someone 60 or older, or someone of any age with Alzheimer’s disease or a related disorder. It also serves relatives 55 and older who are raising children or caring for adults with disabilities¹¹.

In a federal survey of people using these services, 74% said the help let them provide care longer than they otherwise could, and 88% said it made them better caregivers¹¹. Those are users’ own reports, not trial results.

The research on respite itself is thin. The 2021 National Academies report listed respite care among the areas that need more study⁵. That isn’t proof that breaks don’t help. It means their effects haven’t been measured well enough to say.

The front door is one phone number. The Eldercare Locator, a public service of the federal Administration on Aging, connects you to your local Area Agency on Aging¹¹¹². Call or text 1-800-677-1116, or chat online at eldercare.acl.gov¹².

Caregiver support is also national policy. Under the RAISE Family Caregivers Act of 2018, a 2022 national strategy listed nearly 350 federal actions and more than 150 for states, employers and others¹³. Its advisory council was still meeting in 2026¹³. For job leave rules, see our article on wellness for full-time workers.

Your caregiver load check and respite plan

This is our own tool, not a validated test. Mark the column that fits each row best.

Area	Steady	Stretched	Overloaded
Hours of care each week	Under 10	10 to 39	40 or more
Medical tasks	None	Some, and I was shown how	Some, and no one trained me
Nights	I usually sleep through	I’m up once or twice a week	I’m up most nights
Backup	Two or more people can step in	One person, sometimes	No one
Your own checkups	Up to date	A little behind	Skipped for a year or more
Money	Steady	Tight	Debt or skipped bills
Mood	Mostly OK	Often tense or tearful	Low most days for two weeks or more14

If two or more marks land in the right column, build a respite plan this week. If one of them is in the mood row, also read the help section below.

A respite plan in six steps:

1. Name the break. Pick a size: two hours a week, one full day a month or one weekend a season.
2. List your bench. Write down every relative, friend, neighbor and faith-community member who could cover even one shift.
3. Call the Eldercare Locator. At 1-800-677-1116, ask for your Area Agency on Aging. Then ask about respite, adult day programs, caregiver training and support groups¹¹¹².
4. Ask about GUIDE. If your person has dementia and Original Medicare, ask their doctor whether a GUIDE program is nearby⁹.
5. Ask for training. At the next appointment, say: “I’m doing wound care at home. Can someone on your team train me? Medicare has caregiver training codes.”⁷
6. Write the handoff sheet. List medicines, routines, triggers, emergency contacts and what calms your person. A good sheet makes it easier for someone else to say yes.

Then put the break on the calendar and protect it like a doctor’s appointment.

Caring for yourself keeps the care going

Natural health values community, mutual aid and self-reliance. Caregiving tests all three. Self-reliance is a real strength, but doing everything alone isn’t a virtue. It’s a risk to you and to the person who depends on you.

Here is self-care advice from the National Institute of Mental Health (NIMH), adapted for a caregiver’s day¹⁴:

• Move in small doses. A daily 30-minute walk helps, and shorter bouts add up. A walk around the block while someone else sits with your person counts.
• Eat on a schedule. Regular meals and enough water matter, and so does watching caffeine and alcohol.
• Guard your sleep. Keep a steady schedule when you can, and trade night duty with someone if you can.
• Say no to new tasks. Decide what’s urgent and let other requests wait.
• Stay connected. Reach out to friends or family for emotional and practical support.

REACH II coaches taught stress management as a core skill, alongside practical problem solving³. Calm comes easier when the to-do list is shorter.

What the evidence shows

Approach	Evidence level	What studies found
REACH II coaching for caregiver depression	Promising but early	One large trial found less depression at six months; a federal review rated the evidence low-strength34
REACH II for caregiver strain	Not enough evidence	Reviewers found the evidence insufficient4
Savvy Caregiver class	Promising but early	Moderate gains in wait-list trials of the workshops it grew from; used in more than a dozen states6
Respite services	Not enough evidence	Valued by users; well-designed studies are lacking511
Medicare caregiver training	Not enough evidence	A benefit since 2024; we found no published outcome data78
GUIDE dementia model	Not enough evidence	An eight-year test that began in 2024910

When strain turns into something more

Caregiving can disrupt sleep and appetite on its own, which makes depression easy to miss. NIMH advises getting professional help for severe or distressing symptoms that last two weeks or more, such as¹⁴:

• trouble sleeping, or changes in appetite or weight you didn’t plan;
• struggling to get out of bed because of your mood;
• trouble concentrating;
• losing interest in things you usually enjoy;
• being unable to do your usual tasks;
• feeling irritable, frustrated or restless.

MedlinePlus, the National Library of Medicine’s health site, adds two signs to bring to a clinician promptly: frequent crying spells without a clear reason, and low mood that is disrupting your work or family life¹⁵. Your own primary care provider is a good place to start¹⁴.

If you are thinking about suicide, or you’re worried about someone, call or text the 988 Suicide & Crisis Lifeline at 988, or chat at 988lifeline.org. It’s free, confidential and open 24 hours a day¹⁴. In a life-threatening situation, call 911¹⁴.

Questions readers ask

The bottom line

Family caregiving has grown into a second, unpaid job for tens of millions of Americans, many of them working, raising kids and handling medical tasks no one taught them. The strain is real, and it’s measurable.

Help has caught up only partway. One coaching program, REACH II, has the best evidence. Medicare now pays for caregiver training and, through GUIDE, some dementia respite. Start with one call to the Eldercare Locator, line up one break, and get help fast if your own mood sinks.

Related reading

• Chronic stress adds up in the body, and two famous studies need a second look
• Emotional exhaustion isn’t only about work, since parents and helpers run dry too
• Full-time workers average under three free hours a workday, so build health into the rest
• A boundary is about what you’ll do, not what others must do
• The right kind of help beats more help, and giving it counts too

Sources

1. AARP. “New Report Reveals Crisis Point for America’s 63 Million Family Caregivers” (on AARP and the National Alliance for Caregiving, Caregiving in the U.S. 2025). AARP press release, July 24, 2025. aarp.org
2. Minter-Jordan M. “Your AARP: Where We Stand.” AARP Bulletin, September/October 2025. aarp.org
3. National Institutes of Health. “Novel Program Enhances Dementia Caregivers’ Quality of Life” (on Belle SH, et al., REACH II, Annals of Internal Medicine, 2006). NIH news release, November 20, 2006.
4. National Academies of Sciences, Engineering, and Medicine. “Making Decisions About Implementation,” chapter 4 in Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. National Academies Press, 2021. nationalacademies.org
5. National Academies of Sciences, Engineering, and Medicine. “Meeting the Urgent Needs of People Living With Dementia Requires Addressing Existing Disparities in Care and Ensuring Future Research Prioritizes Inclusivity and Real-World Studies.” News release, February 23, 2021. nationalacademies.org
6. Hepburn K, Griffiths P, et al. “Testing Tele-Savvy, an On-line Psychoeducation Program for Dementia Family Caregivers” (study protocol, NCT03033875, version December 9, 2019). ClinicalTrials.gov. cdn.clinicaltrials.gov
7. National Alliance for Caregiving. “CY2025 Medicare Physician Fee Schedule Final Rule: Update on Caregiver Training Services.” NAC, November 2024. caregiving.org
8. National Alliance for Caregiving. “Executive Summary: CY26 Medicare Physician Fee Schedule Final Rule.” NAC, December 2025. caregiving.org
9. Centers for Medicare & Medicaid Services. “Guiding an Improved Dementia Experience (GUIDE) Model: Fact Sheet.” CMS Innovation Center.
10. Centers for Medicare & Medicaid Services. “Guiding an Improved Dementia Experience (GUIDE) Model.” CMS Innovation Center, last modified August 11, 2026. cms.gov ; respite settings from CMS, “Implementation of the Guiding an Improved Dementia Experience (GUIDE) Model,” Change Request 13412, Transmittal 12365, November 16, 2023. hhs.gov
11. Administration for Community Living. “National Family Caregiver Support Program.” ACL, U.S. Department of Health and Human Services. acl.gov
12. Administration for Community Living. “Eldercare Locator.” ACL, U.S. Department of Health and Human Services. eldercare.acl.gov
13. Administration for Community Living. “RAISE Family Caregiving Advisory Council.” ACL, accessed October 2026. acl.gov
14. National Institute of Mental Health. “Caring for Your Mental Health.” NIH, last reviewed April 2026. nimh.nih.gov
15. MedlinePlus Medical Encyclopedia. “Major Depression.” U.S. National Library of Medicine, reviewed April 19, 2025. medlineplus.gov