Caregiver Self-Care: Respite, Support and Signs of Burnout

If you are caring for someone living with dementia, you are probably reading this late, tired, and with a list of things you have not done. That is normal. Caring for yourself is not a luxury or a reward for finishing everything. It is what lets you keep going.

This page covers the warning signs of burnout, how to get a real break, where to find support, and free US helplines you can call today.

What are the signs of caregiver burnout?

Burnout often creeps in slowly, so it helps to know your own warning signs. The National Institute on Aging (NIA) lists signs of caregiver stress, including:

• feeling exhausted, overwhelmed or anxious;
• becoming easily angered or impatient;
• feeling lonely or disconnected from others;
• trouble sleeping, or not getting enough sleep;
• feeling sad or hopeless, or losing interest in things you used to enjoy;
• frequent headaches, pain or other physical problems;
• no time to exercise or make healthy food for yourself;
• skipping showers or other personal care;
• misusing alcohol or drugs, including prescription medicines.

The Alzheimer’s Association adds signs such as denial about the disease, anger at the person (“he’s just being stubborn”), anxiety about the future, trouble concentrating, and health problems taking a toll. It advises talking to your doctor if you have signs like these regularly.

The NIA’s advice is not to wait until you are completely overwhelmed. Notice your signs early and act on them.

What can I do today, in five minutes?

Small breaks count. None of these fix burnout, but they can get you through a hard afternoon.

• Step outside. Sit on the porch or walk to the mailbox while the person is safe and settled.
• Breathe slowly. A few slow breaths before you answer a hard question. You can share a Calm Breathing pause with the person you care for, too.
• Drink some water and eat something. It is easy to forget your own meals.
• Text one friend. Not to ask for anything, just to connect.
• Say something kind to yourself. The NIA’s guide to caring for yourself suggests phrases like “I’m doing the best I can,” “I’m not perfect, and that’s okay,” and “I will enjoy the moments when we can be together in peace.”

What is respite care, and how do I get it?

Respite care is short-term care for the person you look after, so you can rest. The NIA’s page on respite care explains that it can last from a few hours to several weeks and can happen at home, in a health care facility or at an adult day care center.

The Alzheimer’s Association describes common types:

Who pays? According to the NIA, respite from family, friends or volunteers may cost nothing. Professional services charge by the hour or day. For a person receiving hospice care, Medicare covers most of the cost of up to five consecutive days of respite in a hospital or skilled nursing facility. Medicaid may help. Most private health insurance does not cover respite, though some long-term care insurance plans do.

Tip: The Alzheimer’s Association suggests trying respite providers in a non-emergency situation, so they are ready if you suddenly need help.

Where can I find help near me?

Several free US services can point you to local help.

• Alzheimer’s Association 24/7 Helpline: 1-800-272-3900. The Helpline is free and confidential, staffed around the clock every day of the year, with help in more than 200 languages through bilingual staff or interpreters. Dial 711 for a relay service. You can talk through behavior changes, caregiver stress, respite options, local programs and more, and ask for a longer conversation with a care consultant. Staff do not give medical advice.
• Eldercare Locator: 1-800-677-1116. The Eldercare Locator, a public service of the Administration for Community Living, connects you to services for older adults and their families. You can call, text, chat online or email trained staff, or search by location. It can point you to your local Area Agency on Aging.
• ARCH National Respite Locator Service. The ARCH respite locator helps you find respite providers by state, and suggests contacting your State Respite Coalition or Lifespan Respite program first if your state has one. ARCH notes that it does not check providers, so review their experience and background yourself.

How do I find a support group?

Ask the Helpline or look online for groups near you. The Alzheimer’s Association runs support groups for caregivers and people living with dementia, in person and online, led by trained facilitators. Many locations also offer specialized groups, for example for adult caregivers or for people living with younger-onset or early-stage Alzheimer’s. It also hosts ALZConnected, a free online community where caregivers share advice.

Support groups can be a place to vent without judgment, pick up practical tips from people who have been there, and feel less alone. If the first group is not a fit, try another.

How do I ask family and friends for help?

Be specific. Many people want to help but do not know what to offer. The NIA suggests:

• Keep a list of tasks others could take on, and let people pick.
• Start small if asking feels hard.
• Match the task to the person. The cousin who loves to cook brings dinner on Thursdays. The neighbor who is good with forms helps with paperwork.
• Text or email if asking face to face is uncomfortable.
• Practice a reply for when someone offers: “Thanks for asking. Here’s what you can do.”
• Expect some no’s and try not to take them personally.

Other ideas: ask someone to sit with the person for one afternoon a week, take them on a short outing, or visit and play a game together. Our guide to playing together is easy to share with visitors.

What if something happened to me?

Make a simple backup plan now. The NIA suggests deciding with family or close friends who would step in, and keeping a notebook with emergency numbers, medicines, behavior tips that work, and favorite activities. The Alzheimer’s Association also recommends keeping the person’s medical contacts and an up-to-date medicine list easy to find.

When should I get professional or urgent help?

Talk to your doctor if stress signs are regular, if you feel depressed, or if you are struggling to cope. Tell your doctor you are a caregiver. The NIA notes that counselors and social workers can help with difficult feelings and planning, and that Medicare, Medicaid and some private insurance may cover some mental health costs.

If you feel in crisis or have thoughts of harming yourself, call or text 988 to reach the 988 Suicide & Crisis Lifeline, free and available 24/7. If anyone is in immediate danger, call 911.

Can shared activities give me a break too?

Sometimes. A calm activity you both enjoy can be a gentler part of the day for you as well as the person you care for: listening to old songs, looking at photos, or a game like Conversation Cards that needs no right answers. If the person enjoys company, a group session with Picture Bingo at a senior center or adult day program can give you an hour of respite. See activities for care home groups for ideas.