Caregiver guide
Caregiver self care for dementia caregivers
Caregiver self care means looking after your own body, mind and spirit while you care for someone with dementia: asking for help, taking breaks every day, staying connected to people and keeping up with your own health. It isn't selfish. It's what lets you keep going.
What is caregiver self care?
You've heard it before: "Make sure you take care of yourself." Maybe you nodded and thought, when? There's no time, no one to step in, and sleep is something you used to do.
Self care for the caregiver isn't bubble baths and spa days. It's the basic things that keep you healthy enough to care for someone else: sleep, food, a doctor's visit, a few minutes to yourself, and people who understand.
Caring for a person living with dementia is hard on anyone. Stress that goes on and on can wear down your health and your mood. Taking small steps for yourself now can help keep you from getting sick or depressed later.
This guide offers simple, real-life ideas, a quick burnout self-check and ways the Alzheimer's & Dementia Resource Center (ADRC) can help, for free.
Caregiver self care tips that actually fit your day
Pick one or two. Small and steady beats big and rare.
Ask for help, specifically
'Can you bring dinner Thursday?' gets a yes more often than 'Let me know if you need anything.'
Take a break every day
Even 15 minutes. Step outside, sit in the car with music, call a friend or close your eyes.
Protect your sleep
If nights are broken by wandering or bathroom trips, tell your person's doctor. Lost sleep adds up fast, and there may be ways to help.
Keep your own doctor visits
See your doctor regularly and tell them you're a caregiver. Don't skip your own checkups, screenings or medicines.
Eat real food and move a little
Simple meals, water and a short walk count. Walking together can help your person too.
Stay connected
Keep in touch with at least one friend who asks how you are.
Keep something that's yours
A hobby, a TV show, gardening, church. Something that reminds you who you are outside caregiving.
Join a support group
Talk with people who get it without explaining. ADRC's caregiver support groups are free.
Get your papers in order
Knowing the legal and money side is handled lifts a weight. See our guide to power of attorney for dementia.
It's okay to ask for help
Many caregivers find asking for help harder than the caregiving itself. You may feel you should do it all. You may think no one will come through. You may feel guilty leaving your person with someone else, or worry you can't afford to pay anyone.
You don't have to do everything yourself. Some ways to make asking easier:
- Make a list of tasks that others could do: grocery runs, a meal, mowing the lawn, sitting with your person for an hour, a ride to an appointment.
- Match the task to the person. The sibling who lives far away might handle bills or insurance calls. The neighbor might pick up prescriptions.
- Use outside services like in-home care or adult day programs. Respite care gives you a break while your person is safe. Learn about respite care and other care options in Central Florida.
- Look into help with costs. Medicare's GUIDE program provides a limited number of respite hours. Veterans and their caregivers may have extra options; see our Veterans Resources and the VA Caregiver Support Line at 1-855-260-3274. Our guide to dementia and money problems covers other financial help.
Sometimes people don't believe how hard it is, because your person "seems fine" during short visits. A two-page guide, like the one at the bottom of this page, can help family see what you see.
Caregiver burnout quiz: a quick self-check
This isn't a test you pass or fail. Read each one and notice how many sound like you lately. The more that fit, the more you need support, starting now.
I'm tired all the time
Even after sleep, or I can't remember the last time I slept through the night.
I'm short-tempered
I snap at my person, my family or myself more than I used to.
I've pulled away
I've stopped seeing friends or doing things I used to enjoy.
My health is slipping
I've skipped my own appointments, lost or gained weight, or I'm getting sick more often.
I feel hopeless or numb
I cry often, feel nothing at all or feel like nothing will get better.
I'm leaning on something to cope
More alcohol, more pills or more of anything than is good for me.
I feel trapped
I think about running away, or I resent my person and then feel guilty.
"I am so tired of being a caregiver"
If you've thought this, you are not a bad person. You're a tired one. Many caregivers feel the same way, even if they don't say it out loud.
Feeling that being a caregiver is killing you is a sign that something has to change, not that you've failed. Here's where to start:
- Tell one person today. A friend, your doctor, your pastor or ADRC at (407) 436-7750.
- Book a free Care Navigation session. We'll look at what you can afford, who can help and what services are nearby, and build a plan that includes you.
- Get a break on the calendar. Even one regular afternoon off can change how the week feels.
- Consider a counselor. Talking with a counselor can help when caregiving becomes too much. Your doctor can refer you.
If you're thinking about harming yourself, call or text 988 to reach the Suicide & Crisis Lifeline, any time. If anyone is in danger, call 911.
A simple caregiver self-care checklist
Print this or keep it on your phone. You don't have to do all of it. Check off what you can.
Every day
Eat at least two real meals. Drink water. Take one break for yourself. Take your own medicines. Tell yourself one kind thing.
Every week
Talk to a friend. Get outside. Ask someone for help with one task. Do one thing you enjoy.
Every month
Go to a support group. Plan a longer break. Check in on your own feelings: are you okay?
Every year
See your own doctor. Review your person's legal and financial papers. Update your emergency plan for who cares for your person if you get sick.
Be kind to yourself
Caring for someone with dementia brings up every feeling: sadness, loneliness, frustration, confusion, anger and love, sometimes all before lunch. These feelings are normal.
When it's a hard day, try telling yourself:
- This would be hard for anyone.
- I'm doing my best, and that's enough.
- Some things are out of my control.
- Today, I'll do what works for now.
- When my person is upset, it's the disease, not me.
- I'll hold on to the good moments when they come.
Caring for your spirit
Many caregivers find strength in faith, prayer, nature or quiet time. A faith community can offer comfort and practical help. For some, just the sense that something bigger is at work brings peace.
ADRC's Renewed Care devotional offers one short moment of encouragement for each week of the year, written for dementia care partners.
When caregiving nears its end, self care matters more than ever. Our guide to end-of-life dementia care covers what to expect and how to look after your own grief.
Based in part on National Institute on Aging guidance.
Questions about caregiver self care
What is caregiver burden?
Caregiver burden is the strain caregivers feel from the physical, emotional, social and money demands of caring for someone. It builds over time, especially with little help or sleep. Getting support early can ease it.
What are the three common stresses of a caregiver?
Many caregivers name three: emotional stress (worry, grief, guilt and feeling alone), physical stress (lost sleep, lifting and no time for your own health) and money stress (paying for care and missing work). Support groups, Care Navigation and respite help with all three.
What are the symptoms of caregiver syndrome?
"Caregiver syndrome" isn't a medical diagnosis, but people use it to describe exhaustion, anger, sadness, trouble sleeping, getting sick often and pulling away from others after caring for someone for a long time. If this sounds like you, see your doctor and reach out for support.
What self-care practices help prevent and manage burnout?
The most helpful are regular breaks, enough sleep, asking for specific help, staying connected with people and joining a support group. Learning what to expect from dementia also helps, because fewer things catch you off guard. ADRC's education workshops are a good place to start. If you are in crisis, find caregiver crisis resources.
Are there online support groups for caregivers?
Yes. ADRC runs free virtual support groups, including an evening group, a group for Spanish-speaking caregivers and a group for adult daughters and granddaughters. To join a virtual group, email info@adrccares.org. See all our caregiver support groups.
How do I take a break when no one can watch my person?
Look into adult day programs, in-home aides or short respite stays. ADRC's Winter Park support group offers respite through Easter Seals during the meeting. Call ADRC at (407) 436-7750 and we'll share options near you.
Is it selfish to take care of myself?
No. Your person depends on you, and you can't care for them if you're sick or worn out. Taking care of yourself is part of taking care of them.
Is there a caring for the caregiver program near me?
If you live in Central Florida, yes. ADRC offers free Care Navigation, support groups, education and referrals for caregivers in Orange and Seminole counties, and our virtual groups are open more widely. Call (407) 436-7750.
Download the free guide
The National Institute on Aging's two-page tip sheet on caring for yourself is easy to keep on the fridge or share with family.
You don't have to do this alone
Alzheimer's & Dementia Resource Center (ADRC)
- Monday to Friday: 8:30 AM to 4:30 PM
The Alzheimer's & Dementia Resource Center (ADRC) in Winter Park, Florida, offers free help for caregivers in Orange and Seminole counties, including support groups and Care Navigation; call (407) 436-7750. In an emergency, call 911. The Alzheimer's Association 24/7 Helpline is 800-272-3900.