Respite care for dementia caregivers: how to get a real break

Respite care is a planned break for you while someone else looks after your parent. It can be an aide who comes to the house for four hours, a weekday adult day program, or a stay of a few days in an assisted living or memory care community. Respite care for dementia caregivers is mostly paid for out of pocket, with help in some places from Medicaid, the VA, sliding-scale fees and local grants. The fastest way in is one phone call to her local Area Agency on Aging.

You don't need to be at a breaking point to qualify, and you don't need to justify it. A break you take on a schedule is cheaper than the one your body forces on you.

What respite care for dementia caregivers looks like

The National Institute on Aging describes respite as short-term relief that can last a few hours or several weeks, at home, in a care facility or at an adult day center. In practice there are four kinds.

• In-home respite. A paid aide or companion comes to the house. The Alzheimer's Association lists companion care, help with bathing and dressing, homemaker help and skilled nursing among the options. This is the easiest start for a parent who hates leaving home.
• Adult day programs. Your mom goes to a center during the day for activities, meals and supervision. Many offer transportation. Some are built for people with dementia.
• Overnight or residential respite. A short stay in a care community that keeps a room for it. This is how you get a weekend away, or a week to recover from surgery.
• Family, friends and volunteers. A neighbor who sits with her Tuesday afternoons is respite too. The NIA notes this kind often costs nothing.

How to get respite care

Start with these steps, in this order. Most take one phone call each.

1. Call the Eldercare Locator at 1-800-677-1116, or search at eldercare.acl.gov, and ask for your mom's Area Agency on Aging. That office knows which respite programs, adult day centers and caregiver support funds serve her county.
2. Ask the agency three questions: what respite is available, whether any of it is free or subsidized, and whether there's a waitlist. If there is a waitlist, ask them to add her today.
3. Use the Alzheimer's Association Community Resource Finder or call its 24/7 Helpline at 1-800-272-3900. The NIA also points to the ARCH National Respite Locator Service at archrespite.org.
4. If she has Medicaid, call her state Medicaid office or her case manager and ask whether her plan or a waiver program covers respite or adult day.
5. If she's a veteran or he was, call the VA. See the section on VA respite below.
6. Ask her doctor's office for a social worker. Clinic social workers often know which local programs actually answer the phone.

Does Medicare pay for respite care?

Only in one situation: when your parent is enrolled in hospice. Medicare.gov says you may pay 5% of the Medicare-approved amount for inpatient respite care, short-term care to give the caregiver a rest, and that your copay can't be more than the inpatient deductible. The NIA says Medicare covers most of the cost of up to five consecutive days of respite for a person in hospice, in a hospital or skilled nursing facility. The hospice arranges it, and it's meant to be occasional, not every month.

Outside hospice, Medicare doesn't pay for respite. Medicare.gov says Medicare doesn't pay for long-term care, and it lists adult day health care and help with bathing and dressing as long-term care. That covers in-home respite at home, respite in a nursing home and most adult day programs. If your mom has a Medicare Advantage plan, call the plan and ask whether it offers any in-home support benefit. The answer varies by plan.

If your parent is getting close to that stage, the guide on hospice for dementia explains when to ask for an evaluation.

Other ways to pay

Professional respite is usually charged by the hour or by the day. The NIA lists what can help:

• Medicaid. The NIA notes that Medicaid may help pay. What it covers depends on the state, so ask her state Medicaid office about respite, adult day and in-home help by name.
• Sliding-scale fees. The Alzheimer's Association says many adult day centers charge according to income. Ask for the sliding-scale rate by name.
• Long-term care insurance. Some policies cover respite. Call the insurer and ask.
• Grants and scholarships. The Alzheimer's Association suggests looking for scholarships and government programs. Your Area Agency on Aging and local Alzheimer's chapter will know what's open.
• Siblings. A brother who can't give time can pay for four hours of aide time a week. Name the dollar amount when you ask. The guide on siblings who don't help has scripts for that call.

VA respite care

If your parent is an enrolled veteran, VA.gov says respite can come as a home health aide at the house, an adult day health care center or a short nursing home stay, either in a VA Community Living Center or a community nursing home. Veterans qualify if they meet the clinical criteria and the service is available where they live. A copay may apply depending on disability status and income. Call the VA social worker or case manager and ask to complete VA Form 10-10EC, the application for extended care benefits.

What to say to your mom

Most people with dementia say no to anything that sounds like being watched. Don't ask permission in a way that invites no, and don't explain it as a break for you. Keep it short and confident.

More lines that work:

• For adult day: "The center needs volunteers on Mondays and Wednesdays, and they asked about you."
• For a short stay: "The doctor wants you somewhere with a nurse for a few days while they fix the heat at home."
• When she says she doesn't need a babysitter: "I know you don't. I just like knowing someone's here when I can't be."
• To yourself, in the car afterward: "She's safe, she's fed, and I get four hours."

If a fib bothers you, the guide on therapeutic lying has a test for when it's kind.

Making the first break go well

The first few times are often bumpy. The Alzheimer's Association says some people resist adult day at first and then look forward to it after several weeks, and it suggests going at least twice a week for a month before you judge. That's a real trial. One awful Monday isn't.

Take Gina, whose mother cried at the adult day door for the first week and called her "a traitor" in the car. Gina kept the schedule. By week three her mom had a regular seat next to a retired teacher and started asking whether it was a "center day."

Before the first visit, write one page about your mom and hand it to whoever covers:

• What she likes to be called, and who's in the photos on her wall.
• What calms her: music, a snack, folding towels, a walk to the mailbox.
• What sets her off, and the time of day she gets restless.
• Her medicines, her doctor's phone number and yours.
• What to say when she asks for you or wants to go home.

Then use the time for yourself, not for her errands. A break spent at the pharmacy is a shift change.

When respite isn't enough

Respite helps you keep going. It can't fix a situation where she needs supervision around the clock and you're the only one awake. If you're using every break to sleep, or she's getting out of the house at night, or she's too heavy for you to help up after a fall, that's a sign the plan needs to change. The guide on when it's time for memory care lists the signs.

If you're juggling a job too, caregiving and your job covers FMLA and how to talk to your manager.

Questions caregivers ask

How do I get respite care for an elderly parent with dementia?

Call her Area Agency on Aging through the Eldercare Locator, 1-800-677-1116. Ask what respite and adult day options serve her county, which are subsidized, and how long the waitlist is. Then book a short trial.

Does Medicare pay for respite care at home?

No. Original Medicare doesn't pay for in-home respite or companion care. Its only respite benefit is inside hospice, and that's an inpatient stay of up to five days that the hospice arranges.

How much does respite care for dementia patients cost?

It depends on the type and the place. Aides are usually billed by the hour, and adult day and overnight stays by the day. Ask each provider for its rate, any sliding scale, and what happens if she needs more help than expected.