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Respite Care for Alzheimer’s and Dementia Caregivers

Last Updated: August 03, 2020

 

“Respite” care is temporary care provided for your loved one by someone other than yourself. It gives you a break from constant responsibility as a caregiver.

The number of unpaid American caregivers of persons with Alzheimer’s disease and related dementias is greater than 16 million. Caregivers, especially those who may work part- or full-time, benefit greatly from the use of supportive services such as respite care, which can be provided for a couple of hours, overnight, a few days, or even a few weeks. On this page, we describe all the options and discuss how to cover costs.

It’s important to begin thinking about respite care before your family and especially you, as caregiver, become exhausted and/or frustrated. Caregivers need time for self care to prevent burnout (see below). Learn more about care for caregivers.

 

Types of Respite Care

In-Home Respite Care

In-home respite care, sometimes called in-home assistance or companionship, is a service where someone from outside the home comes to watch and care for your loved one in your absence. These companion aides, personal care assistants, and home health aids can assist your loved one with activities of daily living (ADLs), such as bathing, dressing, and eating. They also will usually help with minor household chores, such as laundry and meal preparation.

Formally, professional aides and home health aides (available through government or community agencies) provide in-home respite care. Informally, respite care can be provided by a friend or family member who agrees to care for your loved one while you take a break from caregiving duties. Do not be shy about asking someone you trust to watch your loved one; in these difficult times, friends and family are often looking for ways to help.

Make sure that the person providing care has a good understanding of Alzheimer’s disease and dementia. You should also let your respite caregiver know what to expect from your loved one in terms of their likes, dislikes, strengths, and weaknesses. Some caregivers find it helpful to prepare a few activities beforehand, such as looking through photos or listening to music to provide structure and make the time spent together go more smoothly.

 Respite Care for Emergencies: If a caregiver has an emergency and needs to leave their loved one at home, you need to know who to call. In-home caregivers should be aware that you may call at any time in an emergency. If you don’t have in-home caregiving, have someone who knows the person well enough to help. Prepare written information like daily routine, functional ability, and medications, just in case.

 

Adult Day Respite Care

Adult day care offers daytime supervision for elderly frail adults, as well as persons with dementia. Care can be provided anywhere from a few hours during the day to the entire day. Meals, snacks, activities, supervision, and personal care assistance are provided. Some adult day care centers even offer transportation to and from the adult day care facility.

Adult day care is great for caregivers who work part- or full-time, or simply need some downtime. However, it’s important that you choose an adult day care facility that understands the needs of persons with dementia. Learn more about adult day care here.

 Did You Know? Studies have shown that a benefit of respite care is to “help caregivers emotionally and physically reset through the transitions resulting from their family member’s dementia.” Bottom line: respite care makes you a better caregiver. 

 

Residential Respite Care

Whereas in-home services can provide respite care for a few hours a day or even a couple of days, residential respite care, sometimes called short-term assisted living, is an option that provides professional care for a longer period of time. For instance, residential respite care can be provided for as long as a couple of weeks. This kind of overnight respite care often takes place in assisted living or nursing homes, but there are also boarding houses that offer temporary services.

Residential respite care can be an important service for families who are finding themselves stressed or burdened and need an extended break or vacation.

Remember that new places and routines can be distressing for persons with Alzheimer’s disease or dementia. If you do choose to use overnight respite care, be sure the facility appreciates your loved one’s needs and that your loved one has some familiar items with him or her during the stay.

 Did You Know? Respite care is a good way to prepare someone for moving into assisted living, especially assisted living with memory care where staff is specially trained to help people with dementia. Occasionally staying at a residence for a day or two before moving in full-time can help your loved one get familiar with the place and ease the transition of fully moving in

 

Cost of Respite Care

Family, friends, and neighbors may be willing to provide respite care without payment. In addition, there are some volunteer organizations that offer free respite care. There is also financial assistance available through local, state, and federal organizations. (Learn more below in the next section). When payment is required for respite care, the cost varies widely. For instance, the nationwide average for in-home respite care is $20-$21/hour, for adult day care the average cost is $72/day, and for residential respite care, such as assisted living, the average cost is approximately $125/day. Please note: The cost of care varies greatly based on the state in which one resides, and even varies based on one’s geographic location within the state.

 

Paying for Respite Care

While not everyone can afford respite care, you may be able to find financial assistance through the Veterans Administration (VA), Medicaid, or other state and federal financial programs, such as the Older Americans Act (OAA).

Medicare

Medicare is health insurance for all persons who are 65 years of age and older and is not income-based. Said another way, anyone who meets the age requirement (and pays the premiums) may receive Medicare, which offers hospital, medical, and prescription drug coverage. (Most people don’t have to pay for the hospital portion of Medicare).

Medicare does not typically cover respite care, except under the hospice care benefit. This means Medicare is not a suitable option for paying for respite care for persons with dementia, except in the very last stage when there are 6 months or less to live.

 

National Family Caregiver Support Program

The National Family Caregiver Support Program (NFCSP) provides grants to every state for supportive services, including respite care, to assist unpaid caregivers in keeping their loved ones at home. Unpaid caregivers (18 years of age and older) of persons with Alzheimer’s disease and other dementias are eligible to receive assistance, generally in the form of respite care vouchers that can be redeemed for a specific number of respite care hours or a set amount of dollars to go towards the cost of care. Respite care can be provided in one’s home, in an adult day care facility, or overnight in a residential care facility. Respite care may also include personal care assistance, meal preparation, and light housekeeping.

While often respite care through NFCSP is available without a fee, some families may have to pay a share of cost based on their income. NFCSP is administered by local Area Agencies on Aging (AAAs), sometimes called Aging and Disability Resource Centers (ADRCs) that combine resources from the federal government’s Administration for Community Living, Medicare, Medicaid, and the Veterans Administration. To learn more about this program, contact your local AAA / ADRC.

 

Lifespan Respite Care Program

While not available in all 50 states, the Lifespan Respite Care Program currently provides federal grants to 37 states (and the District of Columbia) to provide respite care for unpaid caregivers of persons with disabilities and special needs, which may include persons with dementia and Alzheimer’s disease. The grants are given to state agencies that work with non-profit organizations to provide this caregiver service.

The respite care – which can be provided in one’s home, an adult day care facility, an assisted living facility, or a nursing home – can be scheduled in advance or be provided on an emergency basis. Please note, specific details regarding benefits and eligibility requirements may vary based on the state in which one resides. (For information, find your state at this link.) Like with the National Family Caregiver Support Program, the Lifespan Respite Care Program is funded by the U.S. Department of Health and Human Services’ Administration for Community Living. For more information and to find out if your state has a Lifespan Respite Care Program, click here.

 

Senior Corps

This is a nationwide program of volunteers who are 55 and older. Through Senior Corps’ Senior Companion Program, volunteers provide companionship, assistance with minor household tasks, transportation to doctor appointments, and breaks (respite care) for primary caregivers of frail elderly persons and those with disabilities including dementia. In most cases, volunteers visit once a week. Senior Corps is a great option for people who need an occasional mental-health break from caregiving.

To find out if your area offers a Senior Companion Program, click here.

 

VA Respite Care

The Veterans Administration offers up to 30 days of respite care for all veterans enrolled in VA Health Care who meet specific requirements, such as having a chronic condition that requires a nursing home level of care. In most cases, individuals with mid- to late-stage Alzheimer’s disease or a related dementia meet this requirement. Respite care provides supervision, companionship, assistance with bathing, dressing, mobility, transitioning (for instance, from the bed to a chair), preparation of meals, and medication management.

Respite care can be provided in the veteran’s home by a home health aid, in an adult day care center, or in a veteran’s nursing home facility or medical center. Respite can be taken intermittently or all at one time. There is no cost for the first 22 days of respite care, and after that there may be a co-payment.  To learn more about VA respite care, contact your local Veterans Health Administration by clicking here.

 

Medicaid

Medicaid is a federal- and state-funded healthcare program for low-income persons of all ages. While the government sets parameters for the program, each state runs their own Medicaid. Most state Medicaid plans will cover the cost of in-home personal care assistance, which can serve as a form of respite care. However, in addition to a state’s regular Medicaid program, which is an entitlement program (anyone who is eligible will receive services), many states also have Home and Community Based Services (HCBS) Medicaid Waivers. These waivers provide services including in-home personal care attendants, adult day care, and residential respite care for persons who need long-term care, including those who have been diagnosed with Alzheimer’s disease and related dementias.

All of these services provide supervision to keep persons with dementia safe; assist with activities of daily living (ADLs) such as bathing, grooming, eating, and toiletry; and allow primary caregivers a break from providing care. Unfortunately, HCBS Medicaid Waivers have enrollment caps, which may mean a waitlist for services may exist. However, it is important to note, there is no waitlist for personal care assistance when it is available through one’s regular state Medicaid program. To learn more about the state Medicaid plan and HCBS Medicaid Waivers in the state in which you reside, find your state at this link.

 

Supplemental Security Income

For lower-income people who rely solely on Social Security, or whose retirements or savings are not enough to live on, more money is available through Supplemental Security Income (SSI). A person qualifies for SSI based on an evaluation of income and assets. Managers working for the program determine what your monthly budget should be, and then use SSI to cover the gap between the amount a person receives in Social Security and the amount that person actually needs to live. One of the costs SSI might cover under “home health care” is respite care, but to find out you need to work with the agency, which offers an online Benefit Screening Tool to get started.

 

Other Options

In addition to the above-mentioned options for paying for respite care, local charitable organizations and religious groups in one’s area may offer respite care (companionship care) on a voluntary basis or a sliding scale. The best strategy for finding these programs may be to simply start making phone calls to any agency you think might help. Contacting all the above agencies and asking for other options will take a lot of time and questions, but surprising sources of help might come up.

 

Finding Respite Care


For assistance finding respite care, make sure to go to the ARCH National Respite Network and Resource Center website. In addition, your local chapter of the Alzheimer’s Association may be able to assist in finding financial assistance for respite care for your loved one with Alzheimer’s disease. Other good resources for finding respite care are one’s local Area Agency on Aging office and the Eldercare Locator.