“Respite” care is care temporarily provided to your loved one by someone other than yourself in order to give you a break from having constant responsibility as a caregiver. According to the Alzheimer’s Association (2018), the number of unpaid American caregivers of persons with Alzheimer’s disease and related dementias is greater than 16 million. These caregivers, some of who may work part or full-time, can benefit greatly through 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.
It’s important to begin thinking about respite care before your family and you, the caregiver, become completely exhausted and / or frustrated. It’s imperative that caregivers take time for self care to prevent burnout. Learn more about care for caregivers.
In-home respite care, sometimes called in-home assistance or companionship, is a service where someone from outside the home comes to your home to watch and care for your loved one in your absence. Additionally, these companion aides, personal care assistants, and home health aids, are often available to help with minor household chores, such as laundry and meal preparation. They can also assist your loved one with activities of daily living (ADLs), such as bathing, dressing, and eating. Many caregivers use this form of respite care as a way to have a couple of hours to themselves to run a few errands or to relax. In addition, live-in caregivers can also provide in-home respite care, allowing family caregivers to take a vacation or simply have some downtime for a few days to prevent caregiver burnout. Formally, professional aides and home health aides, who are 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.
Whether a professional or family friend, 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 and dislikes and their strengths and weaknesses. Some caregivers find it helpful to prepare a few activities beforehand, such as looking through photos or listening to music. These activities can provide structure and make the time spent together go more smoothly for your loved one and their companion.
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 is provided. Some adult day care centers even offer transportation to and from the adult day care facility. Adult day care is a great care option 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.
Whereas in-home services can provide respite care for a few hours a day or a couple of days, residential respite care, sometimes called short-term assisted living, is an option that can 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 dedicated units in hospitals or nursing homes, but there are also boarding houses in some areas that offer temporary services. Residential respite care can be an important service for families who are finding themselves stressed or burdened and need to take 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 that the facility appreciates your loved one’s needs and that your loved one has some familiar items with him or her during the stay.
Family, friends, and neighbors may be willing to provide respite care without payment. In addition, there are some volunteer organizations that provided respite care free of charge and there is also financial assistance available through local, state, and federal organizations. (Learn more below in the next section). However, when payment is required for respite care, the cost can vary widely. For instance, the nationwide average cost 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 within the state, the cost can vary greatly based on one’s geographic location within the state.
While not everyone can afford the cost of 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 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 may receive Medicare, which offers hospital, medical, and prescription drug coverage, given persons pay the premiums associated with the healthcare. (Most people don’t have to pay for the hospital portion of Medicare). While many people may think of Medicare as an option to pay for respite care, Medicare does not typically cover this type of care. In fact, the only time respite care is covered is under the hospice care benefit. This means Medicare is not a suitable option for paying for respite care for persons in early-mid stage dementia, or in most cases, even at the beginning of late-stage dementia. Rather, it is only suitable for persons in end-stage dementia who have 6-months or less to live.
The National Family Caregiver Support Program (NFCSP) provides grants to each of the states 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 assistance is in the form of respite care vouchers, and the vouchers can be 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 housecleaning. 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. This program is funded through the U.S. Department of Health and Human Services’ Administration for Community Living and is authorized by the Older Americans Act (OAA). Generally, NFCSP is administered by local Area Agencies on Aging (AAAs), sometimes called Aging and Disability Resource Centers (ADRCs). To learn more about this program, contact your local AAA.
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. 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.
This is a nationwide program of volunteers who are 55 years of age and older, and through Senior Corps, there is a Senior Companion Program. Through this program, volunteers provide companionship, assistance with minor household tasks, and transportation to doctor appointments, and provide breaks (respite care) for primary caregivers of frail, elderly persons and those with disabilities, which may include persons with dementia. In most cases, volunteers visit once a week.
To find out if your area offers a Senior Companion Program, click here.
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-late stage Alzheimer’s disease or a related dementia meet this requirement. With respite care, supervision, companionship, assistance with bathing, dressing, mobility, and transitioning (for instance, from the bed to a chair), preparation of meals, and medication management is provided. 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, and respite can be taken intermittingly or all at one time. There is no cost for respite care 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 is a federal and state funded healthcare program for low-income persons of all ages, and while the government sets parameters for the program, each state runs their Medicaid program as they see fit within the given parameters. 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, such as in-home personal care attendants, adult day care, and residential respite care, for persons who require 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 daily living activities, 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, click here.
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.