“Respite” care is temporary care provided for your loved one by someone other than yourself. It gives you a break from the constant responsibility of being a caregiver.
The number of unpaid American Alzheimer’s and dementia caregivers exceeds 16 million. Caregivers, especially those who work, benefit from the support of respite care. That means that you can get help for a couple of hours, overnight, a few days, or even a few weeks. On this page, we describe the available options and discuss how to cover the costs.
It’s essential to think about respite care before you and your family are exhausted and frustrated. Caregivers need time for self-care to prevent burnout. Learn more about care for caregivers.
In-home respite care is also called in-home assistance or companionship. This is a service where someone from outside the home comes to watch and care for your loved one. 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 preparing meals.
Formally, professional aides and home health aides (available through government and 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. Many 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 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. Common examples are going through photos or listening to music to provide structure and make the time spent together go smoothly.
Adult daycare offers daytime supervision for elderly frail adults, as well as people 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 daycare is a supportive option for caregivers who work part- or full-time, or simply need some downtime. You must choose an adult daycare facility that understands the needs of persons with dementia. Learn more about adult day care here.
In-home services provide respite care for a few hours a day or even a couple of days whereas residential respite care is an option that provides professional care for a longer time. This type of care is also called short-term assisted living. 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.
Remember that new places and routines can be distressing for people with Alzheimer’s disease or dementia. If you do choose to use overnight respite care, make sure the facility appreciates your loved one’s needs and that your loved one has some familiar items with them during the stay.
Family, friends, and neighbors may be willing to provide respite care without payment. In addition, some volunteer organizations 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. The nationwide average for in-home respite care is:
– $25-35 per hour for adult day care with an average daily cost of $85
– $150 per day for residential respite care, such as an assisted living facility
Keep in mind the cost of care varies greatly based on many factors including which state one resides in and the geographic location within the state.
There are resources available to help make the cost of respite care affordable. 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 people who are 65 years of age and older and eligibility is not income-based. That means that anyone who meets the age requirement and pays the premiums may receive Medicare. Benefits include 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 as a hospice benefit. This means Medicare is not a suitable option for paying for respite care for patients with dementia, except in the very last stage when there are 6 months or less to live.
The National Family Caregiver Support Program provides grants to every state for supportive services. That includes respite care for assisting unpaid caregivers in keeping their loved ones at home. Unpaid caregivers who are at least 18 years old can help with Alzheimer’s and dementia patients who are eligible to receive assistance. Generally, this is in the form of respite care vouchers that can be redeemed for a specific number of care hours or a set amount of dollars to go towards the cost of care. Respite care can be provided in one’s home, an adult day care facility, or overnight in a residential care facility. Respite care may also include personal care assistance with activities of daily living, meal preparation, and light housekeeping.
Often respite care through National Family Caregiver Support Program is available without a fee but some families might have to pay a share of the cost based on their income. National Family Caregiver Support Program is administered by local Area Agencies on Aging (AAAs), sometimes called the Aging and Disability Resource Centers (ADRCs). They 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 Area Agencies on Aging.
While not available in all 50 states, the Lifespan Respite Care Program currently provides federal grants to 37 states and the District of Columbia. They provide respite care for unpaid caregivers of people with disabilities and special needs, which can include people with dementia and Alzheimer’s disease. The grants are given to state agencies that work with non-profit organizations to provide this caregiver service.
Respite care can be provided in different settings. It can be provided in one’s home, an adult day care facility, an assisted living facility, or a nursing home. Additionally, it can be scheduled in advance or be provided on an emergency basis. 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. The National Family Caregiver Support Program and the Lifespan Respite Care Program are 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 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 and elderly people including those with disabilities and 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.
The Veterans Administration offers up to 30 days of respite care for all veterans enrolled in VA Health Care. This is for people 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 related dementia meet this requirement. Respite care includes:
– Assistance with bathing
– Transitioning (for instance, from the bed to a chair)
– Preparation of meals
– Medication management
Respite care can be provided in the veteran’s home by a home health aid, in an adult day care center, or a veteran’s nursing home facility or medical center. Respite can be taken intermittently or used 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 is a federal- and state-funded healthcare program for people of all ages who have limited income. While the government sets parameters for the program, each state runs its own Medicaid program. Most state Medicaid plans 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 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 people who need long-term care. That includes those who have been diagnosed with Alzheimer’s disease and related dementias.
All of these support services provide:
– Supervision that keeps people with dementia safe
– Assistance with activities of daily living (ADLs) like bathing, grooming, eating, and toiletry
– Primary caregivers a break from providing care
Unfortunately, HCBS Medicaid Waivers have enrollment caps, which may mean a waitlist may exist. However, 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.
For individuals with lower income 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). To qualify for SSI, the requirements are 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 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.
In addition to the already mentioned options for paying for respite care, local charitable organizations and religious groups in one’s area may offer respite care (companionship care) voluntarily or on 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 you might find surprising sources of help.
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.