"I think there's a very large number of caregivers that don't even realize that they're caregivers because it's just one of those things that we do: We take care of our child with disabilities, and we take care of our parents," says Maggie Edgar, program manager of the ARCH National Respite Network and Resource Center, an organization that helps states and communities start and maintain respite services, which offer temporary care to dependent people in order to give the caregiver a rest.

While providing care can be enriching for both the caregiver and the dependent person, it's also important that the caregiver remember to pay attention to their own needs. By neglecting themselves, caregivers can end up with mental and physical health problems, which ultimately put the dependent person at risk and may result in out-of-home placement. For example, a study published in Psychological Bulletin found that caregivers of family members with dementia had more health problems, including lower resistance to viruses, than non-caregivers.

Fortunately, that's where respite care services can come in. These little-known services provide caregivers with needed breaks by providing temporary care for children and adults with special needs. In observance of National Caregiver Month, Edgar discusses the benefits that respite services offer to both caregivers and the loved ones for whom they care.

What does caregiving involve?
I think it ranges from complete care, which involves assistance with activities of daily living, such as feeding and bathing, to, as in the case of a child with emotional problems, constant supervision. For some dependant people, supervision is needed to protect them from danger, and in the case of Alzheimer's disease for example, to make sure that they don't wander off. It's also about making sure people stick to their medication schedule.

What is respite care?
We view respite as temporary relief for family caregivers. It's a service in which care is provided to individuals with disabilities or special needs, to those who have a chronic or terminal illness, or to those at risk of being abused or neglected by stressed caregivers. We see respite care as a vital part of the continuum of services for families.

What are the benefits of relieving the caregiver?
In most cases when the dependent person has severe special needs, the caregiver doesn't get much of a break from the constant supervision and caregiving activities because the dependent family member requires so much. I've heard stories of people who been in the caregiving role for 12 years without ever having a break. Respite care reduces family stress, supports family stability, prevents abuse and neglect, and minimizes the need for out-of-home placement. It provides them with an opportunity to take care of other kinds of business; they can just relax, get recharged and rejuvenated. People have reported that they also feel better about the dependent family member after they've had a break from caring for them. The relationship is less strained.

It's also an opportunity for the caregiver to get out and engage in activities that are meaningful to them, such as attending church or synagogue. It reduces isolation and stress, and it improves relationships within the family and with friends.

What are some of the common conditions affecting people who have caregivers?
Some of the more obvious ones are Alzheimer's or other related dementias in our senior citizens. We also think of people with disabilities, mental retardation and physical disabilities. There's a great need for respite in families who have individuals with mental illness or severe emotional disorders. Another use of respite is help for single parent families, or families where there is violence and/or substance abuse whose children are at high risk for abuse and neglect.

Why do caregivers need to give themselves a break?
One of the things seen in caregivers who do not get a break is health problems. These caregivers tend to not get proper sleep and maybe don't have time to exercise or eat right or do other things that promote good health. They might not be able to get out to their own doctors' appointments. This poses a real risk to the dependent family member because if the caregiver becomes ill, then who's going to take care of the dependent family member?

Caregivers also suffer from depression and isolation. There are issues involving relationships with other family members and spouses. The siblings of the child with a lot of disabilities may feel like that child gets the most of the caregiver's attention. And the caregiver might feel that way as well. Respite can help them spend time with their children who do not have a disability.

Are caregivers who are working outside the home full-time also in need of respite?
It is hard for caregivers who are working outside the home because a lot of people will say, "Oh, well, that is their respite. They get out to go to work." But if you're working all day long in a job, and then you come home and you're working all night long caring for a dependent family member, that isn't a break.

Does respite take place in the home or in an outside facility?
There are a whole variety of models of respite care; there's in-home care and there's out-of-home care. Out-of-home care refers to community-based services that are either in a facility such as a church or child-care center, or a facility specifically for respite. A nursing home or adult day care could offer respite. Summer camps are great for individuals with disabilities. So there is a wide-range of services. The defining piece is the temporary break for the caregiver. Where the services are delivered depends on the needs of the family.

How long a break is usually given?
It could be as little as a few hours a week to as much as two weeks or a month, if a family wants to go on a vacation together, for example. But it is temporary care. It's not something that's ongoing for months and months.

And there is emergency respite care that hasn't been planned in advance. It's for families at high risk of abuse and neglect. Also, if the caregiver, for example, becomes ill and there isn't anybody else to care for the dependent family member, that constitutes the need for emergency respite. Or let's say that some other family emergency comes up. Maybe there's a need to go to a funeral or to go to medical appointments or a legal appointment.

What services do respite care workers provide?
It could be anything from just companionship—sitting with someone, reading to them, having conversation with them—to assisting that person with their activities of daily living.

The respite is also something that's meaningful to the person receiving the care; it's not just a baby-sitting service. It could be taking somebody out into the community to engage in activities, maybe to a sporting event or to a park. Again, it depends on the special needs of the individual in care and what might be a developmentally appropriate activity. For example, for a teenager with disabilities, a good, developmentally appropriate activity would be going shopping at a mall with peers. For a person with Alzheimer's or dementia, that would not be a particularly good activity.

How do you find respite services?
In most cases, it's nice if people can use providers from their informal network: friends, relatives, neighbors, because they're people they know and trust. If that's not a possibility, then they should go to an agency or organization that recruits and trains providers. But we always recommend that the providers receive some kind of training, either through the organization or through the families directly, and probably a combination of both.

Expertise among respite care workers varies. It's like child care, in that some states require certification and some states, believe it or not, don't require much at all. The ARCH National Resource Center has produced best practice guidelines designed to help states and communities develop respite services.

Who is eligible for respite services?
That is a huge issue. It varies tremendously, not only from state to state but within states. There is some legislation, the Lifespan Respite Care Act of 2003, that has passed in the Senate and is still in the House that hopefully would remedy that situation. It's a really wonderful, nonpartisan bill, and we're feeling optimistic about it. The provisions in the legislation would provide for a coordinated system of accessible community-based respite care for caregivers and individuals regardless of their age, ethnicity, special need or situation. In fact, three states have passed that kind of legislation in their states.

When should a caregiver consider respite care?
The theory is that they should consider it as soon as they become a caregiver because a lot of the time people wait, then they really get stressed out, and then it's almost at the point where they feel like can't do it anymore. Then they want to look at more severe issues, like taking the dependent person out of the home, or putting them in a nursing home. If these caregivers had received respite early on and on a regular basis, they could probably keep the family member in the home for a longer period of time.

Why are some people reluctant to consider respite care?
There are a lot of issues around trust. "I'm the only one who can care for my family member." "It's my duty to do this." "If I ask for assistance, that means that I'm not doing a good job." In the case of families with young children, it may seem like they're going to lose their children because they can't cope with parenting issues. Then there's also the issue of respite just not being available. Many people are turned away every day because of a lack of availability.

Who usually pays for respite?
Families can pay for their own respite if they are able to, and, depending upon eligibility, there are a variety of funding sources. That could be Medicaid. In some cases, private insurance covers this kind of care, but not often. Some of the respite programs might have community funding or foundation funding.

Published on: November 20, 2003