Support groups aren’t the only source of assistance for people who are dealing with Alzheimer’s disease. Although you may still be in the early stages of Alzheimer’s and be quite functional, there may come a time when your needs—or that of your caregiver—are much greater.
One of the most important sources of assistance is respite care, a temporary source of care for your loved one with Alzheimer’s that gives you a break from your job as a caregiver. Some caregivers may feel guilty about seeking help from a respite service. And in these early stages of Alzheimer’s, you may not yet have a need for diem. But the day may come when you desperately need that break.
For the caregiver, respite care provides a break from the rigors of caregiving. Whether it’s a short trip to the supermarket, a chance to get a haircut, or simply a brief visit to the mall, that reprieve may provide a chance to recharge and rejuvenate. After all, most people do not spend all their hours with one person, much less provide that person with constant care and attention.
Respite care can also benefit the person who has Alzheimer’s. It gives him a chance to socialize with others living with the disease and to participate in activities that are safe and structured in a secure environment. It’s also a chance to experience some independence, if only for a short period. Done outside the home, it’s a chance to get outside the confines of your house and to experience a change of scenery. If respite is provided at home, it may be an opportunity to spend time with a new person who can devote all her attention to him.
Respite care may be offered at home or through community organizations or residential facilities. The respite period may last for a few hours, a full day, or overnight. Costs for respite care vary depending on the provider and the arrangement. You may also involve friends and family members as respite providers, assuming they live nearby, and are available and willing to do so.
But for people without family support or the help of friends, there are agencies that can provide respite. In general, there are three kinds of respite care. They are:
• In-home care. A trained aide comes to your home and provides different services, depending on your need. Services might include supervision, recreational activities, medical assistance, exercise, grooming, housekeeping, meal preparation, and shopping.
• Adult day centers. These centers provide Alzheimer’s patients with a place to go for activities, such as arts and crafts, music, discussions, and support groups. For caregivers who are also holding down a job, an adult day center provides a place for their loved ones to go that is safe, structured, and often home-like. Most centers also provide meals and snacks. Costs, hours of service, and weekend availability will vary depending on the center.
• Residential respite care. Some residential facilities provide overnight stays for the person who has dementia. The stay may last one night or could go on for several nights, giving the caregiver a chance for an extended reprieve.
Choosing Respite
When it comes time to select a respite service, do your homework. Call the local chapter of the Alzheimer’s Association, the Area Agency on the Aging, and other organizations that service the elderly for information on your options. Describe your situation, and tell them what you want. Find one that meets your needs, provides the hours you want, and has the services you would like for your loved one.
Some people may be concerned about the cost of respite care. While it’s true that Medicare and most insurance programs do not cover respite care, you may be able to get some financial assistance from a state or federal program such as Medicaid or the U.S. Department of Veterans Affairs.
If it’s an in-home aide you’re looking for, take the time to interview that person and assess her skills and abilities in working with someone with Alzheimer’s. Ask how they might handle various situations. Get references, and find out about her prior experience and training. And trust your instincts. If you don’t feel comfortable with someone, ask for another aide. You may need to interview a few before you find one you like.
If you’re choosing an adult day center, make sure to stop in first for a meeting with the staff and to see the center itself. Find out the activities and programs they offer, whether they provide meals and snacks, and what the hours are. You should also ask about safety and how they handle emergency situations. If you have the time, arrange to participate in a program.
If it’s a residential facility, you’ll need to interview the staff, too and make sure the environment is suitable to your loved one’s needs. What kinds of activities and programs do they offer? How are medications monitored? How many staff members are available to tend to the residents? How many other residents are there usually? You should also ask for a tour of the facility. Try to assess its cleanliness, the involvement of the staff, and how the residents are doing.
Easing Into Respite
When you involve respite care, it’s important to prepare both the aides and staff and your loved one to accept and hopefully embrace, this new arrangement. Tell the aide about your loved one, his background, his preferences, and his quirks. Don’t be shy about revealing troubling behaviors that they should know about. Most aides, especially those who have worked with Alzheimer’s patients in the past are well aware of unusual behaviors and quirks in people who have dementia.
You also need to explain respite to your loved one. If your loved one is capable, involve him in the decision. But if not, it will be up to you, the caregiver, to find good respite care and to explain it to your loved one. Keep the explanation short and simple, and provide only as much information as is necessary. If you sense resistance, you may want to tell your loved one that the aide is a friend who is helping around the house, and arrange to stick around the first few visits until both people are more comfortable. If he is going to an adult day center, you might say that he is going there to work as a volunteer or to describe it as a social club. By giving it a more positive spin, you may find that your loved one is more willing to go along.