Alzheimer’s respite program is good for the community

Speedy response, backup support required

With grant funding from a community foundation, an Alzheimer’s Association chapter and private duty provider joined forces to develop an emergency respite program for Alzheimer’s patients and their caregivers.

The Alzheimer’s Association of Northeastern Wisconsin and Extended Family Inc. in Neenah and Appleton, respectively, recognized the difficulties families of Alzheimer’s patients face when the patient’s primary caregiver can no longer care for their loved one. Other family members may be willing to take over but can only do so after making arrangements to be absent from their own families, workplace, and other obligations, all of which can take time. Meanwhile, the family needs someone to step in and find care for the Alzheimer’s patient, explains Kim Marheine, MSE, RMT, program specialist for the Alzheimer’s Association.

Enter the Emergency Dementia Service (EDS). Modeled after a similar program in the Milwaukee area, it makes emergency placements for Alzheimer’s patients whose primary caregivers suddenly become unable to care for them. The program received initial funding in 1997 that has been renewed through November 1999.

The EDS began by blanketing the community with flyers announcing the program. The flyers were distributed to all nursing homes, group homes, emergency rooms, assisted living facilities, physicians with large geriatric practices, home care agencies, police and fire departments, and special care units in the program’s three-county (Outagamie, Calumet, and Northern Winnebago) service area.

They outlined the criteria for the program, the services offered, and gave instructions about accessing it. The flyer also emphasized that grant funding was available to pay for services provided under the program.

At the same time, the Alzheimer’s Association began an education campaign among providers and Alzheimer’s families. "We provide technical assistance to facilities. Some don’t understand that they have Alzheimer’s patients, and they require a unique environment, staffing, and supervision," Marheine explains.

Criteria for the program include:

    • Patient is over 60 years old with a diagnosis of Alzheimer’s disease or related dementia.

    • Family resides in Outagamie, Calumet, or Northern Winnebago counties.

    • The patient has a primary caregiver, but suddenly experiences a temporary or permanent loss of caregiver support due to illness, hospitalization, death, or out-of town travel.

    • Patient has a primary physician.

    • The caregiver or other responsible party is available to give informed consent to participate in the program.

Making life easier

EDS emphasizes a sudden loss of caregiver support and an immediate need to place the Alzheimer’s patient. For example, a caregiver who found out on Monday that he would require surgery on Friday would not qualify for the program because of the several days it takes to make arrangements for his loved one, Marheine explains. The association has two other grant projects to deal with planned absences and purchasing items that make life easier for Alzheimer’s families.

Families may directly access the service, or health care facilities may do so on their behalf. Calls go to Extended Family as the project case management service. So far, Larson has personally handled each case.

After receiving the referral call, Larson makes an on-site assessment of the situation. She determines the best type of placement given the patient’s status, the nature of the caregiver’s problem, and available family support. For example, if a patient had more acting out behaviors, such as yelling or pacing, she would likely arrange for home care rather than adult home placement.

The pre-implementation provider education paved the way for smooth and speedy placements despite sometimes-missing information such as a complete medical history and full dementia assessment, Larson says.

Most of the calls occur early in the morning, and take from one to four hours of Larson’s time. "You need someone who can respond at the drop of the hat, and you have to have backup," she says.

Prompt response is critical. In one situation, a husband-caregiver broke his leg and was transported to the hospital along with his wife. Although Larson went to the emergency room as soon as she received the referral call, they already had problems with the discharge planner trying to get them home, she says. Larson placed the wife in a local group home until the husband recuperated enough to resume caregiving.

Larson charges a discount off her normal $60 case management fee for program participants. Although grant money is available to offset both the case management and placement charges, most families either have insurance coverage or pay out-of-pocket for the services, according to Larson. "We expected high costs and that it would require a longer placement time," she says.

Families who access the EDS program are "incredibly appreciative for someone who is there and can help put the pieces together," Larson says. However, not that many have taken advantage of it. A concerted education campaign by the Alzheimer’s Association to increase families’ awareness of the importance of advance planning and developing backup resources has paid off, according to Marheine. EDS program education may also have increased community providers’ willingness to offer more affordable short-term service packages.

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Jan Larson, RN, MSN, CCM, President, Extended Family Inc., 1716 Hycrest Drive, Appleton, WI 54914. Telephone: (920) 749-1117.

Kim Marheine, MSE, RMT, Program Specialist, Alzheimer’s Association of Northeast Wisconsin, 201 E. Bell St., Neenah, WI 54956. Telephone: (920) 727-5555.