Jan. 15, 2003

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Tough decisions: Choosing a home for family members with Alzheimer's

By Anissa Anderson Orr

Sometimes I drive past the modest ranch house on Maple Street in the suburb of Houston where my grandmother lived for nearly 30 years. I stop and half expect Nana to pop her head out of the door, wave her arms and yell, "yoo-hoo!" in her characteristic high-pitched squeal.

Here in my idling car, I feel closer to the woman I loved who gave me candied orange slices and made my favorite pimento cheese sandwiches, than when I hold her hand in the nursing facility where she now lives. These days she doesn't always know where she is, or who I am. But if I stay long enough and she has a moment of clarity. She remembers. That's when she asks to go home.

We always leave feeling sad and guilty, like many families of Alzheimer's patients. But deep down I know that my family did the right thing when they moved her here. She needs the kind of help that only a care facility specifically designed for Alzheimer's patients can provide.

Placing a loved one in a care facility is one the most difficult decisions families of people with Alzheimer's will ever make. Finding the right facility can be just as difficult. Choices in senior housing abound -- from facilities that feature golf courses, trips to casinos and luxurious apartment suites --to traditional nursing homes.

But some facilities are better equipped to deal with the special problems that Alzheimer's patients may face, such as anxiety, wandering, unpredictable behavior and the inability to perform everyday tasks.

Mary Kenan, PhD

"A facility may offer a full calendar of activities to stimulate the mind, but that doesn't help if the patient can't remember where and what time the events are held, or how to get to them," said Mary Kenan, PhD, a psychologist with the Alzheimer's Disease Research Center at Baylor College of Medicine in Houston. "People with Alzheimer's disease need structure and routine so that they know what to expect."

When shopping for a care facility, Kenan recommends first determining the level of care your loved one may need, keeping in mind that Alzheimer's is a progressive disease that destroys the brain. The duration of Alzheimer's disease may vary from three to 20 years. The disease affects memory and thinking skills first, eventually killing cells in other regions of the brain. Eventually, the Alzheimer's patient will need complete care.

Before choosing a facility, Kenan recommends a thorough tour to observe how the residents look and act. Talk to residents and their families to see how they like the environment and staff. Visit the facility at different times of the day. Do the residents look engaged, cared for, and mentally stimulated? Are residents participating in activities? Do staff members address residents by name?

"The best facilities for patients with moderate to severe Alzheimer's disease focus on patient safety and comfort while providing opportunities for socialization and structured activity," Kenan said.

Safety is one of the most important requirement families should look for when choosing a home for a loved one with Alzheimer's. Facilities should be designed to prevent patients with advanced Alzheimer's from wandering. Staff should keep dangerous substances such as cleaning products and medications out of reach from residents, since they could be swallowed.

The physical design of the facility designed for Alzheimer's patients should be uncluttered and well lit to reduce confusion. Toilets should be easy to find. Distances between bedrooms and activity rooms also should be short to reduce the chances that residents get lost. Staff should be specially trained to care for Alzheimer's patients. Good activities for residents with moderate stages of the disease include music, therapeutic exercise and art projects. Pet therapy and other activities that involve tactile senses help patients with later-stage dementia.

Facilities for Alzheimer's patients should also provide access to specialty physicians including neurologists, geriatricians, psychiatrists and pharmacists who understand the care and treatment of Alzheimer's disease.

For additional help, the Centers for Medicare and Medicaid Services offers a Guide to Choosing a Nursing Home. To order a free copy of the guide, call 1-800-MEDICARE or download it at www.medicare.gov. The Medicare website also provides inspection data for nursing homes and allows comparisons of nursing homes.

"It is important for the patient with Alzheimer's to be an active participant in choosing where they will live, if possible," Kenan said. "Patients and families should begin planning for the future together in many ways once a diagnosis of Alzheimer's disease is made. This often includes discussing options for immediate and long-term care. Consulting with professionals such as psychologists, social workers and counselors who deal with placement issues and participating in a support group can help during this difficult time."

Types of care facilities:

• Independent living facilities, or retirement communities, cater to seniors who are still able to care for themselves. Some communities offer special services to seniors such as shopping and help with cleaning.
  
• Assisted living facilities help residents bathe, dress, use the bathroom and take medicine. Units designed specifically for those with Alzheimer's disease safeguard the resident and provide 24-hour supervision and care.
  
• Nursing homes also provide 24-hour care for those needing room, meals, activities and some personal and medical care. However, not all meet the security needs of patients with Alzheimer's disease.
  
• Continuing care retirement communities offer more than one kind of housing and different levels of care allowing residents to move from one level to another as their needs change.

© Copyright 2003 Baylor College of Medicine. All Rights Reserved. MLE.