Dolores Rogers was well into the early stages of Alzheimer's disease two years ago when a young relative announced she was getting married. Rogers wanted to attend. The problem was, the wedding was in Minneapolis and she lives in Louisiana.
For many Alzheimer's patients, travel is one of the first activities to go, especially air travel, because they struggle to navigate the hassles and time demands.
But Rogers' daughter, Pam McKee, figured they both could use the break from the stressful daily routine of dealing with the disease. Because Rogers, 82, wasn't showing the agitation and combativeness common in some patients, the trip seemed doable.
"All of her relatives are in Minnesota, and we always went there on vacation when I was a kid," says McKee, 51. "I knew it would be her last time to go."
So McKee booked the most direct flight from New Orleans to Minneapolis she could find, made sure their seats were together, and once there made daily preparations such as laying out her mom's outfit for the next day on the night before. For 10 days, they visited and stayed with relatives.
Rogers reveled in it while McKee found bits of time for relaxation. Mostly, they were mother and daughter again, not patient and caregiver.
"She seemed to have a pretty good time," McKee says. "I am really glad we did it. It was worth the effort."
The Challenge: To Find Fun
Finding enjoyable moments together is a major challenge for caregivers of loved ones with Alzheimer's disease. (For suggestions for outings, please read "Activities for Alzheimer's Patients.")
It is especially difficult once patients have advanced into mid- to late-stage Alzheimer's because they can lose the ability to remember, reason, make judgment calls, even speak. Those fun things they used to do with loved ones are often lost as well.
For the caregiver, the toughest part is determining the needs of someone who has limited mobility, can't articulate his or her likes and dislikes, or can't indicate that he or she is in pain, says Jane E. Fisher, associate professor of psychology and director of clinical training at the University of Nevada, Reno.
One of Fisher's primary research interests is behavior therapy for dementia patients, and she co-edited the book "Management and Administration Skills for the Mental Health Professional" (Academic Press, 1999).
But don't assume that pleasure is impossible just because a dementia patient can't read or paint, Fisher says. Other stimuli can bring pleasure to both the patient and caregiver, particularly if the caregiver is a loved one.
Music is a good example. Indeed, the Alzheimer's Association, a national voluntary health organization, says music stirs memories and emotions, and singing encourages group activity.
Marsha Smith, 64, of Charlotte, N.C., discovered the power of music with her husband, Dick, also 64, who was diagnosed with Alzheimer's 4-1/2 years ago.
By late last year, Dick was in the middle stages of the disease and had lost interest in most activities, Marsha says. Over the holidays, they sang Christmas carols together in the car on their way to an adult day-care center. Marsha played Christmas songs at home.
"We danced to 'White Christmas' all morning on Christmas Day," she says, brightly, noting that they continue to sing in the car almost daily.
"It's something he still could do. It seemed to make him happy, and me, too, because we were interacting."
Making the Most of Good Days
McKee, Smith and others have discovered that there can be bright spots amid the despair in caring for loved ones with Alzheimer's.
They try to get the most out of their family members' remaining good days to break up the strain and inject some fun into the patients' lives.
These activities also might provide a tangible benefit for the Alzheimer's patient, making him or her feel loved and needed instead of unloved and unnecessary, even a burden, according to the Alzheimer's Association.
Activities can be as simple as reading a familiar book together or taking a short walk. Or they can involve travel, restaurant dining and group interaction, although these outings often require modifications, says Jackie Stern, director of activities and adult day programs at the John Douglas French Center for Alzheimer's Disease in Los Alamitos, California. The French Center was the first U.S. facility for long-term care and outpatient services designed specifically for patients with Alzheimer's and other dementias. It opened in 1987.
"It's going to vary, depending on each person," Stern says. "Every person has a deficit in a different area."
Issues to Consider When Choosing Activities
Stern recommends evaluating certain factors in choosing an activity:
- What are the patient's past interests? Often, a person with Alzheimer's can still take part in something he or she has enjoyed for years. But be prepared to change aspects of it, Stern says. "Many times, modifications such as the duration or setting are necessary for them to participate," she says.
- What time of day works best? A trip to a mall or walk in a park might be a disaster in the afternoon, but could work well after breakfast when the patient's energy level is higher. "If something doesn't work, put it on the back burner or try it at a different time," Stern says.
- How does the Alzheimer's patient handle crowds? "Some people, when they're in large groups, find it is too much stimulation," Stern says. "They get nervous, anxious. To go to a dinner party or movies could be hard." Avoid such scenarios if they negatively affect your loved one and instead try one-on-one activities or those done with small, more manageable groups of two or three.
- Will the caregiver feel guilty having fun? "Some people feel they're 'on the job' 24 hours a day," Stern says. "That doesn't mean they can't have fun." Light moments can do wonders for the caregiver and patient for the rest of the day.
Start Small
Above all, a caregiver trying to plan a fun activity needs to know that not everything will go perfectly, especially the first time, Stern says.
Don't be afraid to make changes. Perhaps the usual walk through the park before dinner is now too long; reduce it to a walk around the block. The weekly trip to a movie now causes too much anxiety because of crowds; try going at an off-peak hour or renting a video for home instead.
"If it doesn't go right, don't beat yourself up," Stern says. "Try small things at first. Then get better as you go along.
"At every stage of the disease, there is something you can do that is positive and beneficial for both of you."
Randy Franz is a Southern California-based freelance journalist who writes extensively about medical and health topics.
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