Learning to Cope with a Life-Altering Disease
By Susan M. McCurry, Ph.D.
Without a doubt, caring for someone with dementia presents many unique caregiving challenges. In addition to the physical assistance many older adults need, dementia patients also can experience a range of mood and behavioral changes that leave caregivers scratching their heads on how best to manage. Dementia symptoms continually change and evolve. No sooner is one problem resolved than a new one appears. One day the demented individual responds easily to reason, and the next day they are resistant to any attempt to influence their behavior. Predictability goes out the window, and caregivers are often divided over the best way to handle the dementia patient because they act differently in each case. Such behavioral inconsistencies in a person who looks perfectly healthy are common in dementia, but they can make dementia caregiving extremely difficult. Dementia caregivers need a set of skills that can help them be more resilient, to develop creative solutions to the infinitely varied and continually surprising situations they encounter. In my research and clinical practice, I have found that the acronym D.A.N.C.E. is a useful tool for discussing these skills.
The acronym stands for
D = Don’t argue;
A = Accept the disease;
N = Nurture yourself;
C = use Creative problem-solving; and
E = Enjoy the moment.
The following scenario illustrates how each of these principles work. Margie was an 87-year-old woman with Alzheimer’s disease. In addition to memory problems, she was preoccupied with her health and called her daughter, Madeline, every day asking to go to the doctor to find out what was wrong. Although Margie couldn’t remember that she had already been to the doctor and talked to Madeline several times in the past hour, she could recall old accidents, hospitalizations, and past illnesses in vivid but incorrect detail. She was convinced that she had an undetected cancer and that her daughter and doctors were conspiring against her. Never a very happy person, Margie was now tortured by pain, fear, loneliness, and confusion. Madeline, who was caring but exhausted, desperately wanted to help but was also furious that all of her attempts to do so were forgotten and unappreciated. How might use of D.A.N.C.E. make this situation better? For Madeline, the first step was to accept her mother’s disease. Margie had always been a worrier, and her repeated requests to see her doctor for nonexistent maladies had been going on for years. It was hard for Madeline to believe that her mother wasn’t being deliberately difficult and controlling. Like Madeline, every caregiver should talk with his or her healthcare provider about the typical and atypical signs and symptoms of dementia, its progression, and available treatment options. It helps to have these conversations in private, where you can feel free to voice your concerns without embarrassing or upsetting your loved one. I also recommend scheduling a family conference with the physician or nurse so that other relatives who may not be involved in your loved one’s day-to-day care can have their questions and concerns addressed, particularly if there are differences in opinion about the diagnosis or appropriate level of care. Accessing educational resources such as the Alzheimer’s Disease Education and Referral Center (ADEARwww.alzheimers.org) and the Alzheimer’s Association (www.alz.org) provide up-to-date information about the latest breakthroughs in treating and managing dementing illnesses, and will address many typical caregiving questions about common behavioral symptoms associated with such conditions. Talking to her mother’s doctor helped Madeline recognize that Margie truly didn’t remember her repeated phone calls and demands. Margie was not capable of understanding the reassuring feedback her doctors repeatedly gave her. She was frightened and confused, and Madeline’s frustrated tone and explanations only made her mother’s emotional upset worse. As Madeline became better able to accept her mother’s diagnosis, to see that this seemingly impossible situation was dominated more by her mother’s brain disease than by her personality, Madeline stopped arguing. She no longer assumed that her mother could just “stop acting this way.” Madeline also realized that although Margie wanted to remain in her own home, it was time to look around for residential alternatives. She located a nearby assisted living facility that offered a range of services, including on-site 24-hour medical staffing and a specialized Alzheimer’s care building. When it became clear that trying to convince Margie to move wasn’t going to work, Madeline looked for a different, more creative way to introduce the idea. She discovered a comprehensive adult day program at the facility and, after visiting their music and exercise classes, liked them well enough to go back. After attending for a couple of months, Margie was familiar with the staff and felt comfortable when she walked in the door. At that point it was less difficult for Madeline to get Margie to tour the available apartments in the facility, one of which was a sunny room with a park view very similar to her bedroom at home. The move transitioned fairly smoothly thereafter. Accepting her mom’s disease also helped Madeline refocus her own caregiving values and goals. Armed with information and more realistic expectations, she became more compassionate and patient. It was still hard to listen to her mom’s repeated complaints, but knowing that Margie was in a safe place and that she didn’t remember telling the same story over and over made it easier to bear. The medical director at the assisted living facility suggested treating Margie with a low-dose medication for depression and anxiety, and after a few weeks of frequent reassuring visits to the clinic, Margie’s insistent demands to see a doctor began to diminish. Madeline had more time for herself and her husband and children, and took a much-needed vacation out of town for the first time in many years. While away, to her surprise Madeline realized she missed her mom. She returned happy to see Margie again, and took pleasure in her regular visits despite Margie’s difficult moods and preoccupations. Caring for a person with dementia takes resilience and flexibility. As one caregiver told me, it requires us to “listen from your heart, not your head.” Providing resilient care is an artful skill that can be learned and practiced, but like any skill we never do it perfectly and there will always be new challenges to overcome. Still, I knew Madeline had changed when I saw them both about six months later. When I walked into Margie’s room, she was agitated and crying that she was sick and didn’t understand why no one was helping her. Madeline sat down and put her arms around her mom, not saying a word but offering her comfort and reassurance. As Margie’s tears began to subside, Madeline pointed to the tulips blooming in the sunlight below and offered to take her mom for a stroll and some ice cream. Margie visibly relaxed, and when I left, she and Madeline were still sitting quietly together, enjoying the spring view.
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Susan M.McCurry, Ph.D., Research Associate Professor at the University of Washington, School of Nursing, and a licensed clinical psychologist. She is a fellow in the Gerontological Society of America and an expert in the development of behavioral interventions for the treatment of mood and behavior disturbances in persons with dementia and family caregivers.Her publications include the recent book,“When A Family Member Has Dementia: Steps to Becoming a Resilient Caregiver”.
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