Dos & Don’ts of Compassionate Care
Never Argue, Always Agree
The decision to seek Alzheimer’s care outside the home is a personal one for the individuals and families involved. No doubt your greatest concern is your husband’s well-being. As a loving wife your first inclination is to care for him yourself. But the reality is, Alzheimer’s disease places incredible demands on caregivers, eventually requiring their attention 24 hours a day. The result is that more than 40% of Alzheimer’s caregivers rated their stress as “high” or “very high” in a national study. Even more ominous, over 30% showed signs of clinical depression.
Because caring for a family member with Alzheimer’s is such an arduous task – both physically and mentally – the decision to seek outside help is often influenced as much by the health and well-being of the caregiver, as by the person with the disease. Bottom line: When the physical and social needs of your loved one become more than you can satisfy in the normal functioning of your daily life, it’s time to look for an alternative.
Never Shame, Always Distract
In addition to loss of memory, Alzheimer’s disease causes loss of judgment and irrational behavior. An individual suffering with the disease may make strange choices in clothing, become disoriented in their surroundings, or wander through a store picking up things for no apparent reason. For caregivers unaccustomed to dealing with these types of behaviors, these actions can be frustrating. But scolding or shaming someone with dementia accomplishes nothing and results only in hurt feelings. They are not responsible for their actions – the disease is. To avoid such situations, caregivers can sometimes distract the individual, shifting the scenario in a more positive direction. “Will you help me push the grocery cart and I’ll check the list for things we need.” Understanding and emotional support are as important to an Alzheimer’s victim’s wellbeing as physical support.
Never Correct or Admonish, Always Repeat
While Alzheimer’s Disease is unimaginably frustrating and tragic for its victims, it can be frustrating for caregivers as well. When confronted with the repetitive babble, the persistent questioning, the unpredictable behaviors that characterize this horrible disease, even the most caring and well-intentioned man or woman can react in an uncaring manner. “I’ve told you that you need to add the milk and eggs first.” Caregivers must continually remind themselves that it is the disease, not the person, that is the source of frustration. Thinking twice before reacting allows caregivers to deal with situations in a more thoughtful and understanding way. “Let’s go through the steps again together — that helps me understand what to do next.” It is not merely in spite of their condition but because of it that people suffering with dementia deserve to be treated with dignity, respect and compassion.
Never Condescend, Always Empathize
In the later stages of Alzheimer’s, even routine functioning begins to diminish. People suffering with the disease grow increasingly dependent on caregivers for help with everyday tasks such as dressing, washing and even eating. They may wear the same clothes day after day, choosing attire totally inappropriate for the season. As their frustration with previously simple tasks increases, they become more reserved and less responsive to others. For people unaccustomed to dealing with the disease, these behaviors and their repetitive nature can be extremely challenging. Caregivers must guard against reacting in a negative or condescending way. Simple mistakes should be met with understanding and empathy. “It’s okay, that happens sometimes. We can fix it.” The wrong approach in these situations can only compound the Alzheimer’s victim’s distress.
Never Command or Demand, Always Encourage
As Alzheimer’s disease progresses it may prompt marked changes in an individual’s behavior, with increasing instances of unprovoked anger and suspicion. But caregivers may lessen this troubling behavior not only through enhancements in the physical environment (i.e. bringing in sunlight or warm lighting, relaxing music, art, or even a favorite food), but also by the way in which they interact with that person.
Instead of commanding or demanding, “Stay here while I take out the trash,” a more positive approach would be, “If you could stay here while I take the trash out, it would really help me. I’ll be right back.” Researchers believe that despite diminishing cognitive abilities, people with Alzheimer’s retain emotion.
Never Reason, Always Divert
There is nothing logical about the thought process of people suffering with Alzheimer’s. They are often unable to distinguish between past and present. They may confuse even their closest loved ones with people long since passed, or not recognize them at all. Their fear and frustration can trigger emotional outbursts and aggressive behavior. Because an ability to reason is no longer within the scope of their brain functioning, dealing with these types of behaviors requires extraordinary patience and the use of specialized techniques to pacify and comfort someone with Alzheimer’s.
One such technique is diversion. Rather than attempting to reason – i.e. “The doctor said you can’t drive anymore, so why don’t you let me drive,” caregivers are better advised to divert the person’s attention, “What a beautiful day to take a drive through the park. I know the way.” Shifting focus away from any point of contention can relieve the frustrations of the moment and avoid a potentially more serious situation.
Never Say "Remember", Always Reminisce
“Remember that summer we took the family to the Gulf and ….” Recollecting shared experiences is something we do often, routinely, almost without thinking. Memories of past events are often things we have in common with friends and loved ones, part of the bedrock of our relationships. But for victims of Alzheimer’s those memories no longer exist. The simple fact is that someone suffering from dementia often does not — cannot – remember. It is not uncommon for caregivers to want to restore those bonds by recalling shared memories. But recognizing the toll the disease takes, it is better to talk about the feelings those events evoke rather than the events themselves.
Instead of “Remember the time we took the kids to the beach,” say, “I sure enjoy sitting on the beach and listening to the waves. What do you enjoy about the ocean?” The memories may be gone, but the feelings can still be comforting.
Never Lecture, Always Reassure
It is human nature to feel a certain degree of anxiety when we find ourselves in threatening or unfamiliar circumstances. For someone with Alzheimer’s disease, these feelings are ongoing and only intensify over time. The person’s inability to recall recent events, their failure to form connections with their surroundings or even with loved ones – these conditions can generate feelings of frustration, anger, and paranoia. Yet lecturing them or “giving orders” can serve only to increase their frustration and build up resentment. A better strategy for caregivers is to couch each subject in a reassuring context.
Instead of “The doctor says you need to take your medicine,” the compassionate caregiver offers, “Here is your favorite juice to take your pills. I notice how much better you seem to feel.” Victims of Alzheimer’s are seeking comfort. We can often provide some measure of comfort simply by rephrasing our communications with them.
Please support our local Alzheimer’s Association at 316-267-7333.