You may not have thought about the difference between treatment and care. They are not synonyms, they’re opposites. Both have their place in our lives, but the goal of care is to enhance comfort, while the goal of treatment is to prolong life and regain health. When someone is experiencing a condition that cannot be cured, such as dementia, not understanding this difference leads to discomfort rather than comfort, and the lives of both those providing ‘care’ and receiving it are filled with dysfunction. No one is happy.
Treatment is for illness and injury.
When we have a health concern, we go to a doctor for treatment. The doctor asks questions about our symptoms, identifies the probable disease or injury, then orders tests to substantiate the diagnosis. Once satisfied as to what disease or injury is demonstrated by the symptoms, they prescribe a treatment.
To cure an injury or disease, an accurate diagnosis is very important. If we are diagnosed with cancer, we want to know exactly where the tumor is, how far along it is, what bodily systems have been impacted, and what the treatment options are. Having an accurate diagnosis helps us make educated decisions regarding which treatment to apply—because we have cancer treatments that can put us in remission or even cure us. Although both the tests and the ultimate treatment are likely to cause temporary discomfort, being cured of the illness and returned to health make the side effects and discomfort worthwhile.
We do not currently have effective dementia treatments. There is no surgery that will remove it; there is no medication that will return the person’s memory skills or rational thinking skills (medscape.com is a good source if you’d like to read studies). Instead, we borrow medications meant for other conditions, such as antidepressants, anti anxiety meds, and antipsychotics, all of which have side effects and limit a person’s ability to express their emotional discomfort. These medications should be a last resort—not our first response after diagnosis—and turned to only after we’ve been unable to make the person comfortable through providing truly supportive care.
In his book Being Mortal, Atul Gawande points out that in the United States we are very adept at diagnosing and treating diseases, but that in developing this expertise we seem to have forgotten that there are conditions we cannot cure. He points out that we are not then empty handed: we should turn to supporting the person’s comfort and quality of life (provide care). Gawande asks us to recognize that care is required, not treatment, when we are experiencing a condition for which we have no cure.
Care is for when we cannot cure.
When we find ourselves dealing with something that is not curable, such as dementia, continuing to follow the test/diagnose/treat model is irrational. Without hope of returning the person to health—to their previous condition—it’s only logical to turn our focus to providing support and comfort: to find ways to enhance their experience and ensure it’s enjoyable.
Is caregiving stressful? Oh yes. Is experiencing dementia stressful? Definitely. The best way to lower your stress is to find ways to enjoy life with the person you’re caring for—in the moment, in any possible small way. If they’re experiencing dementia, it’s important to understand two things: (1) they are losing the ability to change their own moods, and (2) they are losing the ability to think of fun things or plan. But—they are fully able to enjoy what you bring to them! Providing care turns our focus from what’s wrong with someone to how to help them still enjoy life.
Providing care is very personal. If the person behaves in ways that are not optimum, we need to think about what’s making them unhappy or obstinate or afraid—we cannot help them be comfortable without knowing how they feel. Yet, when we spend time with someone and don’t know what they can and can’t do, we repeatedly embarrass and frustrate them without realizing it. Is it surprising that we find ourselves facing unpleasant behaviors when with people experiencing dementia? None of us are at our best when we’re embarrassed, scared, frustrated or angry.
If we want to help someone with dementia, we should be looking for ways to bring beauty into their lives—to have fun together!—paying attention to how they feel and what they can do, learning what makes them laugh. When we put our attention on how someone is feeling, and how to make life pleasant for them, we help them feel safe and at peace. We are providing care.
We can help someone with dementia if we understand the changes in abilities dementia causes.
When experiencing dementia, people lose memory and thinking skills, such as the ability to see cause and effect, prioritize actions or needs, make plans, or envision and follow steps in a series. With memory and rational thought losses come poor decision-making and an altered sense of reality. Without these skills, we’ll never again be able to understand explanations or directions. These are the disabilities of dementia. We have no medication that will return these skills, but we can support the person’s other skills—those not lost—because dementia does not cause the total loss of cognitive skills.
We lose rational thought (which helps us get stuff done), but not intuitive thought (the skills we need to enjoy life). We lose our ability to access the past, but remain fully able to enjoy the present. We lose our ability to plan for the future, but we can have fun and enjoy beauty when someone brings it to us. If dementia caregivers understand that with dementia we are living fully in the present, and fully equipped to enjoy it—yet losing the ability to take action and fill it with good things ourselves—then they know how to provide dementia care.
Dementia care should not consist of standing back and watching a person fail in more and more ways, experiencing ever more embarrassment, confusion, distress and loss of dignity until they can only be incarcerated and medicated to prevent harm. That is the absence of care, not provision of care. That is reacting rather than planning and supporting.
Care means learning what to expect, gradually increasing assistance as the person’s needs change and meeting their emotional needs as they grapple with those losses we cannot prevent. Care results in quality of life—enjoying beauty and companionship in the present. This is the path to wellbeing, not only for someone with dementia but for those who love them and spend time with them as well. The best way to support dementia caregivers is to help them learn how to keep from embarrassing and frustrating their companions.
So let’s recognize that there is a time for treatment and a time for care. Treatment is for illness and diseases that we can cure. Care is needed when we must live with something. Treatment is focused on fixing what’s wrong. Care is only effective when we know what’s still right.
So if you want to truly help someone who’s experiencing dementia, think about their emotional needs and learn what they’re still able to do. With that knowledge, you’ll find you’ve improved not only their life but yours as a dementia caregiver, too.
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