About ten years ago, a friend (“Samuel”) called me to discuss his frustration over his mother’s care in a nursing home. His beloved mother was dealing with dementia, and the nursing home was dealing with mom by sedating her. Samuel somehow knew this treatment wasn’t really the right thing for her, and he was convinced his mother was being zapped into a psychotropic fog to make her “easier to deal with.” In trying to convince the facility’s staff — and his family — to consider other approaches, Samuel encountered only resistance, hostility, and finally the threat of legal action against him — by his own sister! He now says, several years after his mother’s death, that struggling alone against the drug /sedation issue — knowing in his bones that it wasn’t the best thing for his mother — was as difficult and gut-wrenching as the experience of seeing her slowly, gradually, slipping away.
Samuel appears to have been ON to something.
In 2009, Eli Lilly and Company, the American drug company behemoth, agreed to pay almost $1.5 billion in fines for marketing Zyprexa as a treatment for dementia and Alzheimer’s. While that drug had been approved to treat schizophrenia, the FDA never gave the green light for the drug giant to pitch Zyprexa as a treatment for dementia. The Department of Justice described the penalty as “the largest criminal fine for an individual corporation ever imposed in a United States criminal prosecution.”
That hefty fine pales in comparison to what “Big Pharma” stands to lose if doctors and facilities around the world STOP using anti-psychotic drugs to “treat” dementia. Until anything like that happens, the drug companies have pockets deep enough to engage the finest lobbyists to press their case on Capitol Hill, and to hire the slickest marketing firms to make everyone — patients, doctors, caregivers — believe they simply cannot manage without their products.
One of the strongest, clearest voices advocating a new way forward belongs to Dr. Al Power, author of the book Dementia Beyond Drugs: Changing the Culture of Care. The author recaps his position as a guest contributor on the LiLY (not the drug company) Forum Blog:
For many years, it has been a standard practice in the traditional nursing home to respond to distress in people with dementia by using psychiatric medications, especially antipsychotic drugs. There are several problems with this approach.
The first problem is that these drugs are not particularly effective in eliminating the distress. They may quiet a person, but this occurs primarily through sedation, which can stifle growth and engage management.
A second problem is that we are discovering many serious side effects from these drugs. In addition to the well-known problems of lethargy, gait imbalance, movement disorders, and poor food and fluid intake, we now know that there is an increased risk of weight gain, diabetes, pneumonia, and strokes. Worse still is that these drugs have been shown to significantly increase mortality in people who take them.
Doctors are aware of these risks, but they use the drugs because there are no better pills available. But what if the best answer isn’t a pill?
In our medical model approach we make an important mistake: We see the behavioral expression as a problem instead of a symptom. Consider this: a person with pneumonia will often develop a bad cough. The cough is a symptom of the pneumonia. But if the doctor thinks the cough is the problem, she will only treat the person with cough syrup. This might quiet the cough for awhile, but eventually the person will get worse, because nothing was done for the real problem—the pneumonia.
Behavioral expressions are the same way. Studies show that these expressions are almost always a symptom of a larger need that is not being met by the care environment. If we only see the person’s distress as the problem, we will treat it (usually with sedating medication), while not addressing the underlying need.
This is why most people on medication in a dementia ward may look quieter, but are not truly calm, happy, or engaged with their environment. We have only sedated the behavior without meeting their real needs. In doing so, we have found a solution which is staff-centered, but not person-centered, and ultimately causes more harm than good.
Therefore, when we see a person in distress, our primary goal should be to try and find out what his unfulfilled needs are, and then adjust the care environment to meet them.
The “Eden Alternative” believes that there are seven indicators of well-being, which can be experienced by people regardless of their cognitive or functional limitations. These seven “domains” of well-being are:
Identity: Having a life story that is well-known to our care partners;
Connectedness: Having a feeling of belonging in our living environment;
Security: Feeling safe in our environment and trusting our care partners;
Autonomy: Having choice in many aspects of our daily life;
Meaning: Engaging in activity that reflects our individual needs and values;
Growth: The ability to continue to develop to our best potential; and
Joy: No explanation necessary!
I like to think of dementia as a condition where a person’s ability to maintain his own well-being is challenged. This often results in expressions of distress. This lack of well-being is the real problem; the distress is only the symptom. Our primary goal, therefore, should be to try to restore these seven types of well-being. If we can do that, the distress will often disappear without the need for medication.