Commentary on article: “Why Are African Americans So Much More Likely Than Whites To Develop Alzheimer’s?”
This Washington Post article, “Why Are African Americans So Much More Likely Than Whites To Develop Alzheimer’s?” described the current sampling problems. Too few representatives from certain groups lead research to an warped result. I’m not sure the average person understands the effect of a poor sample on results. Here are two examples. The first is a photo of President Elect Truman holding a newspaper whose headline read: Dewey Wins. Dewey didn’t. The newspaper got it wrong because they called people to survey their voting preferences. In those days not all people had phones!
The second was a TV program; Hee-Haw. Nearly all urban critics panned it. However, the Nielsen Ratings showed it was quite popular in rural areas. The rating agency surveyed people in rural areas as well as cities. The program stayed on the air due to a more representative sample.
A truly effective treatment/cure for Alzheimer’s disease requires everybody. An effective treatment must also account for future population trends. Each decade, the US population becomes less white. We already have many mixed-race citizens. If we don’t understand the components of our genetic salad we cannot effectively ad-dress it. Everyone bears the costs, regardless of our racial background. It is in our national interest to reach out to all communities now so we all benefit in the future.
The article sited the Tuskegee experiment as a cause for hesitation by African Americans. The article did not mention a more modern version of inappropriate behavior; using the cancer cells of Henrietta Lacks without her consent. I hurt for her family. Recruiting more African Americans should address the Henrietta Lacks issue as well as Tuskegee.
I can also see the potential for greater help to minorities as we find ways to treat Alzheimer’s. Minorities shoulder a greater personal burden. My firm works with caregivers as well as seniors. We note that communities with fewer financial resources place an even greater burden on caregivers. Thus, the disease injures those who care as well as those who suffer. In The Washington Post article, other family members moved home to help. The article does not discuss the financial costs to these adult children. AARP estimated that caregivers could lose $569,000 in lost wages, lost promotions, reduced savings, and lost pension benefits. That’s a double-whammy I’m not sure our country could withstand. Please read this article from the Washington Post and pass it on.
If you put a frog in cold water it will stay there, even as the temperature is gradually increased until it’s cooked. However, if you drop a frog in hot water it will jump out. This illustrates to seniors’ lack of tolerance for hot weather.
Every summer there are warnings to check on the elderly, and make sure they are keeping cool and hydrating. Our seniors are survivors of a bygone age when there was little or no air conditioning; often only found in restaurants and movie theaters. The signs from that era showed the words with snow on the letters! Many seniors may consider it an expensive luxury, or an annoyance when the cool house is affects the joints. After all they have enjoyed many summers, and did just fine!!
What they don’t take into consideration is that their physiology is changing as they age. They become less tolerant of extreme temperatures. Also, they often don’t take into consideration that health issues, and medications play a part. Climate change has made summers hotter and today’s houses assume air conditioning in the way they are built.
The particular danger occurs when the air conditioning has been on for a while and then turned off. The senior, like the frog in cold water, feels too cold. As the house gradually warms, the body will attempt to adjust. Sometimes they fall asleep. They are unaware that the house is heating to the realm of being dangerous. This drowsiness or daytime sleep may interfere with taking medications or proper hydration.
When you call or check on seniors, if they speak more slowly, or have slurred speech, get help. If the senior is slower or more wobbly than usual answering the door, has evidence of confused mental processes, it is imperative to get them to medical attention.
Here are some very useful ways to avoid these problems. If the senior is feeling too cold, sweaters and socks are recommended. Protect the joints and keep the air conditioning on. Turn up the thermostat set point; even if the house is set in the high 70’s it will still be cooler than the outside air. Check for drafts. Perhaps the favorite chair is too close to a vent. Deflectors can keep the air circulating away from the senior. This way, the climate control will keep things from getting dangerously hot.
This time let’s look at riding in cars with seniors. Taking Grandma with you for outings is a wonderful way to provide social contact and stimulation. Please include your seniors in activities this summer. The following are a few cautionary notes with cars.
I remember a wonderful trip that was a long drive. My Grandmother suggested she sit in the back. Sibling rivalry was in full bloom between me and my sister so Grandma sat between us. As we rode, she told us stories about when she was our age(s). She pointed out features along the way and told us about them: she had actually played in a hayloft! When we arrived at our destination, no one was whining, or had asked, “Are we there yet?”
Just a few tips to help you have pleasant summer trips with your seniors.
Describe Yourself in Three Words. This is one of the games I include in my Course; Preparing to Parent Your Parent. Participants offer all kinds of responses; attributes like insightful or patient. Others describe demographics; father, wife, or daughter. Some describe themselves as fans of sports or certain teams. A few describe their occupations or religious affiliation. I write all their responses on the board.
Then, I ask the group, “What kinds of descriptions are on the board?” We assign various categories. I ask the group, “What kinds of descriptions are NOT on the board?” This usually meets with silence. Often I must offer some categories. Typically, people do not describe themselves by their income level. I offer that option. Then, I ask the group to look for any self-description that includes a diagnosis. None!
This game highlights the difference in how individuals see themselves compared to how society sees seniors. An individual can be anyone of any age. When seniors describe themselves, they use a variety of terms. When society describes them, it is often diagnosis-first! Age is a stage of life, not a disease. Life has many aspects. Health is one of them; not the only one. Unfortunately, we see those who are aged as = ill.
There are consequences resulting from such a one-dimensional view. If others will only really listen when you talk about your chronic conditions, it encourages a mental focus on those conditions. If the only time you’re touched is in the context of a medical process, you will seek such contact through medical occasions. Are we driving seniors into these situations because those places fulfill their human needs? All ages need attention and human contact. We know that children may behave badly in order to get attention. We know that small children who do not receive regular, loving touch develop more slowly. I observe that seniors also respond to attention to their non-medical interests and kindly touch. It’s time to ask for modification in our society’s view of aging.
How did we become the society that treats one group differently? I suspect our original view of aging was reverence. The old ones were the elders (leaders) of the group. They acted as the library and history lesson. The old ones had an occupation; to teach or act as guide for the young. As society became more complex, the old ones were not as visible. Industrialization pushed some women, small children, and elders out of the workplace. In agricultural societies, all ages played some role and all worked as a team. Illness was present in all ages, not just the old.
Basic health improvements like clean drinking water and public sanitation reduced deaths, especially in younger people. Basic care reduced some infant and maternal mortality. The old were not spared. Every winter, pneumonia took the lives of elders. This disease was once called the “old man’s friend” because it ended suffering from other chronic (untreatable) conditions. Thus, our ideas of the meaning of “old” evolved. It became equal to “sick”. Contrast this pattern with today’s medical care. We can treat pneumonia and other many chronic conditions. Elders benefit as well younger persons.
Our viewpoint needs to evolve if we are to meet the real needs of our aging population. Seniors need less emphasis on more medical care; they want greater societal integration and quality of life. They describe themselves in three words in the same pattern as younger people; attributes, demographics, (former) occupations, sports fans, and religious affiliations. In 40 years, I have never met a senior who described herself by her diagnoses. Why should we?
Would you like to talk with me about this topic?
Equation for conflict: 1 elderly parent + 3 adult children = 5 opinions in 6 minutes. Sadly, the one who pays the price for a lack of clear direction is the elder! Some front-line caregiving children say the worst part is getting other family members on the same page. They experience the parent differently so they view the situation differently. Failure to resolve these conflicts creates consequences beyond the parent’s life. I’ve seen old resentments divide adult siblings and keep them apart for years. How sad! How unnecessary.
If families would realize consequences could reach this far, they would decide to create a consensus. Families can add a neutral party, knowledgeable about the senior journey. Knowledge is a key requirement. Elder care and research are exploding! Let’s add a note of caution on expertise. Just because a family member is a nurse or doctor does not make them the most knowledgeable in THIS area. A family member who sites background as the definitive opinion has lost sight of two factors. First, how does their medical background relate to senior specialty? Second, they still have their own skin in this discussion. That doesn’t lead to impartiality. It’s a standard in the counseling industry not to counsel their families. In the same manner, a referee’s presence offers perspective because they are apart from the discussion while acting as a part in it.
If your family meetings were fruitless or failed; it’s time to call a referee. A referee should be a professional with experience in geriatrics. The referee could be a social worker, a counselor, or a mediator. The key qualifications are that they know geriatrics and they understand response to conflict.
Many families do not take advantage of such professionals. Some believe that these topics should be handled in the family. Why? Are all tax matters handled in the family? Do families seek legal help? Elder care is changing so rapidly the DIY approach is not longer informative. I recommend some expert input. It’s not “overkill” and it could keep your family out of trouble.
Do not assume your doctor is the expert. He (She) may not have geriatric training; ask. Your doctor may not have taken additional or up-dated training. Some doctors specialize in geriatrics but will not act as referees. Sometimes other family members refuse to pay for professional services. That’s usually done to stall the discussion, or avoid developing solutions other than theirs.
When a professional isn’t present, family disagreements can become endless. That leads to no decision. Lack of decision is as bad for the elder’s care as a poor decision. Here are three examples; a family lost a daughter, through death, to caregiving. Another family’s the elder almost lost his home to gambling debt. A third family discovered two aunts had been scammed of over $50,000 by a domestic. In each case, if family had involved a professional, received a thorough assessment, and developed a plan, interventions could have worked.
Many adult children dread discussing certain topics with their parents such as driving, or moving to a facility. That discussion works better if the adult children have a consistent front. Reaching a consensus works better when discussions are productive. If your family seems to go round and round; get off the un-merry-go-round!
Get a referee.
Senior Sidekicks offers this service: Consultation.
At a social gathering a woman at my table stated she had not thought about herself as a future caregiver. She told me; “My parents are fine right now and thinking about them needing my care is scary.” Her comment made me think about what holds adult children back from preparing for caregiving. I see four reasons:
First: It’s scary. Certain factors make circumstances feel scary. When we don’t know what to expect; it’s scary. When we don’t know how to respond; it makes us feel helpless and scared. When we don’t know where to get help; it makes us feel alone and scared. No one wants to be in that situation. It’s normal to withdraw when we don’t know what else to do. There is a better way; preparation.
Our society has found ways to meet other challenges by preparation. For example, I live in tornado country. We never know when the weather will change. Yet, we don’t sit paralyzed: we prepare and respond. We have weather warnings, sirens, shelters, and drills. We may have tornadoes, but we don’t take these lying down! Because society prepared, life goes on. Life could go on for caregivers as well if they were prepared.
Caregiving preparation follows the same preparation pattern. Learn about it. Make contingency plans. Engage others effectively. Preparation removes the scary parts of the process. I developed a course, Preparing to Parent Your Parent, to help new caregivers or future caregivers do that.
Why do some people respond to a course for caregivers like this? “I’ll deal with it when the time comes.” Really! Think about the other ways they prepare. Would they wait until their car slid off an icy road to check the tires in winter? Did they wait to study childbirth until they were in labor? If they would do those preparations; why not do the same for caregiving? The worst time to make plans is in the midst of a crisis!
A second reason for hesitation: The same person described her concern about elder-related information. She felt like she had so much to learn she didn’t know where to begin. She wasn’t sure how she could remember it. Information overload is a 21st Century condition. Some people have described it; “like drinking out of a fire hose”! The internet doesn’t give caregivers ways to order, relate, and manage information. We have always had ways to manage information. Remember the card catalogue in the library? It helped us find the right book. We didn’t need all the books at once because we knew we could return to get more information when we needed it. A caregiving preparation course does the same task as the library card catalogue; manage information. My course turns the information fire hose down to a drinking fountain!
The third reason future caregivers hesitate is they do not have role models from their early lives. There’s a reason for that missing link; the age change happened so quickly. Let’s compare; in Sangamon County, in 1910, the average life expectancy was 50-53 years (depending on gender and race). Compare that to 2010; when the average life expectancy was 77-78.8 years. That’s a big jump in only two generations! Contrast that change with millennia we have born children. People grew up seeing many adults caring for children. We received role models by social osmosis. We have not had the same numbers of seniors, for as long, very until recently. We don’t have an historic set of elder care wisdom yet. We can fill that gap with preparation. We can learn new skills just as we learned to drive a car. We can adapt to changes, just as we have adapted to the internet. We have already learned and adapted to other things; why not apply them to elder caregiving preparation?
The final reason caregivers might hesitate is worry about health. That is not a selfish attitude. Every organism is oriented to preserving itself. Taking care of ourselves as we care for others is an essential skill (and included in my course). Many elder caregivers are also responsible for children, spouse, house, pets, and the job! It’s not selfish to be worried about how to will meet the needs of all these other people and the senior’s. It’s admirable to have these concerns answered.
Preparation is the key to helping caregivers remove fear, overwhelming feelings, missing role models and caring for themselves.
An adult child responded to one of my visit reports in which I had written about her Mother’s use of portable oxygen. She replied that her Mother really didn’t need it; her attachment was all psychological. The adult child told me the Mother had been previously evaluated for respiratory functioning and found “barely qualified” for oxygen. I replied that my observations didn’t confirm that; Mother was currently gasping for air upon exertion.
After a hospitalization, the tests showed the Mother had pneumonia. Pneumonia can be subtle in the way it looks to observers. We might think of it as a disease that leaves the patient unable to breathe at all unless aided. Not really. In my years working with seniors I’ve noted a variety of presentations. Some seniors describe a “smoker’s cough”. Some seem to have a cough that just hangs on. Some report they have “allergies” (that present as a cough). Some of these self diagnoses turned out to be pneumonia. This is a factor that should not be left to chance. Remember Jim Henson (the creator of the Muppets) died of an untreated walking pneumonia.
We need to check because what we can see may not be the whole story. For example, I asked one of my social workers about a reported reference to a senior’s cough. She said the senior had this symptom for some time. I required her to get the senior an evaluation. The tests showed a severe pneumonia that required hospitalization!
How can caregivers know; we’re not doctors? When I talk to seniors, I keep these three points in mind; frequency, intensity, and duration. When the cough has hung on a long time, it’s a duration indicator. Ignore self diagnosis and get an evaluation. Why, because seniors are more at risk. They may not be as active, they may be overweight, or they may have compromised immune systems. Just because a senior was once evaluated doesn’t mean they are still functioning in the same way.
Who was right; both of us. The adult child observed her Mother clutching the oxygen tanks. She did. I observe the Mother struggling for air when she transfers to and from the car. She did. The evaluation didn’t throw out either observation, it linked them. The Mother was struggling and responded by becoming hyper aware of her oxygen tanks.
It’s helpful to remember this tale when home care, or facility staff report an issue. Their report may differ from your observations. Evaluations help provide answers and directions. Ignoring reports can lead to more complications.
"A Senior Moment" is written by Ms. Sara Lieber, owner of Senior Sidekicks. Ms. Lieber has over 30 years of experience in senior care.