CHAPTER SIX

Treatment: The Standard of Care

AS OF NOW, THERE IS NO CURE for dementia. However, there are basic lifestyle changes and medications that can slow the disease and improve a patient’s ability to function. Physicians call this basic approach to a disease the “standard of care.” What follows are the most important points about the standard of care for dementia treatment. Not everything in this chapter will apply to every elder, but it gives patients and their families an idea of how medical professionals and caregivers try to manage the disease. To be clear, there are no supplements, treatments, or medications that cure dementia. If someone tells you differently, that is just one of the many salespeople looking to sell the hope of a cure that does not exist.

Healthy Body, Healthier Brain

Studies suggest that about half of dementia cases could be prevented by healthy lifestyle choices. As with most diseases, it’s difficult to overstate the importance of diet, sleep, exercise, and social interaction. Sometimes, in a minority of patients, inherited genes increase the risk of dementia, and while we can’t pick our families, we can decide how to eat and live.

The key is to make lifestyle changes that will help preserve as many abilities as possible. All elders function better when they stay active, both physically and mentally. With dementia, as with so many other things, it’s a “use it or lose it” world. Controlling blood sugar, cholesterol, blood pressure, and general fitness can make a huge difference. It can decrease the risk of developing dementia. It can also slow the progress of the disease once it develops.

Monitor Blood Sugar

As we all know, it’s easy to gain weight as we age. As a nation, we have put on too many pounds. More than two-thirds of Americans are overweight or obese. Weight that is carried around the waist creates an increased risk of dementia, cardiac disease, and diabetes.

The major sign of diabetes is high levels of blood sugar, which is called glucose. The sugar level rises because the body’s cells don’t respond properly to insulin, the hormone necessary to process the glucose that our cells need for energy. In the type 1 form of the disease, which usually strikes younger people, blood sugar rises because the body doesn’t produce insulin in the first place.

Diabetes in older people is most commonly type 2 or non-insulin-dependent diabetes—when insulin can’t be used properly, often due to an increase in weight. When glucose can’t be processed by the cells, it remains in the bloodstream, increasing blood sugar levels.

Diabetes leads to many problems: kidney failure, heart attacks, strokes, infections, and blindness. It increases the risk of dementia through small strokes and probably through other inflammatory processes that we don’t completely understand.

Controlling blood sugar is key to managing dementia. Changing lifestyle and eating habits, rather than taking glucose-lowering medications, is the best way to do this. If blood sugar levels rise too high, often over 200 milligrams per deciliter (mg/dL), there’s a risk of infection. People with dementia react far more severely to infections. A simple bladder infection can result in agitation, even delirium. Nor is it good if blood sugar levels dip too low, because that has been shown to make dementia worse. It may also cause seizures. Recent studies show that using insulin more aggressively in patients with type 2 diabetes results in a higher death rate. Also, having lower blood glucose levels did not decrease the risk of death. Rather, improving lifestyle through increased exercise, weight loss, and a plant-based diet decreased glucose levels and the risk of heart attack, stroke, and dementia, too.

When treating younger adults, physicians try to keep blood sugar levels in a narrow range, say 80 to 120 mg/dL. But controlling glucose too tightly can cause problems for elders, increasing the risk of strokes and other cardiovascular events. So for a frail older person, a moderate range should be the goal: say 100 to 200 mg/dL.

Blood sugar levels need to be watched closely if a person isn’t eating or drinking well. A variety of problems—a reaction to a new medication, a heart attack, constipation, or a bladder infection—may also dampen enthusiasm for food.

If an elder has reduced appetite, is forgetting to eat or unable to eat, or has kidney problems, doctors usually reduce any diabetes medication by half. Otherwise, blood sugar levels may dip too low.

Control Cholesterol

Almost everyone knows that it’s important to control “bad” cholesterol, or LDL, the soft kind of cholesterol that can clump and form blockages in arteries. Cholesterol control decreases the risk of heart disease and strokes that can lead to more rapid progression of dementia. Daily exercise and a high-fiber, plant-based diet with limited sugar and processed food is the simplest and most cost-effective way to control cholesterol. But diet alone may not work for all patients.

A whole family of drugs called statins has been developed to help lower cholesterol levels. Statins work by blocking a substance that is essential for cholesterol to be produced. These compounds include simvastatin (Zocor), pravastatin (Pravachol), atorvastatin (Lipitor), and lovastatin (Mevacor). In clinical trials, these drugs have reduced heart disease and the risk of stroke after two years.

However, the body’s reaction to statins changes as it ages. While statins may dramatically decrease heart disease risk for a younger person, the effects may not be as great for those over age eighty-five. Side effects of statins can include liver inflammation, muscle weakness, and pain. They may diminish appetite and function.

These side effects may eventually outweigh the benefits, especially if the patient is becoming weaker and eating less. For a person with advanced dementia and a prognosis of two to three years of life left, the benefits of statins decrease and the burden of side effects increase.

Easy on the Blood Pressure

As with cholesterol, it’s nearly impossible to avoid messages about the value of keeping blood pressure low. The target range for most elders is 130 over 80. The first figure, the higher of the two numbers, means the pressure in the arteries when the heart beats; the second measures the pressure in the arteries between heartbeats. The first number is called systolic; the second number is called diastolic.

As people age and become frail, they stop eating as much, and this can lead to a dip in blood pressure. Systolic blood pressure (the top number) below 100 can lead to strokes or dizziness and falls.

Scientists have found a connection between increased strokes and a significant decrease in blood pressure. That means that, as we age, blood pressure medication may need to be reduced so that the blood pressure doesn’t get too low. Be sure to discuss this with your doctor. Elders with congestive heart failure or liver or kidney failure may have different needs.

Eat Well

With dementia, what you put into your body is hugely important. It’s a matter of balance: Too much salt can lead to high blood pressure, kidney disease, and strokes. Too little salt can bring on low blood pressure, body chemistry imbalances, malaise, and even seizures when levels get very low. Too much sugar and too many calories lead to diabetes and that disease’s complications. Too few calories or not enough protein leads to weight loss, weakness, and frailty.

Eating a healthy, balanced diet is a simple way of promoting cardiovascular health and avoiding the heart attacks and strokes that can lead to dementia.

The regimen depends on the situation. If a person has elevated blood pressure or glucose levels, which increase the risks of heart attacks, strokes, and dementia, then it makes sense to decrease the excess saturated fats found in fried food, butter, fatty meats, and cold cuts. Unsaturated fats—from nuts, olive oil, canola oil, or avocado oil—are much better choices. Limit servings of protein to the size of a deck of cards and restrict simple carbohydrates like cake and bagels. Replace them with a plant-based diet full of fruits, vegetables, nut butters, and whole grains. Some people claim that grains cause dementia, but there is no evidence for this. No studies anywhere link grains to decreased brain function. Rather, the fiber in whole grains helps delay the rise of glucose in the body. This, in turn, decreases insulin spikes, which decrease appetite, blood sugar, and cancer risk. One percent of the population has Celiac disease and should avoid wheat, rye, barley and any other gluten containing grains to decrease inflammation in the gut. Remember that alcohol is like a sugar and is not helpful for brain function. Older adults may enjoy a drink occasionally. But for those with dementia, it is best to avoid alcohol completely. Alcohol use in later years is definitely toxic to the brain.

Elders who have become too thin need direction from a doctor and a dietician about the best way to increase protein and calories and achieve a healthier weight. Sometimes something as simple as a milkshake or soy protein-powder shake once or twice a day can do the trick.

The Ice Cream Diet

A healthy diet may mean green, leafy vegetables and chicken or fish for a younger person. For an older person with dementia who won’t eat anything, a good diet may mean ice cream and a liquid diet supplement like Ensure or Boost. Focus on what will give the person pleasure, as well as on fluids, calories, and protein.

One woman with moderate dementia, Becky, just stopped eating. Her sister and brother wanted to have her admitted to the hospital. They wanted to have many tests done. But over the preceding eight months, Becky had refused to agree to a colonoscopy to investigate her anemia. Eventually, the family realized that if she wouldn’t consent to biopsies and other invasive tests, then she would never consent to surgery. Finally, she did agree to a barium test to help doctors see the outline of her esophagus and stomach.

It turned out that Becky had presbyesophagus, or changes in the mechanism of swallowing, which meant her esophagus could no longer move solid food down to her stomach properly. Yet she did just fine eating only ice cream and Ensure and taking iron for anemia. She lived for a year this way before dying peacefully at her residence facility.

Keep Moving

Just as we have “use it or lose it” brains, we also have “use it or lose it” bodies. Exercise and a plant-based diet are the only treatments that studies show will decrease the risk of dementia or the progression of dementia. If exercise were a pill, it would be more expensive than Viagra. The more we move, the healthier we are. This goes for people with dementia as well. Exercise helps lower glucose, cholesterol, and blood pressure.

Supplements do not help to decrease the risk of death created by too much glucose. Improving lifestyle with a plant-based diet and exercise is the only effective response. Movement and activity is the only way to delay frailty, the term used in medicine for the loss of muscle strength and bone density that comes with age. Staying active decreases restlessness, promotes deep sleep, improves appetite, and helps maintain normal bowel movements. Because regular exercise increases the fluids in the joints, movement also decreases arthritis pain. Daily exercise has been shown to slow the progression of Parkinson’s disease. Even a gentle activity, such as yoga or the slow, deliberate movements of Chinese shadow boxing or tai chi, has been shown to improve balance, decrease the risk of falls, increase strength, and positively impact mood.

If your loved one hasn’t been active for some time, consult a physical therapist before starting a new exercise routine. This will help to avoid injury.

Most people with dementia will face periods when they must be inactive, such as during hospital stays for illness or injury. Every day an elder stays in bed, he or she will lose 5 percent of their muscle mass. That means that a ten-day stay in the hospital may cause a 50 percent decline in physical strength. In such cases, it’s important to consult a physical therapist as soon as possible, at the start of a hospital admission.

Those who are most frail get the most benefit from physical therapy. An evaluation by a physician and a physical therapist will help to identify the safest way to be more active.

Home Test: How Fit Are You?

Often, older individuals and their families will overestimate what elders can do. When it comes to fitness, safety is paramount. A serious fall can set off a precipitous decline.

One of the most serious injuries from elders falling is a broken hip. A quick way to judge if people are at risk is to ask them to get up from a chair of moderate height, such as a dining room chair, without using their hands.

If they succeed, it’s a sign that their upper leg strength is pretty good and they have less risk of fall and fracture. Those who can’t get up from a chair without using their hands are at higher risk; physical therapy should be the first step to increase strength.

A Medication Primer

The most direct drug treatments for dementia seek to improve the supply of key brain chemicals or to improve cardiovascular health that will avoid the mini-strokes that can cause dementia. In caring for your loved one, it’s a good idea to know a little about the most common medications prescribed for their treatment. Use this section as a reference. When doctors suggest certain medications, you can look them up here.

Each drug has benefits and risks. The following information is general and should never be used to pick medications without the primary medical provider determining what is right for a particular elder.

Cholinesterase Inhibitors

The most targeted drug for dementia is donepezil (Aricept). It increases the concentration of the chemical acetylcholine, which is important for the processes of memory, thinking, and reasoning. The drug is referred to as an acetylcholinesterase inhibitor or an anti-cholinesterase because it prevents the enzyme cholinesterase from breaking down acetylcholine.

Studies show that this class of drugs may modestly help slow the rate of decline and possibly keep the nursing home at bay for an extra six months. However, the drugs only help 10 to 30 percent of those with dementia, and it’s impossible to know which individuals will benefit. Therefore, it’s common to give these medicines to all patients with declining brain function.

Donepezil is not a cure-all. While it is perhaps the best studied of the dementia drugs, its use remains controversial. It is expensive and the benefits are modest. There is no clear proof that the drug alters the course or the progression of Alzheimer’s. Studies show better effects in brain function for Parkinson’s disease, but this medication is not appropriate for frontal dementia.

In addition, donepezil’s side effects may be uncomfortable. These include insomnia, nausea, loss of appetite, diarrhea, and decreased blood pressure and heart rate. Occasionally, the drug causes behavioral problems, such as agitation or sedation. Still, donepezil is certainly worth trying, particularly a low dose in the morning. This medication should not be used in the treatment of frontal dementia.

Several similar drugs also affect choline uptake.

Rivastigmine (Exelon). This drug may be delivered by a skin patch as well as a pill. The patch may be especially useful for patients who suffer from stomach upset or loss of appetite. However, with patch delivery method, the drug may make balance worse. With medications, there are always tradeoffs.

Galantamine (Razadyne). This drug has side effects similar to donepezil. Some patients suffer from agitated behavior. Others don’t seem to enjoy any benefit.

Glutamate Drugs

Memantine (Namenda) affects how nerves absorb glutamate, another chemical that helps brain cells communicate. It’s thought that in Alzheimer’s patients, brain cells take in too much glutamate. This may lead to an overstimulated state that makes the cells die.

Some studies have shown that prescribing donepezil and memantine together may be more effective than donepezil alone. Memantine’s use is controversial because it may leave patients oversedated or confused. I have had some patients benefit from this medicine. For many, however, this medicine doesn’t make a difference or they’re too far down the road for drugs to be helpful. There is no reason to buy the more expensive combination pill Namzaric (Donepizil/ memantine) if your insurance does not cover it.

Drugs that Decrease Stroke Risk

“Baby aspirin” (81 milligram) thins the blood and decreases the likelihood of strokes that contribute to vascular dementia. It is more cost-effective than any other medication. The biggest side effect of thinning the blood is that it increases the risk of bleeding—mostly in the stomach, but sometimes from injury as well, such as bleeding in the brain after a fall. This risk can be decreased with a proton pump inhibitor (PPI) like omeprazole (Prilosec), which is the most common and inexpensive. However, the PPI can lead to low vitamin B12 absorption as well as increased risk of antibiotic-associated diarrhea that is caused by the bacterium Clostridioides difficile (C Diff).

Baby aspirin generally shouldn’t be used with clopidogrel (Plavix), a drug used to prevent blood clots. If an elder has a stent keeping a heart artery open, aspirin or clopidogrel with other blood thinners may be prescribed, but the benefit may not be greater than the falls risk in a person with dementia who has lost safety awareness and is impulsive. Those with risks of falls are more likely to fall and bleed in their head than have a cardiac event.

Aggrenox, a combination of aspirin and dipyridamole (Persantine), may be used for those with peripheral vascular disease.

Clopidogrel (Plavix) also thins the blood and is more effective for stroke reduction than aspirin. However, some medications used to protect the stomach, such as omeprazole, esomeprazole (Nexium), and pantoprazole (Protonix) may prevent the clopidogrel from working. Further, clopidogrel may cause excessive bleeding. There’s no quick way to reverse this side effect.

Warfarin (Coumadin) reduces the amount of vitamin K, which is needed for the formation of blood clots. Today, it is less frequently used to reduce the occurrence of strokes. This is particularly true with those who have atrial fibrillation of the heart, blood vessel narrowing, or replaced heart valves. This drug can be affected by the patient’s diet and alcohol use. Those taking it need to be monitored closely for blood thinness and a significant bleeding risk.

Apixaban (Eliquis) is a common blood thinner replacing Coumadin and the need for blood testing, for atrial fibrillation or treating deep vein thromboses. The down side is that there is not an “antidote”; it must wear off, it cannot be reversed and should not be combined with other blood thinners.

Alcohol and pain medications such as aspirin, ibuprofen (Advil), and naproxen (Naprosyn, Aleve) may thin the blood even more when used with other blood thinners. If a patient has already become confused and falls frequently, the risk of increased bleeding is probably more of a danger than the risk of stroke. For those on warfarin, vitamin K is an issue. Too many green leafy vegetables or a multivitamin with vitamin K will reverse the blood-thinning effect and increase the risk of stroke.

Medicines that May Make Dementia Worse

Most drugs specifically developed to improve dementia seek to increase the levels of choline, a chemical that brain cells need to communicate with each other. Yet several common medicines are anticholinergic. That is, they block the neurotransmitter choline. These drugs can make dementia worse, resulting in more confusion and agitation. They can also cause dry mouth, constipation, and difficulties urinating.

The more common include:

Diphenhydramine (Benadryl) is an antihistamine found in cough syrups and over-the-counter allergy and sleeping pills such as Tylenol PM (in combination with acetaminophen). Guaifenesin (Mucinex), a common ingredient in cough medicines, is a better choice. It thins the mucus without worsening confusion or keeping the person from coughing.

• Bladder pills such as tolterodine (Detrol), oxybutynin (Ditropan), trospium (Sanctura), or solifenacin (Vesicare) may be used to treat spasms that cause loss of urinary control. However, their side effects may include confusion and agitation. Cutting caffeine and diuretics may be a better alternative. Some urologists use “off-label” nortriptyline (Pamelor) at a low dose to decrease bladder spasms.

Atropine (Lomotil) or hyoscyamine (NuLev) may be used to reduce respiratory secretions toward the end of life. Hospices often turn to them to relieve the distress of family members hearing the “death rattle,” a sound that patients near death often make when saliva collects in the back of the throat. These drugs decrease the secretions, and hence, the noise.

However, if these drugs are used when the person is still conscious, they may cause severe confusion. Atropine may also be used for glaucoma in an eye drop form, which also can cause confusion.

Amitriptyline (Elavil) is a medicine used in the past to treat depression and now prescribed to treat neuropathy and irritable bowel conditions. A related drug, Pamelor, can be helpful and cause less confusion.

Diphenoxylate combined with atropine (Lomotil), which is used to relieve diarrhea, may be okay if administered only once or twice. But if used regularly, its anticholinergic effects may cause problems for dementia patients.

Steroids, medicines commonly used to reduce inflammation of various sorts, may also pose a problem for a person with dementia, causing confusion, insomnia, and agitation (also called delirium in medical contexts). When the steroid prednisone is used to treat emphysema and other lung diseases, its use should be reduced fairly quickly. Studies report little benefit to continuing this drug for more than two weeks.

Levetiracetam (Keppra) is a newer antiseizure medication that is more reliable to use than the commonly prescribed phenytoin (Dilantin). However, it has been found to be associated with paranoia and aggression as well as sedation in some people.

In chapter 8, I will discuss the use of medications to treat behavioral symptoms of dementia. This is a controversial subject because there’s a sense that it’s an insoluble problem with little evidence for effective treatment. In fact, a recent review of many studies of medications for behavioral symptoms concluded that nothing works. And some commonly prescribed drugs—certain antipsychotics and tranquilizers used to control behavior—may actually make a patient more agitated or less socially inhibited. However, I have seen many cases where medications have helped. It’s all a matter of weighing the risks and the benefits and looking for solutions to improve the patient’s quality of life. I will discuss this fully later in the book.

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