By Germaine L Odenheimer, MD
Almost everyone forgets stuff. Ask students after an exam. If I asked a room full of older adults how many have lost their car keys? Hearing aids? Glasses? Teeth? Car in a parking lot? Most of the hands will go up multiple times. Or how many people have had a word on the “tip of their tongue” but could not come up with it? How many people have gone to introduce a dear friend and suddenly couldn’t think of their name? These are common and may be a bit more common as we age. The information usually comes when you quit trying so hard. Although our memory remains fairly stable in normal aging, it tends to take longer to access information.
There are signs that should raise concern. These are mainly based on a change from previous abilities. If someone never handled their finances or cooked a meal, then it would be normal for that person to make errors in these tasks. But if the person was always good with money and cooked fantastic meals and recently, they struggle with these tasks, it is worth getting an evaluation. Other examples are people who used to be good with fixing cars, performing magic tricks, solving puzzles, running a business, or working with computers. The key is that it may be time to worry when there is a CHANGE. Other clues are trouble keeping up with medications, and bills, using the microwave or the TV remote, confusion while driving, dramatic change in personality, hallucinations, trouble walking, and urinary incontinence (if no other cause is found). These changes will help lead us down different diagnostic paths depending on the symptoms.
Some doctors are quick to assume the person has dementia or Alzheimer’s Disease (which is the most common cause of dementia). But there are many other possible causes that need to be ruled out. And some of them are completely reversible if treated. For example, I had a patient who had seen many doctors, even specialists and was diagnosed with Alzheimer’s. But after we stopped some of her medications, she completely recovered. Other causes that are potentially reversible are deficiency in B12, hyper or hypothyroidism, blood or tumors in the brain, some brain infections and fluid buildup inside the brain, sometimes called “Normal Pressure Hydrocephalus.” Unfortunately, the most common causes of dementia: Alzheimer’s Disease, Lewy Body Disease, Strokes and Frontal lobe deterioration do not yet have successful treatments.
Can we do anything to prevent these typical causes of dementia? For at least Alzheimer’s disease, there is growing evidence that doing what is good for the heart is also good for the brain and may prevent or at least delay the onset of decline. The most important of these are to stop smoking, achieve good blood pressure control, manage diabetes, treat high cholesterol, avoid heavy drinking (generally less than 1 drink a day for women and 2 drinks a day for men). This is true for beer and wine as well as for hard liquor. Wear seat belts and avoid other activities with high risk for head injury. Football, soccer, hockey and boxing are the biggest offenders. Finally: a diet with plenty of fresh fruits and vegetables, routine exercise, and staying mentally and socially engaged.
Are these diseases inherited? Sometimes it is clear that dementia runs in the family. This is most true if the onset of disease is younger than age 65 referred to as “young onset”. But this accounts for only about 5% of the cases. The single biggest risk factor for Alzheimer’s disease is advanced age. About 11% of those over 65 have at least some forms of dementia and after the age of 85 the percentage is between 30-50%. But there are also people over 100 who are very sharp.
Is genetic testing recommended? The answer depends on why it is being done. In “young onset” it may play a role in deciding whether to have children, getting your affairs in order and how to spend your time. There is a different genetic link to later onset based on the type of apo E you carry. There are 3 types: 2, 3, and 4. You have two of these that can be in any combination, and you inherit them from your parents. Studies show that the apo E 4 increases your risk, but it does not mean you will get the disease, so it is not that helpful clinically. And you can still get the disease even if you do not carry any apo E 4. So, for the later onset group, the only clear reason to check at this time is for research purposes.
There are new drugs and claims of cures coming out all the time. How good are they? This is a controversial topic, but in my opinion, we are no closer to an effective treatment than we were 30 years ago even if the FDA does approve the release of some of these medications. Since it is the most dreaded and expensive disease our nation faces, many research projects are trying to solve this vexing and terrifying problem. Be very wary of treatments that seem too good to be true. These are likely scams that will give false hope and steal your savings. If insurance/Medicare doesn’t cover it (tests or treatments), there is likely no evidence to support these protocols. If and when a successful treatment is found, it will make international news. The Alzheimer’s Association is a reasonable source for checking out these claims.
What do we do in the meantime? We need to greatly increase the training of health professionals to recognize and manage these diseases. If you have tried to find a doctor with special knowledge of these disorders, you may have been extremely frustrated. There are very few still in practice, largely because the payment system will not support the amount of time required to do these patients justice. We need to change the payment system by Medicare and other Insurers to support the type of practice required to provide good care to people with dementia.
How do we get through this with our loved ones? Caring for a patient with dementia is an enormous challenge and strain on the caregiver’s finances, health, and mental health. One-third of caregivers die before the person they are caring for. Caregivers need support to survive this journey. Respite care and Adult Day Care can extend the ability of caregivers to manage, but at some point, there is usually a need to place the loved one in a long-term care facility no matter what you promised. And finding a good one is another big challenge. Again, this goes back to payment and better regulation regarding staffing, training, and supervision. We have such a lot of work to do. I hope you will join me in advocating for change.
By Germaine L Odenheimer, MD Written by Germaine L. Odenheimer, MD, Geriatric Neurologist, Dementia specialist, Professoremeritus, OU College of Medicine.