Dementia Is Worse When Coupled With Inadequate Preparation

The chances that you or someone you love will be diagnosed with dementia are shockingly high. By age 65, your chances are already at 9 percent. Make it to age 85, and the chances go up to 33 percent. Of course, if you’re diagnosed with dementia, it will be a struggle for you to think clearly about your diagnosis. So, today, while all of your faculties are still intact, I’d like you to imagine what it might be like to be diagnosed with dementia, to better prepare you should that awful event ever come to pass.

When you get the diagnosis, it’s probably not going to be a surprise. You’ve already noticed that things haven’t been quite right. You’ve gone beyond wondering why you walked into a particular room. On top of that, you can’t remember what room you came from. You’ve gone beyond getting lost while driving. On top of that, you’ve found yourself wondering how you got there.

You’ve probably been given a memory test. When your doctor rattled off a list of five things to remember, you might not even have been able to recite all five items when they were first given to you. You couldn’t even go on to see if you could remember them after being asked a distracting question.

Despite patients’ awareness that something is going wrong with their memory, they often react to a diagnosis of dementia with disbelief and anger, followed in a few weeks by denial and indifference. Dementia is usually a slow-moving disease. You can take some time to get used to your diagnosis, but time is cognition, and more delay means less ability to think when you finally start treatment. You are almost certainly never going to think any better than now–when you first receive the diagnosis. This is the best time for you to identify a surrogate decision-maker. This is the best time for you to develop a plan of care and to be sure your family knows what you want. This is the best time to start taking action on the treatments you wish to pursue.

And yes, there are treatments for dementia. There’s no cure, but there are things that slow the progression of the disease. One of those treatments involves medications; the other involves increasing physical activity. It is this second treatment for which delay seems to matter the most. Exercise can slow or even reverse dementia to some extent.

Patients with dementia often have a difficult time motivating themselves, and their motivation levels fall as their disease progresses. Motivation will never be any easier than it is now. Exercise will never make a bigger difference than it will now. Hence it is urgent for you to establish an exercise routine.

Your family may become involved by helpfully attempting to supply motivation, but there’s only so much motivation that they can create. At a certain point, these efforts to create motivation can become contentious. I often hear my patients’ family members say, “If only she’d exercise more, her thinking would be better. I don’t know why she doesn’t care more about her thinking.” It’s hard for them to understand that it’s not that you don’t care about your thinking. The disease makes it harder to understand the consequences of your actions, especially if those actions require effort and may entail discomfort or pain.

Dementia is a disease of the brain. What one cares about is determined by the brain.

Because dementia can affect motivation, it can also cause personality changes. This can be especially painful for families. It can become hard to recognize their loved ones. The person with dementia does not recognize this because they are inside, looking out. They are not usually aware of these changes and are sometimes even puzzled by what their family tells them.

While exercise and medications can slow the progress of dementia, it’s still a terminal disease. Almost everyone has a mental image of a person with advanced dementia who is unable to do anything for themselves, including use the bathroom. Few people would wish to live long enough for their dementia to progress to that state. Most people prefer to die at home while they are still independent. Thus, patients need to consider – while their minds are working well — one more option about dealing with dementia: the option of trying to die from something else. One can increase the chances of dying from something else by selectively not treating other diseases. For example, in the early stages of dementia, keeping blood pressure and sugar under control probably slows the progression of dementia, but at some point, you may wish to control your sugars only well enough to avoid symptoms, and you may wish to stop controlling your blood pressure at all.

As dementia progresses, other medical illnesses may crop up. You may have problems swallowing. You might send food into your lungs sometimes, which can cause pneumonia. This can be addressed with diet changes to keep food in the right pipe, and antibiotics to treat pneumonia. Or, you can go without these and allow pneumonia to naturally follow with its natural consequences.

These are reasonable choices relative to dying from dementia. It is important that make your choice when you still have the mental ability to do so, and to let your family know about that choice, because when the time comes to act on it, you will likely have lost the ability to make complicated decisions and possibly even the ability to communicate your choice.

Dementia is horrible, but it is worse when coupled with inadequate preparation. Denial about memory loss does not make it less apparent to your loved ones. Telling people what you want makes it more likely you’ll get it.

Grace in the face of the inevitable gives your descendants a good example of how to die. They will be doing it one day, too.

Mary Braun is an internal medicine physician.

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