Dementia: What is it? Why hasn’t my doctor addressed it?
What’s confusing about dementia is that it’s not actually a disease by itself. Rather, it’s a collection of symptoms such as impairments to memory, communication and thinking.
While the likelihood of having dementia increases with age, it is not a normal part of aging. Before we had today's understanding of specific disorders, "going senile" used to be a common phrase for dementia ("senility"), which misunderstood it as a standard part of getting old. We simply assumed as we aged we would lose our memory and it was normal. Some mild cognitive impairments such as poorer short-term memory can happen as a normal part of aging (we slowly start to lose brain cells as we age beyond our 20’s). This is known as age-related cognitive decline, not dementia, because it does not cause the person or the people around them any problems.
Dementia describes two or more types of symptoms that are severe enough to affect daily activities. The leading cause of dementia is Alzheimer’s disease. Dementia can also be caused by brain damage incurred from an injury or stroke, and from other diseases like Huntington’s, Vascular Dementia, Cruetzfeld-Jacob Disease, Frontotemporal Dementia, Lewy body dementia, Mixed dementia, and Korsakoff Syndrome.
Why is Dementia not addressed by physicians?
First, if you or a loved one are concerned about memory loss, you have to say it. Clearly. Provide some examples to illustrate your concern. Then, be aware of the following:
• Dementia symptoms can be so subtle initially that your loved one will acclimate to them, as will you.
• Patients frequently recognize they are having symptoms, and are so scared by them that they won’t tell anyone. The stigma and fear of dementia is so great they won’t tell their doctor- or you.
• Doctors may not know they are seeing dementia. They may not know all the symptoms because you haven’t written them down, and when you arrive it’s so overwhelming that you forget some of what you wanted to say.
• Doctors may see the symptoms separately, and misdiagnose. Depression mimics many of the early stage symptoms. Patients may react badly to being told this is “all in their head.” It really is in their head, but it’s dementia. And some dementias are accompanied by depression because of the impact on the brain. Lewy Body is one of those.
• You may not get the referrals you need because you didn’t know to ask for them. You should have a neurology referral, at a minimum, to a specialist in dementia and cognitive disorders.
• Symptoms can increase and change in an hour or a day or a month. If a patient has already been sent home being told this is normal aging or depression, they are unlikely to want to return to try again and to have to list more symptoms in the hope that they will be heard and listened to. LIST EVERY SINGLE SYMPTOM. DEMENTIA AFFECTS THE BRAIN, WHICH REGULATES THE ENTIRE BODY. YOU MAY NOT KNOW YOU ARE SEEING A SYMPTOM.
• Some doctors do not want to tell your loved one they have dementia. Dementia is not treatable like other illness. There are some medications that have a chance to slow it down for a time, but decline is inevitable. Doctors, like the rest of us, don’t like facing that some things are simply hard to accept, and that they can’t fix them. They want to keep patients positive and hoping for the best so they fight the symptoms. It’s done with the best of intentions, but families need to know if they are facing difficulties, and patients need to know this is real.
We are here to help. If you or a loved one are trying to cope with the onset of dementia and the stress it creates, we have an expert at CCS who can provide support, education, and a safe place to talk. Call us.