Dementia-- The Impact of a Diagnosis
Dementia-what is it? We hear this word thrown around lately by anti-Biden people, anti-Trump people, the media, and people in general. And it is not a term to use lightly, yet I see it more and more daily. The National Institute on Aging states, "Dementia is the loss of cognitive functioning—thinking, remembering, and reasoning—to such an extent that it interferes with a person's daily life and activities." The Oxford Dictionary defines it as "a condition characterized by progressive or persistent loss of intellectual functioning, especially with impairment of memory and abstract thinking, and often with personality change, resulting from organic disease of the brain."
There are many variants of Dementia (but for now, we will focus on two). The most common is Alzheimer's, which is typically progressive. When I hear the word, I picture a shriveled-up little old lady sitting in a corner languishing, waiting for the day when she doesn't wake up again. The other common form of Dementia is due to vascular changes, i.e., mini-strokes, each one slowly killing off a piece of the brain, making it more challenging to function, live alone, and perform ADLs (activities of daily living), and the progression can be slower. One day, a loved one may notice that mom or dad isn't the same. They get lost when driving, forget to turn off the burner or take their meds, have a short-term memory that isn't good, and may exhibit personality changes. They may be short-tempered and get angry when they are challenged about remembering something that you KNOW you told them ten times. But it would be best not to get angry because they know something is changing and are often frustrated and scared.
A physician typically makes the diagnosis after possibly talking with loved ones who are concerned, verifying it with a neurologist or geriatrician, gathering medical history, and perhaps performing a MoCA cognition test. It is a quick test used to accurately access short-term memory, visuospatial abilities, executive functions, attention, concentration and working memory, language, and orientation to time and place. Not doing well is not enough to make the diagnosis. Parts of the tests include counting backward from 100 by 7's. You are given a group of 5 unrelated words and, later in the test, asked to repeat them back, then shown pictures of animals and asked to name them. You are also requested to provide the day of the week, date, month, and year. The test is scored with a high score of 30; and 26-30 is considered normal cognition, 18-25 is a mild cognitive impairment, 10-17 is a moderate cognitive impairment, and under 10 is a severe cognitive impairment.
I have a challenging time with this test being a large part of the potential diagnosis. When I try this test independently, I don't always know the day of the week or the date. I believe this is not a fair assessment of a retired person. When given five unrelated words, I try to connect them to help remember them, but that isn't always that easy, and I have known to get them wrong in practice. As for pictures of animals, what if you never went to zoos or discussed animals with your children? Again, as a layperson, this is not a fair assessment. Yet this seems to be part of the potential diagnosis, along with history and family discussion. It is supposed to be used as a screening test, however, all too often it may be used to label a person with dementia, a life changing diagnosis.
So, what happens when a person is diagnosed as having Dementia? Essentially, the world as they know it stops, and often, rightly so. The problem, as I see it, is what if the medical professional is not with the
patient enough, or perhaps they don't have a history with the patient? Doctors are often mandated to spend limited time with Medicare patients. How can they be expected to give an accurate diagnosis? Remember, many people with dementia progress and will end up in memory care (and we have seen "silver alerts" where a person with cognitive decline wanders off, may be driving, or has left the house and is lost. However, some people with a dementia diagnosis can live independently or with their loved ones for quite some time. It is so variable.
Among the big questions, can they continue to live alone? Will they get lost, even walking in their neighborhood? What is their short-term memory like? Can they cook? Will they forget to turn off the stove?
One of the first steps is for the family to get involved, if possible, to see if they are in the earlier stages of Dementia. Perhaps they can live alone with "help." Or it may be time to move in with a family member. If there is enough money, it may be time to move them to a senior facility near family, one that, if they progress, they can remain there, but in different places, i.e., independent care, assisted care, and perhaps on to memory care.
In my opinion, the most accurate diagnosis, after meeting the medical staff, is to have a seasoned senior care manager spend a day with them. They know more about Dementia than most physicians, and they can help make an accurate picture of what your loved one can do daily. Perhaps they visit once a week for a few weeks to see if there is a decline or if they eat. They can spend a day shopping with them to see if they know what to buy in quantities and if they can cook. Can they take their medications as prescribed? If they are still driving, take a ride with them. Are they confused in their neighborhood? Are they seemingly safe? (In California, if a medical professional deems a patient demented, they must contact the County Heath and Safety Department, which then notifies the DMV. Depending on the level, i.e., mild, they will undergo testing by the DMV to determine if they can drive. Still, my understanding is that they will not be able to drive if moderate or severe, which is why it's so important to have the current diagnosis. I agree a person who gets lost and confused, whose reflexes are not what they used to be, should not be driving. But this has to be done so carefully and gently because this may signify the loss of life to an independent person. We need to be careful how this diagnosis is made and that it is accurate and told to the patient in a loving, kind way because this diagnosis will change the trajectory of the days they have left to live.
Will they have to move? Do they have to go to a new city and leave all their friends (who may be in similar positions)? Do they have to downsize and eliminate their China or other sentimental possessions? There are so many factors, and all so difficult. The reality is, as children (or spouses) of the ones with possible Dementia, we have gone through the scenario for months, if not years, but for the one with "cognitive changes," it may come as a huge surprise and major fodder for fights.
How do we deal with our loved ones with cognitive changes?
#1 Don't argue about things you remember or they remember. It shows them how much they have lost. And nobody wins.
#2 Don't ask them if they remember something. Especially in the early stages, it makes them much more defensive.
#3- Give them time to process questions; they can't tell you immediately if they want to—their brain works slower than yours.
How you can help loved ones in cognitive decline:
All medical illnesses must be ruled out before a dementia diagnosis is made. Can they see? Can they hear? There are many numbers bandied around, but upwards of 50% of Dementia can be prevented with hearing devices. I wear them now and am amazed at how many conversations I missed before I started wearing them. Is there a physiological component to your loved one's Dementia?
And for those with Dementia (and even those without), the number one thing is to increase socialization! I was just with someone who is showing some signs of cognitive decline, and due to where she lives, Covid, friends getting older, not going out at night, she is alone more. And this is the time in our lives when we need people! Look into 55 and older communities where there are activities and your brain is used. Join a senior center. Volunteer. Eat well, exercise, and drink water! As we get older, our thirst diminishes, and dehydration is a massive problem in older adults. In fact, by the time you are thirsty, you already lack enough hydration. Dehydration can result in weakness and fainting and also makes it easier to get a urinary tract infection. Did you know that UTIs mirror dementia symptoms, resulting in erratic mood swings and cognitive issues?
The good news is we are living longer—and while science is providing many answers to illnesses for a failing body, we still have a long way to go with the effects of Dementia and Alzheimers as we get older. Don't toss around these terms easily. Be sure your loved one can hear and see and has a social circle. If you feel a diagnosis assessing cognitive decline is needed, be sure the test is well-rounded and fair for your loved one. There is much at stake.