Spotting Symptoms of Dementia

There are no X-ray glasses for this one, folks. Spotting potential symptoms of dementia is nothing more than noticing signs of drastic changes in physical behavior, emotional behavior or mental stability. Unfortunately, those same changes could mean that the person is going through menopause, suffering from mild depression, or developing an easily treatable medical condition like thyroid disease or high blood pressure. However, because people have rights, because of strict HIPAA laws, and because it is not against the law to be crazy, we have a brief opportunity to encourage people to voluntarily get the mental health help they need before the disease progresses to a point where the person will no longer cooperate and our only recourse is the court system.

To complicate matters further, bizarre behavior for one person may be normal behavior for another. That means it is up to us as relatives and caregivers, neighbors and co-workers to figure out whether the behavior is unusual enough to raise an alarm. Many people just aren't willing to get that involved. Why? Because what if they're wrong? What if they're right?

Regardless what you do, there is potential for a negative outcome:

• Stay silent - you could endanger the person with dementia.
• Speak up - you could embarrass a person who does not have dementia.

But there is also the potential for a positive outcome:

• Stay silent - you may avoid an embarrassing and hurtful situation for the person who does not have dementia
• Speak up - you may prevent a person with dementia from harming themselves or someone else.

It's a coin toss and a very unpleasant one. THAT is the real madness of dementia: identifying it and getting people into treatment before the disease takes over.

So let's assume that you've made the decision to look for symptoms - and frankly, I believe that's the right decision even if you risk offending somebody- what do you look for? Keep in mind, I'm not a doctor. I'm a daughter. So there may be PLENTY of things I don't know and have not seen. But here are a few jumping off places:

• Not sleeping - I'm not talking about ordinary insomnia here. My mother started staying up at night. She would go through her papers and belongings and tell us she was cleaning or organizing or working on some project or another. But she'd be up most of the night.
• Repetitive conversations or phone calls - Now, we all know that the older we get, the more likely we are to forget who we've told what. But a person experiencing early symptoms of dementia may be more like a scratched record. They may ask the same question within moments of you answering it. They may call you several times a day thinking it is the first phone call. 
• Muttering - People with dementia often mutter to themselves. They may not even know they are doing it. Or, they may be responding to voices in their head.
• Voices - Yes, they may actually hear voices. When my mother first started hearing voices, she described them to me as a crowed room with everyone talking at once. She couldn't make out what anyone was saying. This was before she displayed any other signs of dementia. I was alarmed but thought she maybe it was white noise from an ear infection and told her to go see her doctor which she did. I never knew for sure what the doctor said. Because of HIPAA laws, I was not allowed to talk to the doctor so I took Mom's word for it that she was fine.
• Hiding and losing things - While Mom was not sleeping, she was also hiding things which she would later forget she hid. She would hide her medications, her ATM card, her favorite dress, and her late father's briefcase.She would lose her cell phone every single day and one of every pair of shoes she owned.
• Accusing people of stealing - All those things my mother lost or hid? Yeah, she accused her grown children of stealing them and she was absolutely serious. When my grandmother had Alzheimer's, she had a red coat that she insisted the neighbor broke in the house and stole. It became routine for her to call the police and for them to go to her closet and show her the red coat hanging there.
• Does not accept reality - That red coat story? Well, my grandmother said the neighbor had come back in the house and returned the coat to the closet to make her look foolish. My mother did similar things. She would insist somebody had crawled in her window and I would show her the dust was undisturbed. The burglars were clever and put the dust back after they left.
• Angry outbursts - This was a toughie for us to notice. My mother was prone to angry outbursts her whole life. And she'd always accused us of stealing things so we really didn't recognize this as a sign of dementia. But if a person who is normally kind suddenly becomes combative and verbally abusive, it is easier to detect as a sign of the possible onset of dementia.
• Shadow people - my mother began seeing people, animals and things that weren't there. She saw shadowy people climb in her window, people peeping at her through the kitchen window, and people climbing her fence.
• Hallucinations - This one is also tough unless you are with the person when the hallucination happens. My mother thought there were cows in the middle of the road while we were driving down the street, she would hand me invisible things, and see things floating in the room. Then, as the disease progressed, so did her hallucinations. She did the most humiliating and undignified things like defecate on the floor but she thought she was in her bathroom.
• Illogical recollections - If a person doesn't drive a car and says they drove to the mall and spent the day shopping, red flag! If a person says they've been cleaning house all day and the place looks like an episode of "Hoarders", red flag! People with dementia are not experiencing full time reality and may be giving you an account of something from weeks, months or years ago that they genuinely believe happened today.
• Odd clothing - When people who have always dressed properly begin wearing mismatched clothing, forget a bra, wear one shoe and one snow boot, they are not working with the same mental tools they once were.
• Butterball naked - For real. If your loved one answers the door naked because they can't find their clothes, their clothes are in the wash, somebody stole their clothes, or they don't know they are naked, giant RED FLAG.
• Accidentally taking wrong medication or wrong doses - This is a big one. People with dementia cannot take their own medications. They forget. They take too much of one or not enough of another. So if you suspect dementia, check the prescription meds. See what dates the medications were filled, check the dosage and count the pills. If the math doesn't work, there could be a problem.
• Not wanting to bathe or shower - It is very common for people with dementia to become fearful of water. They will often say they have already bathed when it has been a week. If you notice filthy hair and body odor, check the tub and shower to see if they're being used.
• Forgetting to eat -  I don't really understand it but it is very common to forget to eat or to recall eating a meal that never happened. For this reason, adults with dementia may go long periods without eating unless reminded.
• Weight loss - dramatic weight loss may be a sign that someone is forgetting to eat. My mother was thrilled to be dropping weight and thought it was because she was dieting. She told me it was because she was eating so much soup. But when I checked her pantry, I found the same four cans of soup I had taken her to the store to buy two weeks earlier. I had marked them each with a Sharpie.
• Diarrhea - There are a lot of reasons that people with dementia experience diarrhea:  not eating but still taking in plenty of fluid like coffee and water, medications, etc. If it becomes chronic, however, this could be the beginning of the next symptom on this list.
• Loss of bowel and bladder control - Something happens in the body where signals slow down. One of those signals is the one that tells the person to hold their bowels or bladder. With my mother, this was a gradual loss but with many patients I've know, it was a sudden loss, like a light switch went off and they were never again able to live without adult diapers.
• Weeping - Unexplained crying can be a sign of a lot of things. In early stages of my mother's dementia, sometimes she did not even know she was crying. But she developed PBA (pseudobulbar affect) where she could not control her laughter or crying. Not all dementia patients develop PBA but it is very common for them to recall and cry over past losses and disappointments as if they are occurring right now.

All of these sound like obvious warning signs but they are not. Each one begins very subtly. They begin mildly and progress. Nobody thinks about asking their mother to see a psychiatrist the first time she walks around with untied shoes. And, she cannot be forced to go. She is an adult with rights and is assumed competent until proven otherwise in a court of law. But it is in these early stages that we have a brief window of opportunity to get the person's cooperation before dementia takes over. This is chance to ask them to put us on their HIPAA forms so we can talk to their doctors, to request MRI's, and to make a list of their medications and doses. Because later, when the disease progresses, they can can say 'no' and when that happens, the only way to help is to go through the legal system.