My last post was about the ten most common conditions that can look like the onset of dementia; this time, I thought I’d talk about the ten most common warning signs of dementia. The sad part is, this disease is usually so insidious that by the time dementia is suspected and investigated, a person can be well over four years into the disease. Some of the early warning signs such as forgetfulness, loss of concentration, and withdrawal from social situations can also be the result of depression, anxiety, or stress. In many cases, these symptoms are by-products of exactly that and can be treated with medication and/or therapy.
I still don’t know exactly when things took a turn for mom. She had developed what I would call “amplified” versions of her normal personality traits over a number of years; however, I think a lot of that could have been attributed to her developing a routine and not wanting to step too far away from her comfort zone. All perfectly normal, until they’re not. Hindsight being what it is, when I read through the early signs of dementia, I could instantly apply them to mom’s behavior. Even with all that, the lines can still get blurred. What’s normal and what’s not?
Ten Early Warning Signs of Dementia
1) Memory loss that is disruptive to daily life. Forgetting a random appointment now and then has happened to all of us. Two or three times a year is perfectly normal; we get busy and things sometimes fall through the cracks. The first thing that comes to mind concerning mom is I used to call her at 10 am every Saturday morning and we’d talk for one hour - nothing more, nothing less. This was her idea since it fit into her schedule and we did it for years. Then it started changing - she would act surprised I was calling, she’d be done talking in ten minutes, or she would seem really distracted. I couldn't figure out what was going on then but, looking back, it’s most likely she wasn’t able to recall what she had done in the last week and me asking specific questions probably made her very uncomfortable.
2) Retaining recent information or solving problems becomes a challenge. Mom has always been a list maker and when she discovered Post-It Notes it was a coup for her and for 3M. However, when we went to empty her apartment I was shocked at the number of notes and lists that were everywhere, even in her car. Some of the notes were a little odd: “Car is parked on the left”, “Sue called and her husband is sick”, “Melissa has a new job”, “Saw Marjorie and she looks good”, “The movie we went to on Sunday was Jurassic Park.” A lot of them seemed to be there for her to use as a reference or a prompt for when she was having a phone conversation.
3) Difficulty performing or finishing everyday tasks at home or at work. Mom had apparently stopped cooking and using the microwave, something that she used to do on some level every day. She had also stopped driving but for how long I have no idea. One of her water aerobics friends later told me that mom had asked her to lead the way back from the gym to mom’s apartment - where mom had lived for almost thirty years.
4) Confusion with days, time, seasons, or places. Most of us have had a moment when we think it’s Sunday but it’s really Saturday as in, “I’ve been thinking it was Sunday all day.” Once we’ve clued in, what day it is usually sticks - perfectly normal. Over a short span of time before her diagnosis, I had noticed that mom was progressively forgetting important dates or events, even those she wrote down, which was very unlike her. If I mentioned it she would get irritated or change the subject so I didn’t push. Now, she doesn’t know what day or month it is, or even the season.
5) Changes in visual perception. Most of us can use steps or step down off a curb with hardly a thought. A change in gait or a hesitation where there was once none can be a sign of cognitive change or failing eyesight. Hopefully, it’s the latter. Looking back on one of mom’s last visits here, she was extremely cautious getting out of her chair and walking around the hassock - enough to where Bill and I both noticed and, at this time, she had no problem with mobility. She also insisted on nightlights in the bedroom she was sleeping in, down the hall, and in the bathroom where before, one in the hall was plenty. Not a big deal, just peculiar. Once again, we just thought her weird idiosyncrasies were just getting weirder.
6) Unusual problems with words in both speaking and writing. Having a word or a name on the tip of our tongue but not being able to come up with it happens to all of us. Losing track in the middle of a conversation, or no longer having the ability to follow verbal cues or answer simple questions can be signs of trouble. We could always tell when mom was losing interest in a conversation but when she started losing track of what we were talking about or saying something that didn’t fit we knew it wasn’t normal behavior.
7) Misplacing things and not having the ability to retrace steps to find them. This is where the all too common “someone is stealing my stuff” comes in. Mom has always had all kinds of tiny decorative boxes sitting around and she was forever placing something in one of them and then forgetting which one but, eventually, she’d remember. If she does that now it can be weeks before we find the missing thing in the back of a drawer, in the refrigerator, or in a pocket of something she rarely wears. For a while, she was convinced someone was stealing her underwear. I promised her that of all the things in her apartment her underwear was probably the least likely to get stolen. Turned out she was putting them in a cabinet - mystery solved.
8) Poor judgment. Making a bad decision every once in a while happens and, when it does, we usually own up to it and fix it. Lesson learned. A change in judgment or doing something that is so far out of character that it’s alarming is a warning that something isn’t quite right. When mom was still living on her own, I remember her telling me that she had made a friend who was a stock car driver. That struck me as strange since a stock car race track would be one of the last places you’d ever find her. She then told me that he wanted to paint her name on his car and how flattered she was. I’m sorry, what?? I asked her if they were dating and she said no. I asked her if she had been giving him money and that’s when her talking about this guy stopped dead - I’m pretty sure the answer was “yes”. It wasn’t too long after this conversation that she fell and was diagnosed with dementia. I had the opportunity to meet stock car man and creepy doesn’t even begin to describe him - he quickly figured out that I wasn’t a fan and backed off. I’ll never know if she did give him money, and really, I don’t want to know.
9) Disengaging from social activities and hobbies. This can also be a sign of depression, so it bears investigation. Mom has always loved to socialize and go out; her social schedule would have exhausted me but she thrived on it. If an event got canceled due to weather or because someone was ill she would be crushed (not an exaggeration). Also, mom had played bridge for decades and was part of a group that met once a month to play; she loved the game and was quite good at it. Then, seemingly out of the blue, she stopped. I asked her a few times what had happened but I never got an answer and the same thing happened with going out with friends. I think part of the reason she stopped going out is that if she got up to use the restroom, she would forget how to get back to her seat or get turned around. She must have been so sad and scared but she never said a thing to me, she simply blamed the weather or some other circumstance for her not going out.
10) Changes in mood or personality. Again, this behavior could also indicate depression or an issue with medication so a call to a doctor is definitely in order. In mom’s case, she always had a specific way of doing things and certain preferences that sometimes seemed extreme but we knew they were normal for her. For instance, when she went to the airport alone she would call an Airport Express type of service to drive her to and from the airport and did it this way for years, perfectly normal. Then she changed to paying a friend to drive her and pick her up. Not entirely unusual, but odd. From what I put together, I think that telling someone she didn’t know which terminal she needed, coupled with being let out where it was convenient for the driver and not necessarily for her, and then not knowing where they were parked to pick her up got to be too much. If it was a friend, she could convince them to meet her at baggage claim and not worry about getting lost. Even if she forgot who dropped her off, she could be pretty sure they would call out her name when they saw her. The energy she expended trying to be “normal” had to have been staggering.
Even if I had all of this information or had thought to look it up when mom first started to change I don’t know if I would have taken the leap to have her looked at. Dementia isn’t obvious like a cough or a rash and things don’t change all at once. And when things do change and we question what may be going on, those first interactions can be met with denial and hostility which, being forever the “child”, can silence us for a time - until things become more pronounced or dangerous or catastrophic. Sadly, early intervention is no guarantee that dementia symptoms can be slowed down and, with the decline in funded research and the current lack of promise as far as drug therapies go, those of us who are watching the people we love change can do nothing more than care for them the best we can and learn from and lean on each other.