Dementia is not a one size fits all type of diagnosis. It is as unique as each of us are. There are many physical similarities from one healthy brain to the next but how the mind function can vary with our upbringing, our experiences, our habits and lifestyle. Add Dementia to the mix and the outcome can vary even more! Dementia is a general term for loss of memory, language, problem-solving and other abilities that are severe enough to interfere with daily life. In more blunt terms it is the beginning of brain death. For some, it is a quick process for others it can happen over the course of a decade. Through my own experience living with it and through reading countless reports of others' experiences I've put together what I've seen as the most common pitfalls when trying to communicate with someone affected by Dementia. My hope is that this will help identify the things that we all do that can make situations more difficult and how to minimize it as much as possible. I know that I did not know what I was getting into and chances are my family didn't either. If I've left anything out that applies to you or your loved one, please comment below.
1. Cryptic questions: This includes sarcasm, indirect queries and passive aggressive comments. We will simply not understand what you are trying to say. We will most likely assume we have done something wrong but will not know what it is. This will agitate, irritate or outright infuriate us. Asking a simple question such as, "Were you doing laundry yesterday?' seems harmless right? But to us, it starts us down the rabbit hole of wondering what we forgot, what we spilled or possibly ruined. That's just the way our minds work! I would suggest asking direct questions, make statements and ask for any clarification that you need. For example, "I noticed that the clothes were in the washer, the laundry soap bottle was open and the laundry door was open. Can I help you finish the laundry?" We may still get embarrassed, cry, get angry, refuse any help or deny we touched anything. Or we may simply say, "Yes." The difference is that we now have a complete picture of what you're referring to so your question and your intent is clear. Keep in mind how we respond will vary from hour to hour and day to day. And as our comprehension abilities lessen the questions will need to be simplified or not asked altogether. Once it gets to that point, it is left to you as our caretaker to use your best judgement and complete whatever task was left undone or done incorrectly.
2. Firing off multiple thoughts or questions: As a general rule, once we've gotten a medical diagnosis of Dementia it is fair to assume our processing speed has slowed down. We no longer have the ability to take in complex information quickly. We can not retain and then redirect information from topic to topic and keep track. Some of us will try to hide this, some of us simply zone out and some get angry. Or we may do all of the above on any given day. Try to keep the questions to a minimum, wait for complete answers to be given before asking another question. If we are focused on a task, please wait until we have completed it before asking. Please keep statements simple and to the point. If you start firing off things like, "Sue was doing this and then Mary said that and Tom went over and started bringing up this..." Trust me, we are no longer tuned in. It's not that we don't care, we just can't keep up. I would suggest, "Sue was whining about the food again. It was embarrassing." If we are still following along then keep going. If we ask who Sue is then you will have to give us cues to remind us and may have to repeat the entire first statement again. Please try to be patient, we do not like the fact that we can't remember any more than you do. But we are doing the best we can.
3. Plans, Plans, Plans: Personally speaking, there is nothing more overwhelming or anxiety triggering than hearing about my, our or your plans. I don't know why but it evokes extremely strong reactions from me. Once someone starts listing off all the things they or we have to do that day, week or month I look for the nearest exit. I highly recommend waiting until the day the appointment or event is to occur to bring it up and ask if we feel up to it. This allows us to decide in that moment on that day if we can handle the situation. If we say, "No." Please respect it and move on. I guarantee that if you ask me if I want to go swimming next week on Saturday I will automatically panic and say, "No." But, if I'm having a good day and you ask, "Would you like to go swimming with me today?" I will most likely say, "Yes."
4. Starting a sentence with "Do you Remember?": Nothing makes me want to roll my eyes farther back in my head than this question. I wish I could erase it from existence! Instead of asking your loved one if they remember, simply turn it to yourself and say, "I remember the time you or we did this and I felt...." That's it. We may not remember but we will appreciate that you did and enjoy hearing how you felt. Try to keep these memories positive. Negative emotions do us more harm. Please be kind. We may have hurt you, embarrassed you or acted inappropriately but it will not help anyone to remind us of it now. Also, if we remember something incorrectly, just roll with it. We won't always recall things correctly and no matter how many times you tell us we will still not retain this new information. I would suggest acknowledging our statement, redirecting and moving on to something else.
5. Overstimulation: As our brains deteriorate, so does our tolerance for stimuli. This includes loud noises, multiple people talking at once, music or tv playing while people, cars go by or just a lot of activity happening at the same time. I would suggest keeping this to a minimum. Look for and recognize the signs of us getting agitated, zoning out, anxious or overwhelmed. If you notice any of these reactions take immediate action to remove us from the situation. Please do not ask us questions, just gently guide us to a more quiet spot or take us home.
6. Choices, Choices, Choices: Another anxiety inducing thing for us is being given multiple choices. Whether it be what show to watch, what food to eat or where to go. Again, keep it to a minimum of two. If we still can't decide then decide for us. This may go against what you've previously experienced with us when we were fully capable of making decisions. It will feel controlling or seem that way to others but I can tell you honestly that we don't really have strong convictions at this point and just appreciate that you are taking care of us. We just don't have the ability for initiative or decision making any longer.
7. Shame: This should go without saying, but you'd be surprised how many times I've read that loved ones are shamed for forgetting events, misplacing items or doing things that are considered socially inappropriate. Yes, it can be frustrating that you took time off work to take your loved one to an appointment and you find them still in bed with no idea they told you yesterday they'd be ready. Getting angry and shaming them for wasting your time or money will only make matters worse. We are no longer aware of social norms, political correctness and the effects of our behavior. We can no longer adapt to this world, it is now up to you to adapt your expectations to our world. No one says this disease is easy.
8. Assuming that today will be like yesterday: Our days vary on any given day or time. We may filled with piss and vinegar in the morning but be laughing by afternoon and back again by evening. The brain is continually misfiring and we are subject to that. SO just because we had a great day yesterday and went for a walk or watched a movie does not guarantee we will do the same tomorrow. In my experience, if I have had an outing or did something that was exhausting the day before the chances are high that the next few days I will want to lay low and be left alone. I've just tapped my mental, physical or emotional reserve and it will take a few days to recharge. This will be especially true if I'm fighting any type of cold or illness, which is more likely than not at this stage of our disease.
9. Helicopter care: As caretakers, you worry about us, fret over our safety and would love nothing more than to help us with everything to make our lives easier. For those of us still semi-independent it can become frustrating or demeaning if you state your doubts of our ability to do something, hover over us as we try to complete a task or simply take over if we drop something or make a mess. Please allow us to try, if we become agitated, distressed or fall then it is time to step in and try to assist, redirect, reassure or guide us to a quiet place.
10. Telling us what we can't or shouldn't do: For the most part we already know what we can't do, we have probably been hiding it from you for months for fear of losing independence or embarrassment. I ask that you let us try to do whatever it is we're trying to do if it doesn't endanger us or anyone else. Reminding us that it is not safe or acceptable does not curb our impulse to do it. If it is harmless, just let us carry on and try not to get annoyed with us. The saying, "We won't remember what you said but we will remember how you made us feel." has never been more true than when living with Dementia.
This is just a short list of the most common things I've experienced or heard from others living with Dementia or caring for someone with it. I hope it helps alleviate or avoid some pitfalls that we encounter in this difficult journey. There is no guarantee how your loved one will respond to the suggestions I've listed but I hope it's given some insight and a starting point on how to effectively communicate with those of us living with Dementia. Thank you for caring for us. We need and appreciate you even if we can't show or express it anymore. <3
