Dementia Is Not A Disease

It is a title worth repeating. Dementia is not a disease. It is the result of symptoms from other diseases, most commonly Alzheimer’s disease. You know what, though? As comforting as that is meant to sound, it probably isn’t very much at all. If you have a loved one that has begun to show signs of dementia, odds are your world may feel turned upside down. The person you know so well has only been known to you based entirely on his or her ability to communicate in some way or another. That ability to communicate is what you are missing now and what has taken its place is confusing, to say the least. There is one conclusion you may feel tempted to arrive at, as so many others in your position have before. The notion that the person you knew is “slipping away” or has “gone away” is a misnomer that you can start resisting immediately. We will be able to walk through some very difficult adjustments but without that sense of loss. ‘Loss’ is not the word. ‘Change’ is the word and while it may present its own challenges, it certainly carries with it more hope than ‘loss’.

Let’s start with memory loss. After all, we already know how likely it is that Alzheimer’s Disease is also now a part of your life. Memory loss alone, however, is not a sure sign of dementia. There are other areas of impairment combined with memory loss that you need to look out for, such as:

Language
Communication
Focus
Reasoning

So, up until now, you may have been able to sum up the person you love with a composite of memories. Where they’ve been was always a reasonable place to start when telling their story. Furthermore, it only makes sense that you wouldn’t even know those things without his or her ability to express him or herself. Again, the impact on these aspects of the person will not be easy to get used to. However, before you arrive at the conclusion that the absence of familiar details equals the absence of the person you love, consider this. What if these details were merely rearranged, taking on a new form? Do you know what that means? It means you have some work to do if you wish to regain and recover your relationship. You must listen. If you do this, you will find that your loved one has gone nowhere.

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Once you learn to listen again and observe this new presentation of the person you love, you will have a number of behaviors or traits common to dementia that will allow you to re-assemble your perception of your loved one.

Making sense:

Just as you will learn the person has gone nowhere, neither have their thoughts. The order in which they are expressed, on the other hand, may change so drastically you have a hard time making sense of what the person is saying. Your new exchanges may be frustrating but you must continue to listen. On a good day, you will get the gist of what your loved one is saying. On tougher days, you still made them feel as if they are being listened to, which is a feeling we all crave. It is important not to forget that.

Location, location, location:

Imagine your mind has a GPS. Whenever it senses you are off path, it re-calculates your route. This may be happening quite frequently in the mind of someone with dementia. So, expect their focus to repeatedly be on ‘getting home’ or ‘getting to work’ or some other familiar route. You can help by simply re-programming that GPS and assuring them that they are in the right place.

Who are these people?

This feeling might just be the easiest for you to understand. If you have ever been hospitalized, you may be able to identify your surroundings but there is still a great deal of unfamiliarity now sharing an intimate space with you. This includes fellow patients and caretakers. Hopefully, if you find a long term care facility for your family member, he or she will make friends. Watching those with dementia make friends is not only heartwarming but a reinforcement of previous points made here. Little sense might be made out of an exchange between two people with dementia but there is no doubt that true bonds are still formed. And they’re strangers! As for the caretakers, those that have found their calling may find it easy to get to know your loved one but regardless, they could use any help they can get. Ask if they have questions. Give them tips.

As you will find in this new stage of life, for both you and your loved one, major financial or estate matters may enter the picture. Your own powers of perception will be challenged like never before simply by adjusting to what has happened to the perception of that family member. Just remember that we use the word ‘dementia’ simply to categorize and make sense out of someone who has changed form in a way. They are not less of a person. They are still a person. Dementia is not a disease. It is a chance to get to know someone you love all over again.