Confessions About the Remarkable World of Dementia

/ Dementia /

Dementia. Memory loss. Alzheimer’s disease. Confusion. Cognitive impairment. Neurocognitive disorder. What does it all mean? Are these all words used to describe one condition, or are they different? Does everyone with dementia (or whatever term you use) act the same? What can I expect?

When a person is diagnosed with dementia or any other term relating to cognitive impairment, it’s frightening. What is known for sure is that life is going to change, but the terrifying question is how, and in what ways will those changes affect life and how it’s lived.

Although there are some similarities in how dementia affects those diagnosed with it, everyone is different. There are a whole host of symptoms, and not everyone has every symptom. Bill Thomas, the founder of The Eden Alternative, says, “If you’ve met one person with dementia, you’ve met one person with dementia.” Dementia is an umbrella term for several specific diseases (including Alzheimer’s) and there are many factors involved in how it looks in each person. Some of these are:

  • the specific diagnosis
  • how far along they are in their disease
  • the person’s personality
  • the environment
  • the responses of those around them
  • evidence of a second disease or infection (and example of a disease could be heart disease, or diabetes, and an example of an infection could be a urinary tract infection. Most people have more than one thing going on, and this affects everything.)
Some of the challenges a person with dementia might have related not only to their memory, but how it affects what they do in a day, and how they are able to do it. As the disease progresses, the person with dementia will need more help in multiple areas.
Doing more than one thing at once. This might be as simple as being in a room where more than one conversation is happening, or listening to music while eating, or trying to perform a task while someone is talking to them. A care partner might become frustrated when they keep stopping, but it helps to understand the difficulty their brain is having in keeping things organized when there is more than one input. Be aware, and try to  keep it simple.
Making decisions, planning and organizing. This might seem obvious, and the temptation of many care partners is to take over this entirely. Early in the process, activities like paying bills and remembering appointments falls to the care partner, and it’s tempting to fall into the habit of making all the decisions and plans. Don’t do it! The person with dementia has opinions, can decide and has preferences. It takes time and patience, but it is important to their humanity that it occur every day. “Would you like to eat corn flakes or porridge with breakfast? Shall we read a book together or go for a walk? Do you like gardening or watching TV?” Ask, and give time for the answers.
Remembering. This is the best known aspect of dementia, but it is far more complex than we realize. As care partners, if we can understand some of the memory issues, we can have greater empathy and help our loved ones through the process. Dr. Richard Taylor, a clinical psychologist and PhD who was diagnosed with dementia, probably of the Alzheimer’s type, writes about his issues with memory.

“I have good days and bad. Good hours and bad. Good moments and bad. There is no predicting when and how the bad ones will come, except when I am very tired. Sometimes, I am aware I am floundering and cannot seem to hold myself together. it’s strange watching yourself misdial a phone number, time after time after time. Look for a name and then forget what I was looking for right in the middle of my search. Stand up from my chair to do something, and not have a clue what it was. Most dangerous for me are the moments I do not understand but think I do, or do not remember. I say things, I tell people things, I think I understand situations that are not true, a little true, or from out in left field, and the worst part of it is, I don’t know when each of these moments is happening. Will I do something on this date? Sure. Except I wrote it on the wrong month in my calendar and didn’t find it for three weeks. Can I do this? Of course! When I really did not understand what is required of me, and just said “yes” for reasons that only Dr. Alzheimer’s understands.” 1.

As a care partner, it can be frustrating keeping up with and understanding the thoughts and actions of the person with dementia.

But imagine living with it.

  1. https://www.dementiaallianceinternational.org/thoughts-on-dementia-by-the-late-dr-richard-taylor/

Next week: How dementia affects perception, interactions with others and language.

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