It’s become common to incorrectly use the term Alzheimer’s to describe all kinds of dementia. Dementia is the loss of memory and the ability to think, to solve problems, and to use reason. It affects memory, intelligence, judgment, language, and behavior.
There are a number of subcategories under this broad term, including Alzheimer’s, multi-infarct dementia (which is stroke-related), senile dementia, and alcohol-related dementia. Historically, all the types of dementia were called “senility.”
An older person with some form of dementia “became senile.” Certainly your carereceiver has heard of and known people who have “lost their minds” (to use another common expression) as they have aged. Even if your loved one is seriously incapacitated because of physical problems, he or she may proudly and thankfully state, “At least I still have my mind.”
Of course he or she is worried about Alzheimer’s. The disease has become well known, and it—or any form of dementia—takes a horrible toll.
These are some points to consider:
Dementia impairs functioning. Some memory loss is common as we age. What’s not normal is significant memory loss, but it can be hard to tell what’s “significant.” If Dad’s memory loss impairs his daily activities, if it affects his independence, it’s serious enough for concern. In the case of dementia following a stroke, the changes may be obvious and sudden. If brain cells are damaged by a series of small strokes, the changes may be difficult to notice because they’re so gradual.
You may see changes in your loved one’s personality. Your wife was once so prim and proper, but now four-letter words are part of her speech. Your husband was always so gung ho, but now he just sits quietly.
Dementia will affect your care-receiver’s daily activities. He may be confused about what time of day it is. If she is out and about, she may get lost even in a familiar place.
It’s frightening. If the decline is gradual, your loved one may be aware of it in its early stages and be very frightened. He knows something is wrong. He may feel frustrated, depressed, and angry and want to isolate himself.
A doctor can help. While there may not be a way to positively confirm Alzheimer’s disease, your mother’s doctor can eliminate other possibilities with a CT scan or an MRI. If she’s suffering from memory loss for reasons other than dementia, it may be possible to stop and reverse what’s happening. (Dementia, on the other hand, is a progressive decline.) The cause could be a new medication, a combination of the medications she’s taking, or a change in her metabolism that’s altered the side effects of a medication she has been taking for some time.
You shouldn’t accept an on-the-spot diagnosis of Alzheimer’s. Ask for additional testing. Ask for a second opinion. Ask for a psychiatric workup. Ask if there’s a nearby university medical center conducting dementia assessments.
And if your loved one is diagnosed with dementia, these are some suggestions for you:
Get support for yourself. Become educated. The road ahead won’t be easy, but it may be less frightening or surprising if others are there to help you and if you know what, typically, dementia can bring. Remember: while dementia is progressive, it doesn’t follow a set pattern or time schedule.
Having gone through a particular stage doesn’t mean your loved one won’t return to that problem or show those symptoms again.
Help your care-receiver with modest memory loss. In the early stages, you can help him with his remembering by writing notes, setting up a calendar, leaving messages, and so on.
Remember that this is out of the person’s control. As the condition progresses, keep in mind that Mom can’t control what’s happening. She may need to be constantly pacing or to repeat the same question over and over. It doesn’t do any good to say to her, “I just answered that.” Instead, keep your response short and simple and then try to help her move on to another subject.
Be aware that the person may exhibit what’s known as confabulation. Your husband may make things up to fit the circumstances. If he’s lost his wallet, then “someone broke in the house last night and stole it.” If he’s been standing on the wrong corner waiting for a bus that never came, then “the bus company changed the route and didn’t tell anyone.”
Try to accept the facts. Your wife may not remember all that you’ve been doing for her lately. And, in fact, she may tell others that you’ve neglected her. It can help to look at your spouse’s dementia the same way you would view any physical illness: if she had had a stroke and was no longer able to get out of bed, you wouldn’t hold it against her that she didn’t come to the dinner table. At the same time, it hurts when we do something for someone and we feel we’re not appreciated. Remember, it isn’t that she isn’t grateful for what you’ve done; she simply doesn’t remember it.
Realize that communication may be affected. Your parent may experience aphasia, the inability to come up with the right word at the right time. This will make expressive language difficult. If Mom has trouble with complicated questions (“What did you have for breakfast today?”), substitute a series that can be answered with yes or no. (“Did you eat breakfast today? Did you have toast? Did you have fruit?”)
Don’t jump to conclusions. If you live a distance from your aging parent and he’s been complaining about the treatment he’s receiving from family members or professional caregivers, don’t jump to any conclusions. Check it out. Maybe he needs help, or maybe he just doesn’t remember all the good help he’s getting.
Stay positive. If your aging parent doesn’t remember the things you’ve been doing for her or the times you’ve visited recently, don’t scold her about it or test her. Calmly mention the meal you shared a few days earlier or the television program you enjoyed together. There’s no point in trying to get her to admit she was wrong, to admit that you’re helping. Just state the fact and gently move on.
Look into arranging respite care for your loved one. This could take place overnight, for several hours at home during the day, or for a full day at an adult day center.
Remember that dementia is progressive. Your care-receiver will experience a loss of present skills and the ability to learn new things. He or she is going to become more and more dependent on you.
Do the best you can in providing care but accept the fact that your loved one may reach a point where you’re no longer able to be the primary caregiver. He or she may need to move to a skilled-care facility.
Don’t be surprised if you begin to grieve before he or she dies. One of the great heartaches of dementia is that your loved one can slip away long before his or her body quits working.