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FAQs (Frequently Asked Questions)
NOTE: People with dementia may have questions very different than those first listed here. Scroll down to learn what people with dementia frequently ask us, and what we tell them.
What is dementia?
Dementia is a disorder caused by the death of neurons in the brain. These deaths result in problems in the brain that make it harder and harder for a person to remember, to learn new things, and to communicate. After a while, it becomes hard for the person to take care of personal needs. Eventually the person may need to be feed, bathed, dressed and supervised in every activity of life.
Dementia may also change a person's mood and personality. At first, memory loss and trouble thinking clearly may bother the person who has dementia. Later, disruptive behavior and other problems may start. The person who has dementia may not be aware of these problems.
What causes dementia?
Dementia is caused by the destruction of brain cells. Currently doctors believe that a build up of protein plaques and tangles in the brain cause the cell death in Alzheimer's disease. However, a head injury, a stroke, a brain tumor or insulin reactions in insulin-dependent diabetics can also damage brain cells.
Alzheimer's is the most common cause of dementia. Dementia with Lewy bodies, vascular dementia and frontal lobe dementia (Pick's Disease) are other common causes. Many other diseases may result in dementia as well. Some people have a family history of dementia.
What are some common signs of dementia?
Dementia causes many problems for the person who has it and for the person's family. Many of the problems are caused by memory loss. Some common signs of dementia are listed below. Not everyone who has dementia will have all of these signs.
Loss of recent memories while distant memories are preserved. All of us forget things for a while and then remember them later. People with dementia often forget things, but they never remember them. They might ask you the same question over and over, each time forgetting that you've already given them the answer. They won't even remember that they already asked the question.
Difficulty performing familiar tasks. People who have dementia might cook a meal but forget to serve it. They might even forget that they cooked it.
Problems with language. People who have dementia may forget simple words or use the wrong words. This makes it hard to understand what they want.
For some, balance problems are among the first noticed.
Time and place disorientation. People who have dementia may get lost on their own street. They may not know the day, the month, or even the year. They may forget how they got to a certain place and how to get back home.
Poor judgment and lapses in attention. Even a person who doesn't have dementia might get distracted. But people who have dementia can forget simple things, like forgetting to put on a coat before going out in cold weather. They may have problems completing tasks requiring more than one step or deciding which things should take priority.
Problems with abstract thinking. Anybody might have trouble balancing a checkbook, but people who have dementia may forget what the numbers are and what has to be done with them.
Misplacing things. People who have dementia may put things in the wrong places. They might put an iron in the freezer or a wristwatch in the sugar bowl. Then they can't find these things later. Because they do not remember moving things, they may accuse others of moving or taking their things.
Changes in mood. Everyone is moody at times, but people with dementia may have fast mood swings, going from calm to tears to anger in a few minutes. As things become more and more difficult for them, they may be very frustrated much of the time.
Personality changes. People who have dementia may have drastic changes in personality. They might become irritable, suspicious or fearful.
Loss of initiative. People who have dementia may become passive. They might not want to go places or see other people. They may no longer be able to initiate activities they would otherwise enjoy.
What if I have any of these signs of dementia?
Talk with your doctor. If you are able to, bring your concerns to a neurologist experienced with dementia. Your doctor can do a series of tests to find out if your signs are caused by dementia. The sooner you know, the sooner you can talk to your doctor about treatment options. Read our FAQs for people with dementia. Consider joining DASNI, a Yahoogroup set up for people with dementia and run by people with dementia. We understand better than anyone else what you are going through! DASNI offers hope, humor, education and companionship.
What if a family member has signs of dementia?
If your family member has some of the signs of dementia, try to get him or her to go see a doctor. You may want to go along and talk with the doctor before your relative sees him or her. Then you can tell the doctor about the way your relative is acting without embarrassing your relative. If your relative is younger than 65, your doctor may be disinclined to consider dementia. You may need to explain to him that people younger than 65 can get dementia as well as those older than 65.
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What Is Sundowning?
The afternoon agitation in people with dementia are know as "Sundowning." For me, it begins in late afternoon, even before the sun begins to set. I begin to get a vague sense of alarm, as if something bad is going to happen.
At that point, I tend to want to go to my spouse for reassurance. Since I am aware of the sundowning phenomenon, I can usually talk myself out of believing something bad is going to happen, and I can resist the need to shadow Alex. Unfortunately, later on in the disease I won't be able to reason through all that. Then I'll shadow him. Even later in the disease, people with dementia follow their care-partners around much of the day. It must feel very annoying for our care-partners.
I am told that keeping the room very brightly lit and pulling the shades so that the person is not able to glimpse the dark may help.
When I sundown, I feel like the birds must feel just before dark. They twitter and fly from branch to branch, seeking their place to alight for the night. Sundowning feels like that. It may mean a very hard-wired fear of predation. I want to get up and go find a safe place.
Bright lights, vigorous hugs and the offer of warm, comforting food or drink might help. I'd be curious to hear if that helps.
Carole M.
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