Important Advice For Those Confronting The Devastation Of Dementia

By Kaaren Valenta

Jo-Ann Henion knows what it is like to have a family member with dementia. A registered nurse with a master’s degree in nursing, she watched her mother suffer with the disorder.

“It’s a pretty terrible disease,” Ms Henion said. “It’s a long, long course that goes progressively downhill.”

Ms Henion, who has been in nursing for 33 years, spoke on “Demystifying Dementia” at a recent Lunch and Learn program sponsored by the Learning Center at Ashlar of Newtown. Ms Henion is with the Learning Center of the Masonic Health Care Center in Wallingford.

“Dementia is defined as the permanent, progressive loss of mental abilities — of being able to function in the world,” she said. “It is cognitive loss — the ability to think, remember, reason, judge, concentrate and perform the abilities of daily living.”

There also is perceptual loss, the loss of ability to accurately interpret the environment around you, she said.

“A person with dementia might look at a floor that has patterns, such as a rug, and interpret the dark areas as holes in the floor, or as an animal, or something else that could do harm,” she explained.

There are several different types of dementia, of which Alzheimer’s disease is the most common. There are an estimated four to five million people in the United States that have an Alzheimer’s type of dementia.

“There are no tests to diagnose it — diagnoses is based on the symptoms,” she said.

There are also vascular dementia, AIDS-related dementia, substance abuse-induced dementia, and dementia that is related to general medical conditions such as Parkinson’s disease and Huntington’s Chorea.

“People who have dementia can become very suspicious,” she said. “My mother knew something was wrong but she couldn’t put her finger on it. Some people with dementia might believe that someone is breaking into their hose and stealing things. My mother thought someone was stealing her cat food. Another person might think someone is stealing money. Or the person might get lost when they go out [of the house]. It’s a frustrating time until the diagnosis is made.”

The duration of dementia can range from 18 months to 27 years, she said. It is more common among those 80 years of age and older, “but we are seeing it more often in younger people — in their 40s and 50s — but no one knows why.”

The usual duration of dementia is 10 to 12 years, and it is seen more often in women than in men. In the early stage, which generally lasts six to eight years, it may be difficult to tell that the person has dementia.

“They have good speech skills, but they may get started going somewhere and forget where they are going. They may be suspicious and have anxiety because short-term memory loss may cause misperceptions,” Ms Henion said.

In middle dementia, which is often between the eighth and eleventh years, a person develops difficulty with social skills, noticeable speech problems, and difficulty in recognizing and using common objects. There may be noticeable changes in posture, balance, and walking, and loss of peripheral vision.

“The person’s behavior may be calm if he or she is in a calm environment, but may become agitated if the environment is confusing,” she said.

By about the twelfth year, late dementia has set in. At this point the patient has very limited skills and may appear lost in thought. He or she may not recognize loved ones or familiar persons, and cannot initiate conversation. Senses are significantly heightened, however, and the person may be very sensitive to loud noises. It is the shortest phase, and usually passes very quickly, Ms Henion said.

Throughout the course of the disease, the person with dementia continues to experience strong emotions: sense of loss, loneliness — because they may not remember that they had visitors — sadness, frustration, fear, anger, embarrassment.

Family members and friends should remember that the person is not doing any of this on purpose.

“They are doing the very best they can,” she said. “The best you can do is to accept whatever they say, and go on. Do not correct them; it is upsetting to them. Don’t argue with them and never assume they aren’t aware. They may be very aware, but unable to express it.”

People who deal with those who have dementia should stay calm, approach the person from the front, speak slowly and clearly, “but avoid speaking to the person as if she or he is a child.” Be patient and allow the person time to respond. “It may take them 75 percent more time to respond,” she said.

“Avoid asking questions. The person may not be able to answer your questions and may become embarrassed or frustrated.

“Respect the person’s space. Move slowly. If the person seems lost or confused, offer him or her your hand. If the person is restless or agitated, try to redirect the attention to something of interest. Talk about memories, Christmas, about their experiences in the war.”

It helps at home to keep the same routine from day to day and to offer praise for accomplishments, she said. Be alert for wandering problems. Consider tamper-proof locks on doors leading outside. Consider enrolling in the Safe Return program sponsored by the Alzheimer’s Association.

Fall-proof the house by removing scatter rugs, providing good lighting, and keeping walkways clear. Do not move the furniture. Consider locking supply areas that contain medications, cleaning solutions, and other chemicals.

Try to avoid loud noises, unpleasant odors, bold patterns, and bright colors. “Bright red and purple seem to agitate people with dementia, while the colors of blue and lavender may have a calming effect, as does the scent of lavender,” Ms Henion said.

When spending time with someone who has dementia, try looking at a book or catalog, or watching videotapes like The Sound of Music and old musicals. Be familiar with the person’s interests, past work, hobbies, and accomplishments. Go for a walk. Listen to music. Give a manicure. Look at a fish tank.

“Treat them the way you would want to be treated if you were in the same position,” she said.

Connecticut has a respite program with adult day care and respite stays in a nursing home. There is a 211 info line that can be dialed on the telephone for information about services.

“Pull in as many resources as you can,” Ms Henion said. “Make sure the person has an advanced directive so caregivers don’t have to make the difficult decisions for them.”