Dealing With The Demands Of Dementia

By Jan Howard

A positive, common sense approach is needed when caring for people with dementia. Flexibility and creativity may be necessary in solving problems, such as wandering, paranoia, and inability to perform basic tasks.

Sharon Linet, RN, director of patient care services at Ashlar of Newtown, spoke about “Common Sense approaches to Caring for People with Dementia” at a Lunch and Learn program November 13 sponsored by The Learning Center at Ashlar for mature adults.

Dementia is the loss of intellectual abilities, such as thinking, remembering, and reasoning. The loss is of sufficient severity to interfere with a person’s daily functioning. It is not a disease in itself, but rather a group of symptoms that may accompany certain diseases or physical conditions.

The most prevalent form of dementia is Alzheimer’s disease. “It causes progressive losses,” Ms Linet said. “It’s a real tragic disease.” Dementia can also occur as the result of little strokes, brain injuries, Parkinson’s Disease, Huntington’s Disease, and Pick’s Disease, among others. It can cause judgment problems.

“The person may be physically able to do something but their brain doesn’t tell them how to do it,” she said. There is a loss of short-term, long-term, and stored memory.

A person with dementia may not be able to do sequence tasks because of brain damage, she said. They may have difficulty with language and recognizing familiar objects or people.

“You’re trying to help them, but they can’t perceive who you are.

 “It’s difficult to deal with. When the brain deteriorates, it can cause psychosis, disturbances that cause the person to be out of touch with reality, and hallucinations,” Ms Linet said.

The person’s brain cannot interpret information, she said, and can lead to paranoia. Paranoia can lead them to feeling things are being taken from them.

“They are out of touch with reality and their senses. They see and hear things that aren’t there. They are not only having difficulty with their thoughts, but also with what they are seeing and hearing. Some people have distressful delusions.”

Depression is very common, Ms Linet said. “It is a very real problem that has chemical causes. There are physical reasons for it. It needs to be treated with a little medicine, and a lot of intervention goes a long way. There is nothing wrong with calling the doctor. ”

The person may become more agitated and anxious late in the day, which is referred to as sundowning, she said. While there is no definitive answer for its cause, sundowning may be the result of a change in environment or routine or fatigue. It may also be the result of medications taken in the morning that peak in the afternoon. “Their energy level is high, and it is hard to keep focused.”

 There are stages of dementia, she explained. In the first stages, people are functioning. They are not aware of it as yet. Then the person becomes aware of pieces of time that are lost and begins to be concerned.

People with dementia are frustrated, “with good reason,” Ms Linet said. They and their relatives may be in denial.

“The first stage of grieving is denial. They may act out, get angry.” She explained that the impulse control center in the frontal lobe of the brain is what tells a person not to do that. In dementia, the frontal lobe is affected, and that is why people yell or hit.

“Don’t take it personally,” Ms Linet said. The person is not acting this way on purpose, and it may be the result of just a little bit of stimulus they cannot handle.

Dementia can cause various other behavioral changes, such as wandering. Use flexibility and creativity, she said. “If they wander out a door, paint the door to look like a bookcase. Disguise the door. They won’t walk through a bookcase.

“If they are pacing, don’t try to stop them. You may have behavioral things happen if you try to stop them.” Instead, she said, “Give them something to do, such as dusting. Look at their former interests.”

Homemakers could be given laundry to fold or leaf raking to take the place of pacing or wandering. Provide a way for them to spend their energy, she said. “Take them for a walk. The worse thing they can do is to sit in front of the TV.”

Ms Linet said the person should be kept busy to retain skills. “The longer a skill is in place, the longer it will last.”

Scared And Alone

She said some people with dementia might look for their mother or want to go home.

“They are not looking for their mother or house. What they’re saying is ‘I’m scared, I’m alone.’ They need to feel connected. Stop telling them they live here. Give them the opportunity to talk about their mother. Get into their reality. Don’t tell them their mother is dead. That’s the worse thing to do. They’ll cry.

“Get them talking, reminiscing. Allow time to talk with them,” she said. “It’s useful time. It thwarts the frustration.”

Their inability to comprehend the ages of their children or who people are can be very heartbreaking for family members, Ms Linet said. “People want their parent to recognize them. Don’t quiz them, saying ‘Who am I?’ That’s very bad to do.” She suggested saying hi, giving your name, and relationship to them. “Feeding them information is okay.”

The first thing people with dementia lose is the ability to managing their finances, she said. Doing a checkbook becomes a complex task.

The person may begin hoarding things. “It is the person’s mechanism to meet their own emotional and social needs. It should be allowed as long as it’s safe and not causing danger,” she noted.

A spouse or caregiver can get frustrated if the person is always rummaging or doing repetitive things, especially if they like things neat. “Spouses need to let go of some things. If they are rummaging, let them do it. When they’re doing what they do, if someone interferes, no wonder they’re swinging.”

If something is misplaced, and they think it’s been stolen, first validate their feelings, Ms Linet said. “Say ‘You must be angry’ or ‘Let’s look for it.’ Validation defuses anger. You can help calm them down by helping them.”

Once the person is calm, redirect them, she said. “Give them something else to do, a more pleasant focus.”

Arguing and reasoning never work, Ms Linet said. “It’s cruel and unusual punishment. The more you argue with them, they will scream at you. It doesn’t work. Don’t argue. Step into their world.”

Insisting on their completing a task that their brain will not allow them to do does not work, she said. “Celebrate what they can do.”

Do not ignore undesirable behavior, she said. Address the behavior with positive intervention or it will escalate. “Do not scold or punish. They are not children; these are people who’ve seen things that we’ll never see. What’s happening to them is tragic. They should not be treated this way.”

One Step Commands

To help them do a sequence of tasks, use simple, one-step commands. “When you give instruction, give them time to process it. Use the same word in repetition of the command,” she said.

“Word directions positively. ‘Don’t’ commands are more difficult to understand. Instead of ‘Don’t go’ say ‘Please stay with me.’ Tell people what they should do, not what they shouldn’t do.”

 Make eye contact with the person and be positive, Ms Linet said. Sit or kneel to be on the same level as the person. “People with dementia need to feel in control,” she said.

Do not take them out of their element. Limit distractions and keep their environment simple. Use contrasting colors. Do not ask the person to find a white blouse or shirt on a white sheet. They cannot do it, she said.

To help avoid sundowning, keep the environment light so they can perceive their environment, Ms Linet said. Since older people do not need as much sleep, consider a nap period in the afternoon and a later bedtime. Work with the physician about spacing medications so they do not all peak in the afternoon.

Ms Linet advised caregivers to first take care of themselves. “If you don’t, you will have two people that are stressed out, you and the person you love.”

 It is a taxing job to care for a person with dementia, Ms Linet said. “Do something for yourself. Don’t wallow in your own sadness. You need to be in the right frame of mind.’”

She said it is normal to have guilt feelings about placing a family member in a nursing home. She noted, however, that when a family member is also the caregiver what is sacrificed in the relationship is the family member.

“Let us take over the care giving,” she said. “You can be more effective as a loved one than as a caregiver. Sometimes you can’t keep the person at home. It is more important to be a good family member. Don’t let guilt destroy you. Don’t let it be the love that goes. Would they want you to be doing this? Would they want you to feel this way?”

For information about future Lunch and Learn programs, contact Hilda DeLucia, community resources manager of Ashlar of Newtown, at 364-3127.