Dementia and Caregiving

Coping With Dementia

Many people believe that when you get old, you start to forget. This is not true! There are many reasons an older person may forget, as there are reasons a younger person forgets. Memory loss is frequently a part of dementia. The most common cause of dementia is Alzheimer’s Disease. Alzheimer’s disease is a progressive, degenerative disease that attacks the brain and results in impaired memory, thinking and behavior. It affects some 4 million adults and is the most common form of dementing illness. Other causes may be medication, alcohol abuse, strokes, and Parkinson’s Disease. Dementia is not a disease, but a group of symptoms of certain diseases or medical conditions. Usually dementia includes the loss of the ability to think, remember and reason.

Persons with dementia may be confused and disoriented. They are unable to learn new information, and have a tendency to undergo personality changes, become unconcerned, and withdraw socially. Alzheimer’s symptoms seem to progress in a recognizable pattern and these following stages give a framework for understanding the disease. The early stage, is the most difficult to detect. Simple tasks are overlooked such as turning off a stove. Often, loved ones are accused of stealing because the person with dementia can’t remember where they put things. Later stages may include the problem of wandering off. They may leave home and forget where they were going or be unable to find their way back. The final stage usually includes a lack of recognition of family or self.

Safety is Important

A concern for safety is very important when someone suffers from dementia. Forgetting to turn off the stove, wandering off, driving and smoking are all potentially dangerous situations. Therefore, the person suffering from memory loss will require supervision. You may be asked or required to "elder-sit" while your parents are not at home.

Someone suffering from dementia may speak differently. Their language may be meaningless and at times unsuitable. Their confusion may make them dwell on one idea and they may ask, "What time is it?" every few minutes even though you have repeatedly answered them.

The way they care for themselves may be different. Self-care skills such as dressing, eating and toileting may be impaired. A person experiencing memory loss may dress inappropriately for the weather or occasion. They may wear a winter coat in hot weather or shorts to a formal occasion. This is not an uncommon behavior.

It's Important to Learn About Dementia

Dealing with an older relative with Alzheimer’s disease or a related disorder requires skill. You are encouraged to participate in family discussions and to learn all you possibly can about dementia. A helpful, easy-to-read book is The 36-Hour Day by Mace and Rabins. It is available in most libraries and bookstores.

You may have many questions and feelings of fear when you are around someone who has memory loss. Your older relative may act strangely towards you. This may cause you to stay away from inviting friends over to your home should your older relative live with you.

You May Grieve at "Losing" Your Relative

Alzheimer’s Disease is a devastating illness. There is currently no cure, drug or medical treatment to slow its progress. Often family members are going through the grieving process while caring for someone suffering from Alzheimer’s Disease. The emotional turmoil may create feelings of anger or depression in the caregiver and other family members.

Learn Communication Techniques to Ease Frustration

It’s important to learn how to communicate with someone who has Alzheimer’s Disease. A few examples are: ask questions that are simple, don’t offer too many choices, maintain eye contact when speaking and avoid arguing.

Learning communication techniques may alleviate some of the frustration when trying to talk with an older relative who suffers from memory loss.

Communication Techniques

  • Keep noise and distraction to a minimum
  • Greet the person by name
  • Speak slowly and clearly
  • Use short, simple words and sentences
  • Ask one question at a time and allow time for a response
  • If the person cannot find a word, offer a guess
  • If you don’t understand, tell the person and encourage them to try to make you understand
  • Be calm, supportive, and respectful
  • A smile or hug says a lot

Try to be empathetic to the older person that has memory loss. For example, when you were a small child were you ever separated from your parent in a strange place? Imagine how that felt, how frightened you were. Do you think that may be how your older relative feels?

Someone who has memory loss may do things that normally they never would do and may not be socially acceptable. There is really no such thing as inappropriate behavior for someone with memory loss. They are only doing what they think is right. Remember, independence is very important to all of us. As long as they are not hurting someone or themselves, relax and let them do as much for themselves as they possibly can.

Try not to be rude and talk about the person with memory loss as if they don’t exist. How would you feel if that happened to you? It is easy to become irritated with the older person because they ask the same thing over and over again. Negative feelings and expressions will only make everyone feel bad. Alzheimer’s Disease affects the memory. It does not affect feelings. Treat someone who has memory loss or dementia with dignity and respect. They have feelings too.

Steven’s Story

Steven is a freshman in college. His grandfather was a very important person in his life. This is his story.

My grandfather had a disease called Alzheimer’s Disease. Alzheimer’s is a disease, which attacks a person’s brain, slowly. Not every aging person who suffers memory loss has Alzheimer’s Disease. There are many other reasons an aging person may suffer memory loss. Often an older person suffering from memory loss is characterized as having Alzheimer’s, when in fact the cause of the memory loss is much less serious.

When I was about 12 years old and living in the Bronx, my grandfather started losing his memory. In the beginning it would be little things. Later on it progressed to more important things. He would forget were he left things and accuse my grandmother of stealing them. He would forget to take his medicine. He grew so disoriented that at times he would go to the store and forget how to get home. I spent many terrified nights wondering where he wandered off to because the buildings in the neighborhood looked alike.

I didn’t want a complicated explanation about what my grandfather was going through. I wanted someone to tell me he was sick and he couldn’t help doing the things he did. No one explained to me why he couldn’t play cards with me anymore, why he was yelling all the time. Or why he didn’t even know who I was anymore! This scared me because I used to see my grandfather as a paternal figure. Now, not only couldn’t he play with me or recognize me, he couldn’t even take care of himself anymore.

Fear was not the only emotion that I went through. Many times I got angry with my grandfather. On my thirteenth birthday, I had a Bar Mitzvah in my honor. The whole family, including my grandfather, came. I worked really hard and I was excited about it. At the ceremony my grandfather was completely disoriented and did not recognize who I was.

Communicating with my grandfather was something that got harder and harder to do as time went on. People would try to talk to him and they became frustrated easily. I regret that I let my fear get in the way of my relationship with my grandfather. Talking to someone who has Alzheimer’s isn’t always easy. It’s important not to show anger and frustration. No matter how it goes try to stay calm and affectionate.

A person with Alzheimer’s may store the information in their head a very short time. They may only grasp one or two concepts of what you are telling them at the time. For these reasons their responses may seem inappropriate or insulting. Keep in mind they do not mean to do this. Accept the theory that there is no unacceptable behavior for someone with Alzheimer’s Disease because they don’t know better and can’t help it.

My family and I went through a lot of things with my grandfather. We did not have to face all the feelings of fear, anger and helplessness alone. There are support groups and agencies that could have been a big help. If you or your family are having similar problems, you should not let shameful or fearful feelings stand in the way of getting the help you need. Making believe problems do not exist doesn’t make them go away, and it sure doesn’t make them easier to deal with. I cannot stress enough how much I wish my family had sought outside help.

Support Groups Help You Cope.

A support group is a gathering of people with something in common. You can talk to others who are experiencing a similar situation. You can listen to others and learn from their experiences or help them by relating your experiences.

Take the first step and attend a support group meeting.

Many friendships start at support group meetings. In a support group you can find new friends, share ideas, and relate to others who understand what it is like to have an elderly relative who needs care. Contact your local Office for the Aging or local Chapter of the Alzheimer’s Association for help in finding a support group. Check your state’s Neighborhood Network for local resources for you and your family.

Taking the first step to attend a support group meeting can be scary, since we all fear new situations. Try to understand that such feelings are short lived and the benefits of a support group are great.

Sources: New York State Department on Aging, Administration on Aging

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