By Willie Brunetti
Special to The Alabama Baptist
During my tenure as a caregiver for individuals with Alzheimer’s and other dementia and in talking to other caregivers, I have learned that most of us have very little understanding of this disease. Communication is one area that will be affected, so we as caregivers need to research and see how these changes occur and how to best deal with them so we can continue to communicate with our loved one.
The communication skills of a person with Alzheimer’s disease or dementia will gradually decline, hindering the person’s ability to communicate and maintain a sense of reality in their lives. Eventually they will have more difficulty expressing their thoughts and emotions.
The challenges associated with communicating can lead to frustration for both the patient and the caregiver. However, understanding what may occur can help prepare you, the caregiver, make adjustments and know how to respond, helping to improve communication.
Living with dementia
For individuals living with Alzheimer’s, changes in communication vary and are based on how far along they have progressed in the disease. Issues you can expect to see throughout the disease progression include:
- Difficulty finding the right words.
- Using familiar words repeatedly.
- Describing familiar objects rather than calling them by name.
- Difficulty organizing words logically.
- Reverting to speaking a native language.
- Speaking less often.
- Relying on gestures more than speaking.
The caregiver can begin early, working with the individual to see what methods might help them communicate their needs and wants in an appropriate way. One of the statements that best fits this environment is that the Alzheimer’s patient is not giving you a hard time, they are having a hard time. We need to step back and help them deal with the frustrations.
One primary goal of the caregiver is to help maintain the dignity of their loved one. This is done through learning the stages of the disease and how to deal with the effects of the changes.
Early signs
In the early stages of the disease an individual is still able to participate in meaningful conversation and engage in social activities. However, they may repeat stories, feel overwhelmed by excessive stimulation or have difficulty finding the right words.
It is a painful process when a person must accept the inability to stand alone, the loss of independence or worse, the need to depend on someone else to do important tasks. People living with dementia may become further frustrated when they can’t communicate their thoughts and concerns.
The caregiver also becomes frustrated in trying to deal with the effects of the disease on themselves and the family. But it is time to come to terms with the diagnosis and the emotions and to spend time learning and creating strategies to keep the lines of communication open despite the changes in their ability to communicate in a normal way.
Middle stages
The middle stages of the disease are typically the longest and can last for many years. As the disease progresses, the person will have greater difficulty communicating and require more direct care. The patient also needs more understanding and acceptance from the caregiver. In many cases, people in this phase lose track of reality and who they are talking with. As a caregiver, identify yourself and help them deal with the trauma they are experiencing of not knowing who they are talking with, even if you are a family member.
Don’t contradict or correct the conversation that is taking place. Don’t argue. Even if you are correct, you both lose. You will never win an argument with someone living with dementia because he or she can no longer be reasoned into agreeing with you. It can be frustrating for the caregiver to deal with the repeated questions from the patient. Repetition comes with Alzheimer’s. Listen to each story as if it were the first time you’ve heard it and respond to each question as if you’ve never answered it before.
As caregivers we need to see the world through their eyes. Listening to figure out what the patient really needs. The disease is taking away their life, and they become frustrated with the progression and their inability to deal with reality. We need to be prepared to respond to them in a loving and caring way and get to the root of their problems.
Late stages
The late stages of the disease may last from several weeks to several years. As the disease progresses they will become nonverbal and rely on facial expressions or vocal sounds. Around-the-clock care is usually required in this stage.
Individuals with this disease and who are losing their memory are in a frightening place that some caregivers may not understand. As the disease progresses, they live sometimes in the past and rely on the comfort of memories from long ago. This results in sometimes not recognizing familiar faces, not recognizing their environment and sometimes realizing their own forgetfulness.
It becomes important for the caregiver to put themselves in the shoes of their loved one and acknowledge how frightening it would be to not recognize your surroundings and have family members appear as strangers no longer. Remember you are not deceiving your loved one but rather simply helping them feel more comfortable and that they are indeed in a safe place.
The trauma created by the day-to-day life of dealing with a dementia patient is devastating. It is common for a caregiver to experience feelings of guilt, anger, resentment or depression. Try to stay in touch with your feelings and find positive ways to deal with them.
The well-being of the person who has dementia depends directly on your well-being. It is essential that you find ways to care for yourself so that you will not exhaust your own emotional and physical resources.
The Alzheimer’s Association has multiple sources of information to help the community learn about the disease and its treatment and progression. Their website at ALZ.org includes a number of tools to help deal with the disease and support for all involved. The organization also have a 24/7 hotline with dementia-trained people to talk with at any time (800-272-3900).
EDITOR’S NOTE — Willie Brunetti has a long history of being a family caregiver and leads seminars on the topic. He is a retired Air Force officer and holds a doctor of educational ministry from New Orleans Seminary. He is a member of First Baptist Church Meridianville, Alabama. Find a downloadable resource on caregiving here or read more tips for caregivers here.
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