With the progression of Alzheimer’s disease or any form of dementia, communication skills gradually decline. As this progression takes place, caregivers need to expand their capabilities to meet their parent, partner, or friend exactly where they are in an appropriate and loving manner. A person with Alzheimer’s experiences good days and bad, just like the rest of us. The difference is that some of the bad days are because they know that they can’t reach for the thought they want, like not remembering what a toothbrush is for. As a caregiver, you learn to navigate all types of days, especially as dementia advances. As always, knowledge is power. By understanding changes that may arise, you will better prepare yourself for meeting the challenge of caring for a loved one with Alzheimer's.
The Stages of Alzheimer’s Disease
Medically there are three broad categories that an Alzheimer’s patient can experience. The early, middle, and late stages. To gain some perspective, let’s take a brief look into what each stage might look like.
The Early Stage
The early stage of Alzheimer’s disease is medically referred to as ‘mild AD’. This is the stage where the individual is able to participate in meaningful conversation and social activities. However, they may repeat stories, have difficulty finding the correct word, or easily feel overwhelmed by excessive stimulation. Studies show that developing and maintaining a social life slows the progression of Alzheimer’s, so at this stage, it is important to encourage as much social interaction as possible.
The Middle Stage
There will be days when your loved one is upset, agitated or quietly depressed and withdrawn. As you can imagine, not being able to express a thought, or reach an idea or memory to share, is frustrating. You don’t understand why you can’t get to it and at the same time you know that something has evaporated, left you forever, and you are at a loss. Compound this with not being able to express to your caregiver that all of this is going on while they are trying to get you to do something or go somewhere. It is one of many situations that can lead to agitated outbursts or deep silences that can be draining and difficult to handle. In general, when you are with your loved one, be present. Maintaining an environment that is calm and focused can prevent anxiety from building. In this stage, it is critical to create a space where your loved is at ease and feels safe.
The Late Stage
When an individual reaches this stage, dementia symptoms become severe. One loses the ability to respond to their immediate environment, have a simple conversation, and ultimately control their movement. As the Alzheimer’s Association describes it, “They may still say words or phrases, but communicating pain becomes difficult. As memory and cognitive skills continue to worsen, significant personality changes may take place and individuals need extensive help with daily activities.”
It is during this challenging stage that your loved one will require constant assistance with personal care and all activities. Their motor functions will decline, causing their ability to walk, stand, sit, or even swallow to become impaired. At this stage, the individual becomes vulnerable to infections, most commonly pneumonia.
Basic Practices for Communication in all Stages of Alzheimer's
Loving and caring for someone with Alzheimer’s is one of the most challenging circumstances anyone can encounter. Know that you are charting new waters while doing the best you can. Forgive often, get support, arrange your life so that you get breaks, and share with others what you are dealing with and learning along the way. Laugh whenever you can. Taking great care of yourself will be one of the best things you can do to meet all the challenges of caring for your loved one with an open heart and a powerful presence. Here are 20 more valuable communication tips for you to keep in your pocket to access anytime.
20 Alzheimer's Communication Tips
- Keep your home organized. Set things up so that each room is easy to navigate. Make sure it is easy to find things and that the home is designed with Alzheimer's in mind. What this means for you and your loved one may change over time, so be sure to re-evaluate periodically.
- Maintain a calm environment. For example, don’t try to have a conversation while the television is on or music is playing. Your loved one's brain won't be able to process the extra stimulation. Having a conversation without any other distractions will allow them to focus on what you are saying.
- Practice patience. Hearing the same stories or having to answer the same question several times is common. Also, don’t expect quick answers to your questions. As the disease progresses, realize that they may be unable to respond to your questions or interact in a simple conversation.
- Don't rush the conversation. Allow plenty of time for the person with Alzheimer’s to respond to conversations, don’t interrupt and try to finish sentences. This will help your loved one avoid distressing and anxious episodes.
- Know the side effects of medications. Be aware that medications can compound communication problems.
- Address issues that come up. Discuss communication problems directly with the person with Alzheimer’s.
- Ignore assumptions. Don’t automatically assume the person with Alzheimer’s cannot communicate normally, just because of their diagnosis.
- Educate others. Talk with family and friends about how they can effectively interact with your loved one.
- Maintain consistency with routines. Train the other caregivers that will be helping care for your loved one what works for the person.
- Try new things. When verbal interaction isn't working, test various forms of communication, such as writing.
- Use humor. When appropriate, laughter can help lighten the mood. One family reported that humor was a very effective coping mechanism — and laughter is good for the brain!
- Talk to their physician. Make sure to contact your loved one's doctor anytime there is a sudden worsening of communication.
- Stick to one subject at a time. Varying the topics within a conversation can lead to confusion. Staying focused allows your loved one to concentrate on the conversation without getting frustrated or anxious.
- Pay attention to nonverbal cues. There might be a time when the majority of communication will be nonverbal. Using nonverbal cues such as eye contact, a smile, or projecting a gentle presence helps to promote an air of ease and allows for increased understanding. When dementia is advanced, this may be the only mode of effective communication.
- Use active listening skills. If a loved one says something that is unclear or you don’t understand, tell them. See how they respond. If they don’t clarify, let it be.
- Avoid arguing. Find ways to validate what your loved one says. For instance, when they say something that is absolutely inaccurate like “I had dinner at the bathtub last week with Max and he wants me to go into business with him,” try to let it go. Numerous confusions are at play here, especially when you know that Max died twenty years ago and that he and your loved one started a great architecture company together. Trying to correct someone who genuinely believes that what they just said has merit is upsetting and confusing. Instead, perhaps ask them about the dinner or Max. Let them tell the story that is swimming through their head and listen without expectation.
- Use names and be clear. When greeting your loved one, use your name. For example, say “Hi Mom, it’s me, Lily”.
- Don’t condescend or use baby talk. Treat your loved one as the adult they are.
- Take your time. It may be tempting to speed through a task, but slowing down can help in the long-run. If a task is not an emergency, then you probably don’t need to rush to finish it.
- Develop a support system. Being a family caregiver is stressful and challenging. Learn about the various organizations that are geared to supporting caregivers. Coordinate with other family members and request that they help in a meaningful way.
How to Calm Down Agitation or Aggression from Dementia
When your communication doesn't go as planned, be present with your loved one intently and gently until they get that they are not alone. Find what works for calming your loved one. Try to find a way to connect with them. Make sure that they are comfortable. Make sure that their bodily needs have been met. Are they too cold or too hot? Often it is the simplest of needs that have not been met, and their inability to communicate, that leads to a meltdown and outburst. What is important here is to surrender your agenda and to meet your loved one exactly where they are.
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