Alzheimer’s disease is the most common form of dementia accounting for approximately 70% of dementia diagnoses. Other forms of dementia include Vascular dementia, Dementia with Lewy Body and Frontotemporal dementia. While each disease has its own unique trajectory, some of the symptoms are similar.
In addition to memory loss, one of the most common challenges for both the person with the disease and for their care partners involves communication. This can be very frustrating for the person with the disease and their care partner. For the care partner, there are helpful tips to keep in mind throughout the progression of the disease.
During the early stages of Alzheimer’s, it may not be obvious to others that there is even a problem. As the disease progresses, both written and verbal communication becomes more difficult. Some changes may include:
- Taking longer to speak or respond
- Withdrawing from conversation
- Reacting more emotionally than in the past or avoiding discussion of the disease and its impact
In the early stages, we have the opportunity to include the person with dementia in the decision making process.
Helpful tip: In the early stages, the person with dementia may struggle to find the right word and become frustrated. ASK the person what is most helpful in this situation. We have a natural tendency to want to jump in and problem solve. Rather than providing the word they are searching for, ask what their preference may be.
“I know it can be difficult to find the right word sometimes. Is it helpful when I offer the word, or would you prefer for me to wait and let you find it on your own?”
Other key points:
- Don’t make assumptions about the person’s ability to communicate because of an Alzheimer’s diagnosis. The disease affects each person very differently and can change from day to day.
- Explore which method of communication is most comfortable for the person. This could include letters, email, phone calls or in-person conversations.
- Don’t pull back. The diagnosis of Alzheimer’s disease or another dementia can be incredibly isolating. They need the support of friends and family now more than ever.
During the middle stages of Alzheimer’s family and friends often begin to notice more obvious challenges with communication. Some of these changes may include:
- Using familiar words repeatedly
- Inventing new words to describe familiar objects
- Easily losing his or her train of thought
- Reverting back to a native language
- Difficulty following a conversation or TV program
During the middle stages it can become more challenging to understand what the person with dementia is trying to communicate. Care partners often need to rely on physical and nonverbal cues to understand what the person with dementia is trying to communicate.
Helpful tip: In the middle stages, the person with dementia can struggle with following a conversation and decision making. Rather than asking the person what they would like for lunch, provide an answer in the question:
Instead of: “What would you like for lunch?”
Try: “Joe, would you like a turkey sandwich or soup for lunch.”
The first question is open-ended and can be confusing to the person with dementia. In the second question, you are still offering them a choice and an opportunity to participate in decision making.
The middle stages can be a challenging and stressful time. Sometimes the best way to respond is simply be recognizing and validating the emotion behind the behavior or concern. We may not always have the answer or be able to solve the problem, and that’s alright! Simply acknowledging this can put the person with dementia at ease.
“Mom, I see you are feeling frustrated. I get frustrated by this too. I am sorry I can’t fix things, but I am here with you.”
Other key points:
- Use short and direct sentences, not long-winded instructions.
- Avoid quizzing the person.
- Be mindful of your surroundings. Is there too much stimulation? Limit distractions when you are trying to communicate. This may be turning off the TV while talking, or going to a quiet room in the house.
During the late stages of Alzheimer’s disease, the person may only be able to communicate with a few words. It is very important that we recognize the person is still there; communication is just as important in this stage as it was earlier in the disease. In the late stages, we have the opportunity to communicate using our five senses. Some ideas for connecting with a loved one in the late stages could include:
- Touch– gentle hand massage, brushing their hair, visiting with animals
- Sight– going outside and bird watching, looking through a photo album
- Sound– listening to their favorite music, listening to you read to them
- Smell– freshly baked goodies, soups, or essential oils dipped in cotton balls
- Taste– smoothies, pudding, popsicles
The most important thing to remember is that a person’s sense of self remains throughout the entire disease. While changes in the brain make it challenging to communicate, there are meaningful ways to connect with the person with dementia throughout all stages of the disease. To accomplish this we must be patient, flexible and take our cues from the person living with the disease.
Ways to get involved:
- Attend an Alzheimer’s Association program, including Effective Communication Strategies, for more helpful tips. Find a full listing of programs and support groups by visiting the Vermont Chapter Calendar.
- Like the Alzheimer’s Association on Facebook.
- Follow on Twitter.
Pamela Beidler MSHCA, is Vermont Director of Programs and Outreach at the Alzheimer’s Association. She is a Certified Dementia Practitioner with a passion for working with our community’s most vulnerable populations and finding ways to empower individuals through health education.