Caring Through Aphasia and Dementia: A Personal Perspective, Author: Carolyn Dowdy
Eight years ago, my husband suffered a stroke that left him with aphasia, a condition that affects the brain’s communication center—and over the past few years, the situation has become even more challenging as he has also developed dementia. Overnight, after the stroke, he lost the ability to read, write, and speak more than a few fill-in words. Today, he speaks much better, but he still struggles with nouns, which makes it difficult to understand his needs. Over time, we’ve learned new ways to communicate, through gestures, patience, and a shared process of elimination. I’ll ask, “Are you talking about the car, the house, finances, the kids?” and we narrow it down together. Sometimes I have him get up and point to what he means.
He has always taken pride in having a beautiful yard. If he sees weeds, he’ll walk outside with me and point at them, so I know he wants our lawn guy to take care of it. He will bring it up repeatedly until the lawn guy arrives which can take a week. I know this repetition comes from dementia which leads to anxiety, if he doesn’t get his needs met quickly, so I try to address the things that bother him as soon as I can. He fixates on his needs and continues to ask about them until he gets his concerns corrected to his satisfaction.
Fixation is extremely common in dementia, and there are many types of dementia. Research shows that more than 60% of people with Alzheimer’s disease exhibit repetitive or fixated behaviors, often because the brain loses the ability to shift attention or remember that the question was already asked. The Alzheimer’s Association explains that repetition often reflects a need for comfort, security, or reassurance not stubbornness or intentional behavior. Understanding this helps us as caregivers have more compassion for our loved one so we respond with patience and get less frustrated. I understand my husband’s world revolves around his needs and understand that he may not have it in his awareness of all my responsibilities and challenges, so this helps have more compassion.
When my husband fixates, I’ve learned that acknowledging the concern and gently redirecting works far better than correcting or arguing. Fixation is not intentional; it’s a symptom of brain changes. By staying calm and addressing the underlying worry, I can help reduce his anxiety. This approach also protects my own energy, because resisting or debating only escalates stress for both of us.
As his wife, I know what truly matters to him, and that helps me interpret what he wants or
what’s weighing on his mind. But this mental work is tiring, and that’s why prioritizing my own
self-care is essential. I must conserve my energy so I can remain patient and be the best caregiver I can be.
The combination of aphasia and dementia creates unique challenges. Aphasia makes it difficult for him to express himself, while dementia affects memory and comprehension. Together, they can lead to confusion, frustration, and emotional overwhelm. These changes have taught me how important it is to understand what’s happening in his brain. When I stay calm, smile, and keep my tone gentle, he feels safer. I give him his way most of the time as long as what he’s doing is safe, and when confusion rises, I redirect the conversation rather than correct him. A peaceful environment helps reduce chaos, keep a peaceful existence, and supports clearer communication and connection. Chaos and conflict drain our energy so finding ways to get through situations without upsetting the one we love is beneficial for you both.
I’ve also learned that caregivers must take care of themselves. If we are stressed, exhausted, or overwhelmed, it becomes nearly impossible to calmly support someone with dementia. Being exhausted and overwhelmed, it’s difficult to be patient with your loved one. Our emotional state directly affects theirs. That’s why prioritizing my self-care without guilt, asking for help from family and friends, and realizing it isn’t selfish to have compassion for my needs has sustained my physical, mental, and emotional well-being on my caregiver journey. Support, education, and emotional space are essential, not optional to help prevent burnout.
Communication may look different now, but learning ways to stay connected is possible with your loved one. A gentle touch, a reassuring smile, and a calm presence can speak louder than words.
Self-care videos for personal use. Visit www.caregivermentalwellness.com/wbp/ CaregiverLIFELINE for strategies, techniques, and information on self-care to help prevent burnout, stress, and minimize worry.
References
Alzheimer’s Association. (2024). Repetition and Alzheimer’s disease. https://www.alz.org Alzheimer’s Society. (2024). Repetitive behaviour and dementia. https://www.alzheimers.org.uk
American Speech-Language-Hearing Association (ASHA). (2024). Aphasia.
https://www.asha.org
National Institute on Aging (NIA). (2023). Communicating with a person with dementia.
https://www.nia.nih.gov
Meta-analysis on repetitive behaviors in Alzheimer’s disease (summary available through
Alzheimer’s Society).
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