Living with Dementia: Caregiver Tips

Kendra Kovacik, RN, MSG

If you haven’t cared for someone living with dementia you likely know someone who has. Navigating this journey, whether as a primary caregiver or a family member, is physically and mentally demanding. Dementia has touched my life personally because my grandmother, who has been like another parent to me, is living with Alzheimer’s disease.

My involvement in my grandmother’s care as well as my years of experience working as an RN caring for people living with dementia, has taught me a few valuable lessons. Below, I am going to share some tips I’ve learned from my professional practice as a Registered Nurse and others I’ve learned from my own personal experiences.

Let them tell the story. Do not argue or try to correct story details. I have a bad habit of interrupting my husband mid story to correct him on a minor detail ; he has told me numerous times on how annoying and frustrating that is for him. People living with dementia have usually lost their ability to reason, so arguing will not work or change their mind. And at the end of the day, does it matter if details of stories told are incorrect? If the story is not causing harm, the details do not matter. Whether it is your own need to be correct or part of the grief process of seeing your loved one forget, be kind to yourself and your loved one and avoid an unnecessary argument.

Patience, patience, patience. Be prepared to answer the same question over and over again with patience and understanding. For example, if a loved one in a care facility asks, “Can I go home now?”, try validating their feelings: “You’re thinking about home—tell me about your home.” You can also redirect gently: “It looks like they’re setting up for tea and games. Would you like to join me for some tea?” Or say, “For tonight, you’ll stay here in this nice room. Tomorrow we can look into it again.”

Bringing photos or artwork to reminisce over can also be helpful especially if it is a recent move.  Sometimes they are wanting to return to good memories, not necessarily the physical place.

If your loved one asks about a deceased spouse or parent, avoid directly saying that person has passed—it can feel like hearing the loss for the first time. Instead, redirect by asking about a favorite memory or acknowledging their feelings: “It seems like you’re missing your mom/dad/spouse.”

Approach within their field of vision. This will reduce confusion and fear. People with dementia often have impaired spatial awareness and depth perception on top of other vision changes like cataracts, macular degeneration or glaucoma. Approaching from behind or from the side where they can’t see you coming may startle them. Approaching from the front helps give the person a chance to see your face, recognize you and read your body language to understand why you might be approaching them.

Mind the mirrors and dark flooring. Keeping the visual changes and a phenomenon called retrogenesis* in mind, mirrors can cause significant distress for some people living with dementia. For these people, looking in a mirror may cause them to become upset because they do not recognize the person staring back at them.  It may be unrealistic to remove all mirrors from the space, so just keep this tip in mind.

Dark flooring or a dark area carpeting can appear like a hole in the ground for some individuals.  This perception can be used as a tool to discourage wandering or prevent unsafe exits from home.

Get some sunshine. Try to get outside in the morning for sun exposure to help regulate circadian rhythm. Sleep cycles for people living with dementia often get disrupted because of the disease progression and medication side effects.  Sleeping more during the day and having more awake time throughout the night is exhausting for caregivers. Just a few minutes sitting in the sun (even if it’s cloudy) can help regulate sleep patterns.

Stay connected. Hearing aids are an important tool that can help people stay connected and engaged in conversations and life. Being able to hear the conversation and what is happening contributes to sense of belonging and happiness. Staying social and interacting with different people throughout the week is therapeutic for both the person living with dementia and the caregiver. Hearing different stories and discussing different topics challenges the brain and keeps it engaged (potentially having a slowing effect on the progression of disease).

The power of silence and simply sitting with someone. Learn to become comfortable with sitting in silence and just being present with someone. Instead of worrying about what to talk about, try turning on some of your loved one’s favorite music and dance together or if they are not mobile, hold their hand. We are all social beings who want to feel heard, loved and valued – presence often speaks louder than words.

*What is Retrogenesis?

Retrogenesis is a theory suggesting that as dementia progresses, individuals lose abilities and memories in the reverse order in which they were acquired. Keep in mind, this is not a strict rule—everyone experiences dementia differently. Regression of memories or skills does not always occur in a perfect, linear pattern.

Think of retrogenesis like this: throughout your life, you build memories and skills, and each one is like a book stored on a bookshelf. As dementia progresses, those books are gradually removed from the shelf, affecting the associated memories and abilities.

As caregivers, it is important to ask for and accept help so that you can take time for yourself for rest, attend to your own physical and mental health and spend time doing hobbies that spark joy.