What It’s Like to Live with Alzheimer’s: A Virtual Experience

By Sharon Dickol, BS, CMC

Caring for a loved one with dementia can be frustrating and difficult. Over a period of time, the constant need to supervise and redirect the affected individual can feel burdensome and overwhelming. And, over time, resentment and anger can build. The impact on family caregivers is enormous.

Alzheimer’s and other forms of dementia are “hidden” illnesses. We cannot see the changes going on inside the brain. Consequently, it is hard to fathom why mom or dad cannot follow through with simple tasks or walk across the room without shuffling.

What many people don’t realize that changes in the brain caused by dementia often impact one’s sense of touch, vision, and hearing. Interference with these senses further impacts the ability to complete even the simplest of tasks. Helping family caregivers understand the changes that come with dementia is at the heart of the Alzheimer’s Experience. I encourage you to view this video to gain a better understanding of what it’s like to live with dementia.

 https://youtu.be/LL_Gq7Shc-Y?t=26

If you are caring for a loved one with Alzheimer’s or any form of dementia, there are things you can do to reduce the strain and foster better outcomes. Here are some suggestions:

Don’t argue with your loved one. Instead, redirect their attention. For example, if mom is repeating that she wants to go home, don’t tell her she is at home. Instead, let her know you’ll take her home “after dinner”, then guide her to an activity she can complete successfully. See “Failure-Free Activities” below.

Communicate at eye level. Standing over a person with dementia and talking at length can feel threatening. If your father is seated, sit next to him in a manner that permits good eye contact. If possible, hold his dominant hand with thumbs embraced. These small measures are reassuring gestures and will enhance communication.

Provide a structured schedule of tasks, personal care, and down time, and make yourself or another caregiver available to help. If possible, complete most necessary tasks (bathing, dressing, grooming), early in the day when your loved one is likely to be most cooperative. Work exercise into the routine whenever possible.

Ensure your home has sufficient lighting, even during daylight hours. Keep rooms well-lit in the late afternoon and evening, when behaviors can escalate.

Ask for help. If there are other family members in the home, work out a schedule that allows the primary caregiver a break. If no other family members are in the home, consider hiring in-home respite care from a licensed agency or through your local Area Agency on Aging. In some instances, these services are offered at a reduced fee. In Delaware, visit or call the Aging and Disability Resource Center.

Failure-Free Activities

With adaptations from https://dailycaring.com/activities-for-people-with-dementia

Fold towels. Asking an older adult to help you fold laundry is a great way to keep them occupied, give them an activity they can feel successful at, and help them feel like they’re contributing to the household. No matter how well or poorly the towels are folded, the point is that your older adult feels good about the activity. You may want to keep a laundry basket filled with towels handy just for this purpose.

Create a memory box. A memory or rummage box can help your older adult feel connected to their past career and previous hobbies. Get any kind of box and fill it with things they would have used at work, copies of photos and non-important keepsakes, or objects from hobbies. For example, if your loved one was once a handyman, put nuts, bolts, PVC pipe, sandpaper and twine in their box. If they were a cook or baker, place measuring cups and spoons, a shist, spatula, and other related items inside.

Cut pictures from old magazines or calendars. Choose items that contain images of things or hobbies your loved one enjoys. Use the pictures to create a scrapbook.

Large print playing cards make a great activity for older adults, especially when the letters and numbers are large and easy to read. Simple games like Go Fish, Blackjack, or War can be attempted. If those prove too difficult, sorting the cards by color, suit, or number is also a great way to engage the individual.

For more ideas, visit DailyCaring.com.