There are many lists of what to do when someone has dementia. I made a list of “don’ts.” I’m not trying to sound negative, but there are many lessons to be learned (my book covers many others, as well as the things we should do).

My list of “don’ts” for those loving someone with dementia and for those watching from the sidelines:

Don’t think all dementia comes from one disease. Dementia is an umbrella term for a group of symptoms that can happen within multiple diseases.

Don’t compare your loved one’s dementia journey with someone else’s (and don’t allow this to be done to you). I watched this happen frequently. Stages and symptoms have a lot to do with the individual’s history who is living with dementia (their life, their past, trauma they endured, etc.), and the journey will be very unique to him or her. Instead use the similarities to gain some support on your journey and also support someone else.

Don’t compare your emotional pain levels (according to where your loved one is on his or her journey) with someone else’s, i.e., “My pain is worse than yours because I’m dealing with XYZ, and you don’t have to.” The stages in and of themselves can ebb and flow. Relationship dynamics are never exactly the same. Timelines are rarely the same. If a loved one passes through the stages quicker, it doesn’t make it any less painful than those who are dealing with that stage longer.

Don’t allow someone to tell you what symptoms are affecting you and what symptoms are not affecting you. For some, their name being forgotten by their loved one is devastating. For others, watching their loved one not being able to feed himself or herself anymore is heartbreaking. It’s not our position to tell someone else how dementia is affecting them. The losses are hard enough.

Don’t look at someone else and wonder why they needed to place their loved one in a memory care facility or why they need a week of respite care for their loved one if they’re still living at home. You are likely seeing a single drop of water representing their lives with this disease, while they are drowning in an ocean of dementia’s effects.

Don’t offer quick cures and fast fixes. News flash: There are none currently! It is so painful when caregivers are doing anything and everything they can to slow the progression of their loved one’s memory shutting down, but then well-meaning people offer simplistic solutions. If there were a fix or a cure, all of us facing this disease battle would have given everything we had to obtain it while we watched our loved ones brutally battle this mind thief. “Just eat this, not that. Just exercise more. Just engage in brain activity more. Just take this supplement. Just use this medication. If you had, if you would, if you could,” and on and on and on it goes. My mom was the healthiest eater, most fit, 78-year-old woman you could have met. Dementia still ravaged her life. While some of these suggestions may offer some benefit and progress is being made for some with dietary modifications, there is no hard and fast cure currently. Let’s work to find one.

My Precious Mom

Don’t forget to check on the caregivers. Send a card. Make a meal or send a gift card for a meal (you don’t have to wait until end stages have arrived – this disease is overwhelmingly exhausting no matter where your loved one is residing).

If someone’s loved one is in a memory care facility, don’t visit without asking their caregiver first. My mom was extremely afraid of anyone she didn’t recognize knocking on her “apartment” (as we called it) door. It would have sent her into a tailspin to have people she had forgotten coming to see her. They should also be willing to hear from you about simple guidelines on how to speak and act around your loved one. If you’re the caregiver, don’t hesitate to set strict boundaries about who comes and goes. We did. It will save you and your loved one from huge upheavals if you are able to keep a calm, peaceful environment.

If you’re visiting someone with dementia, don’t say, “Don’t you remember me?” My sweet mom would immediately look down at the floor, obviously uncomfortable and confused because she didn’t remember. Instead state who you are and why you are there. Even my husband and I did this every single time we knocked on Mom’s door or approached her in a different area of the facility. “Hi Mom. It’s Heidi and Jeff. We came to visit for a while.” Every. Single. Time. And don’t get offended if you’re not remembered on that day. It could change tomorrow or it might never change. Some days we were my mom’s parents; other days we were her daughter and son-in-law again. It is heartbreaking, but there is no fault to be placed for a disease that is destroying the brain.

Don’t hesitate to send cards. When you do, keep the words short and simple. The time comes where they can’t make sense of endless words. Mom couldn’t read straight across a line. She skipped lines, and it made no sense to her. Make sure you send cards with beautiful, clear pictures and not “odd” pictures. Mom looked at a picture that wasn’t clear and wondered all sorts of scary things about it. She loved looking at pictures of pretty scenery or puppies, etc. She saved them and looked at them over and over again.

Don’t take gifts without asking the caregiver first. I was fortunate here because those who went to visit my mom were very tuned into this. It is a kind gesture, but there comes a point in time where items like hand creams, lotions, etc. need to be put up out of reach for safety concerns. Those with a dementia-related disease will get to the point where they don’t remember what these items are used for. A hand cream might be mistaken for toothpaste. Always ask first. For a while, Mom was able to enjoy those things. Then we got to the point where I made labels in German (her native language) with a picture and placed on all of her personal care items. This worked for a short time. After a while, we had to go in and do a sweep of her apartment, placing dangerous items out of reach for her own safety. Any glass or breakable items were off limits from the beginning. They presented too much of a danger for our particular situation.

Last but not least, please don’t refer to people with dementia as “those people.” “Those people” are the same as “those people” with heart disease, “those people” with kidney disease, “those people” with diabetes, “those people” with lung disease. . . you get the point. It’s just that people with dementia are dealing with a brain disease. Let’s all start treating it as the disease it is, with love and compassion, and hopefully we’ll find a cure.