Dementia Misconceptions

H1235 · November 4

Mom was diagnosed almost four years ago. The journey has been tough. I have had some misconceptions about dementia, dementia care and how this all works. I thought it might be interesting for us to share some of those misconceptions in an effort to help others on this horrible journey. What misconceptions about dementia have you had or have you noticed as a common theme in posts? I just thought this might be an interesting and possibly helpful topic.

My misconception

When I first noticed mom having some odd behaviors I did not even consider dementia because her memory was fine. I didn’t realize dementia could be present without memory issues. Mom was eventually diagnosed with vascular dementia which can have slightly different early symptoms than Alzheimer’s. I thought extremely poor judgment might just be mom being mom. I thought her trouble with finances was just part of old age. I thought her confusion was a combination of a hectic situation and/or old age.

dcare45 · November 4

Good post @H1235, I have two that come to mind quickly.

I didn't realize how much outright hostility and agitation there was going to be in the first few years. I had tried to educate myself as soon as we had the MCI diagnosis with videos and reading, but wow I was not prepaired for that.
I had the misconception that we/I could still have some semblance of a life. Little did I know that caregiving is an all-consuming task all the time. Not just the toileting issues or behavior flare ups but allllll the time. Even during "down time" it's still always on my mind.

Maru · November 4

Even though I knew ALZ could go on for years, somehow I thought that DH would regularly progress and that each new symptoms would keep re-occurring. Most of the time DH seems "normal" and it has been 6 months since he forgot how to work the microwave.

SusanB-dil · November 4

I guess for me it would be how certain family members would take advantage of MIL in beginning stages. After that, we didn't allow it, or they still may have.

And the shock of 'new' declines, and how much it would affect myself and DH. Even if you know something is coming, when it hits, it hits hard. I knew my mom and my MIL would forget who I was… but DANG!

Also the lack of support! Just over-all lack - family, friends, medical community… I thought at least friends and family would be more supportive/understanding. Hah! MIL has one doc very supportive, but only for appointments, really. Most family and friends didn't want to hear anything. God Bless those very few who did.

thanks @H1235 - and yes, I agree with @dcare45 - I didn't know it would be all that full time and isolating.

Quilting brings calm · November 4

The sheer lack of support from the medical community. Your LO gets this diagnosi/s, and it’s ‘ see you in six months’. Every family has to ‘reinvent the wheel’. Has to come to forums like this one to find any advice, support, resources. It’s like going through a tunnel at night with no flashlight.

I didn’t realize how anxious and child-like my mom was going to be. The repetitive calls, the crying, the guilt trips.

I didn’t realize my step-dad had dementia for a while because his main symptom seemed to be paranoia about money and thinking I was going to take his. When I was just trying to keep their bills paid because he’d never written a check in his life, had a flip-phone, had never used a computer and didn’t have a clue about how to talk to anyone in a billing department. Mom had always done all that.

The mental and emotional load that I would suffer for 5 years, even with them in assisted living.

MudasirMunawar · November 4

Thank you for starting this discussion, and thank you to everyone who shared so openly. I found it helpful to learn that dementia does not always start with memory problems, and that changes in behaviour, language, or everyday skills can also be signs. It also struck me how much people talked about the lack of support and how isolating this can feel. Conversations like this help challenge those misconceptions and make the community feel less alone. I appreciate you all sharing what you have learned.

Dementia Misconceptions

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