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What’s A Common Misconception About Alzheimer’s?

myALZteam asked a question 💭
San Francisco, CA
May 20, 2024
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Answer Summary

Members shared powerful insights about common misconceptions surrounding Alzheimer's disease, with the most prevalent being the belief that it... Read more

Members shared powerful insights about common misconceptions surrounding Alzheimer's disease, with the most prevalent being the belief that it only affects memory when in reality it profoundly impacts communication, mobility, behavior, personality, and nearly every bodily function. Several members described deeply personal experiences, including loved ones who no longer recognize their names but still light up with recognition through smiles and affection, the shocking variability in progression speed (from fast declines to slow 10-year journeys), and the physical aggression or personality changes that can emerge as the disease advances, leaving caregivers exhausted, grieving, and often isolated when friends and family pull away out of fear or discomfort. A recurring theme was the critical importance of seeking help without guilt, whether through adult day care programs, memory care facilities, geri-psych wards, or respite services, and the reminder that caregivers must meet their loved ones in their world rather than trying to pull them back into ours.

A myALZteam Member

A lot of people including family members don't realize that it's more than just memory loss. And they have no concept of the emotional stress that the caregiver goes through.

May 20, 2024
A myALZteam Member

I think the most frustrating part is my husband's children blame the medications necessary at this late stage instead of acknowledging it's the disease causing him to sleep more and be agitated at times. He's on a total of four medications and two are "as needed". They don't understand that there is no cure! It's impossible to visit twice a year for two days each and get the full spectrum of what an Alzheimer's patient is going through.

May 20, 2024
A myALZteam Member

I bought cards (business card size) from some company that say “the person I am with has Alzheimer’s Please be patient thank you”
I do not remember the company that was selling them (online). They are somehow connected to an Alzheimer’s site such as this.
I have found them quite useful.
My husband just entered a memory care facility. It was the hardest thing I have ever done. We have been married 52 years and I miss him so much. It got t a point where I could not safely handle his sundowning. He can talk but often can’t express himself, he can walk but is often unsteady. He has trouble bathing and dressing and he would get so agitated, confused and even paranoid. He had trouble, at first, settling in to the new facility but he is gradually becoming more relaxed. The caregivers are very patient and are helping him adjust. I visit nearly everyday. At first we would both be in tears when I would leave. Now I am doing better as I see him adjusting.
I pray every day for strength to navigate these uncharted waters. My faith helps me a lot. This sit is a real source of strength as well!

June 8, 2024
A myALZteam Member

So many friends and family avoid the person with the disease and the caregiver. Sometimes out of fear it will happen to them, sometimes because they can't handle seeing them like that or cant accept it. I have heard some say "They are losing their mind." They don't realize that that person still wants to see them or how hard it is on the caregivers. They also don't realize it's not just a memory problem but that it also destroys other bodily functions like seeing, hearing, continence, and ability to speak even when they may understand what is being said. They still have feelings too
They are often frightened and frustrated with their decline.

May 20, 2024 (edited)
A myALZteam Member

Most common misconception? That it’s just a loss of memory. Most people don’t realize that bizarre and erratic behaviors, loss of communication skills, balance issues, anger outbursts and sleep disturbances are endemic to the disease.

June 25, 2024

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