As someone who works for the Alzheimer’s Association with support programs for caregivers, I decided to do a little research today on our Message Boards, where Alzheimer’s caregivers are able to communicate with each other about their concerns and get information and support from peers. For those who have been providing care to someone with Alzheimer’s disease for some time, the result will come as no surprise, but for those who are newer to caregiving, you can turn up a result that may make you curious.
If you go onto our message boards and search the Caregivers Forum with key words, you can pull about 30,000 posts containing the word “Alzheimer’s”, 14,000 that include the word “brain” and 10,000 that contain the word “neurologist.” No big surprises there, but here is the one that may surprise the newer caregivers: If you type in “UTI”, you will pull over 8,000 posts that are on 410 pages of our message boards.
UTIs, or urinary tract infections, can cause changes in someone with Alzheimer’s disease that you might never expect. The impact can be really profound. Some of the titles of the message board threads in which UTIs are mentioned tell the story well, including “Sudden decline,” “Yelling out and undressing in public” and “Manic episodes… WOW!”
Here is a sampling of some of the posts on the topic:
- “For me, falling and hallucinations always mean check for UTI”
- “Our compromised elders, especially females often develop, “silent” urinary tract infections. These UTIs are called “silent” because they usually have no symptoms of pain, no burning, no odor, no frequency, etc. BUT there will often be profound changes in behaviors.”
- “UTI, UTI, UTI, UTI, UTI! When my mother has a UTI she sleeps all day. We can’t get her out of bed, she will also stop eating. Have the doctor check her for a UTI. “
- “UTI and dehydration!!!!! I’ve never been so happy to get that kind of diagnosis. They have her on IV antibiotics. The interesting thing was that her urine was clear and they were pretty sure she didn’t have a UTI. Luckily the testing came back positive.”
- “With my aunt, I could always diagnose the UTI because she started acting crazier than her current norm. (When she picked up a glass of water and threw the water over her shoulder, I called it right away —UTI.)”
When UTIs are wreaking havoc with the family members of our Alzheimer’s caregivers, we sometimes see threads in which the caregivers are in a state of panic about the symptoms. And for good reason — the symptoms are powerful and can actually mimic the end of life for some people. These caregivers are used to a slow disease progression, and the UTI with no overt symptoms can make everyone involved act in ways that reflect their feeling that this situation is a life-threatening emergency. The good news is that, while the UTI does need to be treated right away, this is for the comfort of the patient and the family. UTIs do not cause permanent damage, and they respond quickly and successfully to treatment. And best of all, once the infection clears, the person returns back to their condition prior falls to the UTI.
That’s when the message board posts show caregivers breathing a deep sigh of relief and thanking their peers in the online community for their caring support — and for tipping them off to one of the oddest but most treatable components of Alzheimer’s disease.
Today’s guest post comes from Ellen Carbonell, LCSW, Associate Director, Family Programs for the Alzheimer’s Association’s national office. Ellen is responsible for developing and producing dementia-related family programs for chapter implementation nationwide, and oversees the caregiver and early-stage support group programs. Trained as a clinical social worker, she has over 30 years of experience working with individual and family programs in mental health, vocational, educational, clergy and voluntary health care settings.
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