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A myALZteam Member asked a question 💭
Cape Town, ZA

There don't seem to be a lot of people on this site supporting someone with frontal lobe dementia. Am I right?

January 11, 2019
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Answer Summary

Members connected over the unique challenges of caring for loved ones with frontal temporal dementia, a rarer form that often strikes people... Read more

Members connected over the unique challenges of caring for loved ones with frontal temporal dementia, a rarer form that often strikes people in their fifties and presents with personality changes, poor judgment, speech difficulties, and inappropriate social behaviors rather than typical memory loss. Several members shared specific experiences, including loved ones who talk incessantly about decades-old work memories, lose all sense of time and boundaries, struggle with verbal communication while still understanding everything, and require adult day care or psychiatric intervention during medical crises like UTIs. A recurring theme was the profound isolation of this diagnosis, with members expressing how difficult it is to find specialized support and connect with others who truly understand the exhausting, heartbreaking reality of watching someone's personality transform while their awareness often remains intact.

A myALZteam Member

Hello....the unique thing about frontal lobe dementia is that its considered rare. It usually affects much younger people - in their fifties - and has very different behavious including a dramatic change in personality. This can go on for a long time before one realises that there are other things happening. As we don't expect a diagnosis in our fifties we think its a mid life crisis or depression etc. It doesnt affect memory much. It does however affect speech - actual verbal words become difficult to say. Swallowing is another issue. Boundaries dissapear and inappropriate behaviours appear like touching others sexually - not harmfully - but just reaching out and touching. The abiltiy to comprehend and undertand what is going on is fine but articulating is gone or going. Understanding things is ok but the outcomes of choices and consequences vanish. Let me know your thoughts............

January 16, 2019
A myALZteam Member

My husband was diagnoised with Frontolobal temporal Dementia in November 2018

February 22, 2019 (edited)
A myALZteam Member

His behavior is different than other types of Alzheimer’s . There is a web-site for Frontal Temporal Dementia. I haven’t been on it for a while. I will find it and let you know the address.

January 12, 2019
A myALZteam Member

All dementias are similar. None are nice. I think we all support each other....

January 12, 2019
A myALZteam Member

All of what you are saying is true. I don’t know why but he has no problems with words. He was a quite person who now you can stop from talking. When he retired at 55 he was not answering the questions the doctor (anyone) was asking him. He would start talking and it didn’t have anything to do with the questions. It becomes very frustrating when he is talking over me at doctor. I’ve learned to just stay away from him if we are the same room and never talk to the person he is talking to.

January 17, 2019

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