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Dementia materials aimed at caregivers, not me as the patient
Living with Cognitive Impairment | Last Active: Jul 25, 2025 | Replies (51)Comment receiving replies
@merrychristmas most emphasis is on the caregiver. They focus on the disease, and how to handle its effects on the family.
I think they (and other organizations) assume the “loved one” cannot take care of themselves so they bypass them.
I have dementia. I can still write, read, and understand the written word yet people like me are ignored…
It’s quite frustrating .
There is an organization whose focus is on the person with dementia only. It’s wonderful to be able to speak with others who are in the (same boat).
It’s Dementia Action Alliance. DAA.
Their site is:
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Most Doctors and nurses etc do not know what dementia really means. They think the term FTD is Frontotemporal dementia ! It isn’t it’s FT- degeneration . Most people FTD leads into MCI and/ or dementia . Dementia is not a diagnosis rather it is behaviors that they call dementia.
I wish more health professionals knew that. I went to the Alz website. They do focus on caregivers