Living My Truth - One Day at a Time

Doctors are afraid to use the word dementia. They're afraid to use the word neurodegenerative disease. They're more comfortable saying mild cognitive impairment because mild cognitive impairment may get better. Dementia is dementia, and in most types of dementia, there is very little chance of improvement. There are ways to slow it down, and timelines may differ from what doctors tell people. The end result is that I'm living with dementia, and doctors are uncomfortable giving that diagnosis. But, like many, I was first diagnosed with Mild Cognitive Impairment.  At the time, I was working on my Ph.D. in Clinical Psychology and failing exams. I could come up with advanced statistical solutions but couldn’t explain the basics of how I got there. The dean of my school suggested I see a psychotherapist, thinking it was just the typical stress of my first couple of years in the doctoral program. I knew something was wrong, but no one heard me when I said it. No one listene...

I find myself  questioning the increasing number of individuals diagnosed with Young-Onset Dementia (any dementia diagnosis given to someone under the age of 65 years). Why is this happening? How do we stop it? And with so many people being identified, why are we still treating this as a condition of the aging older population? Did you know that the Young Dementia Network out of the U.K. shows the prevalence of dementia in the U.K. to be 7.5% of those diagnosed with dementia? That is approximately 70,800 people. (https://www.youngdementianetwork.org) That is astonishing! Of course they have a different structure to the health system that allows them to track such things. The U.S. has a different structure to its healthcare system, so we have not tracked such figures as far as I know, but imagine… If, according to the CDC in 2019, 5.8 million people in the U.S. were living with dementia, and 5.6 million of those are over the age 65 years (remember, some of those around 65-70 years o...

  “I was blind for a long time to the fact that I'm a trifecta, as my friend Pamela puts it, that I have all these categories that make me the perfect advocate for a lot of different groups. I can talk about being gay. I can talk about being a veteran. I can talk about being Latino (even if I can't speak Spanish). But from very early on—being a military brat in the mid to late sixties and seventies on white military bases that were very heterosexual—I've lived in a world where I just naturally conformed. So that's just been part of my personality. But when it comes to dementia research, I'm like, “Well, wait a minute, where are the people of color? Where is the L-G-B-T-Q community? Why aren't we doing more? What are they going through? What happens when a trans person who has dementia suddenly relives a moment 20 years before they changed, gets out of bed and looks in a mirror and sees someone else? What happens to that person who is in trauma?” That's horri...