Where do we go from here?

               On the horizon of Alzheimer’s and dementia Research

Today 5.7 million Americans are living with Alzheimer’s disease and related dementias. If we look at dementia from a global perspective, we see a community larger than the population of Spain –more than 50 million people!

In 1906, Dr. Alois Alzheimer began working with Auguste Deter. We can think of Auguste as dementia’s patient zero. In the 100+ years since the initial work, science has failed to identify fully effective techniques, treatments or cures for the collection of diseases know as dementia and Alzheimer’s.

Should we be discouraged? The answer is a clear and simple, hell no!

It took a long time to dispel the multitude of myths around dementia as a normal part of aging. Add to that a simple truth that 90% of our current knowledge about the human brain has only become known in the last 40 years.

In this brave new world we find unyielding determination among global researchers and scientists studying this complicated set of brain diseases. Foundational to the scientific community’s momentum are both philanthropists and organizations more deeply committed to supporting innovative research and worldwide collaboration.

In my search for answers to understand this disease, I flew to Tennessee to meet with the geriatric psychiatrist who worked with us when my mom’s dementia was first diagnosed. So many years later and after her death, we reflected on her journey through the disease.

Dr. Paul Newhouse asked, “Do you know what déjàvu is, Lisa?”

“Why yes, it’s the feeling you’ve been somewhere before, that it’s familiar,” I answered.

“Yes, déjàvu means that the strange is familiar. Do you know what jamais vu means?”  I shook my head, no.

“Jamais vu is what our family and friends experience in dementia –it means the familiar is strange. Imagine struggling with something you know, something you’ve known your entire life, but now it seems strange to you.”

I glanced away from the doctor and imagined my mother. Growing up and extending into adulthood, I’d only ever seen my mother through the lens of my rational mind. As her primary caregiver my life was busy, my time was limited. Even when I tried really hard, I couldn’t understand the nuances of her behavior as the disease progressed.

Assisting her, she might pick up her comb looking at it as if she’d never seen such an implement. Deep in contemplation, she’d turn the hard black plastic over and over in her hands, rubbing the sides as if they might unlock a connection to the comb’s very purpose. Leaning over the backside of her wheelchair, I’d smooth her hair with my hand as we rolled out the door late for something important.

I was clueless about the difficulty my mother was experiencing, the disruption of normal connections no longer being made in her brain.

Fast-forward to October 2018 when the Alzheimer’s Association announced innovative work by six international researchers, work now being funded by the Association’s Part the Cloud Program. Philanthropist Michaela (Mikey) Hoag founded Part the Cloud after losing her father to younger-onset Alzheimer’s.

These are high-risk research projects that require seed funding to collect data; they will also receive funding from the National Institutes of Health. Each of the awardees will receive $1 million over two years to support their research.

I’m proud to see Dr. Paul Newhouse of Vanderbilt University on the list (the very same doctor who treated my mom and took time to meet with me after her death). Dr. Newhouse is receiving support to a phase 2a clinical trial for people with Mild Cognitive Impairment (MCI).

The lesson I keep learning from those living with dementia, their caregivers, their family and friends is that the strength to walk the journey finds its roots in hope.

The ultimate answer may not be a single, silver bullet. Solutions may spring instead from what we learn from “failed”tests and trials, however true failure only comes from not trying. Instead we are learning volumes about the sources of and connections to the complicated set of brain diseases called dementia.

Congratulations and continued success to the six international researchers in the Part the Cloud Program. We await your results with fervent hope. And we have enduring gratitude to those like Mikey Hoag who, like us, believe in your work.

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