Introduction: Purpose of this site

Enduring a loved one’s dementia provokes a deep sense of loss. And that’s just the beginning. The accompanying conflict, financial stress, confusion, and isolation can challenge even the most stable relationships.  I hope to help with information that empowers and stories that connect.

What is dementia, and which diseases can cause it?  Which areas of the brain do these illnesses alter? What does that mean for the patient — and loved ones? We’ll hear from people with personal and professional expertise, learn about different trajectories and inevitable similarities, and discover strategies to enhance quality of life for family, friends, and colleagues.

When I was in my thirties, my husband was struck by Frontotemporal dementia at the peak of his career. Lewy body dementia took my father’s life too soon. I’ve experienced the effects of dementia on families from the perspective of a wife, mother, step-mother, daughter, step-daughter, in-law, and trustee.  Which means I’ve made a lot of mistakes. I hope talking about them — and inviting others to share their wisdom — makes your journey a little easier.

Katherine Nichols

My life and the ocean are intertwined. Like any force of nature, the sea can be docile or wildly unpredictable and terrifying.  Understanding more allows you to engage differently. Dementia’s no different. The waves will come.  Let’s learn how to dive under — and maybe even ride a few.

Cristina Mittermeier dives under a massive wave in Makaha, Hawaii. Photo by Paul Nicklen. Mittermeier and Nicklen are conservationists, National Geographic photographers, and founders of @Sea_Legacy.


High Profile Disclosures of Dementia May Help Remove Stigma

The first woman to serve on the Supreme Court, Justice Sandra Day O’Connor, recently announced that she’s been diagnosed with some form of dementia.  Why does this matter? It could help reduce the stigma associated with brain illness, which could lead to earlier diagnosis, explain confusing behaviors, and help families prepare for crises often associated with neurodegenerative illnesses. An article in the New York Times explains more.

Retired Supreme Court Justice Sandra Day O’Connor announced that she had dementia — a rare public acknowledgment. Credit: T.J. Kirkpatrick/Getty Images

Trends: To Help Alzheimer’s Patients, A Care Center Re-Creates the 1950s

 A 1950s-era adult day care center designed  “to elicit memories and encourage conversation and engagement,” sometimes called reminiscence therapy, recently opened in Chula Vista, Calif. As an article from the Wall Street Journal describes, it’s an approach that has been used successfully in Europe — particularly the Netherlands —  but is relatively new to the U.S. The owners plan to franchise the concept, and build up to 200 centers across the country in the next five years.

Photo credit: Sandy Huffaker for the Wall Street Journal.

My favorite anecdote from the story: A former accountant who was diagnosed with Alzheimer’s at 68  frequents the center, often working in the faux City Hall. She believes that she’s the bookkeeper for the organization. This notion is supported by staff who print invoices for her, fostering a sense of purpose, according to her family. 

This 9000 square-feet adult day care center can accommodate 75 patients — most in moderate stages of dementia — each day. 

Continue reading “Trends: To Help Alzheimer’s Patients, A Care Center Re-Creates the 1950s”

Research: Exercise & the Alzheimer’s Brain

We all know that exercise benefits the body and mind. But scientists continue to delve into specific ways it alters the composition and function of a brain — especially one suffering from dementia. Researchers at Harvard Medical School recently discovered that exercise generates new neurons and improves cognition in a mouse model of Alzheimer’s disease.

Adapted from a Mass General press release, the summary article appears on Harvard Medical School’s website. The study was published in the heavy-hitting journal Science, so expect analyses of adult hippocampal neurogenesis (AHN) rather than an innovative workout routine that will re-start your brain and give you six-pack abs as a bonus. 

Research: Yale-developed test for Alzheimer’s disease directly measures synaptic loss

A recent study published in JAMA Neurology explains new techniques that may help expedite research by allowing scientists to assess results of experimental treatments using PET (Positron Emission Tomography) imaging technology. Until now, synaptic loss could be measured only in autopsy. Kind of tough to assess if a newly developed drug is working after someone’s dead.

The latest research from Yale on synapses in the brain.

The article is science-heavy, but the video provides a good overview. The results arose from a collaboration between the Yale PET Center and the Yale Alzheimer’s Disease Research Unit.