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. 

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Research: A New Report on Millennial Caregivers

More millennials are becoming caregivers to loved ones with dementia, causing emotional distress, health problems, and interference with work just as they are launching their own careers and independent lives.

USC co-authors Maria Aranda, Ph.D., William Vega, Ph.D., and Francisca Rodriguez, Ph.D. recently published a study on the topic.   Hopefully it will raise awareness, and inspire employers to consider additional flexibility, when appropriate. Download their Dementia Caregiver Report here.

From the 2018 Dementia Caregiver Report on Millennials, by Vega, Aranda, and Rodriguez.

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News: End-of-Life Choices

Judith Schwarz, clinical director of End of Life Choices New York and a pioneer in helping people retain control — and dignity — through their last moments in life, challenges us to consider details nobody wants to think about.

Everything gets more complicated when someone has dementia and can’t speak for himself — particularly when he hasn’t made arrangements in advance. Schwarz explains why.

The following New York Times article includes a link to a health directive that will prompt thoughtful answers to questions related to how long you would want to live with severe dementia.  Use it. Share it. Talk with people who love you.

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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.

Research & News: Loneliness — It’s a Thing

Several articles reporting on studies that delve into the health effects of loneliness and social isolation (not always connected, by the way) have  appeared in the media. In the New York Times, Jane E. Brody overviewed and updated reports from institutions around the country. 

Excerpt: “Being unmarried is a significant risk,” Dr. Holt-Lunstad [psychologist-researcher from Brigham Young University] said, “but not all marriages are happy ones. We have to consider the quality of relationships, not simply their existence or quantity.”

Paul Rogers, New York Times, Dec. 11, 2017

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