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Deborah Kan

Created on February 19, 2024

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Transcript

Alzheimer's Disease: Generations of Impact

Two families share their stories

Welcome!

Hear Kim's intro

Hear Michele's intro

Living with early-onset Alzheimer's
Carrier of an early-onset Alzheimer's gene

Alzheimer's Disease: Generations of Impact

Two families share their stories

Meet Kim Reid

Meet Michele Castro

Living with early-onset Alzheimer's
Carrier of an early-onset Alzheimer's gene

Michele Castro

A Latino family living with an 'Alzheimer's gene'

Diversity and Dementia

"Within our community, a lot of people don’t want to get tested (for Alzheimer's genes). The Hispanic community is very loving, caring, but they can also be very private. We don’t want people to know our business."

Michele Castro, PSEN1 carrier

listen

Explore theCASTRO Family Tree

Start with these topics

Making Memories

Advocacy

The PSEN1 Gene

Michele's Family Tree

Click on each person to find out more

Jacinto Ramos

Maria Dolores Ramos

GrandmotherUndiagnosed Dementia

GrandfatherUndiagnosed Dementia

Mercedes GonzalezPerez

Martin Gonzalez Perez

Grandfather

Step Grandmother

Elba (Ramos) Kortright

Rosa Belen Gonzalez

Raymond Ramos

AuntDiagnosed with Alzheimer's

MotherHad PSEN1 Alzheimer's

Father

Carmelo Castro

Husband

José M. Montalvo

Michele Castro

Older brotherHad PSEN1 gene

Joel Castro

Chris Castro

No signs of Alzheimer's PSEN1 gene carrier

Son

Son

Crystal Merritt

Tyler Castro

Joshua Pagan

Daughter

Son

Son

An African American family on living with Alzheimer's

Kim and Robert Reid

Diversity and Dementia

"Historically, because of our lack of healthcare, because our lack of funds to even go to the doctor, those things [about Alzheimer's risk] were not prevalent to us to be able to recognize and to understand. So, the more knowledge that we can put out here — “Go get checked,” “Do this,” “Do that” — [the better]. If they see a Black face doing it, they are more apt to. First of all, they can see it can happen to them — and also they can do something about it."

Robert Reid, Kim's husband, Main Caregiver

Listen

Explore the REID Family Tree

Click to learn more about

Christmas Time

Advocacy

Love Story

Kim's Family Tree

Click on a family member to learn more

Earl Wilson

Willie Louise Wilson

MotherParkinson's Disease and Lewy body dementia

Father Undiagnosed Dementia

Robert Reid

Kimberly Reid

Tracey (Reid) West

Husband Main Caregiver

Early OnsetAlzheimer's

Younger sister

Brandice Reid

Brennan Reid

Daughter

Son

Kim's letter to Robert in their high school yearbook

Click on image to enlarge

Kim's daughter, Brandice, reads the yearbook letter from her mom to her dad

Listen

Back to Kim's Page

Alzheimer's disproportionately affects people of color

Embedded video: The Journey of Dementia

Special thanks to Robert Reid and Michele Castro and their families for providing personal photos and videos.

Learn more

Meet the Reid family

Meet the Castro family

Elba Kortright

Michele credits her cooking skills to her aunt Elba. She remembers spending the holidays crowded into their Bronx apartment eating Puerto Rican food. Michele honors her aunt by perserving the same holiday traditions and passing it down to her family.

Listen

Michele's stepson, Joel, with Elba and Michele

Michele shares memories of aunt Elba

Earl Wilson

Kim's father, Earl, was a cross-country truck driver. He was diagnosed with dementia around 2015, a year before his wife, Willie, was diagnosed with Parkinson's and Lewy body dementia. And two years before his daugther Kim was diagnosed with early onset Alzheimer's. Tracey and her husband became full-time caregivers to her parents.

Listen

Tracey West: Signs of my parent's dementia

Robert has been Kim's full-time caregiver since her early onset diagnosis. In August 2023, he was recognized for his dedication and award the Caregiver Award by the James M. Dixon foundation, an organization that provides funding for Alzheimer's and dementia related diseases. His son, Brennan, captures the special night and Robert's speech.

Brandice Reid

Brandice is the oldest child of Kim and Robert. She teaches at an elementary school and lives at home so she can help take care of her mother and support her father as the full-time caregiver. Photos taken by Brennan Reid and the Reid family.

Listen

Listen

Brandice talk about Kim as a mother

Why Brandice decided to stay home

As a photographer, Brennan captures his family's ordinary and special moments.

Listen

Brennan talks about his mother's "Almost better than anything cake"

Click to see the recipe

Maria D. Rolon

Michele's grandmother, Maria, and her husband lived in Puerto Rico while two of her children moved to New York. She became blind in her late 40s but continued to work around the house. Later, when Maria developed dementia symptoms, her children took turns taking care of her.

Listen

Michele Castro: Grandmother Maria's Alzheimer's

High School Sweethearts

Click to listen and read Kim's letter to Robert in their high school yearbook.

Robert and Kim's story started in middle school when Robert gave Kim a rose and his phone number. Though Robert had to move away in high school, they kept in touch and were engaged after Kim graduated from college. Their love story continues today.

Kim grew up in southern Kentucky in a small town called Hopkinsville. Although Kim is currently in the moderate to late stage of early-onset Alzheimer's, she still enjoys spending time with her family and visits her childhood home where her sister, Tracey, currently lives.

Michele and Carmelo developed instant chemistry across the dance floor in New York City. Since then they've been married for more than 25 years. Both had kids from previous marriages but they raised all their children in the same household, making one large blended family.

Michele is supported by her large, blended family, including her husband Carmelo, three children from her previous marriage, and two children from Carmelo's previous marriage. Michele and Carmelo got married 25 years ago and raised all their children in the same household. Now grown, they all remain close.

Michele Castro's mother and brother both died with early-onset Alzheimer’s before the age of 60. In her 40s, Castro took a genetic test and learned that she carries an inheritable genetic variant called PSEN1, which spikes the risk of developing the disease herself. Now, she's fighting for a brighter future for her and her children and grandchildren.

Rosa Belen Gonzalez

Michele's mother, Rosa, was born in Aguadilla, Puerto Rico. She met Michele's father in New York and became an active and respected member of the Bronx community. Rosa worked as an administrator for Section 8 housing helping people in her community. Rosa passed away before she turned 60 but it wasn't until Rosa reached the late stages of early onset Alzheimer's that Michele discovered she had the PSEN1 gene.

Michele Castro: Finding out about her mom's diagnosis

Listen

Rosa with Jose and Michele in New York City

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José M. Montalvo

José (Joe) had a career as an Emergency Medical Service worker for the FDNY. He worked during the 9-11 World Trade Center attack and aftermath. Diagnosed with early-onset Alzheimer's when he was in his 40s, Joe passed away at 59. His big personality and jovial nature left an impact on his friends and family.

Michele Castro: Happiest childhood memories

Carmelo Castro: What made Joe special

Crystal Merritt: Taking care of Uncle Joe

Michele's son, Chris, is a registered nurse and nurse educator. He uses his medical background to help navigate Michele's doctor's appointments. He chose to live 15 mintues away so he can lend hand whenever it is needed. Chris has no blood relation to Michele.

Willie Louise Wilson

Kim's mother, Willie, was a factory worker who also worked as a church secretary. She was diagnosed with Parkinson's disease in 2016 and later with Lewy body dementia. Around the same time, Kim was diagnosed with early-onset Alzheimer's. Tracey and her husband moved back into her parents' home to help take care of them.

Listen

Tracey West: I have three family members with dementia

When Crystal found out her mother has the PSEN1 gene, she was just engaged to be married. Today she cherishes every moment she has with her mother. Crystal isn't sure if she wants to get tested for the PSEN1 gene.

Michele on the future

Michele is currently 55 years old and has yet to exhibit symptoms associated with Alzheimer's, but the fact that she carries the PSEN1 gene makes it likely that she will develops Alzheimer's before 65 years old. Her genetic status motivates her to plan for the future. After witnessing how the disease impacted her mother and brother, she hopes to make it easier for her family.

Listen

Michele's concerns about Alzheimer's

Listen

What Michele wants for her husband

Alzheimer's Advocacy

Click on the arrows to see Michele's photos

When Michele's brother was diagnosed with early-onset Alzheimer's, he was too young to access certain healthcare resources. Fighting for others like him, Michele has dedicated herself to education and advocacy in her community. Working with her local Alzheimer’s Association chapter and as an Alzheimer’s congressional team member, she helped get a law in place that allowed people with early-onset Alzheimer’s to access resources from the Older Americans Act.

Tracey talks about her big sister Kim and what she was like growing up together.

Tracey West: The first time I noticed Kim's memory loss

Listen

Kim and Robert's son Brennan is a professional photographer and the family's filmmaker. Brennan gives us an intimate look into his family's 2022 Christmas celebrations.

Welcome to Being Patient's interactive feature, "Alzheimer's Disease: Generations of Impact."

You're about to meet two remarkable women affected by familial Alzheimer's. One lives with a diagnosis — the other lives with a high-risk gene. Hear their experiences, meet their families, explore their family trees, and see how dementia impacts the Reids and the Castros in generations past — and possibly, in the generations to come. Choose your own path through these intimate stories, photos and videos. You'll learn more about what it's like to live with Alzheimer's — and how people are advocating within communities of color to raise awareness and help change the course of the future.

Kim is currently in the moderate to late stages of early-onset Alzheimer's. Robert works from home and is the full-time care partner of Kim. Robert believes that Alzheimer's affects the whole family, but also brings him closer to his wife.

Jacinto Ramos

Michele Castro: "We think grandfather had Alzheimer's"

Listen

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High School Sweethearts

Click to listen and read Kim's letter to Robert in their high school yearbook.

Robert and Kim's story started in middle school when Robert gave Kim a rose and his phone number. Though Robert had to move away in high school, they kept in touch and were engaged after Kim graduated from college. Their love story continues today.