Meet Josephine. Italian immigrant. Hard worker. And uber-good pizelle/angel wings/pizza/anything-Italian maker.

She is my grandmother… it’s been about a year and a half since she passed away.  I miss listening to her amazing life stories about meeting my grandpa, immigration ordeals, and how she learned English when she came to America.

Sadly, the last year or so of her life, she was not truly the Grandma I remember from my childhood. Dementia deteriorated and changed her personality, appetite, and memory. I distinctly remember she would forget how to make certain traditional Italian foods, or they wouldn’t come out right (when in the past, she knew the recipe by heart and they were so delicious!). She used to crochet with super-thin thread – intricate doilies, tableclothes, and more – but even this life-long skill fell away.

She eventually had to move in with my mom, and shortly afterwards to an assisted living facility. It was sad seeing her kinda-wise-cracking personality disappear slowly. Her Italian reprimands, the all-knowing Grandma nod after giving advice, and her hearty laugh when we’d ask her endless questions about her life in Italy.

We don’t know for sure if she had Alzheimers, as currently that can only be diagnosed definitely with an autopsy, but it’s likely she did, since Alzheimer’s is the most common form of dementia. Regardless of not having a firm diagnosis, the result of the disease were clear to all who loved and knew her.

Recently, I had the chance to sit in on a conference panel with the Banner Alzheimer’s Institute, and learn more about Alzheimer’s disease, and the steps being taken to prevent it. I was amazed how little I knew! For instance, did you know:

  • Alzheimer’s is NOT a normal part of the aging process, but instead a terribly debilitating disease.
  • Alzheimer’s is the 6th leading cause of death in the United States.
  • People die FROM Alzheimher’s not “with” it. The disease causes people to forget basic body functions like how to swallow and how to walk.
  • Alzheimer’s is only about 1% hereditary, meaning it could strike anyone.

The sobering reality is the prevalence of Alzheimer’s is projected to increase in coming decades because of the nation’s aging population. And yet, it’s the only disease in the top 10 that is not curable, treatable, or preventable!

But there’s hope we won’t lose more loved ones to this disease: The Alzheimer’s Prevention Registry. Following a model successfully used by breast cancer researchers, the Registry is a community interested in making an impact on Alzheimer’s research to help stop the disease. The goal of the Registry is to:

  • Provide updates on the lastest advances and new in Alzheimer’s reasearch and brain health
  • Provide a source of potential study participants for prevention research across the country (did you know it’s difficult and costly to find research study participants? I didn’t!).
  • Offer resources in partnership with AlzForum

FACT: More than half of U.S. adults believe not enough is being done to fight Alzheimer’s disease. Do you?

Well, here’s your chance to help fight this devastating disease. Join the Registry (I did!) to help bring an end to the painful progress of Alzheimer’s disease. Anyone over the age of 18 can join, regardless of health condition. It’s easy – you’ll be asked for basic contact and demographic info, and a few yes/no questions about your experience with Alzheimer’s (you decide what to share). Plus, your privacy is protected: your information will only be used to contact you with relevant news and, if you opt-in, to connect you to potential research studies.

I’d be willing to participate in a study if it meant saving the lives and quality of life of dear ones. So I’m asking readers to join me in spreading the word about the Alzheimer’s Prevention Registry, and sign up to help reach the goal of 100,000 members by July 2013!

Have you had a loved one affected by Alzheimer’s or any form of dementia? Please consider joining the Registry to help prevent, treat, and eventually stop Alzheimer’s disease.

This post was written as part of a sponsored campaign with the Banner Alzheimer’s Institute and The Motherhood. I took part in the webinar and all opinions expressed are my own.

Leave a Comment

  • WeeMason's Mom September 18, 2012, 10:39 pm

    My maternal grandmother spent the last 10 years of her life in an Alzheimer’s home. When she went in, she had trouble remembering names and felt like no one ever visited her when people would have been there all day the day before. Within a few years, she couldn’t even remember how to feed herself. It was a very sad decline. My paternal grandmother also suffered from Alzheimers, but thankfully passed away before it got to that point – hers manifested as paranoia (thinking people were in her house after she’d been awake in the night digging through drawers) and forgetting how to cook things she’d made nearly every day of her life.

    My mom lives in fear that she will get Alzheimers too and it’s sad to see how much of her time and energy she spends thinking about it.

    Alzheimers really seems to be one of those things that everyone knows someone who has had it, but it’s not on the forefront of things that must be cured like cancer is.

  • T Rex Mom September 17, 2012, 10:47 pm

    Oh Julie, I am so sad for your dear sweet grandmother and her suffering from this. Thank you for your information and spreading the word.

    My brother-in-law’s mother died from Alzheimer’s as well. It was so sad to see her digress. Tough on everyone. I will look into joining the registry as well.

  • heather c. September 17, 2012, 8:15 am

    I can relate. I have had 2 grandmothers suffer dementia at the end of life. One, fortunately, was already in her 90s when she began to forget things and she did not have the personality changes so much before she died. And she still remembered me and other family members. She was heartbroken that she could no longer safely live independently in her own house though. The other lingered for years in assisted living then full-care nursing facilities, and she did not recognize any of us for most of this time. She had a baby doll that she thought was a real baby, and she treated it like her own real baby; and that “baby” was more real to her than her own adult children or her grandchildren. It was gut-wrenching to visit her. She never did know my older son, even though she was still alive for his first 4 years and they met each other. I feel that watching a loved one change and slowly deteriorate from Alzheimer’s and similar forms of dementia was more painful than sudden deaths of loved ones, for me.

  • Sarah Jane September 16, 2012, 9:00 pm

    The biggest reason I went into nursing was because of my experiences working as a nurse aid at a nursing home in the Alzheimer’s-Dementia unit.

    My husband’s maternal grandparents both had Alzheimer’s, and his dad was recently diagnosed with having Dementia. Needless to say, we’re praying that God will keep his dad’s mind for a while, and ultimately, we’re praying for God’s grace for both his dad and us.

  • Cindy Merrill September 16, 2012, 10:50 am

    I was raised by my grandparents; my grandmother began to develop alzheimers when I was 11. As a consequence, my aunts pretty much spoiled me, didn’t make me do chores, help out in the potato field or the vegetable gardens, in fact, I didn’t learn how to cook until I went into Job Corps! I wish they hadn’t of, because I didn’t mature as an adult as quickly as I should have.

  • Crunchy Beach Mama September 16, 2012, 8:25 am

    I feel blessed that I have never had anyone close to me go through this. I can’t imagine…