Early Stage Services  

An Annual Gathering

On November 4th, forty individuals came together at the Chapter office to attend our 2nd Annual Gathering for People with Early-Stage Memory Disorders.* We were delighted to welcome our New York City clients as well as those who traveled here from Long Island, Connecticut and upstate New York.

The day began with warm welcomes from our President & CEO, Lou-Ellen Barkan, and Jed A. Levine, Executive V.P. and Director of Programs & Services. The morning session that followed was a real treat for our participants who were given the unique opportunity to talk candidly with a physician about their dementia. All listened intently as Dr. Veronica LoFaso from the Weill Cornell Medical College, Division of Geriatrics and Gerontology, answered their many questions about treatments, medications, types of dementia, MCI (Mild Cognitive Impairment), current research, and ways to keep healthy in spite of their diagnoses. Dr. LoFaso’s calm and easy-going demeanor was much appreciated by the participants who felt that she provided them with very thoughtful and valuable information. As one individual said, “I really liked the doctor. She seemed so sensible and understanding and she didn’t rush.”

After the medical session, a hearty lunch was served by Chapter staff and volunteers, which received high praise. The participants also had the opportunity during this time to get to know each other a little better, and many commented that they hoped there would be more occasions like this one to come together and learn from one another. It was clear to the group leaders who accompanied their clients that we must try to organize more events such as the Gathering to give early-stage people additional opportunities to be together and share their experiences.

The afternoon session was conducted by Maureen Matthews, RN, PhD who is the Director of the Early Memory Loss Support Program at the Stamford Counseling Center in Connecticut. She is also the creator of To Whom I May Concern, an interactive theater project that brings stories of living with early dementia to life as the script of those stories is performed by people who have been diagnosed before an audience of their peers, friends, care partners, and professionals. As Maureen encouraged our participants to share some of their stories about what it’s like to live with dementia, a letter was created which captured some of their thoughts and feelings in words to be shared with their care partners. The letter they produced appears on the opposite page.

And then it was time to say our good-byes. During our wrap-up, the vote was unanimous that Lauren and I should start making plans as soon as possible for a 3rd Annual Gathering. On her way out, one participant seemed to sum it up best when she said, “I thought the whole day was very good. I felt happy and secure when I left, that I was valued…and that means everything to me!”
To My Caregiver,

On November 4th, I joined a group of 40 people at the New York City Chapter of the Alzheimer’s Association for the 2nd Annual Gathering for People with Early-Stage Memory Disorders. In one of the sessions we talked about what it’s like to live with our illnesses, and wanted to share some of our words with you. Once you’ve read this letter, perhaps we could talk about who else might bene? t from reading it.

“I could do something yesterday… so just maybe I can also do it today.”

“Pay attention to me, even though I’m young. Just because I’m young doesn’t mean I
can’t have Alzheimer’s.”

“Let me enjoy things while I’m alive. I don’t intend to die so soon.”

“I’m very much aware of what’s happening. It’s not just our caregivers who are.”

“Don’t be afraid to talk with us about what’s happening to us. It’s good to have someone
who we can be open with.”

“You need to know who we really are and where we really are now in order to better
understand us.”

“We are still very viable people. We’re still very much here.”

“Don’t assume that I don’t know something… give me a chance.” “Don’t throw it in my
face that I might not remember. A lot of times I do.”

“You’ll understand us better if you listen when we say that we forget. Don’t just say ‘that
happens to me, too’.”

“It would be nice if you could sometimes be more sensitive and compassionate.”

“We have to recognize that living with this isn’t the end of the world.”

“Accept me as I am. Understanding is one thing; acceptance is another.”
We had a wonderful day at the Gathering all being together and having the opportunity to hear each other talk about what it’s like to live with dementia. We found out that we all have a lot in common!

Thank you for caring.
* The 2nd Annual Gathering for People with Early-Stage Memory Disorders was sponsored by Janssen Alzheimer Immunotherapy R&D LLC.