Magnify Your Voice: Join the A List 1000 Today!

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“Together we can magnify our voice. Validate our journey. Help others too.”   ~Meryl Comer, Caregiver, Advocate, and President, Geoffrey Beene Foundation Alzheimer’s Initiative

So often, we, as caregivers, feel isolated, alone, and misunderstood. We talk, but is anyone really listening? Does anyone even care what we have to say?

The last thing we want to believe is that our journey has been in vain. Whether you are living with dementia or are a care partner to someone with dementia, you know you have an abundance of experience and insight that can help others on this path. You know there is purpose in your story.

What if there was a free, easy way for caregivers and individuals who are living with dementia to share personal experiences and valuable information and insights with researchers? What if we could do something to strengthen the collective voice of people just like us? Well, for the first time ever, that opportunity exists!

Every AD support group should join the A List 1000. Think of the power when together we make our patient/caregiver preferences known. ~Meryl Comer

The A List 1000 is a free, anonymous, online community of self-identified, diverse participants who meet any of the following criteria.

  • Have been diagnosed with MCI, Alzheimer’s, or another form of dementia
  • Believe you are at risk for Alzheimer’s or another form of dementia
  • Is or have been a caregiver to someone living with Alzheimer’s or another dementia

A List members will use their collective voice to accelerate research and bring a new level of understanding and value to self-reported patient and caregiver information. Simply put, we want researchers, lawmakers, advocacy groups, the medical community, and other important agents of change to HEAR US and put our valuable input to work!!

We will:

  • Help federal and state governments understand how they can provide financial support to families through grants and other means.
  • Help researchers understand how doctors, patients, and families can work together to improve the treatment approach and experience.
  • Help lawmakers better understand what patients and caregivers need right now and what is most important to them.
  • Help advocacy groups to better serve those they support.
  • Help test technological devices aimed at making life easier for caregivers and people living with dementia.
  • Help further research by participating in clinical trials.

Members of the A List will be offered various opportunities based upon their specific situation. However, it is completely up to each individual to decide which to participate in, and your information is always anonymous! It may be something as quick and easy as an online survey, but it will be highly impactful!

As someone whose life has been changed by Alzheimer’s disease, I’m extremely excited about this first of its kind initiative! This is a unique chance for caregivers and people living with dementia to be heard and to have our opinions and experiences considered and validated. It isn’t often that we get an opportunity to put our hard earned knowledge to work for the greater good – but the A List is making that possible!

I joined the A List to honor my beautiful mother, Marilyn, who left me almost four years ago. I hope you’ll honor someone important to you by registering today! Click here to join the A List 1000 today and give VOICE to your story! 

 

Expert Tips for Making Your Visits Joyful

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It’s what all of us want – for the time we spend with our loved ones to be the best it can possibly be! We want to see them smile, we want to create moments of joy for them, and we want these to be memories we’ll treasure forever. Depending on the circumstances or the day, this can prove to be quite a challenge.

Our friends at the Association for Long Term Care Planning recently asked 20 industry experts to share tips on visiting loved ones living in long term care. I was honored to be among those asked to contribute, and I’m pleased to share the resulting article with you. I hope you’ll find some hints that are helpful in your situation.

20 Experts Talk: DOs and DONTs When Visiting Mom and Dad at the Long Term Care Facility

 

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Some of our favorite memories…

 

Meet Victoria

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This video is not only a lovely tribute from a daughter to her father, but it carries an important message. No matter how far along someone is in the disease, they deserve our attention, love, and respect.

Too many people still have this false notion that once a loved one no longer recognizes them, there’s no reason to visit. It pains me that this line of thinking still exists. Even in the latest stages, there are moments of clarity, and we just don’t know when they’ll come, but regardless, every person on the planet needs love, affection, and human interaction. Whether they remember you or not, they need you. Please don’t forget this.

Victoria’s father was diagnosed with young onset Alzheimer’s when she was just 19-years-old. Here is her story.