Z - Alzheimer's Disease

By; Stephanie Holland

I could use a play on words and explain the reason this last post in our A to Z Blogging Challenge is late by saying something about forgetting to do it. 

The truth is that it's a difficult subject to write, or even think, about.  For those of us with adult children who have Down syndrome, the worry about Alzheimer's disease is always present. 

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Part of our series of infographics on aging and Down syndrome

The Research

Many people with Ds begin showing signs of Alzheimer’s as early as 40 years old. It is essential that adults with Ds not lose the ground they’ve worked so hard to gain. The results of our research will benefit the Alzheimer's community, even in individuals without Down syndrome.

LuMind Foundation is working hard to uncover the science behind the Alzheimer's / Down syndrome link.  If you're interested in the research and what progress has been made, we suggest the session from Chief Scientific Officer, Michael M. Harpold, Ph.D. 

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Caregiving

In our community, the sad fact is that the research is likely to come too late to help our loved ones. Therefore, we need to talk about resources to help family caregivers.

We have started a collection of resources on one of our Pinterest boards.

Follow The Road We've Shared - Caring for an adult who has Down syndrome's board Down syndrome and Alzheimer's Disease on Pinterest.

One of the things you'll find there is a video: "Down Syndrome and Alzheimer Disease: What Caregivers Should Know Dr. Brian Chicoine." 


We also publish news articles on our ScoopIt! board: Adults who have Down syndrome.

We're always on the lookout for new resources to add.  If you find one that you think we should share, please let us know!

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The Genius of Marian

Since we here on The Road believe in the power of narrative and story telling, we often suggest the documentary "The Genius of Marian" and their companion project "The Genius of Caring."  The film tells one family's story, and the interactive website allows caregivers and patients connect and share their own stories. Check the website for a showing near you, or order your own copy on DVD.

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Advocacy

There are any number of ways to get involved and advocate on this subject.  We've already mentioned one - helping LuMind with their goals. Another would be to get connected with the Alzheimer's Association. 

We recently found another interesting venture to raise awareness: Hilarity for Charity.

Hilarity for Charity ™ (HFC) is a movement led by comedian Seth Rogen to inspire change and raise awareness of Alzheimer’s disease among the millennial generation.

Seth Rogen is using his star power and voice with a unique goal: "creating the next generation of Alzheimer’s advocates." 

How about a joint effort with Hilarity for Charity and Stand Up for Downs! ?

Not (Exactly) the End

While this is the final blog post in the A to Z Blogging Challenge, it's only the beginning of "All Together Now" as a theme on The Road.  We look forward to finding more ways to collaborate with others who have similar goals.

I hope you've enjoyed the past month of blogs and found something useful for your family.

Let's end the way we started - with a song!