2022 Takeaways

Going into Youth Summit 2022, our goals were to:

Exchange caregiver strategies

Share pieces of our common stories

Expand our brain health knowledge

Build our growing youth alliance

And we’re so excited to show you how we did that!


the BRAIN: awareness

Expanding our brain health knowledge and wellness.

caregiver ART

Exchanging creative art techniques and ideas to incorporate into the home.


Sharing pieces of our common story.

the BRAIN: awareness
Session Takeaways

Alzheimer’s FAQs

Alzheimer’s disease is named after Dr. Alois Alzheimer. Alois Alzheimer was a German psychiatrist and neuropathologist in the early 1900s and was the first individual to describe symptoms we now know to be consistent with Alzheimer’s disease. In 1901, Dr. Alzheimer observed a 51-year-old woman named Auguste Deter who presented strange behavioral symptoms including short-term memory loss. Dr. Alzheimer continued to follow Auguste Deter until her death in 1906. Using her brain and medical records, Dr. Alzheimer discovered amyloid plaques and neurofibrillary tangles in Auguste’s brain – these anomalies (amyloid plaques and neurofibrillary tangles) are now the hallmark pathologies associated with Alzheimer’s disease. 

“Dementia” is a general term used to describe a decline in mental ability severe enough to interfere with one’s daily life. Different conditions can cause dementia. Alzheimer’s disease is a specific disease diagnosed by the presence of amyloid plaques and neurofibrillary tau tangles and is the most common cause of dementia.

A number of changes take place in the brain of a person with Alzheimer’s disease. Scientists are still working to understand which changes may cause Alzheimer’s and which are the results of the disease. 

Amyloid plaques are composed of amyloid-beta protein. Amyloid-beta protein is formed from the breakdown of a larger, naturally occurring, protein known as an amyloid precursor protein (APP). The breakdown of APP can generate amyloid-beta proteins of different length – for example, amyloid-beta-42 (or AB42) is an amyloid-beta protein that is 42 amino acids long. Other common forms of amyloid-beta generated during APP breakdown are AB38 and AB40. AB42 is believed to be especially toxic to the Alzheimer’s disease brain. In the Alzheimer’s brain, abnormally high levels of amyloid-beta protein clump together to form plaques – these plaques get wedged between brain cells (neurons) and make it very difficult for them to communicate effectively. Amyloid plaque pathology begins to develop decades before an individual has any disease-associated symptoms. 

Neurofibrillary tangles are abnormal accumulations of tau protein inside neurons (brain cells). In healthy neurons, tau helps stabilize the cell structure. In Alzheimer’s disease, abnormal chemical changes cause tau proteins inside neurons to stick together, forming tangles inside neurons. These tangles block the neuron’s internal transportation system, making it difficult for the neuron to communicate with other neurons.  

The presence of amyloid-beta plaques and tau neurofibrillary tangles leads to chronic inflammation in the brain. Chronic inflammation can further damage neurons.

As these pathologies continue to develop, neurons throughout the brain become injured and die. Over time, this may cause brain regions to shrink (a process called atrophy). 

To date, there is no cure for Alzheimer’s disease, rather current treatment strategies focus on temporarily improving symptoms of the disease (memory loss and problems with thinking and reasoning). Available treatments work to boost the performance of chemicals (sometimes referred to as neurotransmitters) in the brain that carries information from one brain cell (neuron) to another. While these treatments are temporarily beneficial, they do not stop the underlying cause of decline or the death of additional brain cells. As more brain cells die, Alzheimer’s disease continues to progress. Scientists are currently working to develop new disease-modifying treatments for Alzheimer’s disease – these new drug classes include antibodies targeting amyloid plaques, antibodies targeting tau neurofibrillary tangles, and antibodies working to target the immune system. 

Beyond therapeutics, lifestyle modifications such as diet, exercise, proper sleep hygiene, and stress reduction have been shown to help protect the brain against Alzheimer’s disease, in part by maintaining healthy blood pressure. Relevant studies include SPRINT MIND, SPRINT MIND 2.0, WW FINGERS, and US POINTER, among others. 

  • Note: we should strive for “normal”, not necessarily low blood pressure, keeping in mind that normal blood pressure is defined by a range of acceptable values. Individuals should consult their doctor to understand their normal values.

caregiver ART
Session Takeaways

We learned how art can have an impact on both a person with Alzheimer’s and the family of that person, and youth provided their ideas and suggestions on types of art and activities they can do at home. Here is the feedback from each session – we collected the ideas from each session to try at home especially since you have all of the supplies.


  • Look at a family photo and then draw my favorite place.

  • Read a poem and then draw something that it makes you feel or think of.

  • Listen to my favorite song and draw while listening.

  • Someone could read from a book and people in the family can write down what they are thinking about while it is being read, then everyone can talk about it.

  • Sit down as a family and each person can draw their favorite kind of day and everyone shares and talks about it.

  • Play a board game with your family and draw how it makes you feel.

  • Find an image to look at and play two different pieces of music and talk about which one fits the image better.

  • Trace your hand and/or think about what you like to do with your hands--play music, hug, bake, cook, etc.

  • Go for a walk, collect things from nature on the walk, then use those materials to make something together.

  • Look into artist Andy Goldsworthy, who uses nature to make art.

  • Find a favorite place in nature and spend time there.

  • Put a picture on a piece of paper and then draw the setting or environment to show all of the things that could go around it.

  • Draw my favorite plant or animal.

  • Interview someone in the family and then make a picture collage of all of the things they share.


  • For a family activity: find an idea for a mural that everyone can make at the same time.

  • For 2 or more people: everyone does two different pieces of artwork and then you work together to combine them in some way--finding how to match them up somehow with color or design.

  • Take something from a favorite family vacation, or favorite walk that you’ve collected things from, and then draw it.

  • Listen to music and pay attention to the lyrics and think about how you are feeling.

  • Go outside and take time to look at your surroundings and the things you see in nature.

  • Collect items from nature on a walk and then make art with those materials.

  • Draw your favorite kind of day.

  • Trace your hand and turn it into something you like to do.


  • Two options: Draw what you see, or, play your go-to song and draw whatever comes to your mind while you are listening.

  • Draw something and then add on to someone else’s drawing (either another drawing of yours or someone else in the family), or spend time on a visual collaborative brainstorm.

  • Fold paper and draw something on each part of the paper using the exquisite corpse technique.

  • Put on happy music and draw to the music to express yourself through art.

  • Play your favorite music to connect with yourself. Dance and sing along, which will help lift your mood.

  • Find, play, and connect to traditional music as a way to preserve cultural identity within the music.

  • Watch and listen to videos, hymns, etc that you connect with and that help connect you to your cultural and personal identity.

  • Practice some of these activities on your own first, and then find the ones you like and bring them to your family to do together.

  • Listen to music as a family and then collaborate to create a story that goes with the music.

  • When looking at an image, imagine what just happened before or after the image was taken and draw what you image happens next or before. Check out this example from the Yale University Art Gallery Collection for this activity: https://artgallery.yale.edu/collections/objects/79318

Session Takeaways

Resources for Children & Youth of those diagnosed with Younger-onset Alzheimer’s:

  • Video & Book recommendations for Kids & Teens:
    • List of resources from the Alzheimer’s Association.
    • The Neuroscience of Memory: Seven Skills to Optimize Your Brain Power, Improve Memory, and Stay Sharp at Any Age, by Sherrie D. All, PhD.
    • Don’t Toss My Memories in The Trash, by Vickie Dellaquila
    • Alzheimer’s Early Stages: First Steps for Family, Friends and Caregivers, 2nd edition, by Daniel Kuhn
    • Loving Someone Who Has Dementia: How to Find Hope while Coping with Stress and Grief, by Pauline Boss
  • Helpful resources for caretaking:
    • ​​Teepa Snow’s website has comprehensive videos, webinars and resources for patients and caregivers including specific ways to support those living with brain changes, Check out the website HERE.
    • Caregiver’s Guide to Understanding Dementia Behaviors by the Family Caregiver Alliance (Visit HERE).
    • Caregiver Action Network (Visit HERE).