May Update

Good afternoon Lewy Warriors!

It's time for our May update! Can you believe how fast time is flying by?! We hope you have all been keeping well, safe and balanced. Firstly, we wanted to update you all on the total funds raised by the events we ran in the Spring. The new total, $3,525.00 + $1,100.00 (the total from the CLBDI Spring Fundraiser) puts us at a total of $4,625.00. Wow... Amazing stuff from our amazing community. Thank you, thank you, and thank you again. The CLBDI Spring Fundraiser is closing after this post goes live and the money raised will be donated later this week.

As we said in our April post, we will not be doing any more fundraising until the Fall... but we are hard at work putting together new graphics, LBD content and merchandise for you to enjoy. Of course, a percentage of sales from the CLBDI merchandise will go to Dr. Pasternak and his team. We can't wait to show you what we've been working on. We are also nearing our $20,000.00 goal and looking to get ourselves out into the community in a more visible way. If you know anyone who would be interested in speaking with us in the press or online, do not hesitate to reach out to us through our contact form.

With the pandemic's end in sight, we also are beginning to (cautiously) think about and plan our return to in person events. This would not be happening until the Fall but we are so excited to get back out there and see all of you wonderful people and meet some new friends as well. More information will be available as things progress but it is so great to be able to even think about in-person events again. A huge thank you and shout out to all the frontline and medical workers that have helped us weather this storm. If you haven't yet looked into vaccines in the region, please check out this site for more information. Every vaccine shot administered is another step closer to the end of this pandemic. We're so close now... please do your part to keep yourself and your loved ones safe.

We also wanted to use this month's blog post to cover a topic that we haven’t yet and feel that we should be talking about… The neurological phenomenon known as “sundowning”. You might have heard it before, but many may not know the details. So, what is “sundowning”? And how can you, as a caretaker or care partner, help your Loved One who is suffering from it? We’ve put together some information and resources for you here. You will also find this and other information added to our LBD Resources page as of today.

So let’s get to it…

Wikipedia states that “Sundowning, or sundown syndrome is a neurological phenomenon associated with increased confusion and restlessness in patients with delirium or some form of dementia. Most commonly associated with Alzheimer's disease, but also found in those with other forms of dementia, the term "sundowning" was coined due to the timing of the patient's confusion. For patients with sundowning syndrome, a multitude of behavioural problems begin to occur in the evening or while the sun is setting. Sundowning seems to occur more frequently during the middle stages of Alzheimer's disease and mixed dementia. Patients are generally able to understand that this behavioural pattern is abnormal. Sundowning seems to subside with the progression of a patient's dementia. Research shows that 20–45% of Alzheimer's patients will experience some sort of sundowning confusion.” (https://en.wikipedia.org/wiki/Sundowning)

​Furthermore, “The term "sundowning" refers to a state of confusion occurring in the late afternoon and spanning into the night. Sundowning can cause a variety of behaviours, such as confusion, anxiety, aggression or ignoring directions. Sundowning can also lead to pacing or wandering. Sundowning isn't a disease, but a group of symptoms that occur at a specific time of the day that may affect people with dementia, such as Alzheimer's disease. The exact cause of this behaviour is unknown.” - Dr. Jonathan Graff-Redford, M.D., The Mayo Clinic (https://mayocl.in/34u2yy7)

The article by Dr. Graff-Redford also share this list of further information regarding factors and tips related to “sundowning”:

Factors that may aggravate late-day confusion include:

• Fatigue
• Low lighting
• Increased shadows
• Disruption of the body's "internal clock"
• Difficulty separating reality from dreams
• Presence of an infection such as urinary tract infection

Tips for reducing sundowning:

• Try to maintain a predictable routine for bedtime, waking, meals and activities.
• Plan for activities and exposure to light during the day to encourage nighttime sleepiness.
• Limit daytime napping.
• Limit caffeine and sugar to morning hours.
• Keep a night light on to reduce agitation that occurs when surroundings are dark or unfamiliar.
• In the evening, try to reduce background noise and stimulating activities, including TV viewing, which can sometimes be upsetting.
• In a strange or unfamiliar setting, bring familiar items — such as photographs — to create a more relaxed, familiar setting.
• Play familiar gentle music in the evening or relaxing sounds of nature, such as the sound of waves.
• Talk with your loved one's doctor if you suspect that an underlying condition, such as a urinary tract infection or sleep apnea, might be worsening sundowning behaviour, especially if sundowning develops quickly.

Here are some more links to “Sundowning” information and tips:

“SUNDOWNING: WHAT IT IS AND HOW YOU CAN HELP” (https://lewybodyresourcecenter.org/sundowning-what-it-is-and-how-you-can-help/) - Norma Loeb, The Lewy Body Resource Center

“Tips For Coping With Sundowning” (https://www.nia.nih.gov/health/tips-coping-sundowning) - The National Institute Of Aging
​
“Caregiver Training: Sundowning” Video (https://www.youtube.com/watch?v=kskiEKghjAE&ab_channel=UCLAHealth) - UCLA Alzheimer’s and Dementia Care Program