June 2018 Lewy Digest | Lewy Body Dementia Association LBDA

June 2018 Lewy Digest


Quote of the month: 

Greetings Lewy Family and Friends,

Can you believe it’s already June? We are approaching our 15th anniversary celebration this September. This month we want to recognize family. Family is so essential and so important. In this month's Digest, learn how a father's love helped to shape our 2017 Volunteer of the Year recipient into the person she is today. Also, pick up some tips on how to make your loved one more comfortable during times of distress. 

LBD Father’s Day Spotlight: A Father's Influence Magnified

Paul Rice was an elementary school principal who created his own philosophy on education - to give each young mind he encountered the proper sense of belonging and importance.  He did this by remembering their names and keeping track of their progress as they grew older. Even as he began to age and the effects of his Parkinson’s disease dementia became evident, Paul would still inquire about his students. He genuinely cared about them and their lives.

He was a high-spirited man and a father who had no problem stepping up and getting creative when he knew he was needed. He was also a devoted family man. As his disease progressed, he began displaying erratic behavioral issues. In 2008, Paul was diagnosed with Lewy Body Dementia after experiencing a psychotic break as a result of being prescribed a drug from a previous, inaccurate, diagnosis of Vascular dementia. After showing major improvement at a local memory care unit, he was later moved to assisted living. His daughter, Paula and other family members took turns caring for their father, taking him to doctor appointments, maintaining his finances, and also making sure his mind remained active.

Shortly after her father’s diagnosis, Paula and her husband began looking for resources and support. Little did they know they would find a community in their local LBDA support group. The support group was the unity they needed, filled with individuals who knew the challenges of watching a loved one battle LBD, and ready to help with recommendations for doctors and resources.  These meetings became a priority for Paula and her family because of the newfound support and help.

Even after her father’s death in 2011, Paula still attended the support group meetings, because, to her, it was important to be a help to others.

In 2012, Paula made the decision to become a support group facilitator after the facilitator in the group she attended stepped down to pursue other efforts. During her LBDA facilitator training, Paula learned about the shortage of Lewy Buddies* and decided to add that to her repertoire of service. The decision, as Paula says, was a “no brainer” as she was retired and had plenty of time.  She used her time to be there for others when they needed it the most – the same way the LBDA staff and volunteers had been there for her and her family during their darkest and most vulnerable times.

In March 2018, Paula created a support group specifically for individuals living with LBD. Paula’s journey and continued efforts truly exemplify the saying “A father’s love and influence is eternal.” Thank you Paula for giving those affected by LBD a sense of belonging and importance just as your father did for those around him.

*Lewy buddies are experienced LBD caregivers who volunteer their time and experience to LBD families by offering support and guidance as well as referring families to additional programs and services as appropriate for their needs.

Care Partner Tips:

3 Ways To Respond When Someone with LBD Says "I Want to Go Home"

Hearing your loved one with LBD or Alzheimer's say "I want to go home" continually can become frustrating, especially when they are already home. We have three types of responses that can be used to calm down your loved one and avoid further fights. 
3 Kind, consolatory responses to “I want to go home.”

1. Reassure and comfort

Sometimes the phrase “I want to go home” is a person suffering from dementia's way of relaying that they are tense, anxious or even scared. It can also be used to express the need for comfort. Consider approaching your loved one in a calm and relaxing manner. They will be able to pick up on your body language and tone of voice and will subconsciously start to mimic yours.
Affection also goes a long way. If they are huggers, now is the time to give them one. While others prefer a less invasive approach, a gentle hand on the arm or stroking of their back may be helpful. Even something as simple as sitting with them is also an option.

2. Avoid reasoning and explanations

Sometimes using reason or logic with someone who has a brain disease can cause unnecessary strain on them. Using this tactic may result in them feeling like you are forcing them to be somewhere they don’t want to be.

3.  Agree, then redirect and distract
The ability to redirect and distract a loved one is a challenge, but a very effective technique. If it doesn’t work the first few go-arounds, don’t get down on yourself. Keep practicing.

  • First, agree and validate

Agree by saying phrases like “Sure, we can go soon.” or “Great idea! Let’s go as soon as I finish doing the laundry.” This is calming the situation because you aren’t neglecting their wants and telling them that they are incorrect.

  • Then, redirect and distract

After agreeing, subtly redirect their attention to something else or activities that can take their mind off wanting to go home.
For example, you can gently take their elbow while saying “Ok, we will go soon” and shift their attention to their favorite show or having them sit in front of a window and suggest looking at the flowers or the birds. Later, casually change to another activity that’s a part of their daily routine.

Source: Daily Caring

Science and Research:

Warning Signs: Linking REM Sleep Behavior to Neurodegenerative Disease

An unusual sleep disorder that makes people physically act out their dreams, called REM sleep disorder or RBD, is a known risk factor for LBD, Parkinson’s disease and multiple system atrophy. New research has identified additional symptoms that, when paired with RBD, suggest a Lewy body disorder is underway.

Source: Neurology Advisor

CFE Movement

Want to make a difference in your community? Join or start a community fundraising event in your area and get involved. LEARN MORE

Latest News

Lumbar Punctures and Lewy Body
A lumbar puncture, also called spinal tap, is a low-risk medical procedure that can be done in a doctor’s office. Learn why spinal fluid is so important in LBD clinical research studies.  Learn more

Upcoming Events

Lifting the Fog From Lewy Body: June 28, 2018, in Swampscott, MA
Neal Badger Memorial Golf Tournament: June 29, 2018, in Shortsville, NY
3rd Annual Cruise for a Cure: July 13, 2018, in Fort Lauderdale, FL

Submit your stories

Want to be featured in our Digest? Submit your story on our website and we will feature them on our Facebook page.

Remember your donation will strengthen our efforts to advance outreach, education, research, and support those affected by Lewy body dementias, their families, and caregivers. We are dedicated to raising awareness and promoting scientific advances. Your gift makes a difference in the lives of all those affected by Lewy body dementia. Thank you for your continued support.

Please consider making a taxable donation to help enhance awareness and provide continued support for those affected by Lewy body dementias. Thank you.