July 2018 Lewy Digest | Lewy Body Dementia Association LBDA

July 2018 Lewy Digest


Quote of the month:
“You are always responsible for how you act, no matter how you feel.”—Robert Tew


Greetings Lewy Family and Friends,

Our 15th anniversary celebration is only two months away. We are so excited to be counting down the days with you! "Responsibility" is the Word of the Month in this issue of the Lewy Digest. Whether you are a care partner, a health care professional or a person with LBD, we all have a responsibility to support each other and ourselves.

It is our responsibility to keep you up-to-date on the latest LBD news, provide caregiving information, and let you know of ways to increase awareness. Enjoy this month's Digest.

Anniversary Party

On September 28th we are hosting the event of the year! That's right, LBDA is celebrating its 15 years of service with a party with a purpose--to raise awareness. Our anniversary party will also serve as an avenue to raise funding for LBD research.

We have done so much in 15 years with over 100 support groups across the United States and over 700 volunteers. We have helped countless families find support and resources. This year we've launched the Research Centers of Excellence, better known as RCOE. The RCOE centers are improving the quality of clinical care to support advances in diagnosis and treatment of those with LBD. Our social channels have been providing support to those within the LBD community while distributing news and information. With an astounding 20,000 followers on Facebook, we are bridging the gap of the community daily.

The anniversary party is bound to be a whale of a good time, with live music and a little magic we plan to make a night the LBD community will enjoy. Hosted at the Georgia Aquarium, we are certain to do the LBD community proud. In an effort to raise money for this free event, we have partnered with a few of Atlanta's finest businesses and corporations for silent auction items. Some of the items include tickets to games and theme parks, trips, vehicle rental and so much more. To learn more about how you can be involved with the event of the year visit our event page for more information!

LBDA Latest News

We are having a webinar!

Join us, July 23rd, for the LBDU Webinar: Partnering with your Medical Team in Lewy Body Dementia. Dr. Melissa Armstrong from the University of Florida, Dorothy Mangurian Clinical-Research Headquarters for Lewy Body Dementia will be discussing the importance of knowing you and your loved one's values and priorities, helping your medical team know you better, identifying your team, both medical and otherwise, and tips for partnering with your team!


Amazon and on and on: 

Did you know that Amazon supports nonprofit organizations? That's right, Amazon.com, everyone's favorite online retailer has an entire site dedicated to assisting nonprofit organizations like the Lewy Body Dementia Association. Amazon's fourth-annual Prime Day is coming up on Monday, July 16, and will feature 36 hours of one-of-a-kind deals exclusively for Prime members. When you shop at Amazon Smile during Prime Day, Amazon will donate a portion of your purchases to the Lewy Body Dementia Association. Don't forget to shop at smile.amazon.com on the biggest online shopping event of the year and continue your support the Lewy Body Dementia Association.

Care Partner Tips:

10 Ways to Respond to Dementia Hallucinations

With LBD and other dementias, changes in the brain can cause the sufferer to hallucinate - see, hear, feel, or even taste something that isn’t there. This is due to their brain distorting or misinterpreting their senses.

Even if the individual knows that it is not real, the hallucination is very real and difficult for the individual to disregard. For example, an individual with LBD may hallucinate a snake on the floor and know it's not actually there but their brain refuses to accept the reasoning and forces the perception upon the individual. Eventually, they may believe that the snake is actually on the floor.

Some hallucinations can be scary, while others may involve ordinary visions of people, situations or other objects from their past. Others may be pleasant or happy.

LBD hallucinations usually happen as the disease progresses. What is most important is to validate the individual’s experience, respond to their feelings and keep them safe. These 10 ways to respond to the hallucinations should help you navigate through the experience.

  1. Determine if a response is needed

The first step is to determine whether the hallucination is bothering the person. If the hallucination is pleasant, you might not want to respond or even call attention to it. Just know and accept it and be thankful that it is not causing distress. However, if the hallucination is causing distress or it is upsetting them, then it is time to step in and de-escalate the situation.

    2.  Stay calm and don't argue or try to convince using logic

When a hallucination episode is occurring, it is very important that you remain calm and do your best to avoid contradicting them. What they are seeing is very real to them and it is a symptom of LBD. Trying to explain that it isn’t real is simply ineffective.

If they are calm enough to explain what is happening, they may be able to tell you what is going on. Listen carefully and see if you can pick up on any context clues to what they are seeing. Keep in mind that with LBD the brain may mix up their ability to give you the correct words when they are talking.

     3. Validate their feelings and provide reassurance

Be very careful not to dismiss their experience. Brushing off what they are seeing by saying something passive, “Oh, there is nothing there” is likely to upset them. It helps to allow them to talk through what they are seeing. Having you take them seriously is a big part of reassuring their feeling of safety and security.

Focus on being kind and responding to their feelings rather than the hallucination itself. If they are shaken up about what they are seeing, try, “That sounds scary, I can see how upset you are.” If they are joyous about it you can try, “Oh that sounds lovely. I am glad that it makes you so happy.”

You don’t have to go to the extreme and pretend you can see what they are seeing, hearing, tasting or smelling. All you need to do is be supportive of the situation. It can really help relieve any fears of anxiety as if it was a real threat. A simple response like, “I don’t hear or see anything outside, but you seem tense. What can I do to help you feel safer?” is acceptable.
    4. Check the environment and remove possible triggers

Often dementia hallucinations are triggered by things going on around them. Their LBD brain can interpret sights and sounds differently, causing hallucinations. To remove possible triggers, check their surroundings for background noise or visuals that can stimulate the problem. Things like a TV or radio could make them believe that strangers are in the home, what’s happening on TV is real, or that they are hearing voices. Dim lighting could make shadowy corners a source of fear. Mirrors can too create the same sort of confusion.  

    5. Offer simple answers and reassurances  

When someone is having an LBD hallucination, don’t give them long explanations about what’s happening. Trying to process what you’re saying may add to their distress. A great way to offset this is to continue your support and reassure them with a phrase that is comforting, such as, “Don’t worry. I am here to protect you. I will make sure you are safe.”

Offering a comforting hug or a pat on the back may also provide the comfort and reassurance they need if they are scared or experiencing any type of anxiety. A connection with you may also help them pull away from the hallucination.  

    6. Look for patterns  

If hallucinations are happening frequently it is possible that there are triggers that are not obvious. A way to figure out if there is something in the surrounding area that is causing it track the activities to determine if there is a pattern. Taking notes of the time of day, or the behaviors leading up to a hallucination in a journal of some sort can help you narrow down possible triggers. It is possible that a simple change in their daily routine can make them feel confused or frustrated it can trigger hallucinations.
    7. Distract and redirect  

Additionally, another effective technique is to distract them from the hallucination. You can try to switch their focus from the hallucination to another happy activity that they enjoy doing. You can ask them for their assistance in a chore that can help them feel successful, partake in looking at your favorite family photos, singing, dancing or even coloring.

If they are hearing voices, spark a conversation with them. It is much harder to hear voices if they are engaged in conversation.

Alternatively, if they are seeing something or someone, get to their eye level and have them make eye contact with you. If they are occupied by looking at you, it could make the hallucination less intense.  

    8. Get support to help you cope
Caring for someone with LBD is stressful. It is reassuring to know that you are not alone. Sharing your experiences and getting advice can make things a lot easier for you. Lewy Support Groups are an excellent outlet.  
    9. Talk with the doctor to find out if there are medical causes
You may want to talk with their doctor to find out if any of the medications they are currently taking may cause the hallucinations. This shouldn’t change the way you respond, but it may help reduce or eliminate the behavior.

There are some medical issues that can cause hallucinations that also include dehydration, urinary tract infections, kidney or bladder infections, or pain. If they recently started a new medication, it could have negative side effects of the drug or an interaction with another medication. Be sure to immediately report any changes in their behavior to the doctor.  
    10. Contact the doctor immediately if their safety or yours is at risk

If they are severely distressed by hallucinations and it causes them to hurt themselves or hurt you, contact the doctor immediately to get help. For example, they may be trying to run away from someone who is attacking them--swatting or hitting in an attempt to defend themselves against an attacker.
When speaking to the doctor be sure to be specific about the symptoms, how often they happen, and if they’ve changed in intensity or frequency over time.

Source: Daily Caring

Upcoming Events:

3rd Annual Cruise for a Cure: July 13th in Fort Lauderdale, FL
3rd Annual Let's Beat Lewy Golf Tournament: July 14th in State Center, IA
2018 Mike Madness: July 21st in Birmingham, AL

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