LBD Video Series: Fluctuations & Hallucinations

Jun 22 12:00pm | Nick Rethemeier | @nrethemeier | Comments (14)

Over the course of several weeks, The Hub will launch a series of videos focused on Lewy Body Dementia (LBD). You will hear from experts at Mayo Clinic as well as collaborating partners presenting on LBD and ways to manage symptoms and improve quality of life for the person with dementia and their caregivers.

This week's video features Tanis Ferman, PhD, a neuropsychologist from Mayo Clinic Jacksonville discussing the background and causes of fluctuations and hallucinations, as well as tips for caregivers to engage with the person experiencing hallucinations constructively and compassionately.

For previous videos on Lewy Body Dementia, visit the LBD Video Library and stay tuned to the Hub for a new video each week.

Where do you actually get to this video?

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I don’t see this video

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@carolannp

I don’t see this video

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Me either!

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@jgw02 @carolannp @amesmassage The video is now up. Thank you for the catch!

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@nrethemeier

@jgw02 @carolannp @amesmassage The video is now up. Thank you for the catch!

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Great – Also make sure to check the link to the LLBD video library above!!!!

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Excellent video!! Valuable information. Thank you.

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I'm waiting to get my husband diagnosed for LBD & this video confirms all his symptoms. Great resource!

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@seamaiden @ava2brian @jgw02 @carolannp @amesmassage I invite you connect with others living with LBD and caregivers caring for someone with dementia in these groups:

– Diagnosed with mild dementia so what should I expect in future? https://connect.mayoclinic.org/discussion/diagnosed-with-mild-dementia-so-what-should-i-expect-in-future-sarah2/
– Caregivers: Dementia https://connect.mayoclinic.org/group/caregivers-dementia/

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Such a great video. I am passing it on to family who won't accept the diagnosis. I have seen every symptom.

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@judithannek

Such a great video. I am passing it on to family who won't accept the diagnosis. I have seen every symptom.

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Judith, that's great that this video might help communication with your family and their acceptance of your diagnosis. I'd like to bring @larryh123 into this discussion too.

Judith, it can be really hard for those close to you to acknowledge that change will happen. In what ways do they not accept it? What helps them understand?

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@colleenyoung

Judith, that's great that this video might help communication with your family and their acceptance of your diagnosis. I'd like to bring @larryh123 into this discussion too.

Judith, it can be really hard for those close to you to acknowledge that change will happen. In what ways do they not accept it? What helps them understand?

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My husband has a son who is an anesthesiologist. He lives 1000 miles away and sees his father for a few days once a year. During those visits it's Showtime, so he has never seen the fluctuations. He rejects the diagnosis because "the only test which confirms LBD is autopsy.". Because he is a doctor, others in the family accept his word, even though a geriatric psychiatrist, a psychology group, and a neurologist have made the LBD diagnosis and the medications being prescribed for my husband are based on the LBD diagnosis. I am the 24/7 caregiver and the children don't believe what I tell them

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@judithannek

My husband has a son who is an anesthesiologist. He lives 1000 miles away and sees his father for a few days once a year. During those visits it's Showtime, so he has never seen the fluctuations. He rejects the diagnosis because "the only test which confirms LBD is autopsy.". Because he is a doctor, others in the family accept his word, even though a geriatric psychiatrist, a psychology group, and a neurologist have made the LBD diagnosis and the medications being prescribed for my husband are based on the LBD diagnosis. I am the 24/7 caregiver and the children don't believe what I tell them

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Hello:
As a LBD patient I can understand some of what you are describing. You as the caregiver are there everyday and notice the changes – maybe subtle and others more in your face. Some seem to show up out of nowhere and others gradually do their thing. You know the whole scoop.

How long ago was your husband diagnosed?

If I may ask – is your husband aware of his condition? Is he able to communicate to his son about it? I ask because sometimes when a person refuses to accept a diagnosis or other changes in life – if the person that is afflicted acknowledges it then they might start to accept it.

Are there other children that are dealing with this situation?

I go through the fluctuations and like your son in law but my oldest son doesnt see that. Since I told him a few years back about the diagnosis I could tell he didn’t want to believe it. I see him a few times a week along with my grandsons. That always brings out the best in me. So when I see him I’m happy and a little more social and with it. As you mentioned – you are there 24/7. You know about the swings, and the highs and lows. He only sees the good days.
When my son sees that, it builds on his non acceptance.
Now -over time – he does acknowledge some changes. Your challenge is that his son doesnt see him often enough to experience the other side of things.

Do you or the family have chats on a platform like zoom? That might be a way for them to see the not so good times.

Do you think a video of when your husband is feeling the nasty effects from Lewy would help?

You have an extra challenge with your son in law being in the medical field. He is correct – unfortunately – in his statement about a diagnosis can only be 100% known at autopsy.
Has he ever acknowledged that there might be an issue but just not LBD?

You mentioned several docs across different disciplines working together to support the diagnosis. I’m sure your husband and yourself have endured neuropsych testing.

What other tests have they used to determine the LBD diagnosis?

Do you feel it might be possible to have his son talk with his docs to hear what they have to say and then he can ask questions? Maybe coming straight from another medical professional it would help?

This is a disease that not only affects the person with it – it is a whole family thing.

Sometimes family counseling is in order.
Have you considered that possibility?

Please keep posting and you will find many caring and compassionate people here that have it in their hearts to help.

You are not alone – use Mayo Connect as one outlet to share concerns and yes – joys!!!

Peace
Larry H.

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