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He can't follow a train of thought for more than a few seconds and is constantly getting up and down and moving around. I can see that he is unhappy and frustrated at being unable to communicate effectively.
This is the person you are caring for? Tell me a bit about when he was first diagnosed and how it went for you both at that time? Did he have early diagnosis and what stage is he now?
I ask the above because my brother was incidentally diagnosed when he had a car accident. They found on exam that he had been having Lewy's symptoms and he was diagnosed pretty much on these symptoms alone as having probable early Lewy's dementia. We was having very REAL hallucinations, often at night, some almost seizure like hallucinations with stress, often involving swallow problems and choking, some foot tapping, loss of sense of smell and taste. Certain patterns such as hotel carpet would bring on hallucinations. Balance was dreadful.
Because of his very early diagnosis we were able to work together to get rid of his last home and get him into a good ALF. He made me Trustee and POA. I took care of all bills and etc. We did all the paperwork with his attorney.
We often sat and talked about how he saw the world. He was wonderful at knowing what he had, why his brain was going so wonky and how it manifested, and he delighted in telling me how he saw the world. He wasn't glad to know what was coming, but he was glad to know why the world was now such an odd place.
I will tell you that ANY anxiety made him so much worse instantly and I think it has a lot of effect on Lewy's.
At some point and dependent on your loved one's stage, you may not be able to do things at home, he may need placement, and you may have to understand medication and in facility care is the way to go.
My brother died only about a year and one half from his diagnosis. He wasn't worse in that time. He wanted so much to "go" before it could catch him and make him anxious, taking all his control, so I am very grateful for that, much as I miss that man daily.
It's not really possible to have a "meaningful conversation " with anyone suffering from any of the dementias. As you've said yourself, "He can't follow a train of thought for more than a few seconds ".....so by virtue of that fact, meaningful conversations are a thing of the past, unfortunately. Dementia destroys the brain a little at a time. Work with what he has to work with and don't expect the impossible. Keep dh as anxiety free as possible (which is the only goal with dementia) by not conveying your frustration onto him. I'm sure he's frustrated himself by his communication deficits.....who wouldn't be?
Learn all you can about his condition so you're best equipped to understand what's going on in his world and can meet him where he's at.
Here are some links you may find useful:
Our Family's Experience/Journal With Lewy Body Dementia :
My aunt had Lewy Body and it is a fearsome, terrible disease. She was not doing well and we knew the end was near so we asked my mom if she wanted to go see her 'before' (we live far away and travel can be expensive) or 'after' to pay her respects. She chose to see my aunt while she was still with us.
When we got there my cousins were there and we all sat around my aunt's bed and chatted. My mom would talk to her about the 'good times' when they were young and all the things they did etc. My aunt would smile every so often so we knew this made her happy just having us there.
I am sorry you feel at a loss for words - it is difficult. Suggestions might include having someone else to visit with you to have dialogue, get some audible books and play them so you can listen together, find videos etc. that he might like and watch together. Just being there is comforting to the person. Take care!
Listen and follow his lead ( if safe). Having " meaningful conversation" is most likely not realistic due to the disease . Saying short things like " I love you" may be meaningful, but don't expect it to be necessarily responded. Overall, one best rule of thumb is to be in the " communication" space where the patient presents ( as long as patient and you are safe).
Remember that if the patient is talking,rambling about something that sounds non sensical past or present ( and is safe), you do not have to respond or engage in the patient " conversation"; simply listen. This often creates much less anxiety for the patient and you ; they are mentally where they are and trying to correct or engage too much often is futile and anxiety producing for everyone. Each case varies.
Be sure to have help so that you can take self care breaks. It is extremely debilitating to be 24/7 immersed in this type of care.
My mother has Lewy Body Dementia. Her symptoms fluctuate on a daily or sometimes hourly basis.
Some days I simply hold Mom's hand. Other days, I put on the daily Mass from Ireland on TV and it calms her. Right now she is in between an Up Walker Lite but not yet wheelchair bound, thank the Lord.
This beast of a disease you have to try to stay ahead of--home care, occupational therapist, speech therapist, physical therapist, one morning a week respite care, special fitted shoes, etc.
Our conversations on some days are right on the mark, other days it's never never land. Another realm almost, a staring off.
A structured routine and knowing what to expect at certain times of the day. Last week I had to re-book a dental exam/cleaning because there was an hour delay in between. There's no way mother can sit still for that long. This disease will teach you to speak up. Her feet move constantly.
Now I have to brush her teeth for her because her dexterity skills and judgment are off. It's like caring for a child.
Mom is physically out of gas at 3PM on any given day. Everything we do--appointments are done in the morning.
Remember--their brain is on the decline. The Lewy Body proteins put holes in the brain so not everything connects. Depending on the stage at hand, with the right medication prescribed the person can function but don't expect them to return to their old self. I try to control some of the symptoms.
I could be having a serious conversation with mother and ask her is there anything she wants to talk about and she might respond, "we need more strawberry preserves". That's where they are at.
When mother finishes supper which is usually around 3PM, she gets up and paces. She is fidgety. Some evenings' she looks pensive, but not all the time, on occasion. I will ask her, "are you in any pain" and she will respond "no". They know something is not right.
The Lord is kind and merciful. I moved mother to a 1st floor two Summers ago. Everything is modified--the previous tenant had a wife who was wheelchair bound. This is not an assisted living. The good news is that at 4PM daily, the sun shines so beautifully that I still check to see if I left every light on in the apartment. The sun calms her. It's a good way to get her settled at the end of the day, I give her meds, she puts on her pajamas and I work remotely evenings'.
What works for me may or may not work for your situation. The book "A Caregiver's Guide to Lewy Body Dementia" by Helen Buell Whitworth and James Whitworth is worth reading. There is also a revised edition.
I hope I was of some help. You will have to make changes along with the decline of the disease. Just simply be. They may not always give you eye contact because one of the first symptoms I noticed was my mother's "peripheral vision" was gone.
Basically, she would walk behind a car pulling out of a supermarket parking lot and not see or hear it. She had cataract surgery and hearing aids we just finished paying off, so I knew that wasn't the problem.
The peripheral vision would be similar if you put on scuba diving goggles you just see a small area in front of you, nothing on the sides, which I why I took the car keys off of mother at the onslaught of the disease, especially when one is on a blood thinner.
Trinity College in Dublin, Ireland is doing a lot of research on this and also other parts of the UK. There is not a lot of info on this out there. Most people haven't even heard of it. There is a book "My Name is Louie" by an Irishman, he is able to travel and on the speaking circuit. I try to be like a sponge to learn anything new out there on this.
Don't get discouraged, just look at what they have left. Today, 4th of July, we are going to put on our red, white and blue outfits, watch the Boston Pops Concerts on TV tonight and have some strawberry shortcake!
How do you communicate with someone with Lewy body dementia?
Tips for successful communication: Engage the person in one-on-one conversation in a quiet space that has minimal distractions. Speak slowly and clearly. Maintain eye contact. ... Give the person plenty of time to respond so he or she can think about what to say. Be patient and offer reassurance. ... Ask one question at a time.
and
How does Lewy body affect communication?
It is well-known that dementia with Lewy bodies (DLB) affects language and cognition. In conversations, persons with DLB experience difficulties in turn-taking, topic initiation, entering conversations and keeping up with the conversational tempo. 12/2022
Contact a Lewy Body Association and ask them for guidance. Communication / conversation will not be easy. The more you understand how the person with Lewy Body reacts due to brain cognition and physical changes, the better equipped you will be communicating.
I might try music ... art work in view / on the walls, a mobile [ a decorative structure that is suspended so as to turnfreely in the air: brightly colored mobiles rotated from the ceiling]. I believe relying on actual conversation will be difficult.
Get a dry erase board. Draw a 'happy face' and see what his/her reaction is. This may help you determine how much they cognitively understand.
P.S. a bit more (I lose formatting if I edit initial response).
from the internet:
How do you calm a restless dementia patient?
Try gentle touching, soothing music, reading, or walks. Reduce noise, clutter, or the number of people in the room. Try to distract the person with a favorite snack, object, or activity. Limit the amount of caffeine the person drinks and eats. - - - - - - - - - Read: https://autumnleaves.com/helpful-tips-and-best-practices-for-lewy-body-dementia/ - - - - - - - - - Read: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/symptoms/restlessness
- - - - - - -
When you talk to this person, do not ask questions that require a "yes" or "no" response.
Make statements, i.e., ... I'm fixing your lunch now. It'll be ready in 15 minutes. ... It's a nice sunny day out. ... We're going to (do) xxx today.
This way, you are taking off stress(or)(s) that the person may feel 'trying' to respond when they simply cannot ... and they may want to and/or be able to know that they want to and cannot.
You already know he can't 'follow a train of. thought ... " - so you realize his limitations.
Try to keep him - and yourself - as calm as possible. Rely on SMILING and perhaps gently comforting TOUCH more and cease expecting / having expectations of more.
ReluctantCarer: I am so sorry that your DH (Dear Husband) is ill with Lewy Body Dementia. He doesn't possess the capacity for normal trains of thought so perhaps you can try other senses, e.g. hearing/music.
You don’t mention your relationship with this person, but I’ll assume he’s family. What does “meaningful conversation” mean to you? If you are seeking to discuss physics or mathematics, you should reconsider your expectations. But, if you want to tell this person how much they mean to you, that you’re there for them and love them, then you should adapt your approach.
First, consider the environment of your visit. Are you in a calm place, where he feels comfortable? Also, consider the time of day. People with Lewy Body can have remarkably different abilities at different times. Attempt to find out his best times. Try taking his lead in the conversation. If you arrive planning to talk about sports, and he clearly isn’t engaged, try asking him some questions to see what is on his mind. It might not make sense to you, but it does to him. Read his mood, and respond to his feelings, if you can’t to his words. Maybe the conversation doesn’t seem meaningful, but the moment is. Hold his hand if he seems to need comfort, take him for a stroll if he’s restless. Try to focus your visit more on an experience than a conversation. Bring music or snacks he likes, or put on a musical or movie that’s a favorite. If it’s hard for him to carry conversation, try talking about things you remember that you’ve shared. And sometimes, maybe, there is no need for conversation at all. Just being there is meaningful.
For more help in situations like this, there are more resources and information available from St. John's and our dementia resource specialist Mimi DeVinney #AskMimi at: www.dementia.stjohnsliving.org
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
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APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
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APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
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If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
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This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
Tell me a bit about when he was first diagnosed and how it went for you both at that time?
Did he have early diagnosis and what stage is he now?
I ask the above because my brother was incidentally diagnosed when he had a car accident. They found on exam that he had been having Lewy's symptoms and he was diagnosed pretty much on these symptoms alone as having probable early Lewy's dementia. We was having very REAL hallucinations, often at night, some almost seizure like hallucinations with stress, often involving swallow problems and choking, some foot tapping, loss of sense of smell and taste. Certain patterns such as hotel carpet would bring on hallucinations. Balance was dreadful.
Because of his very early diagnosis we were able to work together to get rid of his last home and get him into a good ALF. He made me Trustee and POA. I took care of all bills and etc. We did all the paperwork with his attorney.
We often sat and talked about how he saw the world. He was wonderful at knowing what he had, why his brain was going so wonky and how it manifested, and he delighted in telling me how he saw the world. He wasn't glad to know what was coming, but he was glad to know why the world was now such an odd place.
I will tell you that ANY anxiety made him so much worse instantly and I think it has a lot of effect on Lewy's.
At some point and dependent on your loved one's stage, you may not be able to do things at home, he may need placement, and you may have to understand medication and in facility care is the way to go.
My brother died only about a year and one half from his diagnosis. He wasn't worse in that time. He wanted so much to "go" before it could catch him and make him anxious, taking all his control, so I am very grateful for that, much as I miss that man daily.
I wish you the best.
Learn all you can about his condition so you're best equipped to understand what's going on in his world and can meet him where he's at.
Here are some links you may find useful:
Our Family's Experience/Journal With Lewy Body Dementia :
https://www.lewybodyjournal.org/
Chat Forum for LBD:
https://www.smartpatients.com/communities/lewy-body-dementia
Alz.org thread on LBD:
https://forum.alzheimers.org.uk/threads/lewy-body-dementia.128413/
Best of luck.
When we got there my cousins were there and we all sat around my aunt's bed and chatted. My mom would talk to her about the 'good times' when they were young and all the things they did etc. My aunt would smile every so often so we knew this made her happy just having us there.
I am sorry you feel at a loss for words - it is difficult. Suggestions might include having someone else to visit with you to have dialogue, get some audible books and play them so you can listen together, find videos etc. that he might like and watch together. Just being there is comforting to the person. Take care!
You might need to take him on daily walks to hopefully minimize sundowning. You might have to employ Therapeutic Lying.
But, meaningful conversations are pretty much over.
The only good news is that sometimes, Dementia patients have moments of lucidity. Take advantage of those, if you're able.
" I love you" may be meaningful, but don't expect it to be necessarily responded.
Overall, one best rule of thumb is to be in the " communication" space where the patient presents ( as long as patient and you are safe).
Remember that if the patient is talking,rambling about something that sounds non sensical past or present ( and is safe), you do not have to respond or engage in the patient " conversation"; simply listen. This often creates much less anxiety for the patient and you ; they are mentally where they are and trying to correct or engage too much often is futile and anxiety producing for everyone. Each case varies.
Be sure to have help so that you can take self care breaks. It is extremely debilitating to be 24/7 immersed in this type of care.
My mother has Lewy Body Dementia. Her symptoms fluctuate on a daily or sometimes hourly basis.
Some days I simply hold Mom's hand. Other days, I put on the daily Mass from Ireland on TV and it calms her. Right now she is in between an Up Walker Lite but not yet wheelchair bound, thank the Lord.
This beast of a disease you have to try to stay ahead of--home care, occupational therapist, speech therapist, physical therapist, one morning a week respite care, special fitted shoes, etc.
Our conversations on some days are right on the mark, other days it's never never land. Another realm almost, a staring off.
A structured routine and knowing what to expect at certain times of the day. Last week I had to re-book a dental exam/cleaning because there was an hour delay in between. There's no way mother can sit still for that long. This disease will teach you to speak up. Her feet move constantly.
Now I have to brush her teeth for her because her dexterity skills and judgment are off. It's like caring for a child.
Mom is physically out of gas at 3PM on any given day. Everything we do--appointments are done in the morning.
Remember--their brain is on the decline. The Lewy Body proteins put holes in the brain so not everything connects. Depending on the stage at hand, with the right medication prescribed the person can function but don't expect them to return to their old self. I try to control some of the symptoms.
I could be having a serious conversation with mother and ask her is there anything she wants to talk about and she might respond, "we need more strawberry preserves". That's where they are at.
When mother finishes supper which is usually around 3PM, she gets up and paces. She is fidgety. Some evenings' she looks pensive, but not all the time, on occasion. I will ask her, "are you in any pain" and she will respond "no". They know something is not right.
The Lord is kind and merciful. I moved mother to a 1st floor two Summers ago. Everything is modified--the previous tenant had a wife who was wheelchair bound. This is not an assisted living. The good news is that at 4PM daily, the sun shines so beautifully that I still check to see if I left every light on in the apartment. The sun calms her. It's a good way to get her settled at the end of the day, I give her meds, she puts on her pajamas and I work remotely evenings'.
What works for me may or may not work for your situation. The book "A Caregiver's Guide to Lewy Body Dementia" by Helen Buell Whitworth and James Whitworth is worth reading. There is also a revised edition.
I hope I was of some help. You will have to make changes along with the decline of the disease. Just simply be. They may not always give you eye contact because one of the first symptoms I noticed was my mother's "peripheral vision" was gone.
Basically, she would walk behind a car pulling out of a supermarket parking lot and not see or hear it. She had cataract surgery and hearing aids we just finished paying off, so I knew that wasn't the problem.
The peripheral vision would be similar if you put on scuba diving goggles you just see a small area in front of you, nothing on the sides, which I why I took the car keys off of mother at the onslaught of the disease, especially when one is on a blood thinner.
Trinity College in Dublin, Ireland is doing a lot of research on this and also other parts of the UK. There is not a lot of info on this out there. Most people haven't even heard of it. There is a book "My Name is Louie" by an Irishman, he is able to travel and on the speaking circuit. I try to be like a sponge to learn anything new out there on this.
Don't get discouraged, just look at what they have left. Today, 4th of July, we are going to put on our red, white and blue outfits, watch the Boston Pops Concerts on TV tonight and have some strawberry shortcake!
How do you communicate with someone with Lewy body dementia?
Tips for successful communication:
Engage the person in one-on-one conversation in a quiet space that has minimal distractions.
Speak slowly and clearly.
Maintain eye contact. ...
Give the person plenty of time to respond so he or she can think about what to say.
Be patient and offer reassurance. ...
Ask one question at a time.
and
How does Lewy body affect communication?
It is well-known that dementia with Lewy bodies (DLB) affects language and cognition. In conversations, persons with DLB experience difficulties in turn-taking, topic initiation, entering conversations and keeping up with the conversational tempo. 12/2022
Contact a Lewy Body Association and ask them for guidance.
Communication / conversation will not be easy.
The more you understand how the person with Lewy Body reacts due to brain cognition and physical changes, the better equipped you will be communicating.
I might try music ... art work in view / on the walls, a mobile [ a decorative structure that is suspended so as to turnfreely in the air: brightly colored mobiles rotated from the ceiling]. I believe relying on actual conversation will be difficult.
Get a dry erase board. Draw a 'happy face' and see what his/her reaction is. This may help you determine how much they cognitively understand.
Gena / Touch Matters
from the internet:
How do you calm a restless dementia patient?
Try gentle touching, soothing music, reading, or walks. Reduce noise, clutter, or the number of people in the room. Try to distract the person with a favorite snack, object, or activity. Limit the amount of caffeine the person drinks and eats.
- - - - - - - - -
Read:
https://autumnleaves.com/helpful-tips-and-best-practices-for-lewy-body-dementia/
- - - - - - - - -
Read:
https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/symptoms/restlessness
- - - - - - -
When you talk to this person, do not ask questions that require a "yes" or "no" response.
Make statements, i.e.,
... I'm fixing your lunch now. It'll be ready in 15 minutes.
... It's a nice sunny day out.
... We're going to (do) xxx today.
This way, you are taking off stress(or)(s) that the person may feel 'trying' to respond when they simply cannot ... and they may want to and/or be able to know that they want to and cannot.
You already know he can't 'follow a train of. thought ... " - so you realize his limitations.
Try to keep him - and yourself - as calm as possible. Rely on SMILING and perhaps gently comforting TOUCH more and cease expecting / having expectations of more.
Gena / Touch Matters
First, consider the environment of your visit. Are you in a calm place, where he feels comfortable? Also, consider the time of day. People with Lewy Body can have remarkably different abilities at different times. Attempt to find out his best times. Try taking his lead in the conversation. If you arrive planning to talk about sports, and he clearly isn’t engaged, try asking him some questions to see what is on his mind. It might not make sense to you, but it does to him. Read his mood, and respond to his feelings, if you can’t to his words. Maybe the conversation doesn’t seem meaningful, but the moment is. Hold his hand if he seems to need comfort, take him for a stroll if he’s restless. Try to focus your visit more on an experience than a conversation. Bring music or snacks he likes, or put on a musical or movie that’s a favorite. If it’s hard for him to carry conversation, try talking about things you remember that you’ve shared. And sometimes, maybe, there is no need for conversation at all. Just being there is meaningful.
For more help in situations like this, there are more resources and information available from St. John's and our dementia resource specialist Mimi DeVinney #AskMimi at: www.dementia.stjohnsliving.org
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