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 asking for input 
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Joined: Wed Feb 10, 2010 1:26 pm
Posts: 56
Location: NC
Post asking for input
Hey all,

After moving my husband to an ALF, my daughter and I decided it would be beneficial to present an inservice on LBD to the staff. Myself, being an RN felt that would be easy enough. My daughter, being a high school senior decided she would like to take it farther and educate all of our local dementia care units. Education = Power :-)

What I would like from my fellow LBD caregivers (you are the experts)...

Please tell me through your experiences, what are the most important things you would like professional caregivers to know about LBD.

Also, how you believe LBD needs to be treated differently than other types of dementias?

I am planning my first presentation to be held on Sept 16th.
Any and all ideas are greatly appreciated and needed.

Thanks
Sandilee


Thu Aug 26, 2010 8:51 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3377
Location: Vermont
Post Re: asking for input
What a great idea Sandi! I'm assuming you're talking about the caregivers, not medical folks?????
A couple of things I can think of are:
1. Please have a lot of patience.
2. Expect rapid changes from ability to disability, and back again, regarding physical and mental aspects of the patient.
3. Understand that the personality you are caring for can be totally different from the person who was.
4. Don't take anger and agitation personally.
I'm sure others will chime in with their own issues. Good luck with the project. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Aug 26, 2010 9:05 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: asking for input
These people are not malingering when they can do something one moment and cannot the next. The hallmark of this disease is that it is rapid cycling.


Thu Aug 26, 2010 9:10 pm
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Joined: Wed Feb 10, 2010 1:26 pm
Posts: 56
Location: NC
Post Re: asking for input
Thanks!!
Yes Lynn, I'm looking to teach the aides who are the primary caregivers in ALFs, nursing homes, and dementia units. So these are the people left to care for our loved ones with very little understanding of the disease process and minimal medical training.

Sandilee


Thu Aug 26, 2010 9:24 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: asking for input
Have you read the Whitworths' booklet and/or consulted with them? They've been trying to make some money doing in-service trainings at various ALFs

For me, the key differences between LBD and other dementias are two-fold: fluctuating cognition and parkinsonism.


Fri Aug 27, 2010 12:53 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: asking for input
I agree with Nan: Fluctuations in both mobility and cognition. I might also add that intolerance of certain medications is a hallmark of LBD and to monitor them closely after any changes in medication.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Aug 27, 2010 12:59 am
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Joined: Wed Feb 10, 2010 1:26 pm
Posts: 56
Location: NC
Post Re: asking for input
I have read the Whitworth's book. It is wonderful. I have not directly contacted them. But being a part of health care myself and wanting my husbands facility educated as soon as possible, I knew a free inservice was going to be much more appealing to the facility.
Unfortunately, the health care world doesn't like to spend money :-(


Fri Aug 27, 2010 10:27 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: asking for input
A reminder that the patient may not be able to communicate to them, but that there's a good chance that the patient hears and understands them - be careful what they say around patients, speak to patients not around them, and try to find simple, useful tasks for the patient to perform, if interested.

And I would echo Pat. With this disease, some medications that are used in other dementia can cause harm in an LBD patient. I would say that this is a really important point and can't be highlighted enough.

Have you looked at the "Professionals" tab (from the LBDA home page)? There are handouts, cards, publications and reference materials there and many are free. Mom's memory specialist was looking for cards for LBD patients and hadn't looked at the site for some time. I sent him to this location for many resources that (without this LBDA tab) he would have had to create himself. There is, especially, a quick reference sheet that could be put in the chart of every LBD patient.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Fri Aug 27, 2010 10:49 am
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Joined: Fri Jul 16, 2010 1:11 pm
Posts: 16
Location: Oakville, Ontario
Post Re: asking for input
I think this is a great idea! I would like to do something like this at the long term care facility where my Dad is. They had never even heard of LBD till we came along. I got the book and read it and loaned it to the head nurse and administrator. I have to say they have been really great about learning all they can and I take the time to talk to each one of the caregivers when I am there and they are all really great (ok maybe one or two of them aren't so great but most of them are). Maybe I will ask my daughter to help me too. It would be a really positive experience !

_________________
Allison - caregiver to Donald (father) age 76 diagnosed with LBD July 09.


Fri Aug 27, 2010 1:18 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3377
Location: Vermont
Post Re: asking for input
The new director at my dad's ALF has worked with quite a few LBD patients at other facilities. She has lots more practical knowledge about it than my dad's drs. and for that I am grateful. I hope she'll do a training with her staff, as few of them had ever heard of it. Many of his caregivers at first treated my dad like he was just a grumpy old man until I explained the horrible metamorphosis his body and mind had recently gone through. Then they were lots more patient with him after I described his downward spiral.
Now when he cries about missing my mom they cry with him!

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Aug 27, 2010 1:27 pm
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Joined: Wed Feb 10, 2010 1:26 pm
Posts: 56
Location: NC
Post Re: asking for input
"Many of his caregivers at first treated my dad like he was just a grumpy old man until I explained the horrible metamorphosis his body and mind had recently gone through. Then they were lots more patient with him after I described his downward spiral.
Now when he cries about missing my mom they cry with him!"


LTCVT- That's exactly what I'm looking for...How did you put into words the horrible metamorphisis they go through? How did you make the caregivers understand that these people are more than just grumpy old men (and women), but are people who have real fears and are in much more control than one may realize unless the time is taken to really talk to them???????

There is one caregiver in our facility, who seems to think that my husband is manipulating me to come see him. When in reality, he only needs me to stop in for 5-10 min to reassure him that things are ok and he is safe. She seems to marginalize all of his fears and treats him like the other ALZ patients as if he has NO awareness of his surroundings. Sorry to vent here... I just had a very frustrating meeting, and my hopes are to educate people so that family members can avoid all of this in the future!


Fri Aug 27, 2010 3:15 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: asking for input
Sandi - One day I went in to see my dad and he was asleep so I went down to the dining room in the ALF. I saw a bunch of his caregivers hanging out on a break or something and there were 3 of them who didn't seem terribly good with him. I sat down and started talking with them about how much he had changed, in such a short time, and how it broke my heart to see this energetic, fun-loving, joke-filled man be reduced to someone totally dependent on others, and agitated and angry all the time. I told them he'd been driving, living independently, and arranging get togethers with his widowed friends just months before moving to the ALF. I told them about how his personality had changed from being the most generous, thoughtful man, to someone totally self-centered and dependent. I cried, and they got it. They were never snippy to me and SO much better with him after that. Now they give me big hugs when I visit, we chat about their families, I bring them gifts, and life is better.
They just needed to hear his story, it's as simple as that I think. And, the rumor mill being what it is, I think they passed the story on to their coworkers. I never saw anyone with an attitude after that. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Aug 27, 2010 3:24 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: asking for input
That's a good point, Lynn! And it doesn't hurt to show appreciation for what they do, as well. When Derek was in the dementia unit I used to bring cookies, etc. but since most of the CNAs there were morbidly obese, I decided that was not a good idea. I know how it is, under stress, to reach for the nearest sweet treat to make you feel better. But I did try to show in other ways that I appreciated them and their efforts. It's a very overworked and underpaid position.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Aug 27, 2010 4:02 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: asking for input
I think 2 important factors in caring for a person with LBD is:

1: Acceptance, meaning accept that they don't control the disease, it controls them so they can't be held accountable for thier actions

2. Rountine: I found this to be so very important, if we stuck to the routine things stayed calmer

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Irene Selak


Sat Aug 28, 2010 7:58 am
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
Post Re: asking for input
1.Don't ask "why" if they do or say somethings that didn't make sense, at least here, there is no answer. 2.Don't try to reason with them, they don't get it.

3. They have difficulty making a decision, try not to give them more than 2 choices, none if possible.

I think this is a wonderful idea.

_________________
Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sat Aug 28, 2010 9:16 am
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