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Challenges you face when caring for someone with dementia

What are some of the greatest challenges you face caring for a loved one with dementia? 

 

Get some great answers from our expert, Sarah Lock.  Sarah Lock is Senior Vice President for Policy and Brain Health in AARP’s Policy, Research and International. She leads policy initiatives on brain health and care for people living with dementia and is Executive Director of the Global Council on Brain Health, an independent collaborative of scientists, doctors and policy experts convened by AARP to provide trusted information on brain health.

 

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AARPTeri
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Thank you, and I would think that would help a lot of people to relax. Somehow, I don't think it would calm him, though. We've always had a rule that I never sing. He sang professionally for a few years and was quite good. I, on the other hand, cannot even carry a tune. He has always found the sound of me trying to sing very offensive. Bad singing, from any source, has always really bothered him.

 

He is getting worse. His disease course is making his doctors reconsider his diagnosis.  They are doing a lot of new testing, thinking maybe mixed frontotemporal dementia, maybe something else. They just aren't sure anymore.  It's possible that he needs very different treatment. It will take time to find out.

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@DonnaW710509 wrote:

I am trying to help out a person in our choir. I am trying to find ways to keep him/her in the choir because singing is so important for the brain. However, I never knew there were so many cognitive steps to following the music in the hymnal with the new songs. Nothing yet has worked out well... Larger print of the lyrics... a special notebook... line markers... all of the other choir members try to assist but is there anything else we have not tried that would keep this individual focused? The socializing and singing is so very important! Thank you!


How wonderful that you all are trying to help!

Perhaps relax your standards just a bit? Let him/her do what they can with the words in large type, and if they wander off the note, so what? Have at least one buddy, preferably two, right close, and wing it? 

 

In addition to the awesome movie, Alive Inside, there's also the delightful Young@Heart about a senior citizens choir. Hilarious and very moving. Here's the trailer: https://youtu.be/CjnfoFg7i7g.

 

Make a joyful noise, amen.

Jane

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@DonnaW710509

Morning Donna!  You are so right.  Singing and music and being social in a choir can be so great for a person living with dementia.  In fact at least two professors have studied the benefits of choirs on the cognitive health of people living with dementia.  Mary Mittleman out of NYU and Julene Johnson from UCSF.  I don't have specific expertise on this question, so I will ask them and get back to you!

 

Have you seen the 2014 documentary "Alive Inside" about the work of Music and Memory?  It's awesome!  Music & Memory is a NY non-profit that promotes music as a way to tap memories and reduce stress.  Sarah

Sarah Lenz Lock, AARP Expert Brain Health
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How can wondering be corrected with dementia patients?

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@s730678s wrote:

How can wandering be corrected with dementia patients?


Wandering is very tricky!  I have 2 ideas: one is to hide their shoes.

 

The other is to buy GPS shoes: they are expensive but you can always find your loved one if they do happen to 'escape.'

 

Any other ideas out there folks?

 

Jane

Newbie

I just today discovered this site, even though I have been a member of AARP for many years.

 

Since April 2015, I have been a caregiver for my wife. She is now 62 and has vascular dementia.

 

I have had very little help; so little help you could call it no-help. She has no living relatives, except me. My two sons and my sisters and brothers live too far away, and they are not iching to reach out and help. They have there own familes, and they are not itching to reach out and help.

 

My wife has not yet reached the stage where she wonders. But I have been very worried about what to do when she starts wondering. We live on almost 3 acres, which is completely fenced, with lockable gates. So it's mostly when we go out to the doctors, out for meals, and shopping that I have had the most concerns. She has wondered off, but I always find her by our car or in it. 

 

JaneCares, thankyou. It is here that I first learned about GPS shoes. I felt a big sigh of relief come over me, almost  a feeling of joy. I had no idea there was such a thing as GPS shoes! For this alone, I am happy I finally came to this AARP site. Thankyou, again

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@s730678s Glad you asked!   Wandering is one of the most common issues to deal with.  Here is a great Alzheimer's and Dementia care video with lots of ideas from our friends at UCLA who worked with AARP to post their caregiver training videos on AARP's CareConnection site.  Dr. Linda Ercoli is featured with several very specific suggestions about how to distract and dissuade a person with dementia from wandering with respect and love.    

 

There are lots of videos available on managing challenging behaviors -- scroll down to the one on wandering. 

https://www.careconnection.aarp.org/en/pages/tips-and-articles/dementia-alzheimers/dementia-videos.h...

 

Sarah (and my colleagues Sanjay Khurana and Sara Kim, and Drs. Zaldy Tan,  David Reuben and Linda Ercoli from UCLA!)

Sarah Lenz Lock, AARP Expert Brain Health
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There are also some very good medical alert necklaces & watches w/GPS with 2 way communication which can locate someone who has wandered.

Also, I had to do a lot of comparisons, but a big help for me in caring for my 94 yr old Mom was the MedMinder locking medication pillbox.  Compare with others & check it out, really helped us.

Also, remember to give the person dignity & respect. They are afraid & losing so much. They know they are losing their memory & a lot of the time they are terrified they are going to go to a nursing home. Need a lot of reassurance....