Challenges you face when caring for someone with dementia

[AARPTeri]

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.

Share and learn now.

[SarahLenzLock]

@karent141049

Dear Karen -- it sounds like taking care of your husband is very challenging.  I was talking to a friend who also dealt with her husband having what sounds like similar rages until he finally got diagnosed with dementia.  He actually felt better after hearing a diagnosis of dementia because it explained why he was having such problems processing information and with his memory.  But it is very common for people in early stage dementia to deny the diagnosis and be quite angry when people tell them that is the reason for their problems.  Anger is often a cover for the fear, grief and loss the person is feeling. 

Several practical tips:  First accept that denial is a frequent reaction to hearing the dementia diagnosis.  Second, don't force the issue.  It can lessen the stress to explain that their memory problems are because their brain isn't working as well as it used to rather than insisting their problems are the result of dementia.  Be in the moment with them rather than naming the culprit.  The final recommendation is to recognize that this is super stressful for you and seek the support of others and regularly seek out respite.

Here is respite advice from a recent blog posted by our friends at the Coalition to Transform Advanced Care: 

Have you asked for support from your community? A few hours to attend to errands, get a new hairdo or spend some time in nature or with an old friend could make a big difference in your well being and those around you.

• ARCH National Respite Network and Resource Center – This network features a Respite Locator which can connect you with respite services in your area and provide information on potential funding sources.
• National Association of Area Agencies on Aging (n4a) – The n4a can help you find your local Area Agency on Aging, which can offer a variety of support services that range from caregiver respite to transportation and emergency assistance.
• Family Care Navigator – This guide, created by the Family Caregiver Alliance, breaks down caregiver resources by state, allowing you to find respite services near you.
• National Volunteer Caregiver Network – The NVCN supports “Faith in Action” programs across the U.S. These projects allow volunteers of all faiths to share their time and skills with caregivers in need of respite. Find resource near you using the Network’s Locator Map.

[DonnaW710509]

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!

[bw38618336]

Singing might be very important - but just reading your posts I got the feeling that you are trying to force somone to something they don't, or can't do. There must be hundreds of things which would help with demtia, singing cannot be the only one. - I don't mean any harm by saying that. It's just I got that feeling when reading your post. Of course I might be totally wrong - I apoligize iif I am.

[SarahLenzLock]

@bw38618336  Dear Bengal -  thank you so much for sharing your thoughts.  Singing would only work if the person likes it!  And you are right.  There are very many other things and activities you can help a person with dementia engage in that can help them.  Person and family centered care is important to everyone but absolutely essential when you are caring for someone living with dementia.  You have to know what a person likes and doesn't like, wants or needs if you are going to be help the person with dementia.  Sometimes that isn't easy if they struggle with communicating or can't speak, but behaviors can often clue you in to what they don't like, even if their words fail them.  If they refuse to participate or they seem upset that can be a strong signal they don't like it.  The experience of frustration coming out as anger can be all too familiar to dementia caregivers!  But to your point that there are many things you can do  to improve the well-being of people living with dementia - I will mention a few.  I subscribe to the 5 pillars of brain heatlh to help people with dementia, their caregivers or anyone who wants to help maintain their minds stay sharp.   The 5 pillars are set forth below with examples  and suggestions. 

 

[karent141049]

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.

[JaneCares]

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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

[SarahLenzLock]

@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

[s730678s]

How can wondering be corrected with dementia patients?

[JaneCares]

@s730678s wrote:

How can wandering be corrected with dementia patients?

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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

[goldop72]

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

[SarahLenzLock]

@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!)

[LouiseW43063]

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....