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Introductions: Are you caring for someone with dementia?

Posted by Scott, Volunteer Mentor @IndianaScott, Aug 30, 2016

My mother-in-law (MIL) had what was finally determined to be frontal temporal dementia. She had the disease from her 60s until she passed away at 86. My wife was especially involved in her mom's caregiving due to some serious denial in other family members and a GP who refused to diagnose, even when significant deficits were obvious (mistaking the UPS deliveryman for her husband and not knowing the difference between roads and sidewalks). The most unfortunate result of this, to me, was the lost time when my MIL and her family could have been having meaningful and important discussions about significant matters of importance to her and them.

In my wife's years of fighting her brain cancer, she, too, exhibited many of the aspects of mental degradation and physical losses one would affiliate with a dementia patient.

As an aside, for several years I worked for the national Alzheimer's Association raising money for their research programs nationwide.

I wish everyone struggling with this disease and their caregivers and families strength and peace.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 17, 2017
In reply to @kdawn32 "@sallysue I am dealing with this issue with my Mom who has vascular dementia. For example..." + (show)
@kdawn32

@sallysue I am dealing with this issue with my Mom who has vascular dementia. For example last week she fell and tore skin on her arm (big wide but not deep gash) she felt little to no pain she said from it. She had a small cut on her knee and a little scuffed skin. She was screaming about it so much we thought it was broke as did the doctor. However she went from don't touch to tolerating a sheet, to moving it, then weight bearing in about an hour. X Rayed it and nothing broken. I watched it and a bruise didn't even develop. It's a weird thing with my Mom. Things that you and I would find a light temporary discomfort from she believes is killing her. Other time things that I think should be causing her pain don't. I often try distracting her on to something she really loves. Often (not always) she forgets about the pain. If she doesn't forget in a short time after the distraction I give her pain meds. That is pretty rare in her case. I try to get to the level of pain which initially is almost impossible, but after she has been distracted for a little bit I'll ask if she still hurts (this can start the issue back up in a bad way sometimes). If she does we talk about how bad is it? Unbearable, ache, sharp, dull.....etc Some times I have to give an example of what sharp or dull feels like (not always easy). From her answers I can usually make decisions from there. I would encourage you to go with your sister to the DR. or Nurse practitioner and discuss your issues. I also highly recomend talking about medications, vitamins, etc with them at the visit. It sounds like it may be time for someone to be there when your sister takes her meds. AKA watches her do it. Some time they think "I need to take my pills" so in that thought going through it goes to "I took my pills" even though they didn't.
Hang in there @sallysue. It's a long, long, long, challenging road but you're not alone. There are a few amazing moments. Again I really encourage a visit to a medical practitioner at this point with BOTH of you or her primary caregiver if that is not you.

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Hi @sallysue and @kdawn32,
I was intrigued by your question regarding pain perception in people with dementia. I have seen this same inconsistent reaction to pain in my uncle. I set out to research for information about it. The research literature revealed a couple articles of note:
- Altered pain processing in patients with cognitive impairment https://www.sciencedaily.com/releases/2015/05/150529131509.htm
- Pain and temperature processing in dementia: a clinical and neuroanatomical analysis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4620514/

What caught my attention is that my Google search returned several results for online forums where exactly this topic was discussed among other caregivers who witnessed the same phenomenon. It is obviously a topic that requires further study.

PS: Sallysue - here is how you can start a new discussion on a new topic in the Caregivers group (for future reference):
1. Go to the Caregivers homepage https://connect.mayoclinic.org/group/caregivers/
2. Click START A DISCUSSION.
3. Write a title.
4. Write your message. (You can even @mention other members you would like to have join the discussion.)
5. CREATE DISCUSSION.

REPLY
sallysue | @sallysue | Aug 17, 2017
In reply to @kdawn32 "@sallysue I am dealing with this issue with my Mom who has vascular dementia. For example..." + (show)
@kdawn32

@sallysue I am dealing with this issue with my Mom who has vascular dementia. For example last week she fell and tore skin on her arm (big wide but not deep gash) she felt little to no pain she said from it. She had a small cut on her knee and a little scuffed skin. She was screaming about it so much we thought it was broke as did the doctor. However she went from don't touch to tolerating a sheet, to moving it, then weight bearing in about an hour. X Rayed it and nothing broken. I watched it and a bruise didn't even develop. It's a weird thing with my Mom. Things that you and I would find a light temporary discomfort from she believes is killing her. Other time things that I think should be causing her pain don't. I often try distracting her on to something she really loves. Often (not always) she forgets about the pain. If she doesn't forget in a short time after the distraction I give her pain meds. That is pretty rare in her case. I try to get to the level of pain which initially is almost impossible, but after she has been distracted for a little bit I'll ask if she still hurts (this can start the issue back up in a bad way sometimes). If she does we talk about how bad is it? Unbearable, ache, sharp, dull.....etc Some times I have to give an example of what sharp or dull feels like (not always easy). From her answers I can usually make decisions from there. I would encourage you to go with your sister to the DR. or Nurse practitioner and discuss your issues. I also highly recomend talking about medications, vitamins, etc with them at the visit. It sounds like it may be time for someone to be there when your sister takes her meds. AKA watches her do it. Some time they think "I need to take my pills" so in that thought going through it goes to "I took my pills" even though they didn't.
Hang in there @sallysue. It's a long, long, long, challenging road but you're not alone. There are a few amazing moments. Again I really encourage a visit to a medical practitioner at this point with BOTH of you or her primary caregiver if that is not you.

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Thank you SO much. The articles are so helpful. Thank you too for the info on how to start a discussion. You are very very helpful!

REPLY
Kdawn | @kdawn32 | Aug 17, 2017
In reply to @kdawn32 "@sallysue I am dealing with this issue with my Mom who has vascular dementia. For example..." + (show)
@kdawn32

@sallysue I am dealing with this issue with my Mom who has vascular dementia. For example last week she fell and tore skin on her arm (big wide but not deep gash) she felt little to no pain she said from it. She had a small cut on her knee and a little scuffed skin. She was screaming about it so much we thought it was broke as did the doctor. However she went from don't touch to tolerating a sheet, to moving it, then weight bearing in about an hour. X Rayed it and nothing broken. I watched it and a bruise didn't even develop. It's a weird thing with my Mom. Things that you and I would find a light temporary discomfort from she believes is killing her. Other time things that I think should be causing her pain don't. I often try distracting her on to something she really loves. Often (not always) she forgets about the pain. If she doesn't forget in a short time after the distraction I give her pain meds. That is pretty rare in her case. I try to get to the level of pain which initially is almost impossible, but after she has been distracted for a little bit I'll ask if she still hurts (this can start the issue back up in a bad way sometimes). If she does we talk about how bad is it? Unbearable, ache, sharp, dull.....etc Some times I have to give an example of what sharp or dull feels like (not always easy). From her answers I can usually make decisions from there. I would encourage you to go with your sister to the DR. or Nurse practitioner and discuss your issues. I also highly recomend talking about medications, vitamins, etc with them at the visit. It sounds like it may be time for someone to be there when your sister takes her meds. AKA watches her do it. Some time they think "I need to take my pills" so in that thought going through it goes to "I took my pills" even though they didn't.
Hang in there @sallysue. It's a long, long, long, challenging road but you're not alone. There are a few amazing moments. Again I really encourage a visit to a medical practitioner at this point with BOTH of you or her primary caregiver if that is not you.

Jump to this post

Thank you Colleen. I look forward to reading these articles. She also has issues with temperature,

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 18, 2017
In reply to @kdawn32 "@sallysue I am dealing with this issue with my Mom who has vascular dementia. For example..." + (show)
@kdawn32

@sallysue I am dealing with this issue with my Mom who has vascular dementia. For example last week she fell and tore skin on her arm (big wide but not deep gash) she felt little to no pain she said from it. She had a small cut on her knee and a little scuffed skin. She was screaming about it so much we thought it was broke as did the doctor. However she went from don't touch to tolerating a sheet, to moving it, then weight bearing in about an hour. X Rayed it and nothing broken. I watched it and a bruise didn't even develop. It's a weird thing with my Mom. Things that you and I would find a light temporary discomfort from she believes is killing her. Other time things that I think should be causing her pain don't. I often try distracting her on to something she really loves. Often (not always) she forgets about the pain. If she doesn't forget in a short time after the distraction I give her pain meds. That is pretty rare in her case. I try to get to the level of pain which initially is almost impossible, but after she has been distracted for a little bit I'll ask if she still hurts (this can start the issue back up in a bad way sometimes). If she does we talk about how bad is it? Unbearable, ache, sharp, dull.....etc Some times I have to give an example of what sharp or dull feels like (not always easy). From her answers I can usually make decisions from there. I would encourage you to go with your sister to the DR. or Nurse practitioner and discuss your issues. I also highly recomend talking about medications, vitamins, etc with them at the visit. It sounds like it may be time for someone to be there when your sister takes her meds. AKA watches her do it. Some time they think "I need to take my pills" so in that thought going through it goes to "I took my pills" even though they didn't.
Hang in there @sallysue. It's a long, long, long, challenging road but you're not alone. There are a few amazing moments. Again I really encourage a visit to a medical practitioner at this point with BOTH of you or her primary caregiver if that is not you.

Jump to this post

Hi @IndianaScott, @sallysue and @kdawn32,
Because my search returned so few evidence-based research studies and so many caregiver-reported cases, we took the question to a couple of Mayo Clinic neurology experts who specialize in dementia. Drs Nilufer Taner and James Watson wrote:
+++++
"Increased sensitivity or tolerance to pain are not symptoms typically associated with neurodegenerative dementias. Indeed, these dementias (e.g. Alzheimer’s disease, dementia with Lewy bodies etc.) do not involve the peripheral nervous system nor the brain regions involved in pain perception.

That said, people with dementia, particularly those in advanced stages can suffer from a variety of problems that can lead to pain (such as bed sores, musculoskeletal pain due to reduced mobility etc.). Furthermore, their behavioral responses to certain situations can become enhanced or distorted which can conceivably influence their responses to adverse sensations or situations such as pain.

Having said all this, to the best of my knowledge there are no concerted studies investigating pain perception in dementia patients (ideally in the mild stages), so it is possible that we, as physicians and researchers, do not yet know all aspects of a potential pain-dementia relationship."

"I agree with what my colleague said and add that people with dementia can sometimes perseverate [repeat or prolong an action, thought, or utterance after the stimulus that prompted it has ceased] on things as well which can influence this sense of those around them that there are periods of more pain issues. The pain issue may not have changed, the patient with dementia’s focus on the pain issue may have changed. Pain medications are challenging in their usage in people with dementia as the medications can further cloud cognition or slow cognitive processing. Distraction and things that keep a patient actively engaged in other things is often useful in these situations."

++++
Hope this helps.
Colleen

REPLY
Mentor
Scott, Volunteer Mentor | @IndianaScott | Aug 18, 2017
In reply to @kdawn32 "@sallysue I am dealing with this issue with my Mom who has vascular dementia. For example..." + (show)
@kdawn32

@sallysue I am dealing with this issue with my Mom who has vascular dementia. For example last week she fell and tore skin on her arm (big wide but not deep gash) she felt little to no pain she said from it. She had a small cut on her knee and a little scuffed skin. She was screaming about it so much we thought it was broke as did the doctor. However she went from don't touch to tolerating a sheet, to moving it, then weight bearing in about an hour. X Rayed it and nothing broken. I watched it and a bruise didn't even develop. It's a weird thing with my Mom. Things that you and I would find a light temporary discomfort from she believes is killing her. Other time things that I think should be causing her pain don't. I often try distracting her on to something she really loves. Often (not always) she forgets about the pain. If she doesn't forget in a short time after the distraction I give her pain meds. That is pretty rare in her case. I try to get to the level of pain which initially is almost impossible, but after she has been distracted for a little bit I'll ask if she still hurts (this can start the issue back up in a bad way sometimes). If she does we talk about how bad is it? Unbearable, ache, sharp, dull.....etc Some times I have to give an example of what sharp or dull feels like (not always easy). From her answers I can usually make decisions from there. I would encourage you to go with your sister to the DR. or Nurse practitioner and discuss your issues. I also highly recomend talking about medications, vitamins, etc with them at the visit. It sounds like it may be time for someone to be there when your sister takes her meds. AKA watches her do it. Some time they think "I need to take my pills" so in that thought going through it goes to "I took my pills" even though they didn't.
Hang in there @sallysue. It's a long, long, long, challenging road but you're not alone. There are a few amazing moments. Again I really encourage a visit to a medical practitioner at this point with BOTH of you or her primary caregiver if that is not you.

Jump to this post

Thank you @colleenyoung Wonderful to get this information. All in all, a very tough issue for patients, caregivers, and even the medical professionals. Always good to know we are not alone when we are flummoxed by something in caregiving!

Peace

REPLY
erice | @erice | Aug 18, 2017

My wife Phoebe has Alzheimer's and is in a care facility. She still remembers me and our daughters, and has many more smiles than tears. I can almost tell what she is thinking by her facial expressions, she can give me a real frown when I do something wrong. She and I were great fishing partners, and is one of the things I miss most!

REPLY
1 reply
ggramk | @ggramk | Aug 18, 2017

Be happy she smiles more than frowns! My Mother was that way too and as she was always a loving, giving person, more concerned about others than herself, she was intent on not making us feel guilty about her need to be in the nursing home. My DH still at home and I am just beginning to get some respite help on a regular basis. I know he will not like it but I am so near burnout it scares me.

REPLY
2 replies
Mentor
Scott, Volunteer Mentor | @IndianaScott | Aug 18, 2017
In reply to @erice "My wife Phoebe has Alzheimer's and is in a care facility. She still remembers me and..." + (show)
@erice

My wife Phoebe has Alzheimer's and is in a care facility. She still remembers me and our daughters, and has many more smiles than tears. I can almost tell what she is thinking by her facial expressions, she can give me a real frown when I do something wrong. She and I were great fishing partners, and is one of the things I miss most!

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Hello @erice Nice to e-meet you here, but sorry to hear of your wife's journey. It is wonderful she remembers her loved ones! Amazing what a smile can do for a fellow human being. So much pain, fear, and discomfort flees in a beautiful smile! My wife's last genuine smile is still seared in my memory and is a fabulous light in my life!

Sorry about losing your fishing partner. This danged disease takes so much....

Strength, Courage, & Peace

REPLY
Mentor
Scott, Volunteer Mentor | @IndianaScott | Aug 18, 2017
In reply to @ggramk "Be happy she smiles more than frowns! My Mother was that way too and as she..." + (show)
@ggramk

Be happy she smiles more than frowns! My Mother was that way too and as she was always a loving, giving person, more concerned about others than herself, she was intent on not making us feel guilty about her need to be in the nursing home. My DH still at home and I am just beginning to get some respite help on a regular basis. I know he will not like it but I am so near burnout it scares me.

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Hello @ggramk Congratulations on getting the respite care! Wonderful for you and over time I am guessing these helpers will be accepted as part and parcel of the regular routine. Change is always hard, but as I say of any disruption brought on by change... 'a temporary inconvenience for a permanent improvement.'

Sending you some extra strength to combat those burnout feelings, which can be crushing to caregivers especially!

Strength, Courage, and Peace

REPLY
ggramk | @ggramk | Aug 18, 2017
In reply to @ggramk "Be happy she smiles more than frowns! My Mother was that way too and as she..." + (show)
@ggramk

Be happy she smiles more than frowns! My Mother was that way too and as she was always a loving, giving person, more concerned about others than herself, she was intent on not making us feel guilty about her need to be in the nursing home. My DH still at home and I am just beginning to get some respite help on a regular basis. I know he will not like it but I am so near burnout it scares me.

Jump to this post

Thank you Scott. My DH was first diagnosed 6 years ago. Of late I have noticed a pretty steep decline. And unless you have walked these difficult miles yourself, you can not fully understand the agony of watching someone you love disappear before your eyes.

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