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Posted: Saturday, August 24, 2019 9:32 AM
Joined: 12/4/2011
Posts: 19301

Guilty. Regardless of my best effort I will remain clueless about anything I do not understand. Education is a good thing....for us and for the ones we care for. And there is always soething new to learn.
Posted: Saturday, August 24, 2019 9:41 AM
Joined: 9/8/2017
Posts: 2319

I don’t feel I’m clueless with my father and his care. For other people’s loved one, most likely yes.
Posted: Saturday, August 24, 2019 10:25 AM
Joined: 6/20/2016
Posts: 2468

Interesting choice of title, a little trollish.
Posted: Saturday, August 24, 2019 10:28 AM
Joined: 9/3/2016
Posts: 215

If a non-drug approach will work, then I'm all for it. But my experience with my sweet, precious mother was that it simply would not work. We tried everything, and I mean everything. But she became more and more dangerous to be around. She sent my father to the ER twice. They had been married for 70 years, and were high school sweethearts. For the entire 70 years they had been married it was as if they were one person rather than two. And then in the middle of a nasty delusion my precious mother literally tried to beat my invalid father to death with a walking cane. Had I not walked into the room when I did, she would have succeeded, and I could not stop her by myself and had to scream for help. That was a night I never ever want to live through again, and I truly would wish that no one would. Drugs were the only thing that could help my mother, and I have no regrets about having to resort to them. I know I did everything I possibly could, but sometimes your back is against the wall and for the safety of everyone including the AD patient there is no other choice.
Posted: Saturday, August 24, 2019 10:51 AM
Joined: 9/8/2017
Posts: 2319

Sometimes it works at certain stages, sometimes it doesn’t, sometimes it’s too much, sometimes too little, sometimes it’s the wrong mix or drug, sometimes there are other health concerns, sometimes we need Teepa methods, sometimes they don’t work...all my experience. But, after all I do and have done and given up myself for others...I can only do so much. I’ve let go and accept the life path that will no matter what, end in death. Right now, my father is fine. He is dying like he should be. But he looks good, no rashes, plenty of fluids, always clean, eats very well...he still has a long way to go while I gave up my life, for now.
Posted: Saturday, August 24, 2019 10:55 AM
Joined: 9/8/2017
Posts: 2319

dayn2nite2 wrote:
Interesting choice of title, a little trollish.
I always enjoy your posts

Posted: Saturday, August 24, 2019 12:29 PM
Joined: 12/21/2014
Posts: 564

I wonder how many of the researchers of that paper actually have been full-time, hands-on, underpaid primary/sole caregiver for people with Alzheimer's disease? 

I get that "non-drug approaches should be the first choice" but unless those researchers actually have first-hand experience being a caregiver, they should be required to spend at minimum three months - full days and nights - with an Alzheimer's person (in various stages) and then re-think their research. 

"The authors lay out five non-pharmacologic categories to start with based on their review of the medical evidence. These approaches have been shown to help reduce behavior issues:  

  • Providing education for the caregiver.  I'd like to see those researches get their AD person ready to go visit the doctor, then to the doctor, then endless wait in the waiting room, then 15 minutes with doctor and then get their so-called "education."
  • Enhancing effective communication between the caregiver and the person with dementia.  Yeah, right.  It's obvious those researchers have not spent time with an AD person.
  • Creating meaningful activities for the person with dementia.  Ha!    
  • Simplifying tasks and establishing structured routines.  Show me how to simplify changing soiled undergarments while the AD person is being combative!   However, the "structured routine" IS something that actually did help, for the most part, when I was caring for my mom.  I'll give them that.
  • Ensuring safety and simplifying and enhancing the environment around the patient, whether in the home or the nursing/assisted living setting.  Right.

 And then that DICE model.  Sheez.    

I'm sorry.  Reading that article gave me a major headache.  Where's my Advil?!  Oh wait - non-drug approach - I'm off to go bang my head against the wall.

Jo C.
Posted: Saturday, August 24, 2019 1:56 PM
Joined: 12/9/2011
Posts: 11422

Long story of experience on the "other side of the coin."

 Not at all, "Clueless," just another article regarding items that persons new to dementia and not understanding how to interact with a Loved One who has reached a certain state of being.  Seen this topic many times before; this is not the first article written thus.  Wonder if they worked with aides in NHs regarding all of this and did long term followup; not just a snapshot in time.  How many lived up close and personal caring for someone with severe issues that failed such lesser dynamics.  Academia is academia and sometimes it is very helpful, but we need to not throw the other needs under the bus which sometimes happens.

Wonder how many persons in the study, AND if they did one on one up close and personal interactions and interventions over a significant period of time.  Good information and input, but once again; one size definitely does not fit all.

It was a stunner to me when I found that the huge study regarding antipsychotics and the possibility of increased risk of cardiac issues and even death came from a large study done some time ago in which only the charts of deceased NH persons were used to assert their findings.  Flawed, but has impacted the entire picture.  Don't know if this has been re-done for a large population over a significant period of time in  a valid study and what population was involved.  So many elders with dementia also have significant co-morbidities and that certainly can cloud such outcomes.

Anyway . . . . my MIL and GMIL who both had dementia were lovely, dear ladies who were very easy to care for.   No acting out, no anger issues, just dear loves whose memories were highly compromised but calm and enjoyed their quality of life right until the end of their lives. Caregiving required, but on the easier side of things.

THEN . . . . my mother . . . . oh dear heavens; the poor, poor woman.  She was agitated over the top with over the moon behaviors with persistent aggression, agitation, constant upset, etc., every single day of her highly compromised life. 

When diagnosed, it was because of changes that had become evident and I had to learn fast.  The areas of her brain that were damaged drove her to a dreadful quality of life.  We tried everything and I do mean everything.  All best practices were in place, etc.  Absolutely NO results.

The HMO she had gave over time, authorization to see two different geriatric psychiatrists. Each tried to use an antidepressant; each time those meds actually ratcheted up the dread behaviors even more and psych dc'd them.  Always, UTIs ruled out, home peaceful with routine and structure.  Investigate ALL possibilities, tried to understand, went with the flow with the delusions, and screaming, hollering, accusing, throwing things, lashing out, etc. The stories are legion and so many it would sound  as though I were talking about five different people.

Her quality of life was so poor and oh my; how she suffered.  She was living in the seventh circle of hell and it was untenable for her and it continued over the 24 hour continuum, day after day after day and nights.  Hollering, screaming and swearing, blaming, rocking back and forth, demanding, etc., etc. and more.   Doctors, ER visits, trying and trying and nothing helped.

Finally; heck with the HMO and got her to an excellent Neurologist who routinely works with patients with dementia. He did a thorough exam and re-assessment.  He took so much time and information.

End result?  He prescribed a low dose of Risperdal.  Initially I was not so sure about that antipsychotic.  I did a mountain of research;  spoke to her Internist, Geiatrician, Cardiologist etc.  They felt the risk was a minor one.  I spoke to my out of state brother and we reached our decision to move forward and start the med.  She was living in hell; no quality to her life, only suffering. If it was within our power to alleviate that it would be unconscionable for us not to do so.  It was about the QUALITY of life, not the QUANTITY.  She had to depend upon us to help her as she was unable to help herself.

 So we moved forward with the Risperdal.  Within 24 hours, the difference seemed like nothing short of a miracle.

She was NOT sedated, she was blessed in that she had no side effects whatsoever.  What she did have was a complete falling away from all the prior dread behavioral issues and even the delusions were quelled.  No more agitation.  She was peaceful, she was reasonably content and her very quality of life had been restored.  Perfect?  No; but SO, SO much better.

She was on the med for about five years.  We tried to taper it off under the specialist's supervision only to have the prior symptoms recur and have her go down the rabbit hole into hell once again; so the med was restarted and we finally decided not to try and dc it any longer.  She did fine on it until the end of her life years later.

My step-dad had Alz's. of 20 years duration.  He was a calmer person, but at tmes he had a severe free-floating anxiety not connected to anything in particular and we were careful to seek out the facts of that too.  Finally, he was so undone, the doctor prescribed a low dose of anxiety med as needed and that helped him so much during the rough spots just as it would any of us.  At one point during those twenty years, he had an antidepressant for about three months and did okay with that and got him over another hump that was not responding to lesser measures over time. 

Interestingly, he had persistant dreadful, dreadful abdominal pain that crippled him and led him to being curled up in bed moaning and rocking back and forth very frequently.  Of course we had him to see his Internist; he saw no less than three different GI specialists over time.   He was scoped up and down several times.  Result?  Negative findings from scopes, scans and x-rays. Yet; he suffered; meds did not help and the ER runs were still necessary at times as the pain was so grossly severe.

Well; I had taken him to his dementia specialist, another good Neurologist for a scheduled followup appointment.  He asked me about step-dad's condition.  As far as the dementia, all was well; no big problems.   Then he asked if everything else was okay.  I said it would be if it were not for his GI problems that persisted.  He listened to that history and then said, "This may NOT be a GI problem issue, this pain may be a delusion."  Huh????  Got to be kidding me.

But; I consented to starting a low dose of Seroquel.  Well; by the next day no more GI pain; never, ever again.  Years of dealing with it, and it was all delusional.   That never had entered my mind. Once again, no side effects from the Seroquel, but a very much better quality of life. Tried to taper, but symptoms began to return, so he too remained on the med for years until he passed at age 96 from another cause altogether.

So . . . . one size definitely does not fit all and meds do indeed come into play. Not as a first bat of an eyelash, but as medically necessary when lesser measures do not suffice.

It is all about the quality of life and we hold the keys to that along with the dementia specialists we see.

And I too would like to see the specialists live with a patient such as those whose problems are legion and do not respond to lesser measures as we often discuss here.  Sometmes the movement towards no meds becomes a quality of life issue for those who cannot advocate for themselves.

We see that now in NHs whose data is taken and reviewed by oversight entities to ascertain how many patients are on such meds and how many are removed from them.  Never mind the patient in many circumstances; the NH gets negative dings against themselves and penalties are applied.  We just need smart enough NH nursing staff to be able to discern and make medically appropriate decisions despite the data penalties.

Whew!  Long read; sorry, but it is for me an important topic for our at-risk LOs in that one size does not fit all category.


Posted: Saturday, August 24, 2019 2:49 PM
Joined: 12/4/2011
Posts: 19301

daynnight....trollish? Why?
Posted: Saturday, August 24, 2019 7:19 PM
Joined: 12/21/2014
Posts: 564

Yes!  What Jo said!

Also, remember there is the caregiver's quality of life as well.

My mom also was on respiradone for paranoid delusions early on - it was a horrible horrible period of time - and once that medication was on board, she became much calmer which in term helped me, the caregiver, deal with her much more effectively!

In late stage, mom went through a phase where she wasn't sleeping - I called her doctor after only a few days of that (since it was a dramatic change in behavior) and she was switched from respiradone to quetiapene and that helped her sleep - which meant I could sleep, too.  

Everyone is unique - just like everyone else.  Your mileage may vary!

Posted: Saturday, August 24, 2019 8:09 PM
Joined: 3/8/2018
Posts: 826

From the article:

“The issue and the challenge is that our health care system has not incentivized training in alternatives to drug use, and there is little to no reimbursement for caregiver-based methods.

If Medicare or private insurance paid for home health aides (and salaries were escalated to recruit and properly train qualified individuals), and FMLA leave was PAID and didn’t often run concurrently with banked PTO, and home care expenses could be tax deductible even if the PWD isn’t an IRS dependent, then maybe...MAYBE there would be a sufficient infrastructure in place to support these in-home methods

***steps off soapbox and pours a cocktail***


Posted: Saturday, August 24, 2019 8:09 PM
Joined: 12/4/2011
Posts: 19301

Hey. It was just one of any number of papers discussing the value of non-medical treatment. The concept is certain relatively new to me and one I thought would be well received as useful information.

There are people who dismiss the solutions Teepa Snow has found to be helpful. You do not need to look at her videos on line.Same goes for Naomi Feil and Allen Powers but please do not turn others away from them and the many books that have been helpful. 

We reach out and help each other all of the time with all kinds of suggestions. We encourage non-medical solutions all of the time. So maybe we are cutting edge and the professionals are just getting caught up!

Still interested in an explanation of the "trollish" comment. I frankly di not know what that means but if I am a troll would like to know what it is and why I am one.

Posted: Saturday, August 24, 2019 8:28 PM
Joined: 9/8/2017
Posts: 2319

Well, I guess we can end this thread not having a clue.  Therefore, clueless.
Bob Sacamano
Posted: Saturday, August 24, 2019 8:30 PM
Joined: 1/31/2012
Posts: 499

"Behavior-based solutions may take longer than prescriptions". 

Therein lies the rub. 

It should read: ...will take significantly longer and rinse and repeat.

Posted: Saturday, August 24, 2019 8:57 PM
Joined: 3/8/2018
Posts: 826

“Your mileage may vary”

“Objects in mirror may be closer than they seem”

“Prior results are not indicative of future returns”

Bob Sacamano wrote:

"Behavior-based solutions may take longer than prescriptions". 

Therein lies the rub. 

It should read: ...will take significantly longer and rinse and repeat.

Posted: Saturday, August 24, 2019 10:05 PM
Joined: 5/2/2019
Posts: 326


jfkoc wrote:


Still interested in an explanation of the "trollish" comment. I frankly di not know what that means but if I am a troll would like to know what it is and why I am one.

Since you have not received a satisfactory answer to how your behavior is trollish, I will explain. 

I have not cared for your post. You come across as very judgmental and are prone to defend people just because you like them. Just like I think you judge others unfairly because you do not like them and you actually report them because of your bias.


I find your judgment is off. I do not trust it. Which is fine and not trollish. It happens.


What is trollish is that you know I think this and that is why you start threads because you like to cause strife. Maybe you think you are a warrior?


I am pretty confident to say that your motivation is not to move a dialogue along. I have only seen you start posts to stir the pot so to speak. And that behavior people find trollish.


So now you know. What are you going to do now that you have this knowledge; that is interesting to me.


My personal philosophy is...if  you are going to be a troll, at least be an interesting troll. Lol!

Posted: Sunday, August 25, 2019 6:50 AM
Joined: 9/8/2017
Posts: 2319

The clue I get that someone starts threads to cause strife is when the OP lets it go on and on even if the thread is not helpful.  As Jo said, this topic has been brought up many times. It appears our  opinions will not change based on these studies.  For me, my own personal experience is my study and enough to learn from for who I care for. I’m certain, other LOs are not exactly like my father and can benefit from this study.  But it takes “time and detective work” as another OP brought up. How many are willing??
Bob Sacamano
Posted: Sunday, August 25, 2019 7:58 AM
Joined: 1/31/2012
Posts: 499

I've been reading this board for many years and I've never found anything that jfkoc has posted to be the least bit trollish. She is a valuable member of this community.

I've seen and been a victim of a few trolls here and there. Most get their jollies and are never heard from again. There was an infamous one, a few years back, that turned out to be a total fraud.

dayn2nite2 was referring to the title of the article which could be construed as being flippant.

Posted: Sunday, August 25, 2019 8:14 AM
Joined: 6/20/2016
Posts: 2468

The title of the thread is a word regularly used by a PWD here to insult the caregivers.

So yes, pretty trollish.  

Posted: Sunday, August 25, 2019 9:15 AM
Joined: 7/10/2017
Posts: 655

Victoria2020 wrote:

How does a OP stop a thread- can we lock threads we start?

Lock them? No.  But the OP can delete the whole thread by going to the original post and deleting it.


Posted: Sunday, August 25, 2019 9:53 AM
Joined: 9/7/2017
Posts: 795

I haven’t been around for awhile but some of you might remember my name, I was fairly active for a number of years, and am on my 3rd parent with dementia (one dead, 2 in assisted living, so still have a ways to go). FWIW, we be had terrible experiences w medications but with behavioral approaches too LOL. I’m intimately acquainted with behavioral psych units, however  No silver bullets, that’s for sure. 

The title of the post refers to Michaels earlier post, in which he used the word clueless referring to overuse of drugs. When I saw the title, I immediately knew it was a reference to the previously posted topic. I’m not sure why everyone is so quick to take offense to this. 

Oh wait ... yes I am. Everyone is tired, exhausted, feeling like they aren’t/can’t do enough. Let’s try to cut each other some slack and not assume the worst of others. I try to take what’s useful and leave the rest. This ish is hard enough. 

Jfkoc has been pretty tireless for YEARS in posting daily to support new comers, old timers, the exhausted and the clueless (definitely me a lot of the time). To jump all over her intent is ... shortsighted and potentially deprives new people of her insight and support. The topic of drugs is controversial, and not even agreed on by the medical community. There will be various opinions on the topic. Form your own, allow others theirs, try to be kind. 

King Boo
Posted: Sunday, August 25, 2019 10:08 AM
Joined: 1/9/2012
Posts: 3378

Daysn2nite was not calling jfkoc or any other poster a troll.  She said the title of the article was "trollish" -   which it does have a People magazine sort of tone to it.  Or, in other words, don't let what it says make you feel badly, jfkoc. 
By definition: a troll is a person who starts quarrels or upsets people on the Internet to distract and sow discord by posting inflammatory and digressive, extraneous, or off-topic message.

Presumably, the article made jfkoc feel badly about choices she made as a caregiver, and that is why she posted, and thinking the article might be helpful.  

No need, jfkoc, JoC's post says it all.  A lot fades after our LO is gone, and we all look back wondering if we could have done things differently.

Medication is absolutely necessary for some of our LO's.    While behavioral management techniques can be taught to partially soothe or not inflame a situation (how many of us took a while to learn not to argue?) Some of the structural changes of brain damage or chemical imbalance from the disease cannot be manged that way.

Hence, medication- for some.

While not dementia related, here is an excellent article from a well known actor about how anxiety medication changed his life:

Bob Sacamano
Posted: Sunday, August 25, 2019 10:11 AM
Joined: 1/31/2012
Posts: 499

Interesting how we have different interpretations. My impression of the title of the thread was that it was referring to how the academics were out of touch with how effective/ineffective behavioral methods are when being attempted in real life situations.
ALZConnected Moderator
Posted: Monday, August 26, 2019 12:29 PM
Joined: 8/17/2011
Posts: 331

Dearl ALZConnected Community,

Please accept this post as a reminder that we created ALZConnected so that people with dementia and their caregivers would have a safe place to share concerns and support each other. To this end, we created the ALZConnected Guidelines for Participants with the intent of upholding this mission and purpose. 

1. Encourage Civility

ALZConnected invites and encourages a healthy exchange of opinions. If you disagree with a participant’s post or opinion and wish to challenge it, do so with respect. The real objective of the ALZConnected community is to promote discussion and understanding, not to convince others your opinion is “right”. Derogatory messages will not be tolerated. Name calling, insults, personal attacks and discriminatory comments are not appropriate and will not be tolerated. Posts containing any such content will be reported and will be subject to edits, deletions and/or suspension of accounts privilege. 

2. Be supportive 

ALZConnected is very active and its size is one of its strengths. As you post and read messages, please be aware that electronic messages, often written quickly, are easily misconstrued. Given the challenges of online communication, it is usually helpful to assume a positive intent. Please try to keep in mind that the main purpose of this online community is to provide support and education to those affected by Alzheimer’s disease. Members should offer advice directly to the person who initiates the thread. Please respect the opinions of others and do not monopolize the conversation, and recognize that the diverse opinions add richness to the support provided to members. 

Thank you for respecting these guidelines and the needs of our community. 

Alzheimer's Association | | Contact Us 

Posted: Monday, August 26, 2019 7:39 PM
Joined: 6/13/2016
Posts: 43

Thanks to citydock2000. 


Posted: Tuesday, August 27, 2019 4:30 PM
Joined: 4/5/2013
Posts: 866


Although the title of your post initially confused me, I like the article and find nothing objectionable about it.  The authors clearly state that medication has a role.

My mother is best helped with medication AND careful attention to her environment and caregiver approach.   It's not just one or the other.

Finding an effective combination of medications can take time. The first med that her psychiatrist prescribed did not show any benefit after 6-8 weeks.  When I asked the doctor to stop that first med and try a different drug I was unfairly documented by NH staff as "refusing medications."  After some trial and error my mom ended up on low doses of 3 different medications that help to reduce her anxiety, delusions, and combativeness.  The meds are unquestionably necessary and helpful to her.   

My mom has been stable for over a year without delusions or aggressive behavior.  If her negative behaviors start to ramp up again, I'll insist we first look for changes in her environment and health before agreeing to change her meds.   Rule out UTI, tooth pain, other medical issues.  Then take a fresh look at environment and caregiver interactions.  Don't immediately up her meds without some due diligence!

Small changes in environment and approach can make a significant difference.  Instructing the staff to stop triggering my mom with phrases like "let me help you" and "the doctor wants you to do such-and-such" had an immediate benefit for my mom.  More recently the temp in her room keeps being lowered to 60 degrees and the aides are putting news shows and scary movies on TV.  It seems obvious to me that both of those things could diminish her ability to settle down at night, so - hello - don't bother suggesting an increase in meds while stuff like that is going on.  I'm sure some of the NH staff don't want to hear this. 

Certainly my perspective on these "medication vs caregiver approach" conversations would be different if I were a 24/7 caregiver who was barely hanging on by my fingernails.   There is no magic bullet, no one-size-fits all.   

Jfkoc, you have been a source of comfort and support to me and many others on this forum over many years.  I wish I had the stamina to continue to participate at your level.  Thanks for your continued kindness and patience.