RSS Feed Print
Stereotypes and Political Inaction about Alzheimer’s/Dementia
Joshbi
Posted: Wednesday, September 11, 2019 5:09 PM
Joined: 7/3/2019
Posts: 14


When I started taking over household duties and gradually became DW’s caregiver after we had moved to an “active” retirement community, she could still exchange pleasantries and stock responses with neighbors as we went on walks or, on occasion, went to a social get-togethers. She was not able to engage in normal give-and-take conversation in her early stages of dementia. When the inevitable “friendly” interrogations began, DW skillfully deferred to me, saying,  “I’ll let him cover that. He’s better at details.” After my spiel, she would start interrogating THEM, peppering them with simple questions about where someone had lived, what they enjoyed doing, etc. She was truly masterful at deflecting. She relied on me to rescue her if she paused (her cue to me to pick up the train of thought), and we were pretty good at it. No one noticed that she never drove, and neighbors probabky assumed we were just rather private.

Flash forward 15 months, and her behavior had become more erratic and disturbing, including delusions, lashing out (at me), getting up to go to work (she was time-traveling), disorientation, etc, but she still was pleasant to neighbors as we passed them on walks with our dog. Her geriatrician mentioned that more and more care would be inevitable, and I knew that I should start letting a few neighbors know about her dementia if something seemed “off” to them or she started wandering late at night. We had started to decline more and more social invitations, and it was time to share with them. Without exception, the handful of neighbors I confided in said, “I never would have known. She seems so healthy and friendly.” Then it dawned on me that they equated Alzheimer’s/dementia with the stereotypical image of someone with a vacant look, completely dependent on help, delirious, and incoherent. 

After talking with a few of these uninitiated folks, they invariably said they didn’t know much about Alzheimer’s except for the ads about fundraising.  I’ve realized that very few had any idea about the various stages of dementia. The most common question was, “Does she still know you?” That seemed to be the “go to” question from neighbors who didn’t know what to say to me—perhaps something they feared. I honestly did not realize there was still such ignorance about this disease.

So here are some key questions: Do you think my experience is unusual, and are the stereotypes about Alzheimer’s still common even among aging Baby Boomers?” Are the upbeat ads showing a cheering public rooting for a cure actually doing a disservice by putting such a positive spin on the future? Hope is great, but how realistic should public service ads be about the ravages of this disease to wake up the public—like the graphic ads showing the results of cancerous infections from tobacco smoking. Maybe it’s just easier to be in denial, especially since the costs (emotional, physical, and financial) a caregiver faces are horrendous. 

Everyone on this board knows the truth—are we all venting in a vacuum? Thanks for any insights, ideas, or strategies to alert political leaders to care! You are all on the front lines, and your advice should matter. (It would be great to hear this subject addressed at the Dem. presidential candidate debate tomorrow evening.) You are the best—you lead by your honesty and your actsif kindness every day!! 

 

 

 

 

 

 


dayn2nite2
Posted: Wednesday, September 11, 2019 6:21 PM
Joined: 6/20/2016
Posts: 1974


Yes, this is a vacuum.  No, nobody knows or cares about dementia until it invades their life, including whether a cure will be found.  We know it won’t.

Politicians don’t care.  Researchers only care about getting more money to throw down the black hole of amyloid plaque studies that go nowhere.

We suffer until our LO dies and then much of the time another LO presents with dementia and it’s time to get on the hamster wheel again.  Or the stress gives us some disease, sometimes both.


Rescue mom
Posted: Wednesday, September 11, 2019 6:23 PM
Joined: 10/12/2018
Posts: 1016


I’ve had a long day.. but I’m pretty sure I get your 1000x. Most people think an Alzheimer’s patient is drooling in a wheelchair and does not “know you” or anybody else. They see no in-between total capability and total ...vegetable? Comatose? Out of it?

It matters when it goes to expectations—what people think the PWD can do ornsaymor reapondmto— and support for the caregiver. Because my DH “looked good”and could smile and nod (that works for about 90% of casual conversation) nobody could think there was anything wrong with him—including his family and PCP, who had to be strongly persuaded to ok the tests and scans that showed much of DH brain was gone.

Don’t get me started, it’s been a long 24 hours.


Rescue mom
Posted: Wednesday, September 11, 2019 6:27 PM
Joined: 10/12/2018
Posts: 1016


And yes, as far as politics goes,  for sure, yes we are venting in a vacuum.

 Somebody here recently said we have to let them (politicians) know about this. I worked in government. They absolutely know. They just don’t care, it has not affected enough of them yet—and may never, given their care plans and connections.


Rescue mom
Posted: Wednesday, September 11, 2019 6:30 PM
Joined: 10/12/2018
Posts: 1016


Ugly truthful ads might help, but I doubt it. What’s much worse is those stories about “finding joy” in dementia, which never deal with mid or late stages of dementia. It’s deceptive, and beyond cruel.
Doityourselfer
Posted: Wednesday, September 11, 2019 6:44 PM
Joined: 9/5/2017
Posts: 357


I was one of those people who had no idea that Alzheimer's disease has stages until my husband was diagnosed 3 years ago at the age of 57.  A couple friends' elderly parents had Alzheimers and were in nursing  homes and I didn't think much about it back then, just thought it was a disease that some elderly people get.
jfkoc
Posted: Wednesday, September 11, 2019 6:45 PM
Joined: 12/4/2011
Posts: 17318


Are we in a vacuum? Sort of but if so who has created the vacuum?

I believe that AD as well as the other dementias  is often kept too private.  People know about Parkinson's, diabetes, cancer, heart disease etc because they know people who have those diseases. Conversations about those illnesses comes easily.

 Everyday day someone asks should I tell others that my loved one has AD? In some instances this information is best withheld for a while but overall why keep it a secret? Why not acclimate others to what the disease looks like when it becomes relevant? And why not educate others that there is a beginning of the disease as well as an end? Why not take the opportunity?

The caveat would be to never do or say anything that would hurt our loved one.

Josh, IMHO you are spot on!


Ed1937
Posted: Wednesday, September 11, 2019 7:43 PM
Joined: 4/2/2018
Posts: 1527


I don't remember what the dollar amount was, but congress did appropriate money for alz. Probably not much more than pennies in the grand scheme of things. Politicians now think they did their job. Don't bother them again for a while. They have other things on their minds.

The general population on alz/dementia? In a nutshell -

Dementia = forgetfulness

Alz = death

No reason to know any more than that.


zauberflote
Posted: Wednesday, September 11, 2019 8:10 PM
Joined: 10/24/2018
Posts: 408


I am a 67-yr-old Boomer, and am "fortunate" ( not a good choice of words) that most people in my closer circles are either right here in the trenches or recently have been.  Those who are not are very good listeners. So, "fortunate", you know. 

But I knew NOTHING about dementia before Mom. MIL had the resources to stay at her home with excellent care (and three daughters plus me, hubby, and other three hubbies as needed) until her last breath. She had serious forgetfulness. She might have declined further had she been moved from pillar to post as Mom has. Those multiple daughters, all retired (unlike DH and me), really make life easier. Not to mention resources. 

So I thought I knew a whole lot after she passed. HA! Mom'sMC shows the entire range of dementia-driven behaviors and conditions. Within, of course, the confines of what behavior issues MC can allow. My reading on here has added many more layersof knowledge to my personal experience. 


LadyTexan
Posted: Wednesday, September 11, 2019 10:29 PM
Joined: 12/21/2018
Posts: 206


I had no idea about Alz until it happened to us. I'm ten times smarter about it now than I was when we started this journey and I am still BAFFLED by it. Its chaotic, unpredictable and exhausting.

I feel so spent, I don't have sufficient energy left to educate the people who may be remotely interested in this disease.


Michael Ellenbogen
Posted: Thursday, September 12, 2019 7:35 AM
Joined: 11/30/2011
Posts: 2500


There is no doubt that the messaging they show is incorrect. Much of it by places like AA. So much of it leads to stigma for all of us. So the main question I have for all of you is what will you all do about it
Last Dance
Posted: Thursday, September 12, 2019 7:44 AM
Joined: 5/2/2013
Posts: 273


 Linda started to show signs of memory loss in 2006. At that time little did I know what I was in for. I hide it from family & friends for 6 years covering up her mistakes and other things that she would do. In 2012 I finally told my family, her family and close friends what was going on with her, they basically all said the same thing we thought that things weren’t quite right but we didn’t know what the problem was.  Why I kept it a secret I’m not sure, but all caregivers do it. I think it has something to do with the fact that we want to protect them as much as possible and not embarrass them but now that I look back on it, I realize it would’ve been better off to just let everybody know right up front. The sad part about this is that your family and friends desert you and stay away they don’t know what to say or how to handle things. Part of it is like Army-vet 60 said it’s too painful seeing your love one as they were. They can’t get past remembering the fun things you did that no longer are possible. They replace you with new friends and never really come back.

 The sad part of all of this is that I have learned so much more about being a caregiver since she passed away then when I was taking care of her. I don’t know if it’s because I have more time to read sit and think or if there is just so much more on this board. 

 

 


jfkoc
Posted: Thursday, September 12, 2019 9:00 AM
Joined: 12/4/2011
Posts: 17318


"So the main question I have for all of you is what will you all do about it"

Most of us here know that Michael does a lot. Way more that most us are going to do. My husband has died which frees up my time to be a more active advocate but I always had the time to write a letter but was lax in doing that. 

I do it now  believing that it counts....some do not agree but what if everyone who read here wrote one letter that contained just one fact that would hit home with a legislator. 

What if...think what Nancy Brinker did in the name of her sister, Susan Koman. Nancy was one person....how many are we?


Michael Ellenbogen
Posted: Thursday, September 12, 2019 9:22 AM
Joined: 11/30/2011
Posts: 2500


You could start with this if you can afford it. You can go to your government officials with the knowledge gained on what to do and say.  I will definitely be there for the whole time.

 

http://www.cvent.com/events/2019-national-alzheimer-s-summit/event-summary-38562980b54a459fb22756f4790ef34b.aspx?emci=b8cd0641-25cf-e911-bcd0-281878391efb&emdi=7c961ac6-52cf-e911-bcd0-281878391efb&ceid=824978

 


Michael Ellenbogen
Posted: Thursday, September 12, 2019 9:49 AM
Joined: 11/30/2011
Posts: 2500


Here is on easy step.

 

https://action.usagainstalzheimers.org/onlineactions/O09SKW1hNU2i0nndc96DMA2?ms=fb

 

 


Crushed
Posted: Thursday, September 12, 2019 10:48 AM
Joined: 2/2/2014
Posts: 4675


I worked in a psychiatric hospital as a law student. DW was a physician.  I published extensively on carbon monoxide and worked on traumatic brain injury.  My mother had and died of vascular dementia.  So I SHOULD have been as alert as any lay person could be.  Was I?  NO .  In the early stages all I knew was that my driven, autonomous professional wife all of a sudden wanted to be with me a lot more than before. She was 58, just post menopausal and i reveled in her affection and attention. Life was goooood.  My daughters picked it up, not me.  She was uninterested in the Mother of the bride role for DD#2.  etc. 

When in Sept 2010 she could not add a column of numbers I almost died right there and then.  I knew exactly what it meant. Even so I grasped at straws for two years like anyone would. No one wants to believe it has happened to them .

 


jfkoc
Posted: Thursday, September 12, 2019 11:02 AM
Joined: 12/4/2011
Posts: 17318


Thanks Michael...done
Doityourselfer
Posted: Thursday, September 12, 2019 11:19 AM
Joined: 9/5/2017
Posts: 357


Thanks, Michael  I submitted it as well.

I am one caregiver who doesn't hide the fact that my husband has AD.  I don't feel that it's an embarrassment at all.  It's a disease.


GemsWinner12
Posted: Thursday, September 12, 2019 6:00 PM
Joined: 7/17/2017
Posts: 378


Yes, it's true that unless you are directly affected by Alzheimer's/Dementia, you really have no idea what it's about.  When my Mom was diagnosed, I actually had co-workers and friends tell me that I was really lucky, since I was a nurse and my Mom had money for care (they presumed that I knew everything about Alzheimer's and that just because others were hands-on caregivers, I had it made in the shade). 

 I had no desire to take over her entire life and finances, managing caregivers and figuring out where she had stashed her money so that I could funnel it correctly to pay for her care.  I felt so awfully lonely and burdened; this message board was one of my only places I could go to to ask questions of those who understood.  Nobody wants to hear about the reality of Alzheimer's; what it's really like when your own Mother drops her pants and relieves herself in your backyard.  What it's like when she used to celebrate your birthday for the whole month, and then she can't even use a crayon at the activity table, much less know it's your birthday.  Every visit was a heartbreak, seriously. The reality of dealing with this disease should be promoted, instead of the images and advertisements of cheering and delight.  

In the Memory Care house my Mom lived, there was only one other family group besides myself that would visit their loved one on a regular basis; there were eight residents, and I only met a few other family members over the course of the entire three years.  Five of the eight residents there had no one come and visit.  Every three or four months, a resident would pass away and be replaced with another, and I didn't visit as often as I should have, but I know I went more often than most, because it's just so depressing and uncomfortable.  Again, the reality of Alzheimer's should be promoted, instead of the false gaiety and joy in the images put forth by the organization.  A more serious / grown up image of the organization would be more appropriate in my opinion.  


Rescue mom
Posted: Thursday, September 12, 2019 7:08 PM
Joined: 10/12/2018
Posts: 1016


I just don’t get the stigma thing, although I know it exists. It’s like any other deadly or debilitating disease. It happens. It should not be shameful. Exposure should help with that. 

 I told any and everyone I thought would be interested or care—otherwise, his obviously odd behavior led some to wonder if he had a drinking or drug problem. (And lord knows what else that people did not tell me). 

Better to get the truth out than to have wild dramatic speculation. DH was somewhat high profile in the community, so he normally saw a lot of people.

And still, many couldn’t believe he could have Alzheimer’s and walk around and look good (I made him bathe, helped him dress, etc.). He could smile when seeing someone. He’d say very little, but I learned most people were ok with that. No real conversation always needed. 

As others have mentioned, many if not most friends disappeared. I chalk that up to the fact that we no longer can do what we used to, and they still can. They’re carrying on normal life, we’re not. Even with sick people, they usually have the expectation or hope of progress or improvement. Not with Alzheimer’s.

I believe the shut-outs aren’t because of any stigma, it’s more that other people are living their happy dream retirement, and Alzheimer’s is not part of that for most people, still. The numbers are big, and will grow, but it’s still not most people.

 


Keep It 100
Posted: Monday, September 30, 2019 2:14 PM
Joined: 2/26/2017
Posts: 452


I was one of the speakers at a recent Alz Association fundraisers in Los Angeles. Reason to Hope raised nearly a quarter million dollars that night. It was a beautiful event, but my personal experience is that the Alz Association does not sugarcoat this disease. The ads on TV cannot begin to capture the breadth and depth and all of the nuance of this disease. It's a hard thing to tackle, and I know the opinion of many is that it is a "miss." I totally get that. But this video is from the fundraiser that night, and it was definitely no fluff piece.  I wanted to share this. Personally I find it hard to watch, but I think it was quite effective that evening. 

Many of us here have decided to ignore the "stigma" and speak out to the world about it, in any way we can, big or small, and are making a difference. I was told, point blank, by my husband's neuro psych that we should "keep his dx a secret." So naturally I was fired up to do just the opposite. Coming out and working directly with my AA chapter opened many doors for me to advocate and promote awareness of all stages of the disease, and especially those early stages where the patient can still appear normal and healthy; as a speaker at a fundraiser like this, as an Ambassador in DC, as the one (Ray) who throws the ceremonial first pitch in Dodger Stadium (thousands got to witness a very healthy looking athletic man with mid-stage alz throw a pitch!), and many other venues and opportunities.  

The AA actively supports research of a diverse nature. One of  many successes is this - We have funded many of the most exciting advances in Alzheimer's research, including the development of Pittsburgh Compound B (PiB), the first radiotracer capable of showing beta-amyloid in the living brain during a positron emission tomography (PET) scan. Identifying beta-amyloid in the living brain makes it possible for researchers to determine if an experimental drug successfully decreases this hallmark Alzheimer’s protein and provides invaluable information about disease progression.  I know there are folks here with a low opinion of what the AA does, but I am not one of them. I have supported this organization in every way I can and though I took this year off from asking friends for $$ in honor of Ray (we have raised close to $45k to date for the AA) I will get back at it again next year, as I think it will be the last I can fly him out to Ca for our local walk out there (where the majority of his supporters are, from his years of work out there.)


LizzieC
Posted: Monday, September 30, 2019 3:25 PM
Joined: 3/28/2018
Posts: 230


Keep it 100,

Do you know if I can share/post video on Facebook or is there permission's problem with AA?


Keep It 100
Posted: Monday, September 30, 2019 3:40 PM
Joined: 2/26/2017
Posts: 452


LizzieC I am not aware of any issue. It was broadcast at the event, and was readily made available to me.
Marta
Posted: Monday, September 30, 2019 3:41 PM
Joined: 6/3/2013
Posts: 711


Thank you, 100, for this video and all you do.
Rennbird
Posted: Monday, September 30, 2019 6:23 PM
Joined: 2/23/2017
Posts: 50


The truth of your posting is so profound that I feel rage pouring out of every pour of my body.
jb crick
Posted: Monday, September 30, 2019 8:42 PM
Joined: 8/2/2016
Posts: 522


Keep it 100

I couldn't finish watching this video. It is so powerful, so explicit. It brought me to tears thinking there will be many more thousands of folks who will have to endure watching their loved one or lifelong spouse slowly die before their eyes as many of us here have had to do.

I absolutely hate it for those people who will necessarily follow in our footsteps. I can speak to people about Alz and explain/educate people about it, but I just can't watch the pain that others feel as a result of this disease in the video. Just too close to my own heart.


kestrel1
Posted: Monday, September 30, 2019 9:19 PM
Joined: 8/14/2018
Posts: 16


Keep it 100 - Thank you for posting the video.  It was very well done and very moving.  I wish it were more widely broadcast and that there were more segments like that. I applaud you for your work in trying to raise money and for trying to change the narrative about what having dementia means. The current narrative is one that needs to change. Every time I see dementia portrayed by a perfectly coiffed white haired lady smiling at the camera with her perfectly coiffed middle aged daughter I cringe. That is not the face of dementia in our family. Yet it is an image that persists, even within aa materials.  

I checked the website of our local chapter of aa today.  There were three pictures on the home page: each of a woman with white hair. Two of them with someone who looked like a middle aged daughter. They were sweet pictures but dementia is not sweet, at least my husband's type of  dementia is not sweet.  It is relentless and vicious. Dementia takes people who are living life and who have a lot of life to live (no matter their chronological age) and destroys it bit by bit.  The video on the link you provided does a good job of describing that - particularly the women who talked about their mothers biting or smacking them. Not all dementia behaviors consist of pleasant confusion. It isn't just forgetting names. I don't necessarily think that someone with dementia needs to be portrayed as mean or aggressive, because that certainly is not accurate in all cases, but I don't think the image of a sweetly smiling, perfectly coiffed white haired lady is entirely accurate either. Thank you again for posting and for your work. 


Keep It 100
Posted: Tuesday, October 1, 2019 5:48 PM
Joined: 2/26/2017
Posts: 452


Kestral1 it is very difficult, I believe, to easily portray and sum up this awful disease! So many of us have been there...our LO can appear so normal and healthy, all while having deficits that are totally debilitating but not evident to the casual observer. The late stage stereotypes are only correct for a portion of the journey, but what about all those years they do look pretty and handsome and fit and athletic, but they’re literally suffering ongoing and progressive brain damage? That is what frustrates us so much, getting people to understand. I don’t have any answers. I am sorry your situation is of the viscous sort. Terribly sorry...

I was informed by AA that the producer of the video was happy for the attention and interest, then he indicated he wants to use it for wider broadcast and would rather not have it on sm yet. I had not yet posted it to my network so I have suspended that until later notice, and temporarily removed from here. I don’t know to what venue it will go out, but I think it should be seen by as many people as possible. It’s very powerful. Hopefully all of our interest fires him up to push it further out there.


Rescue mom
Posted: Tuesday, October 1, 2019 6:15 PM
Joined: 10/12/2018
Posts: 1016


Kestrel, thank you so much. I wrote a long TY but vanished. But thank you.
Mike&BrendaTX
Posted: Friday, October 4, 2019 2:16 PM
Joined: 7/10/2017
Posts: 618


Last Dance wrote:

I hid it from family & friends for 6 years covering up her mistakes and other things that she would do. In 2012 I finally told my family, her family and close friends what was going on with her, they basically all said the same thing we thought that things weren’t quite right but we didn’t know what the problem was.  Why I kept it a secret I’m not sure, but all caregivers do it. I think it has something to do with the fact that we want to protect them as much as possible and not embarrass them but now that I look back on it, I realize it would’ve been better off to just let everybody know right up front.

 

 I think a big part of keeping it a secret is what I call a "dignity issue."  Nobody wants others to know they're losing it.  I consider myself my wife's protector.  If I can save her from unnecessary anguish or embarrassment, I will do so.  I doubled down on this after I saw what happened when I did tell people - they abandonded her, and that hurt her as a person who finds joy in being with others.  For me, I have no regrets about shielding her.


Mike