It's a shame the public is so uneducated about dementia

Ed1937

It was a short while after my wife was diagnosed, that word got around pretty quickly. We went to a restaurant for lunch, and we knew all the waitresses there. When we went in, our waitress came to give us menus. My wife said "Hi Judy". A little later when I went to pay the bill, the waitress came over to me and said "She knew my name!" As if when you are diagnosed, you automatically don't know anyone anymore.

From another thread: " My intent is not to horrify anyone, but rather to gently remind the average Joe that progressing Alzheimer’s is more than just pop pop misplacing his keys, or putting the mail in the freezer. At this point, nothing is off limits and I tell it like it is. " And that's how it should be, Beachfan. I've been thinking about talking to small groups of people to try to educate them, at least a little, on what it means to have dementia affecting your lives (both the caregiver and the afflicted). And if I do this, I'll be telling it like it is. But I'm unsure how to go about getting people interested. Maybe offer door prizes?? Would that even have an impact? I'm open to suggestions.

JC5

Ed I agree. People need to be educated about dementia . I needed to be educated ! I was at first hesitant to tell friends about DH diagnosis and then when I did it was like he was already gone! So then I started saying he has this but you probably wouldn’t notice much. Or I would get oh would he know me? And i’d  Be like yes and have to explain myself. So I’ve decided not to say anything unless they ask.

Josie in Podunk

Maybe we should start with the doctors themselves.  Seems a goodly number could use a “from the trenches” education.

Otherwise maybe church, civic, club groups?

There’s def a need for good basic information for people regarding dementia.

When my late husband died I found myself peer counseling women in my own age group (mid-50’s at that time) about what to expect regarding probate, credit cards, bank accounts, licensing and registering cars, retitling their homes, etc cuz they did not have a freaking clue.  Some had never written checks, pimped gas, or had their cars serviced on their own. I don’t know if this was a southern thing, but I was stunned.

Iris L.

One of the senior centers around here regularly has a representative from the Alzheimer's Association present a talk.  It would be nice to have a caregiver present information on a personal, household level.  Perhaps ask your local senior center if you could put on your own talk, Ed.

Iris

Gypsy J

What you said resonates with me, Other then those who had regular contact with my DH it was three year after his diagnosis before I officially told any family that lives elsewhere. Luckily around the time of his diagnosis we had moved to a new state so old friends still do not know. I can't tell you why I feel so guarded but maybe it because of what you described plus I would rather they remember him as he was before.

Ed1937

Iris L. wrote:

 Perhaps ask your local senior center if you could put on your own talk, Ed.

Thanks for the suggestion, Iris. I actually did that. They were not interested!!

Jo C.

"Mr. Toad," who was with us for a long time does this in Michigan and he is excellent at it.  Perhaps you cn find him with the Search function and get his town's name which is escaping me right now- it is amazing what he has done and I bet he would be willing to communicate with you on how to go about this.

J.

Ed1937

That's true. Saline, MI is the town. I have one of his calendars. Thanks for the reminder.

Iris L.

Ed1937 wrote:

Iris L. wrote:

 Perhaps ask your local senior center if you could put on your own talk, Ed.

Thanks for the suggestion, Iris. I actually did that. They were not interested!!

What a sad commentary!  Family caregiving is a major life event for older adults and a major reason for early retirement from the workforce.  Caregiving impacts financial stability for seniors, along with being a cause of emotional strife.  Why not get awareness and knowledge from someone who has been down that road and who is willing to share?  I suppose they are fearful of dementia and caregiving.  Learning helps to lessen the fear.  Some people apparently prefer to be like ostriches, hiding their heads from reality.         

Ed, I have another suggestion.  Where I live, there are volunteers who visit older adults.  They are called "friendly visitors".  The volunteers are given a few hours of training about visiting the sick and shut-in.  This program is not only for PWDs.   You might see if there is such a group near you, and offer to help prepare the volunteers.

Did you ever work with the neighbor's wife that you told us about? 

Iris

M1

Ed, I went to an interesting seminar today put on by the new facility where I hope to move my partner--a "virtual" dementia tour that was essentially a sensory deprivation experience.  Very enlightening (that's one of the reasons I really like this facility).  I think they said the company that sponsors the program is called Second Wind?  I haven't googled that, but you obviously can.  took about an hour; there were five participants, and there was a debriefing after.  They took two of us at a time and had us put on gloves (a huge clumsy glove on the dominant hand and a lesser on on the nondominant hand), spiky inserts in our shoes (for distracting discomfort while walking), dark glasses that blocked your central vision, and earphones that played loud distracting white noise.  Thus garbed and impeded, we were given a list of five tasks to do in a small apartment (while under observation and supervision the whole time.  Of course, the biggest issue was that it was almost imposssible to hear and understand what the tasks were with the earphones on, I only heard three of my five and then jsut barely).  Then there was an observer who watched our behavior as we tried to to the tasks, and gave us feedback in the debriefing after.  

Overall quite enlightening.  I wasn't at all sure what to do and just sat on the couch when I was n't sure what to do.  Made up tasks for myself when I finished the three I knew about.  I was aware that my brain was fucntioning just fine, but the uncertainty of the sensroy deprivation was striking.  I found I accommodated to the white noise pretty quickly, but the instructions were given right after the noise came on, and it was virtually impossible to hear/comprehend insturction in those first few seconds.

A program like this would be very helpful for small groups/caregivers, etc., but would take some training to implement.  Found a link but it won't copy--google Second Wind Dreams virtual dementia tour.

mommyandme (m&m)

Ed,  the Senior Center wasn’t interested?  gosh! SMH

Guess maybe the recreation happy center might not want to be associated with the negative stigma of Dementia. It’s so unfortunate that the public doesn’t know more, indeed. 

Ed1937

M1, thank you very much. I'm going to copy what you wrote. It sounds enlightening. And I'll do the Google search.

Ed1937

Jo, I sent an email to Jim. He should have some good pointers.

Iris, I'll check on the volunteer possibility. Thanks!

About the other caregiver who I was going to give respite - I went to his home, and we hit it off instantly! We talked for over two hours, and I told him what I was willing to do for him. Two of his kids stepped up to the plate, and they are giving him respite now. I told him I'm available if he wants me. His wife didn't seem very far in progression, but she shadows him constantly. He can't get away from her. So I haven't stayed with his wife yet, but I may yet. And I made a new friend. In fact we texted each other today.

M&M, I agree. I think it's the negative stigma that people are afraid of. And there is no reason for it. Are you holding up OK? I know it was a tremendous loss for you when mom passed.

GothicGremlin

Some good stuff in this thread.

I've also thought that education about dementia could be given during lunchtime talks at businesses. Lots of places have "lunchtime talks"/"brown bag lunches", etc.  This would be aimed more around early onset symptoms, with a goal of identifying MCI (which almost no one knows about). I know when I talked to my sister's former co-workers and her former manager, no one ever thought that when they saw Peggy "struggling" that it was early onset. Her former manger apologized to me ten different ways for not seeing it for what it was. And of course, none of this was her fault. But it was eye-opening for me.

Iris L.

Ed1937 wrote:

. "   I've been thinking about talking to small groups of people to try to educate them, at least a little, on what it means to have dementia affecting your lives (both the caregiver and the afflicted). 

But I'm unsure how to go about getting people interested.

Perhaps focus more on the caregiving aspect than pointing out early signs of dementia.  Talk about the financial aspects, how much home care costs.  Twenty-five percent of people who retire early, do so because of caregiving needs.  Not only are there added expenses, but they lose out on their own retirement savings. The caregiver's own mental and physical health is affected.  Also, twenty-five percent of caregivers expire before their LO.  This is a sobering thought.  People need to know about this.  Also, many people don't know that dementia is a terminal diagnosis.  Their LO will not get better.  They need to be prepared.  Even the doctors seen reluctant to talk about this.

Iris

PlentyQuiet

Ed, I have a slightly different experience and so offer a different suggestion.

Please reach out to high schools and middle schools in your area. See if you could be a guest speaker in a health class. Many kids have grandparents (or in our sad case it's the parent) on the dementia journey and may not have anyone to ask questions of.  Their parents may be  deep in the weeds of caregiving, or their own grief, or the kids may not want to make their parents sad by asking things (like how exactly will grandma die) that they really want the answers to.  A first person experience and open Q & A may help them understand what is happening. 

Maybe the schools won't be open to it, but I hope that is not the case.

Jo C.

There are so many different avenues to explore regarding this.  The one thing I try to remember to tell myself is, "I don't know what I don't know," and then look for the areas in which I can become informed.

It may be a very good idea to contact your local Alzheimer's Assn. chapter office and speak to their administrative person.  They can provide you with suggestions, ideas and perhaps introductions. If there is some training involved, they may provide that as there may be cautions and precautions that we are not aware of.

Go for what fits you best and step forward.  NOTE:  I do know that while RN program students get education regarding dementia diagnoses, in many programs if not most, it is usually only very little, academic, and not the actual day to day care and behavioral dynamics and usually lacking communication skills with the various stages of dementia, addressing problem behaviors and have no input as students from caregiving family members regarding the challenges. Visits with RN students and even nursing assistant programs may be extremely helpful. Any of us who have had a LO in the ER or admitted to an acute med center soon learn what dreadful deficits there are when the patient has dementia. Also, in many programs, "dementia" is treated like a single diagnosis; usually Alzheimers in that academic approach and not much if at all re the various different types of dementia and what differences that makes. Knowing the impact upon families can make a difference even with the discharge planners.  I can say this as I am an RN with an advanced degree and how little I knew; only from textbook learning regarding the disease and NOT what it is like when it is in one's home and providing care.  I learned that one the hard way.

J.

Arrowhead

Someone once told me to not give up hope because she could get better. Nothing I explained would convince him otherwise.

Ed1937

Thank you very much for the replies. You offered some excellent suggestions. I'll keep this thread in mind.

Joydean

Ed I wish you the very best if you pursue this idea. There are a lot of different avenues that have been mentioned. I know most rural areas have no access to this kind of information. The closest Alzheimer’s organization is 1 1/2 hours away. So they are not helpful in anyway. It was several years after my husband was diagnosed before I accidentally even found this site and it happened to be listed at the very back of a book I was reading. I realize large towns and cities have so many different locations to get information and help. Many small agencies that offer home care do not train their staff about dementia, they do provide computer courses but they are not required to even look at them. So training is up to the individual to want to learn. In all honesty I knew nothing about dementia/Alzheimer’s until my dh was deep into it.

mrahope

I applaud how you are "paying it forward".  There is so much to learn, and who better to teach it than someone who has followed the journey to it's conclusion?  One thing that I think most folks don't really take into account is that dementia is both progressive and fatal.  If this was cancer, hospice could be called in, but I haven't seen that alternative discussed other than very late in the progression.  

And honestly, I think I haven't told people outside the family of my DH's diagnosis because people immediately assume that the affected individual is completely incapable of any independent action, thereby robbing him of what little dignity he has left. 

Rennbird

The biggest shock for me was the lack of understanding by emergency room doctors, nurses and other staff.  I felt as though I had landed on a desert island where the people knew nothing about life in the rest of the world.

Jo C.

Yes, Rennbird; not only in the ER but also for admitted inpatients - truly a significant issue.

J.

Beachfan

Ed, 

 You have come up with a great idea, unfortunately, I don’t have any good suggestions for its implementation.  I do think, however, that the Medical profession is sorely lacking across the board where the understanding of the day- to -day challenges of Alzheimer’s is concerned.   I recall a day some time ago when I told the ophthalmologist that DH would probably not have any success navigating the eye chart due to his MCI.  She asked me what MCI was and when I told her, she said, “Oh, I’ve never heard of that.” One of my greatest fears to this day is that DH will require emergency medical treatment,  and the severity of his Alzheimer’s will render him confused, frightened, and possibly combative.  

In spite of the growing awareness of Alzheimer’s disease and its implications, none of the news stories, films, TV shows, novels or magazine articles truly touch on the nitty gritty of the disease.  People are genuinely stunned when I tell them that for at least 7 years prior to placement, DH never, ever used a toilet alone, at home or elsewhere.  I was always there, start to finish  That’s a long time to be joined at the hip for such a seemingly natural activity.  But I did it to avoid the alternative.  We have such a long way to go.  I am so thankful for this forum and the mutual understanding, kindness, and honesty of its participants.  I wish you luck in your endeavor.  It’s a labor of love. 

Ed1937

I appreciate all the replies. IU has an extension about 8 or 10 miles from me. They have a med school and a school of nursing. That's where my wife got her degree. I would love to get into the nursing school to give them an idea of what it's really like, but this is something I've never done. It's quite possible I would try it once, and decide it's not for me. I do have an irrational fear of public speaking, but I did it once before when I was raising money for St. Jude's Children's research hospital, and I wasn't booed off the stage, so maybe I'll try it again. I did contact the Alz association to get some input from them, and I'm waiting to hear from them. So for now it's just a pipe dream. We'll see. Thanks again.

Edit: I had to edit my post because the program didn't like it when I abbreviated "association".  

riajean

WTF?!  How could they not be interested?!  And it's SO MUCH more than memory loss.  People just really don't get it.  Even aides in long-term care.  Sometimes, my DH is treated poorly, like he could help not seeing a drink an aide is trying to feed him?!  So she yells at him?@ #   I want to hurt someone!!! 

Kenzie56

Ed, I haven't had time to read everyone's responses, so if someone has mentioned this, please ignore. I love your idea and feel this is an area that needs in-servicing.  I would like to add that perhaps a segment of the presentation could address the emotional strain the caregiver is going through.  I have a home health care aide 40 hours per week.  If I mention I am tired, she will ask "Why?", if I say that I woke up last night and couldn't get back to sleep because of stress and worry.  She will ask what I am stressed about and why would I be worried.  I look at her like a deer in headlights. She constantly wants to chat with me and acts like DH isn't in the room. I tell her that he doesn't like being "left out or ignored". I make a point to do chores, get out and walk the dogs, shop or work in our home office to get away from her so she will focus on DH.  I've had so many aides in the past, and care at the MCF didn't work - so I want to keep this aide for consistency sake.  I try to educate her, but she acts like she knows everything and I am the one that is clueless. Not sure if adding the caregiver's stress, depression, exhaustion will make a difference...but thought I'd mention it.  I have mentioned this to the organization that employs the aide. No change with her...but perhaps others would benefit.

Ed1937

Kenzie56 wrote:

Not sure if adding the caregiver's stress, depression, exhaustion will make a difference...but thought I'd mention it. 

I don't think the presentation would be very complete if that was not brought up. That will certainly have it's place in the education of the public. They need to be aware of all aspects of this dreaded disease.

Another Day

I am one who needed educating. It took me a long time to find my way here. Why? Because he wasn't diagnosed with anything, still isn't. How would you let the general population know that it's OK to wander around in alz.org and find out what it's all about? I didn't think I should take a peek in here because I wasn't sure I was one of the affected by this. Just my thoughts.

Ed1937

AnotherDay, when I joined, my wife was not diagnosed either. But I had a pretty strong suspicion that she had dementia. I knew next to nothing about dementia, but I learned pretty quickly from reading and asking questions.  

You said "How would you let the general population know that it's OK to wander around in alz.org and find out what it's all about?" Stay tuned. I expect to be addressing that before long.