RSS Feed Print
14 Quick Facts About Dementia...
The_Sun_Still_Rises
Posted: Monday, December 28, 2015 6:28 AM
Joined: 7/24/2015
Posts: 3020


The other day, on Facebook, someone passed around a 5 quick facts about Alzheimer's and Dementia.  My response went something like this...

14 Quick Facts About Dementia...

1.  Dementia can strike the young, too.  The youngest person with dementia is in their 20's. 

2.  Early diagnosis is important so we have a chance to learn about it's effects, make plans, get affairs in order, and begin medication that will help many of us sustain longer. 

3.  People with dementia need support to cope with their diagnosis.

4.  Better education for caregivers is needed.

5.  People with dementia suffer stigma and false beliefs, they are also more vulnerable to poor treatment and being taken advantage of.  Most advice given, is caregiver oriented...with little understanding of how people are actually affected by the disease.

6.  All the organizations that use the names Dementia or Alzheimer's (save for a few) are only there to support caregivers, and despite socializing being the most important thing people with dementia can do to stave off progression as long as possible, there are few groups in existence to provide support to the actual people with the disease. 

7.  People with dementia, often have to caretake their caregivers feelings and emotions. 

8.  Dementia is NOT considered a disability, and we are NOT protected under the ADA (yet).

9.  The USA has not ratified the UN Convention on the Rights of Persons With Disabilities (yet) that would make dementia a protected disability.   In the USA, we only need 2 more votes.

10.  People with young onset dementia (those younger than age 65) often are the sole providers for families of minor children.  They are often left out of statistics, thoughts, writings, care models, and speeches re dementia.

11.  It took until 2006, when people with dementia demanded it, for people with dementia to be allowed to attend dementia conferences.  To this day, any involvement we have is still token.  And, our speeches often must be pre-approved.

12.  The very first Dementia Conference FOR people with dementia will be held in 2016 in Budapest. 

13.  To this day, when organizations and service providers, address an audience...people with dementia are almost always cited last...as though just as a courtesy.   

14.  We are still in here, and aware, long after we cannot remember names or talk. 

<3

 

 


Michael Ellenbogen
Posted: Monday, December 28, 2015 7:00 AM
Joined: 11/30/2011
Posts: 4384


Not sure agree with all this. See comments below with the once I have concern.

 

1.  Dementia can strike the young, too.  The youngest person with dementia is in their 20's.   Do you know what the youngest is on record who did not have the gene. I did lots of research to find this out.  24 year old women.

4.  Better education for caregivers is needed. This should be expanded to All

7.  People with dementia, often have to caretake their caregivers feelings and emotions. I had a hard time with this one but it is true. I think that goes both ways.

.  The USA has not ratified the UN Convention on the Rights of Persons With Disabilities (yet) that would make dementia a protected disability.   In the USA, we only need 2 more signatures.

 Tell me more about this what do you mean about needing two signatures.

10.  People with young onset dementia (those younger than age 55 This should be 65  ) often are the sole providers for families of minor children.  They are often left out of statistics, thoughts, writings, care models, and speeches re dementia.

11.  It took until 2006, when people with dementia demanded it, for people with dementia to be allowed to attend dementia conferences.  To this day, any involvement we have is still token. And, our speeches often must be pre-approved. People with dementia started speaking up in 1999 or 2000. 2006 was the year that AA actually created a first group which had led to many of these changes.

12.  The very first Dementia Conference FOR people with dementia will be held in 2016 in Budapest. I am unsure on this one.  DASNI had a group meeting for those with dementia. Not sure when the first one started.  

 

 


The_Sun_Still_Rises
Posted: Monday, December 28, 2015 9:02 AM
Joined: 7/24/2015
Posts: 3020


I love your suggestions Michael, thanks.  Ugg, and you are right, I had changed it to 65 on FB, but completely forgot about it when posting here...thank you. 

It will be an actual conference, separate and on our own, like all the other organizations hold...in Budapest.  Very excited. I won't be there, unless I can find someone to teleconference me in, but would love to be there. 

The UN Convention is one of my pet projects.  Obama signed in 2009, and it has been up for vote 2x, but failed...was said that we are missing 2 votes (should have read votes).  I am planning on finding out the yay/nay voters and figuring out the states/localities...and starting an initiative for people to write their local reps to ask them to vote yes on passing it.  Is next on the list after finishing my Advanced Care Directive.

I did not mean to minimize how long it took to get us to be allowed to attend.  It is a hugely disappointing and glaring fact in general. 6-7 years way too long in my humble opinion.  Let's hope 2016 is better.  I have a feeling that this is the year to get heard...and I am ever the optimist.  

Thanks again Michael for your wonderful feedback.


Michael Ellenbogen
Posted: Monday, December 28, 2015 12:27 PM
Joined: 11/30/2011
Posts: 4384


 Are you by any chance referring to the ADI conference.  I agree with what is a head of us. I just wrote something which is being edit.

 


The_Sun_Still_Rises
Posted: Tuesday, December 29, 2015 2:15 AM
Joined: 7/24/2015
Posts: 3020


No...ADI is helping sponsor DAI, a DAI conference.  Yes, it is very exciting.  The next year, 2017, the conference will be fully on our own.
The_Sun_Still_Rises
Posted: Tuesday, December 13, 2016 9:16 PM
Joined: 7/24/2015
Posts: 3020


Another year has passed, and no thing much has changed in the way of services for the actual people with dementia...sigh.
alz+
Posted: Thursday, December 15, 2016 8:58 AM
Joined: 9/12/2013
Posts: 3608


from Sun:

" People with dementia, often have to caretake their caregivers feelings and emotions. "


after I was diagnosed I thought my husband would be so sympathetic and lighten up on his grievances with me but instead found it has been up to me to convince him how KINDNESS and PATIENCE benefit everyone, always, but needed it sooner than later in regard to my ALZ.

I mistakenly thought anyone would automatically become gentler as they would with anyone who had cancer or other illnesses. Wrong.

I still struggle with wanting to encourage him to see how well things go when he is merciful and how sour it goes when he is angry, and just being so pissed off - but again, he does what he can and he does it his way when he wants to and that is what I have to adjust to or figure out where I could ever live elsewhere.

Then he calms down, I calm down, and we go back to making it hour by hour.

there is no automatic kindness. 



julielarson
Posted: Thursday, December 15, 2016 9:12 AM
Joined: 9/30/2015
Posts: 1155


Unfortunately all things dealing with the mind hold fast to a stigma and I think part of why is because people can not see past their own fears of it happening to them. They can not look past it and come to a conclusion that it is not them but someone else with this disease and that all they want is a little understanding.
obrien4j
Posted: Thursday, December 15, 2016 11:47 AM
Joined: 11/18/2016
Posts: 451


Thank you Sun, for posting this! But please don't tell me that Dementia is not considered a Disability....does that mean that I could not go on Long Term Disability Leave or is that a whole other thing?
The_Sun_Still_Rises
Posted: Thursday, December 15, 2016 12:40 PM
Joined: 7/24/2015
Posts: 3020


You will get disability leave, benefits etc....but work is NO obligated accommodate you like they are other disabilities....like if you lost you leg.  These are rights that we (people dementia) fighting for at the UN level and Fed Gov level. 

I should have added, that now a number of children have been dx'd with dementia as well. 

<3

 

 


obrien4j
Posted: Thursday, December 15, 2016 12:55 PM
Joined: 11/18/2016
Posts: 451


Thanks Sun, trying to get my ducks in a row!