Please ready this Blog: Alzheimer’s Association – Why are we not talking on social media? #EndALZ

Why are we not talking on social media? (We are failing as a collective group – The National Alzheimer’s Association, 15.4 million caregivers, 5.2 million with Alzheimer’s, the millions that lost someone to this disease and the millions that know someone that has this disease or has had this disease) – We need to step up now and make Alzheimer’s a national conversation. We need to get our politicians talking about it and get our news media talking about it.

What should the National Alzheimer’s Association Do?

  • Create a national Social Media command center and staff it with the right resources
  • Invest money into social media/mobile and reduce print media
  • Make website mobile friendly
  • Create an App for smart phones that works for the Walk, Advocacy and information
  • The National Alzheimer’s Association should share at least three things a day on Facebook and engage with following.
  • The National Alzheimer’s Association should share at least 10 things a day on Twitter and engage with following.
  • The National Alzheimer’s Association should share content and engage with following on all social media (i.e. Facebook, Twitter, LinkedIn, Pinterest, Google+, YouTube, etc.)
  • The National Alzheimer’s Association should also use paid advertising on social media to grow following and raise awareness.
  • The National Alzheimer’s Association should also use images with limited text to get message out.
  • The National Alzheimer’s Association should also use video to get the message out.

Big Numbers:

  • 320 million people living in the United States.
  • 5.2 million in the United States with Alzheimer’s Disease
  • 15.4 million caregivers in the United States

If you look at our news media, we get very little coverage. This is not a disease that people are talking about. We need to do more and we need to do more now. We need to get a younger voice talking about this disease. We also need to make it sexy to talk about. Cancer is sexy to talk about, but Alzheimer’s is not!

Prefect example of a media bias for other diseases:

“Angelina Jolie will have ovaries removed to lower chances of cancer”

(I don’t remember this much coverage when Glen Campbell was diagnosed with an actual disease, called Alzheimer’s)

Lets dig in a little deeper into the numbers!

We have 15.2 million caregivers and 5.2 million with Alzheimer’s disease in the US! Why do we only have 365,000 likes on the National Alzheimer’s Association on Facebook and 23,500 followers on the National Alzheimer’s Association on Twitter? Shouldn’t we have 15-30 million following the National Alzheimer’s Association on Twitter and 20-30 million Facebook likes for the National Alzheimer’s Association?

If you think the National Alzheimer’s numbers are great, I would love to hear from you. If you think we are missing the mark on how the National Alzheimer’s Association is using social media – Please call them/email them and tell them that they need to do more. I have been telling them for a year that they need to do more, but I’m not seeing enough progress.

The only way we will get them to do more is to call them and email them. We all need to do this every day. We have to make sure they hear us. If we do not do it now, it will be too late for our loved ones that have this disease.

24/7 Helpline

Contact us for information, referral and support.

tel: 1.800.272.3900

tdd: 1.866.403.3073


National office

225 N. Michigan Ave., Fl. 17
Chicago, IL 60601-7633

tel: 312.335.8700

tdd: 312.335.5886

fax: 1.866.699.1246

What should you do (As an individual)?

  • Please call/email the National Alzheimer’s Association every day and ask them to do more on social media.
  • Please like them on Facebook at and ask them every day to do more on social media.
  • If they are not going to raise awareness, we need to do it for them. Please share one thing every day on social media. (LinkedIn, Twitter, Facebook, Google+, Pinterest, etc.)
  • Please follow the National Alzheimer’s Association at @ALZAssociation on Twitter and ask them to tweet more often.
  • Please follow me on Twitter at @ALZandDementia.
  • Please use the #EndALZ hashtag in all social media, not just Twitter.
  • If you are not sure what to share; friend me on facebook at and share what I share.

The National Alzheimer’s Association Social Media Presence or lack there of:


  • 25,350 followers (5.2 million people suffer from this disease and 15.4 million caregivers)
  • 1,537 tweets (this is not really that impressive)
  • 1,000 following (I’m happy to be one of them)


  • 386,000 likes (This is good, but it should be in the millions)
  • Right before #ALZForum (Alzheimer’s Advocacy Forum) – We had a lot of activity, but this ended after the forum – We should have this activity and more every day

6 fb ALZ talking


  • 9,445 members of the Alzheimer’s Association group (75+ Millions people on LinkedIn in the US)

There are a lot of people in the world and United States on Facebook and Twitter. Why can’t we do what our celebrities and politicians are doing?

  • The Alzheimer’s Association has 365k likes on Facebook and 23,500 followers on Twitter
  • Rihanna has 70 million likes on Facebook and 29.6 million followers on Twitter
  • The Simpsons have 64 million likes on Facebook and 1.1 million on Twitter
  • The Notebook (a movie about Alzheimer’s) has 13.9 million likes on Facebook

1 top 6 facebook fans2 7-14 fb fans

Other Top Diseases:


  • Breast Cancer – 3.8 million likes on Facebook
  • American Cancer Society – 795k likes on Facebook
  • American Heart Association – 349k likes on Facebook


  • American Cancer Society – 380k followers on twitter

Alzheimer’s Facts:

  • In 2012, 15.4 million caregivers provided
 an estimated 17.5 billion hours of unpaid care, valued at more than $216 billion.
  • Alzheimer’s disease is the sixth-leading cause of death.
    • Alzheimer’s disease is officially listed as the sixth-leading cause of death in the United States.(113)
    • It is the fifth-leading cause of death for those age 65 and older.(113)
    • However, it may cause even more deaths than official sources recognize.
    • As the number of people with Alzheimer’s disease and other dementias
 grows, spending for their care will increase dramatically.
      • For people with these conditions, aggregate payments for health care, long-term care and hospice
are projected to increase from $203 billion in 2013 to $1.2 trillion in 2050 (in 2013 dollars).A19
      • Medicare and Medicaid cover about 70 percent of the costs of care.
      • Out-of-pocket expenses for long-distance caregivers Are nearly twice As much As local caregivers.
      • 1 in 3 seniors dies with Alzheimer’s or Another dementia.
      • An estimated 5.2 million Americans of all ages have Alzheimer’s disease in 2013.
        • This includes an estimated 5 million people age 65 and older(83), A1
        • Approximately 200,000 individuals under age 65 who have younger-onset Alzheimer’s.(84)
        • One in nine people age 65 and older (11 percent) has Alzheimer’s disease.A2
        • About one-third of people age 85 and older (32 percent) have Alzheimer’s disease.(83)
        • Of those with Alzheimer’s disease, an estimated 
4 percent are under age 65, 13 percent are 65 to 74, 
44 percent are 75 to 84, and 38 percent are 85 or older.(83), A3

7 death rate disease 3 growth of disease 4 health care costs


Social and mobile facts and figures:

Mobile – with the number of people accessing the internet via a mobile phone increasing by 60.3% to 818.4 million in the last 2 years.

Older users adoption – On Twitter the 55-64 year age bracket is the fastest growing demographic at 79% since 2012.

The fastest growing demographic on Facebook’s and Google+’s networks are the 45 to 54 year age bracket at 46% and 56% respectively.


  • 4.5 Billion Likes a day (Alzheimer’s Association – How many do you get?)
  • 4.75 Billion content items shared (Alzheimer’s Association – How many do you share?)
  • 189 million mobile only users
  • 1.11 Billion active users
  • 665 Million daily users
  • 751 Million monthly mobile users
  • 16 million local business pages
  • 7.5 Million promoted posts (Alzheimer’s Association – How many have you done?)

5 facebook stats


Twitter is the fastest growing social network in the world by active users according to a Global Web Index Study.

  • 44% growth from June 2012 to March 2013
  • 288 million monthly active users
  • That means that 21% of the world’s internet population are using Twitter every month
  • Over 500 million registered accounts
  • Twitter’s fastest growing age demographic is 55 to 64 year olds, registering an increase in active users of 79%


  • 1 billion unique monthly visitors
  • 6 billion hours of videos are watched every month
  • This means that 50% more hours of video are watched in March 2013 compared to last August when it was 4 billion hours a month and last May when it was 3 billion.
  • YouTube reaches more U.S. adults ages 18-34 than any cable network


  • 359 million monthly active users according to a Global Web Index study
  • Its active users base grew by 33% from June 2012 through to March 2013


  • 75+ million users in the US
  • The largest professional business network on the planet continues to grow but not at the pace of Twitter or Google+
  • Here are some numbers from
    • Over 200 million users
    • 2 new users join it every second
    • 64% of users are outside the USA


About Richard Kenny

My Mom has Alzheimer's and I help my Dad with caregiving!
This entry was posted in Alzheimer's, Caregiver, caregiving, Dementia, Family, fundraising, Memory Loss and tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

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