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Seniors with Alzheimers and their families - using social media

Delivered July 11th, 2019. Contributors: Michele R., Agnidip M., Deepa V. and

Part
01
of three
Part
01

Senior Citizens with Alzheimer's - Social Media Analysis

 Forty percent of seniors use social media, including Facebook, Instagram, LinkedIn, Twitter, Pinterest, Snapchat, YouTube, WhatsApp, and Reddit. Unfortunately, no information was available in the public domain on the use of social media by patients with Alzheimer's disease or on the exact hour usage, and regional variations in the use of social media by senior citizens. Below is an overview of the findings.

Overview of Alzheimer's

  • Alzheimer's is the most common form of dementia. Alzheimer's causes problems with thinking, memory, and behavior. Its symptoms progress slowly over time and interfere with daily tasks, eventually to a point where those affected can no longer interact with their environment.
  • There are approximately 5 million people in the U.S. with age-related dementias. Approximately 70% of these cases are Alzheimer’s disease.

Seniors and Social Media

  •  Forty percent of Americans over the age of 65 report using social media.
  • Of seniors who use social media, 46% use Facebook, 8% use Instagram, 11% use LinkedIn, 7% use Twitter, 15% use Pinterest, 3% use Snapchat, 38% use YouTube, 3% use WhatsApp, and 1% use Reddit.
  • The use of Facebook for seniors has more than doubled since 2012, from 20% to 46%.
  •  Sixty-seven percent of seniors aged 54-72 (baby boomers) and 30% of seniors aged 73-90 (silent generation) own smartphones.
  •  Thirteen percent of baby boomers and 8% of those from the silent generation are smartphones only internet users.
  •  Sixty-six percent of baby boomers and 34% of the silent generation have home broadband.
  •  Sixty-eight percent of baby boomers and 63% of the silent generation believe the internet is good for society.
  •  Eight percent of senior internet users say they are on the internet constantly.
  •  Seventeen percent of senior internet users say they are online once a day and 51% say they are online several times a day.
  • Of seniors who go online, 82% are aged 65 to 69, 75% are aged 70 to 74, 60% are aged 75 to 79, and 44% are 80 or older.

Using Social Media for Dementia and Alzheimer's

  • Research shows that social contact for people with dementia tends to maintain their level of functioning longer, and social media can help with this.
  • Facebook can help by using the "Memories" tab as it brings up posts from past years, promotes memories, and keeps them alive.
  •  Group messaging and private groups on Facebook link seniors to the most important people in their lives, giving them a place to communicate.
  • Facebook games can allow seniors to play, which engages thinking skills.
  • Pictures on Instagram are also a way to jog memories.
  • A Pinterest search for new things can be a good way for cognitive and social engagement.
  • One company, PRA Health Services, has begun searching for Alzheimer's patients and caregivers through social media, trying to determine their everyday struggles to determine where it can focus its research to meet the patient’s needs.
  • Clinically trials suffer because of a lack of participants, and many recent Alzheimer's drug trials have failed or been stopped. PRA is looking to social media to put themselves on the right track for finding treatments for this disease.

Social Media for Seniors

  • AARP has 2,043,526 followers on its main Facebook page, but it also has specialty pages and local chapter pages on Facebook.
  • The Alzheimer's Association has 864,485 followers on its main Facebook page, but the page also includes a lookup for local chapters, some of which also maintain Facebook pages.
  • A growing group on Facebook is the Alzheimer’s and Dementia Caregivers Support group. The closed group is three years old, currently with 48,077 members including 1,486 new members in the last 30 days.
  • Instagram has several senior "influencers" including Helen Winkle with 3.8 million followers and George Takei with 1.1 million followers.
  • Senior Planet, dedicated to working with technology and aging, has a Twitter page with 13,900 followers.
  • Professor David Sinclair, PhD AO, is the author of the book and newsletter called Lifespan and works on aging. He has a Twitter page with 33,700 followers.

Paywalled Report

  • There is a study regarding users on Twitter that have dementia behind a paywall.

RESEARCH STRATEGY

We began our research reviewing scholarly studies from sources such as Pew Research, Science Direct, and Research Gate for reports on dementia or Alzheimer’s and social media but were unable to find any current studies. We expanded our search to seniors and social media and were able to find several current reports on Americans and internet use, which contained data on seniors and social media use. These figures are included in this brief. However, none of the studies made reference to dementia or Alzheimer’s and their use of social media or the exact hour usage or regional variations in the use of social media by senior citizens. We did find one study that concluded that social media can be beneficial to early dementia patients and that study is included in this brief. We also found one paywalled study on Twitter users who have dementia, which was also included in this report.
We then reviewed senior publications and sources such as AARP, the Alzheimer Association, Elder Care News, and Active Over 50 for articles regarding seniors and technology as well as articles on dementia and Alzheimer’s. We were able to find several articles that explain to seniors how to use technology for the first time, how to stay safe on the internet, the first signs of dementia, and support groups for dementia patients and healthcare workers, but we were unable to find articles that revealed how many senior users of social media have Alzheimer’s or the exact hour usage or regional variations in the use of social media by senior citizens.
We continued our search by reviewing media and marketing sources, such as Hootsuite, Mediakix, and SocialBakers, looking for information on marketing to seniors online. We found articles on recommended platforms for advertisers, but most of the statistics used were from information already cited in this report. Advertising regarding Alzheimer's patients was directed at caregivers, not the patients themselves, so no useful data regarding seniors with Alzheimer's using social media or the exact hour usage or regional variations in the use of social media by seniors was found.
Although there was information about the fact that seniors with Alzheimer's using social media can be beneficial to slow the progression of the disease, it appears that no current studies or articles have been written to show how many people with Alzheimer's are currently using social media.



Part
02
of three
Part
02

Adult Children of Senior Citizens with Alzheimer's - Social Media Analysis

After a thorough search using credible sources, we were not able to find statistics surrounding social media usage (hours and visits per week) by adult children of Alzheimer's patients on each social media platform. However, the research team pulled together other relevant insights about the general internet and social media usage of Alzheimer's patients' adult children and caregivers in general, as well as the significant support groups they follow. Details have been presented below, together with the team's research strategies to find the required information.


USEFUL FINDINGS

  • Out of the 16.1 million unpaid caregivers in the United States, adult children were found to be the most common primary caregivers for parents with Alzheimer's and related Dementia.
  • The above-mentioned phenomenon was especially found to be true for Gen X and Baby Boomer generation.
  • About 42% of these caregivers, who were primarily found to be adult children, use in-person support groups, online communities, and forums.
  • On a further deep-dive, it was found that about half of caregivers had joined some kind of support group.
  • Generation-wise, Millennials were the most likely to join these groups, and about fifty percent of Gen X had joined too. Baby Boomers were the least likely.
  • As an online support group, Millennials and Gen X both preferred private Facebook group or other online forum.
  • It was also found that searching for “Alzheimer’s support” on Facebook returned dozens of private social groups.
  • In the United States, it was found that Alzheimer-Dementia caregivers had higher rates of stress, and medical and psychiatric illnesses and newer alternatives such as online technologies, social media, online groups, friendsourcing, and crowdsourcing were found as methods of delivering support.
  • In the context of gathering health care information, Facebook remained the most widely used social media platform among the 73% of online adults.

ALZHEIMER CAREGIVERS VS NONCAREGIVERS

  • It was found that the use of the internet and social media among Alzheimer caregivers was greater than that among the noncaregivers.
  • While caregivers used the internet to obtain health information more than noncaregivers, at 72% and 50%, respectively, 52% of caregivers participated in online social activity as compared with 33% of noncaregivers.

SIGNIFICANT ALZHEIMER DEMENTIA SUPPORT GROUPS: FACEBOOK AND TWITTER

  •  Memory People: It is a Facebook group with over 18,000 active users that assists caregivers with questions and concerns. The group also regularly offer event details, educational opportunities, and awareness discussions to help the community stay up-to-date on new developments in the field.
  •  Dementia Caregivers Support Group: This is a Facebook group with more than 15,000 members that supports caregivers of those affected by Dementia and Alzheimer's.
  •  Alzheimers and Dementia Caregivers Support: It is a Facebook group with more than 3,400 caregivers that posts over 100 new posts a day from members answering questions pertaining to caregiving.
  •  Alzheimer’s and Dementia Caregivers Support Chat Group: This is a support and chat group with more than 5,000 caregivers.
  •  Alzheimer’s Association: This handle is one of the leading voluntary health organizations in Alzheimer's care, support, and research with 145,000 followers.
  •  Alzheimers.net: This is a Twitter handle that acts as an online community for Alzheimer's information and support and has 5,794 followers.

Research Strategy:

We started our search by looking into reputed medical publication sources such as PubMed NCBI and the U.S. Department of Health and Human Service (HHS) official website. Apart from these two, we also looked into publications compiled in Science Direct and related citation links and university publications on the topic such as those put out by the likes of Yale University and University of Michigan. To go through the overall repository of academic studies done on this area, we scanned through Academia and ResearchGate. Although there was information available on the nature of caregivers and how they look for support from online resources and social media outlets, the data available publicly were not nuanced or detailed enough to provide hours and visits per week by platforms or regional variations.

Secondly, we tried to search for some of the most popular groups dealing in this area and found groups such as Memory People, Dementia Caregivers Support Group, Alzheimers and Dementia Caregivers Support, and Alzheimer’s and Dementia Caregivers Support Chat Group, etc. We then went through these groups to look for any data that they have prepared profiling their groups and their members from diverse perspectives. However, no such information could be found as the information exchanged was more focused on the patients than on the caregivers.

Next, we checked the Alzheimer and Dementia association databases. This included looking into reports, publications, or available data presentations put out in public by credible associations such as Alzheimer's Association, Alzheimer's Association of the National Health Council, Alzheimer's Foundation of America, etc. Although some reports published by these agencies such as ALZ's Special Report on Alzheimer’s Detection in the Primary Care Setting: Connecting Patients and Physicians, carried information on the adult children caregivers and their preoccupations and preferences, the information was not adequate and detailed when it comes to online activities or social media usage for that matter.

As our last resort, we looked into news articles on health and caregiving published in generic news sources such as The New York Times, The Washing Post, and Boston Mail among others. Our aim was to find out articles first relating to Alzheimer and Dementia caregivers and to then look into information on whether these caregivers were increasingly taking the social online platforms to seek help and gather information. However, although these sources had information/articles on AD caregivers, the information was not detailed to provide times spent on a per day basis or similar.

In view of this lack of information as contoured by the limits and challenges mentioned above, we have provided other helpful insights regarding the internet and social media usage of Alzheimer's patients' adult children and caregivers in general.
Part
03
of three
Part
03

Effective Communication - Seniors with Alzheimer's and their Adult Children

Alzheimer's online discussion forums, The Walk to End Alzheimer’s, the Alzheimer’s Impact Movement (AIM) Advocacy Forum, Leaders Engaged on Alzheimer’s Disease (LEAD Coalition), and caregiver support groups are five effective ways to reach out and communicate effectively with Alzheimer's patients and their families.

Effective ways to reach and communicate with Alzheimer's patients and their families

Alzheimer's online discussion forums

  • There are more than 5 million Amzheimer's patients in the US.
  • Alz Connected is an online community for Alzheimer's patients and caregivers and has more than 45,000 participants.
  • Alz Live is an online community and discussion forum for Alzheimer's patients and caregivers and has 1,330 estimated monthly SEO clicks.
  •  Alzheimers.proboards.com is an online Alzheimer's discussion forum with 101,913 posts so far and 1,105 members.

    • The Walk to End Alzheimer’s

  • The Walk to End Alzheimer’s is a walk conducted by Alzheimer's Association and had 500,000 participants in 2018.
  • The Walk to End Alzheimer’s is held every year in more than 600 communities across the US.

    • The Alzheimer’s Impact Movement (AIM) Advocacy Forum

  • The Alzheimer’s Impact Movement (AIM) Advocacy Forum, annually held in Washington D.C. by Alzheimer's Association, is a national advocacy event attended by about 1,000 advocates for Alzheimer's patient care.

    • Leaders Engaged on Alzheimer’s Disease (LEAD Coalition)

  • Leaders Engaged on Alzheimer’s Disease (LEAD Coalition) is a national movement of 90 member organizations working in the field of Alzheimer’s disease and other types of dementia.
  • According to the US Against Alzheimer's, the organization running LEAD Coalition program, the coalition has access to more than 3 million individuals.

    • Caregiver support groups

  • Family Caregiver Alliance (FCA) caregiver support groups are available both online and in-person, with the aim to help Alzheimer's and dementia patients across the US.
  • The Alzheimer’s Association Local Support Groups are in-person support groups that give assistance and advice to family caregivers of Alzheimer's and dementia patients.
  • Alzheimers.net states that joining a support group is the most important thing in coping with Alzheimer's disease in the family.


    • Sources
    Sources
    From Part 01
    a

    What Is Alzheimer's?

    alz.org

    Demographics of Social Media Users and Adoption in the United States

    pewinternet.org
    Publication Year: 2018

    10 facts about Americans and Facebook

    pewresearch.org
    Publication Year: 2019

    Millennials stand out for their technology use

    pewresearch.org
    Publication Year: 2018

    How Social Media Can Help Dementia Patients - Social Media Explorer

    socialmediaexplorer.com
    Publication Year: 2019

    Dementia Statistics – U.S. & Worldwide Stats | BrainTest

    braintest.com
    Publication Year: 2019

    AARP

    facebook.com
    Publication Year: 2019

    Alzheimer’s Association

    facebook.com
    Publication Year: 2019

    Alzheimers and Dementia Caregivers Support

    facebook.com

    A quarter of Americans are online almost constantly

    pewresearch.org
    Publication Year: 2018

    Tech Adoption Climbs Among Older Americans

    pewinternet.org
    Publication Year: 2017

    Top 10 Elderly Influencers On Instagram | Senior Citizen Instagrammers

    mediakix.com
    Publication Year: 2019

    seniorplanet (@seniorplanet) | Twitter

    twitter.com

    David Sinclair, PhD AO (@davidasinclair) | Twitter

    twitter.com

    SAGE Journals: Your gateway to world-class research journals

    journals.sagepub.com
    Publication Year: 2018

    Leveraging Social Listening to Advance Alzheimer’s Disease Research | Wavelength

    prahs.com
    Publication Year: 2017
    From Part 02

    The State of Caregiving for Alzheimer’s and Related Dementia 2018

    healthline.com
    Publication Year: 2018
    Quotes
    • "There are 16.1 million unpaid caregivers in the United States. Generationally, adult children are the most common primary caregivers. This is especially true among Gen X and baby boomers. However, in baby boomers, 26 percent of primary caregivers are the spouses of those with Alzheimer’s and millennial grandchildren act as primary caregivers 39 percent of the time."
    • "We know that for the sandwich generation, there are a lot of women who are in their 40s and 50s, balancing careers, caring for an elderly parent or family member, and caring for young children at home or paying for college. This takes an enormous toll on them,” says Drew."
    • "42 percent of caregivers use in-person support groups, online communities, and forums."
    • "Our survey found that about half of caregivers have joined some kind of support group. Millennials are most likely to do so, and about half of Gen X had. Baby boomers were least likely. Millennials and Gen X both share a preference for online support groups, such as a private Facebook group or other online forum. Even in this digital age, 42 percent of caregivers still attend in-person support groups."
    • "There’s no shortage of support groups available to suit Alzheimer’s caregivers’ own style and needs. --Peer- and professional-led groups can be located by ZIP code at the Alzheimer's Association. --Searching for “Alzheimer’s support” on Facebook returns dozens of private social groups. --Newsletters, social channels, and other resources are available at Caregiver.org. --Message boards at AARP connect caregivers online. --Ask a doctor, church, or caregiving service for recommendations in local areas."

    Alzheimer’s Facts: 50 Eye-Opening Facts and Statistics About Alzheimer’s Disease and Its Impacts

    blog.caregiverhomes.com
    Publication Year: 2018
    Quotes
    • "Through training, caregivers can learn how to manage challenging behaviors, improve communication skills, and keep the person with Alzheimer’s safe. Research shows that caregivers experience lower stress and better health when they learn skills through caregiver training and participate in a support group(s) (online or in person). Participation in these groups can allow caregivers to care for their loved one at home longer."

    Alzheimer’s Caregivers Determined to Lower their own Risk of Cognitive Decline, May Not be Doing Enough

    healthline.com
    Publication Year: 2019
    Quotes
    • "--42 percent of caregivers use in-person support groups, online communities/forums --55 percent of caregivers say they are not getting adequate emotional support"

    Comparing Crowdsourcing and Friendsourcing: A Social Media-Based Feasibility Study to Support Alzheimer Disease Caregivers

    researchprotocols.org
    Publication Year: 2017
    Quotes
    • " In the United States, over 15 million informal caregivers provide unpaid care to people with Alzheimer disease (AD). Compared with others in their age group, AD caregivers have higher rates of stress, and medical and psychiatric illnesses. Psychosocial interventions improve the health of caregivers. However, constraints of time, distance, and availability inhibit the use of these services. Newer online technologies, such as social media, online groups, friendsourcing, and crowdsourcing, present alternative methods of delivering support. However, limited work has been done in this area with caregivers."
    • "With the changes brought by Web 2.0, social media became another means of collecting health care information [62]. Facebook remains the most widely used social media platform among the 73% of online adults who use a social networking website "
    • "Caregiver use of the Internet and social media is greater than that of noncaregivers. In a survey of caregivers’ online health behaviors, caregivers used the Internet to obtain health information more than noncaregivers, at 72% and 50%, respectively. In the same survey, 52% of caregivers participated in online social activity as compared with 33% of noncaregivers."

    23 Popular Online And In-Person Caregiver Support Groups

    care.com
    Publication Year: 2018
    Quotes
    • "1. Memory People Does your loved one struggle with symptoms of memory loss or cognitive function? Whether your loved one is touched by dementia, Alzheimer’s or another memory loss illness, this group of over 18,000 active users is ready and able to assist with questions and concerns. They also regularly offer event details, educational opportunities, and awareness discussions to help the community stay up-to-date on new developments in the fight against memory loss. It is a community open to both those struggling with dementia and memory impairment, and those who know them."
    • "2. Dementia Caregivers Support Group This group also supports caregivers of those affected by dementia and Alzheimer's. They pride themselves on being a safe space for anyone, and membership in the group guarantees a judgment-free place for learning and comfort. With over 15,000 members, the discussions stay lively and the topics timely."
    • "3. Alzheimers and Dementia Caregivers Support This support group was created by a woman who was caring for her mother-in-law with dementia. While her loved one has passed on since then, the group has gained traction as a loving and encouraging destination for over 3,400 caregivers to learn and listen. The group also has over 100 new posts a day from members, making it a place to get answers to your caregiving questions quickly. "
    • "7. Alzheimer’s and Dementia Caregivers Support Chat Group Over 5,000 loved ones of those with memory-related illnesses are in this Facebook group. It’s growing rapidly, in part due to the welcoming atmosphere for those with dementia-related questions. If you are struggling with the weight of care, this might be the group for you."

    Alzheimer’s Assoc. (@alzassociation) | Twitter

    twitter.com
    Quotes
    • "The Alzheimer’s Association is the leading voluntary health organization in Alzheimer's care, support and research. #ENDALZ"

    Alzheimers.net (@Alzheimersnet) | Twitter

    twitter.com
    Quotes
    • "Your Online Community for Alzheimer's Information and Support. Call us to speak with a local local Advisor: (877) 311-6126"
    a

    2019 ALZHEIMER’S DISEASE FACTS AND FIGURES

    alz.org
    Publication Year: 2019
    From Part 03

    Alzheimer’s Statistics

    alzheimers.net
    Publication Year: 2019

    Alzheimers Discussion Forum: Alz Connected

    alzconnected.org
    Publication Year: 2019

    Family Caregivers Discussion Forum - Alz Live

    alzlive.com
    Publication Year: 2019
    s

    Estimated monthly SEO clicks: Alz Live

    spyfu.com
    Publication Year: 2019

    Home | Alzheimer’s Discussion Forum

    alzheimers.proboards.com
    Publication Year: 2019

    The Walk to End Alzheimer’s

    act.alz.org
    Publication Year: 2019

    The Alzheimer’s Impact Movement (AIM) Advocacy Forum: Alzheimer’s Association

    alz.org
    Publication Year: 2019
    a

    Alzheimer's Association Annual Report 2018

    alz.org
    Publication Year: 2019

    Our Impact: US Against Alzheimer's

    usagainstalzheimers.org
    Publication Year: 2019
    Quotes
    • "In partnership with many others, we have worked across sectors to Secure almost one billion dollars in additional annual public funding for Alzheimer’s research, helping increase U.S. investment in dementia research at the National Institutes of Health from $448 million in 2010 to $1.8 billion for FY 2018 (a more than three-fold increase) and prompting the U.K., Canada, and Japan to commit to greater research investment. Secure the national goal of preventing and effectively treating Alzheimer’s by 2025. Drive global efforts that resulted in the G7 nations embracing a similar 2025 goal and calling for greater levels of research investment and collaboration. Launch the Global Alzheimer’s Platform (GAP) Foundation to build the first global trial-ready platform for Alzheimer’s drug development--to reduce the time, cost and risk of getting innovative medicines to persons with or at risk of dementia. Create LEAD Coalition (Leaders Engaged on Alzheimer’s Disease), the largest nationwide coalition of Alzheimer’s organizations. It is comprised of over 90 organizations with the ability to reach well more than 3 million individuals."

    Leaders Engaged on Alzheimer’s Disease (LEAD Coalition)

    leadcoalition.org
    Publication Year: 2018

    Family Caregiver Support Groups

    caregiver.org
    Publication Year: 2019
    Quotes
    • "FCA has partnered with Smart Patients to create this new Caregivers Community so that caregivers and other loved ones can join the community for free to share, interact, and learn from each other in a safe, supportive environment. And family caregivers of adults with chronic physical or cognitive conditions such as Alzheimer’s, stroke, Parkinson’s, and other illnesses can share their own expertise with this new community. By partnering with Smart Patients, we are helping empower caregivers to improve care for themselves and others."

    5 Emotional Support Groups for Alzheimer’s Caregivers

    alzheimers.net
    Publication Year: 2019
    Quotes
    • "Finding a support group to share stories with, seek advice from and simply have available to listen to you on a regular basis can help lower caregiver stress and alleviate the health risks that caregivers face. Plus, support groups have information on community resources for adult day care services, Alzheimer’s education and other programs that can ease some of the workload."