Fig. 2 Number of Support Functions: Pages vs. Groups, Quartiles

Fig. 3 Types of Support Functions Offered: Pages vs. Groups

Facebook as a Resource for Caregivers of Dementia PatientsSara Noble, MA1; Sandra Sanchez-Reilly, MD1,2; Jeanette Ross, MD1,21 The University of Texas Health Science Center at San Antonio 2 GEC/GRECC South Texas Veterans Health Care System

Supported by the Medical Student Training in Aging Research (MSTAR) Program funded by the National Institute of Aging (T35 AG038048, PI: Sanchez-Reilly) and the American Federation of Aging Research (AFAR). The investigators retained full independence in the conduct of this research.

Background• As our population continues to expand and

individuals are living longer, more and more people are taking on the role of primary caregiver for their ailing loved ones.

• Burnout is a common issue among caregivers of dementia patients. It may negatively impact not only the mental and physical health of the provider, but also affect the care provided to the patient.

• Caregivers in need of support may be reaching out to others via social media. Their characteristics, types of usage, and potential benefits for improved outreach have not been thoroughly explored.

• Facebook is one of the most popular forms of social media in the world. It has created new and exciting ways to expand communication and disseminate information across all walks of life.

• The aim of this project is to better understand how Facebook is being used by the caregivers of dementia patients as a means of social support.

Objectives• To identify and categorize the various types of

resources available to caregivers of dementia patients that are currently being used on Facebook.

• To better understand how Facebook is being used by caregivers of dementia patients.

• To explore trends and potential benefits of using Facebook to provide support to caregivers.

Methods• A Facebook Page was defined as an open site that any user

can “like” and subsequently view posts in their news feed. Posts can only be created by the Page owner, but any Facebook user can comment. Information shared is open and available to the public.

• A Facebook Group was defined as a site that users can request permission from admin to “join.” Posts can be created or commented on by any member. Facebook offers three different Group privacy settings:

► Open: returned in search results, with Group description, member lists, posts, and comments visible to public.

► Closed: returned in search results, with Group description and member lists visible to the public but posts and comments are only visible to members.

► Secret: not returned in search results, invisible to the public, and require an invitation from the admin to join.

• Facebook Pages and non-secret Groups were identified using search terms: “dementia,” “Alzheimer’s,” “Lewy Body,” +/- “caregiver,” “support.”

► Limited sample to top 150 Pages/Groups per search term ► Pages/Groups were excluded if they pertained to promotion of specific products, musicians, films, or illegal drug use.

► Analysis was limited to predominately English-speaking Pages/Groups

• Data collection included: reach (# of likes/members, most popular age group*, most popular city*), owner type (individuals or organization type), frequency of posts (# days since most recent post, # posts in past month), and # of days on Facebook*.

• Analysis of the types of caregiver support functions offered by each Page/Group were based on Page/Group description and qualitative review of posts** added during the 6-month period between December 1, 2013 and May 31, 2014.

* limited to Pages ** limited to Pages and Open Groups

Results• 308 Pages and 66 Groups were analyzed.

• Pages had a broader reach, with # of likes ranging from 31 to 504,981 (median 719); Groups had a smaller reach, with # of members ranging from 35 to 7,697 (median 163).

• Pages were most frequently owned by non-profit organizations (P 50%, G 5%, p<0.001), and Groups most frequently owned by individual community members (P 18%, G 92%, p<0.001).

• The various caregiver support functions offered on Facebook Pages/Groups were divided into eight categories:

► Social Support: sharing stories and making personal connections with other users

► Advocacy & Awareness: education of disease processes

► Caregiver Tips & Skills: instructional articles ► News & Research: articles and links to reputable sources

► Inspirational Messages: quotes or images ► Fundraising Opportunities: local or national ► In-Person Events: support events, conferences ► Internet or Radio Events: webinars, podcasts, radio events

• Pages offered a mean of 5.2 of the 8 support categories; individual Groups offered a mean of 2.6 of the 8 support categories (p<0.005).

• Proportion of Pages vs. Groups that provided support functions varied by category, but Pages were more likely than groups to provide: news & research (p<0.001), advocacy & awareness (p<0.001), in-person events (p<0.001), fundraising opportunities (p<0.001), inspirational messages (p<0.001), Internet or radio events (p<0.05), social support, and caregiver tips & skills.

0% 10% 20% 30% 40% 50% 60% 70% 80% 90%

100%

Social Support

Advocacy & Awareness

Caregiver Tips & Skills

News & Research

Inspirational Messages

Fundraising Opportunities

In-Person Events

Internet or Radio Events

Pages Groups

Fig. 1 Examples of Support Functions Offered on Facebook ▼Social Support ▼Internet & Radio Events ▼Caregiver Tools & Skills ▼Fundraising & Activism ▼Awareness & Advocacy ▼In-Person Events ▼Inspirational Messages ▼News & Research

Conclusions• Clinicians should be aware of the broad range of Facebook

support functions for caregivers and the differences between Page vs. Group resources:

► Pages have a wider reach, perform a broader range of support functions, and are organized and supported by formal organizations

► Groups offer more personalized caregiver support, are more active in posts/level of activity, and typically organized by individual community members.

• Facebook is an ever-changing social media tool. Knowing how it is currently being utilized by caregivers enables clinicians and health organizations to potentially provide further education and support using social media.

TRIM: 3’ x 4’ • CONTACT FOR QUESTIONS: Sara Noble, noblese@livemail.uthscsa.edu, 210-865-3690

Pages Groups

*** p < 0.001 * p < 0.05

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0 1 2 3 4 5 6 7 8

Groups

Pages

Total Number of Support Categories

Mean: 5.2**

Mean: 2.6**

* *p < 0.005