Facing the times: A young onset dementia support group: Facebook^TM style

Abstract

Young onset dementia accounts for up to 1 in 10 dementia diagnoses. Those diagnosed face premature transition into the realm of aged care services and adjustment to an illness of ageing prior to age 65. To help elicit communication of the perceived psychosocial needs of this group, provide a platform to gain peer support and advocate for increased awareness, the Young Onset Dementia Support Group was established on the social networking site, Facebook™ . Followers post comments, read educational or otherwise interesting news feeds, share inspirational quotes and access others living with dementia worldwide. Facebook provides a means of rapid global reach in a way that allows people with dementia to increase their communications and potentially reduce isolation. This paper was authored by the page administrators. We aim to highlight the promising utility of a social network platform just entering its stride amongst health communication initiatives.

Age-appropriate services for people diagnosed with young onset dementia (YOD): a systematic review

“…Twenty articles were included, 10 of which were primary studies (Beattie, DakerWhite, Gilliard, & Means, 2004;Carone, Tischler, & Dening, 2016;Hewitt, Watts, Hussey, Power, & Williams, 2013;Kelly & Innes, 2016;Kinney, Kart, & Reddecliff, 2011;O'Connell et al, 2014;Parahoo, Campbell, & Scoltock, 2002;Perkins & Poynton, 1990;Reed, Cantley, Clarke, & Stanley, 2002;Robertson & Evans, 2015). Ten were descriptive accounts of interventions (Barker & Johnson, 2008;Chaston, Pollard, & Jubb, 2004;Craig & Strivens, 2016;Davies-Quarrell et al, 2010;LaFontaine, 2004;Parkes & Ward, 2015;Ramluggun & Ogo, 2016;J. Robertson, Evans, & Horsnell, 2013;Tonga, Arnevik, Werheid, & Ulstein, 2016;Wheeler et al, 2015).…”

“…Robertson et al, 2013) and on-line support groups (Craig & Strivens, 2016;O'Connell et al, 2014). Day centres provided activities facilitated by trained staff for a number of hours per week (Beattie et al, 2004), whilst domiciliary respite services were designed to support caregivers, enabling families to keep people living with YOD in their own homes for longer (Parahoo et al, 2002).…”

“…Referrals to community-based services were made primarily via non-statutory, third-sector agencies such as the Alzheimer's Society (Carone et al, 2016;Davies-Quarrell et al, 2010;Kelly & Innes, 2016;Kinney et al, 2011;LaFontaine, 2004;Parahoo et al, 2002;Parkes & Ward, 2015) and local dementia services (Hewitt et al, 2013). On-line support groups (Craig & Strivens, 2016) and local projects run by volunteers (Chaston et al, 2004;Jacinta Robertson & Evans, 2015) were publicised via leaflets and word of mouth. The reviewed papers reported no evidence of formal self-referral, but people with YOD were free to attend community-based services of interest.…”

Social Media Use and Perceived Social Isolation Among Young Adults in the U.S.

“…Prior studies have demonstrated value for these types of networks. 38,39 Similarly, individuals with certain personality types (e.g., extroverted versus introverted) might derive more or less benefit.…”

Questioning reliability assessments of health information on social media

“…Indeed, social media sites encourage health consumers to communicate and share knowledge directly with one another, fostering interaction, participation, engagement, and community. This is especially visible in the use of social media for support for and education about health-related ailments and concerns [54–56]. As social media sites promote the creation of user-generated content, they blur boundaries between producers and consumers of online health-related information.…”