Development and evaluation of a telehealth videoconferenced support group for rural spouses of individuals diagnosed with atypical early-onset dementias

Abstract

Atypical and early-onset dementias can be particularly problematic for family caregivers, and support groups aimed at memory loss and Alzheimer's disease are not always helpful. Unfortunately, little has been developed specifically for caregivers of individuals with atypical dementias such as the frontotemporal dementias. Compounding the lack of access to interventions targeted specifically at caregivers of individuals with atypical and early-onset dementias are the unique needs of rural caregivers. Due to the relative infrequency of these particular dementias and the large geographical distances between rural caregivers, technology-facilitation is required for any group-based intervention. This paper describes the development of a secure telehealth videoconferenced support group for rural spouses of individuals with atypical and early-onset dementias. In addition, we provide preliminary evidence of effectiveness and describe a template for future groups based on the key therapeutic aspects of this novel technology-facilitated intervention.

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.…”

“…The remaining two interventions were not specifically designed for YOD, but applied to people diagnosed with YOD and reported as such (Kelly & Innes, 2016;Tonga et al, 2016). Six interventions showed evidence of user-involvement in the design of services (Barker & Johnson, 2008;Chaston et al, 2004;DaviesQuarrell et al, 2010;Kinney et al, 2011;O'Connell et al, 2014;Parkes & Ward, 2015). As indicated, only 10 peer-reviewed papers were available for inclusion.…”

“…Partnerships between Local Councils, community-based organisations and agencies such as the Alzheimer's Society required referrals from health and social care professionals (Kelly & Innes, 2016), local clinics (O'Connell et al, 2014) or local dementia services (Hewitt et al, 2013). 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).…”

“…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).…”

“…Hospital-based services included group counselling for relatives of hospitalised young-onset dementia patients in the UK (Perkins & Poynton, 1990), cognitive therapy applied to people diagnosed with YOD in Norway (Tonga et al, 2016), and telehealth on-line support groups for remote rural groups in Canada (O'Connell et al, 2014).…”