Characteristics, Caregiver Evaluations, and Telephone Call Volume of a Frontotemporal Dementia Caregiver Educational and Support Program

Caregiver distress in behavioral variant frontotemporal dementia (FTD) is considerable. Individually-developed, multicomponent interventions that include education and support services might decrease this distress, improve quality of life, and enable caregivers to provide at-home care for longer periods. We assessed the value of an education and supportive session on FTD for patients and caregivers, and its contribution to coping and knowledge of the disorder. Phone call frequency as a presumed indirect measure of caregiver distress was measured for the 12-month period prior to and 12 months subsequent to the FTD caregiver education and support program. More than 70% of attendees viewed the sessions as highly beneficial, and more than 90% acknowledged greatly or somewhat improved knowledge and understanding of the disorder. Attendees rated coping in the patient role as 88 % greatly or somewhat improved, and coping in the role of a caregiver as 85% greatly or somewhat improved. Overall call frequency from 2009 to 2014 decreased 35% in total (range 52-80% decrease for 4 years and increased 9-250% for 2 years). Findings suggest that patients and caregivers view educational sessions as highly desirable and informative, and that the programs specifically designed for FTD patients and families empower caregivers and may modestly decrease caregiver distress.