When One Call Isn’t Enough: A Comparison of Alzheimer’s Association Helpline Callers

Abstract

AbstractBackgroundFamily care partners of persons living with dementia (PLWD) have limited support and resources and experience high levels of stress and burden. Prior research has demonstrated that one call to the Alzheimer’s Association’s Helpline benefitted 80% of callers following a single call. However, some care partners need more support than a single call.MethodThe aim of this study was to evaluate the efficacy of offering up to two callbacks after an initial call to the Helpline. Study participants were Helpline callers who were asked if they sought additional calls due no progress towards implementing recommended action steps after a single Helpline call. Outcomes were compared at 2, 4 and 6 weeks after baseline and included PROMIS measures of self‐efficacy.ResultOf 2504 participants, 79.92% were female, 73% were white, age = 60.31 years (± 12.59), 85.06% bachelor’s degree+, 64.42% lived with PLWD. No statistical difference were noted in demographics between single vs. +1 callers. However, +1 callers scored lower on two PROMIS items: upset (p < 0.0171) and ability to bounce back (p < 0.017). After one call, those with +1 call improved on the total PROMIS (p < 0.0001), as well as the following items: negative feelings < 0.001), stress (p < 0.0009), upset (p < 0.0145), discouragement (p < 0.006), and distress (p < 0.0001). From the first call to the second call, callers improved on the total score (p < 0.0065), upset (p < 0.0349) and ability to relax (p < 0.0213) items. Following second call, participants improved on the overall survey score (p < 0.004), as well as the following items: stress (p < 0.016), upset (p < 0.03), discouragement (p < 0.04), distress (p < 0.0066), and ability to relax (p < 0.02).ConclusionFurther research is indicated to understand the support needs of care partners that can benefit from more than one call to a tele support program.