Effects of the tailored activity program (TAP) on dementia-related symptoms, health events and caregiver wellbeing: a randomized controlled trial

Abstract

Background People living with dementia (PLWD) and caregivers are adversely impacted by lack of meaningful activity leading to worse symptoms and impaired quality-of-life. There is a critical need to develop effective and well-tolerated treatments that mitigate clinical symptoms, engage PLWD and support caregiver wellbeing. We tested whether, compared to attention control, the Tailored Activity Program (TAP) reduced clinical symptoms and health-related events, and improved caregiver wellbeing, and if TAP activities were well-tolerated. Methods We conducted a single-blind randomized controlled trial among 250 dyads recruited from Baltimore-Washington DC (2012–2016) with a dementia diagnosis and clinically significant agitation/aggression. Dyads were randomized to TAP (n = 124) or attention control (n = 126), and interviewed at baseline, 3 (endpoint) and 6-months (follow-up) by interviewers masked to group allocation. TAP assessed PLWD abilities/interests, instructed caregivers in using prescribed activities, and provided dementia education and stress reduction techniques. Attention controls received disease education and home safety tips. Both groups had up to 8 home visits over 3-months. The primary outcome was frequency by severity scores for agitation/aggression subscales of Neuropsychiatric Inventory-Clinician using caregiver ratings. Secondary outcomes included number of instrumental (IADL) and activities of daily living (ADL) needing assistance, caregiver wellbeing, and confidence using activities. Health-related events (PLWD death, hospitalizations, caregiver hospitalization, depression) and perceived study benefits were captured over 6 months. PLWD tolerability of prescribed activities was examined. Results Of 250 dyads, most caregivers were female (81.2 %, n = 203), non-spouses (54.4 %, n = 136), white (59.2 %, n = 145) or African American (36.7 %, n = 90) with mean age = 65.4 (SD = 12.6). PLWD were mostly female (63.2 %, n = 158) with mean age = 81.4 (SD = 7.9), and mean MMSE = 14.3 (SD = 7.8). At 3-months, compared to controls, TAP conferred no benefit to agitation/aggression (p = 0.43, d = 0.11), but resulted in less IADL (p = 0.02, d=-0.33), and ADL (p = 0.04, d=-0.30) assistance, improved caregiver wellbeing (p = 0.01, d = 0.39), and confidence using activities (p = 0.02, d = 0.32). By 6-months, 15 PLWD in TAP had ≥ 1 health-related event versus 28 PLWD in control, demonstrating 48.8 % improvement in TAP (p = 0.03). TAP caregivers were more likely to perceive study benefits. Prescribed activities were well-tolerated. Conclusions Although TAP did not benefit agitation/aggression, it impacted important outcomes that matter to families warranting its use in dementia care. Clinical trial registration Clinicaltrials.gov # NCT01892579 at https://clinicaltrials.gov/; Date of clinical trial registration: 04/07/2013; Date first dyad enrolled: 15/11/2013.

Dementia care partners’ reported outcomes after adaptive riding: a theoretical thematic analysis

“…Moreover, unpaid family members (care partners) often experience stress and burden when caring for persons living with dementia (Ornstein and Gaugler, 2012). Despite these adverse outcomes, studies show participating in meaningful activities can support well-being for persons living with dementia (Oh et al , 2021) and their care partners (Gitlin et al , 2021).…”

“…Zgola (1999) defines meaningful activity as purposeful, voluntary, socially appropriate, feeling good to participants and imparting a sense of success. Meaningful activity is linked to well-being for persons living with dementia (Gitlin et al , 2021). Well-being comprised the following: positive emotions; engagement (completely absorbed in an activity); relationships; meaning (belonging and serving beyond oneself); and accomplishment (PERMA) that collectively contributes to human flourishing (Seligman, 2011).…”

Differential race effects of the tailored activity program (TAP) on dementia‐related behaviors: A randomized controlled trial

“…The trial design and Consort study flowchart were reported previously 25,26 . TAP was evaluated in a single‐blind 2‐arm randomized controlled trial conducted in Baltimore, Maryland.…”

“…TAP provides activities tailored to the interests and abilities of people living with dementia (PLWD) and instructs caregivers in their use. However, treatment effects for BPSD across TAP trials are inconsistent with some, but not all, studies reporting reductions 21–26 . In a recent trial of 250 dyads, TAP did not reduce agitation and aggression‐type behaviors, the main trial outcome, although other benefits were found 26 …”

“…However, treatment effects for BPSD across TAP trials are inconsistent with some, but not all, studies reporting reductions 21–26 . In a recent trial of 250 dyads, TAP did not reduce agitation and aggression‐type behaviors, the main trial outcome, although other benefits were found 26 …”