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

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.

Digital technologies to support people living with dementia in the care home setting to engage in meaningful occupations: protocol for a scoping review.

BACKGROUND: People living with all stages of dementia should have the opportunity to participate in meaningful occupations. For those living in care homes, this may not always occur and residents may spend significant parts of the day unengaged, especially those living with more advanced dementia. Digital technologies are increasingly being used in health care and could provide opportunities for people living with dementia (PLWD) in care homes to engage in meaningful occupations and support care staff to provide these activities. With technology advancing at a rapid rate, the objective of this scoping review is to provide an up-to-date systematic map of the research on the diverse range of digital technologies that support engagement in meaningful occupations. In particular, focus will be given to barriers and facilitators to inform future intervention design and implementation strategies, which have not yet been clearly mapped across the full range of these digital technologies. METHOD: A scoping review will be conducted to systematically search for published research using a comprehensive search strategy on thirteen databases. Published, peer-reviewed studies that focused on PLWD in the care home setting and assessed any form of digital technology that supported a meaningful occupation will be included. All methodologies which meet the criteria will be included. Data will be extracted and charted to report the range of digital technologies, underlying mechanisms of action, facilitators and barriers to implementation. DISCUSSION: Mapping the range of technologies to support PLWD to engage in meaningful occupations will identify gaps in research. The systematic search will include a diverse range of technologies such as software to enhance care planning, tablets devices, smartphones, communication robots and social media platforms, rather than focussing on a specific design or interface. This will enable comparison between mechanisms of action, barriers and facilitators to implementation which will be useful for future research and intervention design. TRIAL REGISTRATION: Open Science Framework https://doi.org/10.17605/OSF.IO/7UDM2.

Enhancing caregivers' understanding of dementia and tailoring activities in frontotemporal dementia: two case studies.

PURPOSE: The purpose of this study is to describe the intervention process and results of the Tailored Activities Program (TAP) in two people diagnosed with Frontotemporal Dementia (FTD). METHOD: TAP is an occupational therapy (OT) community-based intervention program that prescribes personalised activities to reduce difficult behaviours of dementia. The OT works with carers over a 4-month period (assessment, activity prescription and generalisation of strategies). Study measures were collected (blind researcher) pre- and post-intervention: cognition, functional disability, behavioural symptoms and Caregiver Confidence and Vigilance. RESULTS: A 51-year-old woman with behavioural-variant FTD could consistently engage in more activities post-intervention, with scores indicating improvements to behaviour, function and caregiver confidence. A 63-year-old man with semantic variant FTD engaged well in the prescribed activities, with scores reflecting reduced carer distress regarding challenging behaviours and improved caregiver vigilance. CONCLUSIONS: TAP is efficacious in FTD, allowing for differences in approach for FTD subtype, where behavioural symptoms are very severe and pervasive. IMPLICATIONS FOR REHABILITATION: The Tailored Activities Program is an intervention which can be tailored to account for unique behavioural and language profiles inherent across frontotemporal dementia (FTD) subtypes. Maintaining a flexible approach when applying an intervention in FTD allows for tailoring to individual case variability within FTD subtypes.