New Ways for Better Days: Tailoring Activities for Persons with Dementia and Caregivers

Program Description

TAP is an individualized, family-centric program designed to prevent, minimize and/or manage dementia-related behavioral symptoms and reduce caregiver burden. It provides people with dementia with activities tailored to interests and abilities and trains caregivers (formal/informal) to use selected and customized activities in care routines. The program, tested in randomized trials, improves quality of life of persons with dementia, reducing and preventing behavioral symptoms, enhancing daily function, and reducing time caregivers provide hands-on care. The program, delivered or supervised by occupational therapists, involves three phases of up to 8 one hour sessions. Phase I involves novel assessments to identify preserved capabilities, executive and physical functioning and previous/current interests of persons with dementia and caregiver’s “readiness” (willingness to change their communications and use activities), and availability to use activities as well as the physical environment in which activities occur. In Phase II, caregivers are provided a written report summarizing assessment results and three “activity prescriptions” specifying activity goals, person’s abilities, and how to set up and use each activity. In Phase III, caregivers learn to modify/simplify activities for future cognitive declines and to generalize learned strategies (e.g., communication) to address other daily care challenges (bathing, dressing, transitioning from one setting to another).

Creativity

New Ways for Better Days is the only evidence-based program tested in multiple trials showing treatment effects for behavioral symptoms and caregiver burden. The program taps into interests and preserved capabilities of persons with dementia to enable enriched engagement in a range of meaningful activities and can be effective for those at any disease stage. Through activity use, caregivers derive a better understanding about dementia and its effects, that behaviors are not intentional, and hands-on ways to better support affected persons and have times to themselves. Training for health professionals is available through an engaging and informative on-line program involving six, 50 minute modules which include interactive features to keep leaners involved and enhance knowledge and skill acquisition. This is followed by two virtual trainings (up to 4 hours) involving learners from different countries/cultures and delivery settings to help them adapt TAP to their particular care contexts.

Leadership

New Ways for Better Days offers a non-drug approach to dementia care and establishes the role of occupational therapists as key members of the treatment team in behavioral management. The program has been translated into Portuguese and used in Sao Paolo, Brazil. In 2018, it will be translated into Spanish and tested in Chile. It is currently in use in other countries (England, Scotland, Italy, Hong Kong, Australia) and the United States. We are partnering with professional organizations for its dissemination and finalizing a train-the-trainers program to enable scaling up and widespread distribution. The program can be implemented in homecare, outpatient memory clinics, hospitals, adult day services, nursing homes, and assisted living facilities and augment long term care and services and caregiver supportive programs. It addresses key recommendations of the 2016 National Alzheimer’s Plan to develop, evaluate and implement new care strategies for persons with dementia and their families.

Sustainability

We have a well-developed sustainability plan involving the following components. Our on-line training program is administered by Professional Programs in the School of Nursing (SON), Johns Hopkins University which provides oversight and support for all on-line courses in SON including registration and technical issues. Second, we are developing a train-the-trainers program for those already trained in TAP to become master trainers. To date we have master trainers in Brazil, Chile, Scotland and Australia and another five master trainers in the United States. Trainers provide follow-up training after trainees complete the on-line modules. Also, trainers provide up to 3 coaching calls once trainees are using the program. We are finalizing our master trainer program now and will offer it to those who have been using the program (at least 5 completed cases). Finally, we are also developing partnerships with professional organizations to cross-market and disseminate the program.

Replicability

TAP is a replicable protocolized program with flexible delivery characteristics to enable implementation in a range of settings. Training in the program is standardized, there is a program manual, and recommended documentation forms, all developed and evaluated in previous trials. TAP has been successfully replicated in a range of settings including the home, hospital, adult day services, outpatient clinic, nursing home. Six trials have evaluated TAP in a variety of contexts and with persons with different dementia etiologies (Frontotemporal dementia, mixed dementias, Alzheimer’s disease). Thus, it is has been replicated within different delivery settings, with diverse cultural groups, and in different geographic locations.

Results/Outcomes

In various trials, TAP has been shown to reduce the number of behavioral symptoms over 4 and 8 months, reduce the frequency and severity of behavioral symptoms, reduce the level of functional dependence and need for caregiver assistance, reduce the amount of time that caregivers need to spend providing assistance. Also, the program has been shown to improve quality of life of persons with dementia and family caregivers, improve caregivers’ sense of confidence or efficacy in using activities, and the amount of time they have for themselves.