JMIR Publications

ABSTRACT

Background:

Alzheimer’s disease and related dementias are debilitating and incurable diseases. Persons with dementia and their informal caregivers experience high rates of emotional distress and negative health outcomes. To increase access, there is a need for technologically informed psychosocial interventions which target the dyad, together.

Objective:

We are developing the Toolkit for Experiential well-beiNg in Dementia (TEND), a dyadic, “bio-experiential” intervention for persons with dementia and their caregivers. In this paper, we outline the protocol and conceptual model for intervention development and partnership with design and development experts.

Methods:

We followed the NIH Stage Model (Stage 1A) and supplemented the model with principles of user centered design. Steps include: 1. Understanding user needs, goals, and strengths, 2. Developing and refining the prototype, and 3. Observing user interactions with the prototype. We engaged in these steps with methodology and definition synthesis, stakeholder focus groups, and beta testing workshops.

Results:

Key takeaways from the focus groups include balancing individualization and the dyadic relationship and avoiding confusing stimuli. Feedback informed the beta testing workshops; data has not yet been formally analyzed and will reported in future publications.

Conclusions:

Technological interventions, particularly “bio-experiential” technology, can be used in dementia care to support emotional health among persons with a diagnosis and caregivers. Here, we outline a collaborative intervention development process through a research and design and development partnership.