User-driven living lab for assistive technology to support people with dementia living at home: Protocol for developing co-creation–based innovations

Background:
Owing to no cure for dementia currently, there is an urgent need to look for alternative ways to support these people and their informal caregivers. Carefully designed interventions can answer the unmet needs of both people with dementia and their informal caregivers in the community. However, existing products, systems, and services are often too complex or unsuitable.
Objective:
This study aims to identify, longitudinally, the changing needs (as dementia progresses) of people with dementia living at home and their informal caregivers. By developing co-creation-based innovations, these changing needs will hopefully be met.
Methods:
A user-driven Living Lab design is used to structurally explore the needs over time of people with dementia (and their informal caregivers) living in the community in the North Brabant region of the Netherlands. In addition, co-creation-based innovations will be developed, tested, and evaluated by these people and their caregivers at home. All participants will complete
complaints-oriented questionnaires at 3 time-points—at the baseline, 1 year, and 2 years after they start participating. Home interviews are scheduled to explore if and how these complaints translate into participants’ specific needs or wishes. Focus groups meet on a monthly basis to further identify the needs of people with dementia and their informal caregivers and provide feedback
to the stakeholders. In the context field, participants have an opportunity to actually test the products at home and provide feedback. Quantitative outcome measurements include neuropsychiatric symptoms, cognitive decline, independence in activities of daily living, safety, and caregiver burden. Qualitative outcome measurements include feedback to the stakeholders regarding the needs of people with dementia and their informal caregivers and how these needs change over time, as well as user experiences about
the specific innovations.
Results:
Participant recruitment will start in September 2018 and is ongoing. The first results of data analyses are expected in
the spring of 2019.
Conclusions:
The overall aim of Innovate Dementia 2.0 is to facilitate person-centered innovations developed for people with dementia and their informal caregivers at all stages as dementia progresses. This should lead to newly designed concepts and innovations, which are better able to answer the needs of people with dementia and their caregivers in the community.