JMIR Publications

ABSTRACT

Background:

Despite the increasing interventions to support family caregivers of people with dementia, service planning and delivery is still not effective.

Objective:

Our aim was therefore to develop a digitally supported needs assessment for family caregivers of people with dementia that is feasible, time-efficient, understood by users, and can be self-completed in the primary care setting.

Methods:

The development of the unmet needs assessment was part of a cluster-randomised, controlled trial examining the effectiveness of a digitally supported care management programme to reduce unmet needs of family caregivers of people with dementia (GAIN) and was conducted in three phases. Using an iterative participatory approach with caregivers, healthcare professionals including general practitioners, neurologists, psychologists, psychiatrists, nurses, and Alzheimer Society representatives, we developed a digital self-completion unmet needs assessment focusing on caregivers’ biopsychosocial health und quality of life in connection to their caregiver responsibilities. Data were collected via group discussions, written feedback, protocols, think-aloud protocols, and interviews, and analysed thematically.

Results:

Data from informal caregivers (n=18), healthcare professionals and Alzheimer Society representatives (n=9) were collected. Thematic analysis identified two main themes: Content of the assessment and usability/handling of the digital tablet-based assessment. The feedback provided by the stakeholders led to new aspects and changes of the assessment to make it comprehensive, easy to read and to handle. The overall completion time was reduced from initial 37 to 18 minutes, which renders the assessment fit to be self-completed in waiting rooms of primary care practices or other settings.

Conclusions:

The input of the three stakeholder groups has supported the development of the assessment ensuring that all aspects considered important were covered and understood and the completion of the assessment was time-efficient and practically feasible. Further validation of the assessment will be performed with the data generated as part of the GAIN trial. Clinical Trial: ClinicalTrials.gov NCT04037501.