Ethics, design, and implementation criteria of digital assistive technologies for people with dementia from a multiple stakeholder perspective: a qualitative study.

BACKGROUND: Dementia impairs the ability of people with dementia to be autonomous and independent. They need support from third parties, who should ideally respect their autonomy and independence as much as possible. Supporting people with dementia can be very burdensome for caregivers and numbers of patients increase while numbers of potential caregivers decline. Digital assistive technologies (DATs) that directly support patients or their caregivers may help bridging the increasing gap between need of support and available resources. DATs have the potential to preserve the autonomy and independence of people with dementia and promote their abilities, if they are properly designed in close interaction with future users. In our study, we focused on ethical concerns, technological requirements, and implementation criteria for DAT in general and specifically to support outdoor mobility of people with dementia. METHODS: We applied a qualitative approach and conducted a World Café (2 tables, n = 7) and an online focus group (n = 6) with people with dementia, relatives, healthcare professionals, scientists, ethics experts, and experts for digitally-assisted medical care. We descriptively analyzed the data using a content analysis approach. RESULTS: The participants reported technological (e.g., lack of Wi-Fi), financial (e.g., expensive devices or lack of budget for DATs), political (e.g., legal hurdles such as the European Medical Device Law or data protection regulations) as well as user-related hurdles (e.g., lack of digital competence) for the implementation of DAT in dementia care. Among the issues discussed were the importance of autonomy, independence, safety, privacy, and questions of decision making capacity in DAT's use. Participants identified opportunities and benefits in self-learning, situation-aware DATs and wished for dementia-friendly communities. They emphasized the value of personal interaction that should not be replaced, but rather supported by DAT. CONCLUSION: The results revealed multiple hurdles and ethical concerns for DAT use and provided recommendations for designing and implementing DATs. Further investigations are needed on the impact of DAT on personal interactions in caregiving and the role of DAT in dementia-friendly communities.

Informal Caregivers of People with Dementia in Germany: Psychosocial Characteristics and Unmet Needs.

Background: Caregivers of people with dementia living at home (CPwDh) are likely to be affected by a range of health problems. However, CPwDh are often regarded as accompanying persons and receive less attention in research and care. Little is known about this population and their needs in Germany. However, better knowledge of CPwDH is needed to design effective interventions. Objective: The objective of this report is to describe the situation of CPwDh and highlight differences based on sex and living situation. Methods: This was a cross-sectional analysis of the psychosocial characteristics of participants in the GAIN trial, a cluster-randomized, controlled intervention trial investigating the effectiveness of a care management program. A total of n = 192 CPwDh were recruited in GP offices, memory clinics or through public campaigns in the German federal state of Mecklenburg-Western Pomerania. The inclusion criteria were an age of 18 years or above, being a CPwDh, written informed consent. In a comprehensive digital assessment, psychosocial variables, burden, and care needs were assessed. Results: Partners, women, and people living in the same household represented the majority of caregivers, and their mean number of needs was 8.7. Overall, participants indicated a mild to moderate burden. There are differences in burden based on sex and living situation, with caregivers living with people with dementia showing less burden and different psychosocial demographics. Conclusions: There is a need for interventions to reduce caregivers' unmet needs in the CPwDh. Such interventions should consider differences in sex and living situation to better address individual caregiver needs.