Table 4 Summary of theme, feedback and recommendations

Benefits of participating in connected health dementia research

• People were interested in how connected health research could benefit prospective participants and/or others.

• Information provided to prospective participants should include a) prospective benefits to individual participants and future patients and b) information on what would happen if researchers picked up something irregular, indicating a potential health problem.

• People expected researchers to intervene if devices picked up clear signs of treatable health problems requiring medical attention.

Device wearability

• Individuals varied in terms of which devices they found most tolerable, useful and aesthetically pleasing to wear.

• More than one type of device should be purchased, with a variety of straps and mounts in different colours, sizes and materials*.

• People preferred devices that were low maintenance and robust.

• Devices to be worn for longer periods should be waterproof and should have a long-life battery*.

• Some concerns that devices might draw unwanted attention or reveal an individual’s health status.

• Devices should be unobtrusive, either passing for a wristwatch or be capable of being worn discreetly elsewhere*.

Data security, usage and storage

• People generally trusted University researchers to protect personal and device data and treat it confidentiality.

• Software and devices used (inc. any associated 3rd party software applications) should provide the necessary security to protect personal data and ensure privacy*.

• People accepted that using certain devices for research might entail sharing data with commercial companies, but expected to be told upfront.

• Information provided to prospective participants should include information on how data is transferred between the device, researchers and any third parties.

Technology set-up and support

• Few of those living with dementia and their carers had access to smartphones and/or tablets of their own.

• A stock of phones and/or tablets should be purchased to enable people who do not own their own suitable device to participate*.

• Some people required a high level of support to set up and use devices and applications running on smartphones and/or tablets.

• Set up of devices should include an offer of in-person technical support to assist with device set up, check-ups, maintenance and troubleshooting.

Retention and engagement

• Feedback on progress and outcomes could be an incentive for wearing devices for longer, making people feel valued and engaged.

• Researchers should offer participants feedback on study progress and outcomes throughout the study in a choice of formats.

• Some people who acted as ‘testers‘ were unable to tolerate certain devices, whilst others unexpectedly enjoyed wearing them.

• Researchers should consider offering a trial period in advance of the research, without obligation to participate in the study.

• Carers were deeply involved in the everyday routines of people living with dementia.

• Researchers should offer to involve carers throughout the process of recruitment, follow ups and dissemination.