Background: Dementia is a progressive and highly disabling neurodegenerative disease that will likely become highly prevalent in the future due to the globally aging population. To improve health care efficiency and quality for dementia care, eHealth could help with, for example, an online portal, such as the Digital Alzheimer Center (DAC) of the Vrije Universiteit Medical Center Amsterdam. It provides up-to-date disease information, peer-to-peer contact, and methods for contacting the hospital and health professionals.
Objective: We aimed to investigate the usability and usefulness of the DAC for patients with dementia and carers to get insight into the feasibility and value of this eHealth app in dementia care and to recommend potential improvements.
Methods: A descriptive study among patients, carers, and health care professionals was performed. Mixed methods were used, consisting of observations (n=10, 4 people with dementia, 6 carers), an online survey (n=287; 88 patients, 199 carers), and semistructured interviews (n=18; 6 patients, 6 carers, 6 health care professionals). During the observations, participants performed a set of five different prescribed tasks on the portal. Speed, number of errors, and navigation were noted. The online survey aimed to assess users' opinions on the portal's usability and usefulness. Semistructured interviews were conducted in a subsample of patients, carers, and health care professionals to gain more in-depth information.
Results: In the usability assessment, eight categories of errors were distinguished, of which three were of critical, two of medium, and three of low severity. In the survey, 45% (40/88) of the patients and 53% (105/199) of the carers indicated they used the portal. In all, 33% (12/36) of patients and 61% (62/102) of carers found it easy to learn to work with the portal. Most considered the DAC generally useful: 65% (17/26) of patients and 78% (67/86) of carers found the DAC useful, especially for understanding dementia (patients: 64%, 16/25; carers: 62%, 53/86). In the semistructured interviews, the site was generally rated positively on usability and usefulness and being well designed. People with dementia and carers indicated it helped them to understand and deal with dementia.
Conclusions: To our knowledge, this is the first study investigating the usability and usefulness of an Internet portal especially designed for people with dementia and their carers. An online patient portal could be a useful means to help to support patients and carers in dealing with dementia: the majority of users positively evaluated usability and usefulness of the portal, and appreciated the information on it. However, only a minority of patients found it easy to work with the portal. Good design and frequent usability testing is essential to offer a good online portal.
Keywords: Alzheimer disease; dementia; eHealth; electronic health record; patient portal.