Evaluation of the Digital Alzheimer Center: Testing Usability and Usefulness of an Online Portal for Patients with Dementia and Their Carers

Abstract

BackgroundDementia 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.ObjectiveWe 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.MethodsA 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.ResultsIn 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.ConclusionsTo 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.

What is known from the existing literature about peer support interventions for carers of individuals living with dementia: A scoping review

“…In total 28 original studies were identified that tested an intervention comprising solely of peer support or had a peer support component. We examined the extent, nature and distribution of the studies included in this review and determined the following: the majority of studies ( n = 12) used a trial design including randomised controlled trials, pragmatic randomised trials, randomised controlled evaluations, randomised controlled two group design or randomised pilot studies (Charlesworth et al, ; Finkel et al, ; Gaugler et al, , , , ; Gaugler, Reese, Reese, & Mittelman, ; Hayden, Glynn, Hahn, Randall, & Randolph, ; Laakkonen et al, , ; Lai et al, ; Martindale‐Adams, Nichols, Burns, Graney, & Zuber, ; Mittelman et al, ; Núñez‐Naveira et al, ; Torkamani et al, ; Wai Tong & Lee, ; Wang & Chien, ; Wang et al, ; Winter & Gitlin, ), eight studies used a pre/post‐test design (Boots, de Vugt, Withagen, Kempen, & Verhey, ; Chenoweth et al, ; Chu et al, ; Dam, van Boxtel, Rozendaal, Verhey, & de Vugt, ; Gaugler, Hobday, et al, ; Hsu et al, ; Javadpour, Ahmadzadeh, & Bahredar, ; O'Connor, Arizmendi, & Kaszniak, ), four a quasi‐experimental design (Andren & Elmståhl, , ; Easom, Alston, & Coleman, ; Marziali & Garcia, ; Pagán‐Ortiz, Cortés, Rudloff, Weitzman, & Levkoff, ), two a quasi‐experiment with mixed methods design (Baily, Kingsyon, Alford, Taylor, & Tolhurst, ; Küçükgüçlü, Akpınar Söylemez, Yener, & Işık, ) and the final two studies used mixed methods (Hattink, Droes, Sikkes, Oostra, & Lemstra, ; McKechnie, Barker, & Stott, ).…”

“…As with the studies that found significance across all components, the studies not finding any significance at all, also demonstrated a range of multi‐component interventions. The remaining two studies (both online) (Hattink et al, ; Hayden et al, ) only assessed feasibly and acceptability of their studies and did not assess effectiveness on carer impact.…”

Advantages and limitations of virtual online consultations in a NHS acute trust: the VOCAL mixed-methods study

“…facilitating prescription ordering, 66 appointment booking 67,68 and patients' access to their online record 69 ) have demonstrated proof of concept. [70][71][72] However, such portals are often not widely used by patients beyond the research setting.…”

Digital Support Platform: a qualitative research study investigating the feasibility of an internet-based, postdiagnostic support platform for families living with dementia

“…Our current understanding of internet-based interventions is that they may alleviate outcomes such as depression, distress and improve quality of life in carers, 6 7 and recent evidence from the Digital Alzheimer’s Centre (DAC) suggests that these interventions can generally be useable and useful. 8 However, in contrast to psychological postdiagnostic interventions (eg, ref 9 ), there are relatively few examples of studies of how internet-based interventions are used in everyday settings, how they alleviate or facilitate the work associated with living with dementia and consequently how they are evaluated. These qualitative data are informative, as they reveal the difference between an intervention’s predicted use and its actual use in the home, as it is adopted to suit current care arrangements outside of a clinic or ‘lab’.…”