UnderstAID, an ICT Platform to Help Informal Caregivers of People with Dementia: A Pilot Randomized Controlled Study

Abstract

Information and communications technology (ICT) could support ambient assisted living (AAL) based interventions to provide support to informal caregivers of people with dementia, especially when they need to cope with their feelings of overburden or isolation. An e-learning platform (understAID application) was tested by informal caregivers from Denmark, Poland, and Spain to explore the technical and the pedagogical specifications, as well as evaluating the impact of its use on the psychological status of the participants. 61 informal caregivers completed the study taking part in the experimental (n = 30) or control (n = 31) groups. 33.3% of the caregivers were satisfied with the application and around 50% of the participants assessed it as technically and pedagogically acceptable. After using understAID the caregivers in the experimental group significantly decreased their depressive symptomatology according to the Center for Epidemiologic Studies Depression scale, but a possible benefit on their feelings of competence and satisfaction with the caring experience was also observed. The low scores obtained for satisfaction were highlighting issues that need to be modified to meet the informal caregivers' needs in national, social, and cultural context. Some possible biases are also considered and discussed to be taken into account in future improvements of understAID application.

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, ).…”

“…Results demonstrate that it is difficult to deduce if or what components may or may not be effective for dementia carers, with results providing a very mixed landscape in relation to the effectiveness of the differing interventions or corresponding mode of delivery. Overall, of the 36 identified research papers, ten papers reported the assessment of a psychological outcome, however, there is limited evidence on psychological wellbeing impact as significant improvement was reported in only two of these studies (Boots et al, ; Marziali & Garcia, ) both of which were online interventions; 30 research papers reported on feelings of burden/anxiety/depression of these 19 stated a significant improvement (Andren & Elmståhl, ; Chenoweth et al, ; Chu et al, ; Easom et al, ; Finkel et al, ; Gaugler, Reese, et al, ; Gaugler et al, , , ; Hsu et al, ; Javadpour et al, ; Küçükgüçlü et al, ; Marziali & Garcia, ; Núñez‐Naveira et al, ; Torkamani et al, ; Wai Tong & Lee, ; Wang & Chien, ; Wang et al, ; Winter & Gitlin, ); 20 papers provided findings from the assessment of health and well‐being, of these 11 had significant findings (Easom et al, ; Gaugler, Reese, et al, ; Hsu et al, ; Javadpour et al, ; Laakkonen et al, ; Marziali & Garcia, ; Mittelman et al, ; Torkamani et al, ; Wai Tong & Lee, ; Wang & Chien, ; Wang et al, ); six papers reported findings linked to carer satisfaction of which two produced significant findings (Andren & Elmståhl, ; Gaugler, Hobday, et al, ). Finally, 13 papers stated the findings from the assessed level of support, of these five reported significant improvement (Dam et al, ; Gaugler, Reese, et al, ; Marziali & Garcia, ; Wai Tong & Lee, ; Wang et al, ) (Figure ).…”

“…Across the 36 research papers 14 ( n = 10 face‐to‐face; n = 4 online) reported significant findings across all of their identified outcomes (Boots et al, ; Chu et al, ; Easom et al, ; Gaugler, Hobday, et al, ; Gaugler, Reese, et al, ; Gaugler et al, , ; Hsu et al, ; Javadpour et al, ; Küçükgüçlü et al, ; Marziali & Garcia, ; Torkamani et al, ; Wai Tong & Lee, ; Wang et al, ), and all contained multi‐component interventions. Ten papers ( n = 8 face‐to‐face, n = 2 online) demonstrated significant effectiveness across some of their outcomes (Andren & Elmståhl, ; Chenoweth et al, ; Dam et al, ; Finkel et al, ; Gaugler et al, ; Laakkonen et al, ; Mittelman et al, ; Núñez‐Naveira et al, ; Wang & Chien, ; Winter & Gitlin, ) and 10 did not identify any significant effectiveness across any outcomes ( n = 6 face‐to‐face; n = 4 online) (Andren & Elmståhl, ; Baily et al, ; Charlesworth et al, ; Gaugler et al, ; Laakkonen et al, ; Lai et al, ; Martindale‐Adams et al, ; McKechnie et al, ; O'Connor et al, ; Pagán‐Ortiz et al, ). 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.…”

Bringing older informal caregivers and recipients to the digital age: Experiences of using digital services

“…Their literature review suggest that diverse forms of support are the most efficient way of achieving social support and welfare goals. According to earlier studies [20,21] informal caregivers found respite in online communities and received emotional support through them. This study's findings on the necessity of peer support reinforce earlier findings.…”

“…Studies show that elderly people also used IC technology in maintaining family relationships and as sources of information on health bulletins as well as various activities [1,16,21].…”