Development and feasibility of Inlife: A pilot study of an online social support intervention for informal caregivers of people with dementia

Abstract

BackgroundInformal caregivers of individuals with dementia have an increased risk to face social isolation due to progression of the disease. Online social media interventions might offer a new opportunity to increase access to social support and enhance positive interactions and openness in dementia care networks.ObjectiveThis explorative pilot study describes (1) the development of an online social support intervention Inlife, and (2) the evaluation of the feasibility of this intervention and the measurements to assess its effectiveness.MethodsThe Medical Research Council (MRC) framework guided the development of the online social support intervention. This is a stepwise approach that integrates potential users’ views with the development and validation of the program content. The program was developed by combining (1) individual caregiver interviews (n = 10), (2) focus group sessions with experts and web designers (n = 6), and (3) individual think-aloud tests (n = 2). Subsequently, a pilot study with informal caregivers was conducted (n = 25) to examine the program’s feasibility and preliminary effectiveness. Online self-report measures were completed at baseline and at four follow-up time points.ResultsIn total, 23 participants completed the newly developed Inlife intervention. Despite the high number of low-active users (17/23, 73%), Inlife had a good feasibility score of 7.1 (range: 1–10). The Calendar and Timeline were used most frequently and contributed to better care coordination and positive interactions.ConclusionsAlthough the Inlife platform received a sufficient feasibility rating, the uptake was not optimal. Therefore, the Inlife platform was adapted to limit the number of low-active users and improve user friendliness. Recommendations for additional treatment adherence were provided. The development according to the MRC framework and the sufficient feasibility rating of Inlife formed the basis for a future effectiveness study.

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

“…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 ).…”

“…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, ).…”

“…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.…”

Recovery Intervention to Promote Social Connectedness through Social Recreational Programs for Persons with Dementia: A Critical Analysis

“…Caring for a person living with dementia is also a demanding task that can lead to social isolation. Informal caregiving is regarded as a rewarding task, however; it can have a negative impact on a caregiver's well-being and quality of life [16]. Social recreational programs are increasingly becoming an essential intervention that can help promote the engagement of persons with dementia and their caregivers in the participation of social activities and involvement in community services [17].…”

“…This chapter examined the impact of social isolation on persons living with dementia and their caregivers. Researchers found that the risk for social isolation increases with age, and older people with dementia are particularly more vulnerable for developing loneliness and depression as a result of social isolation [16]. For instance, researchers have examined the negative emotional impact, such as loneliness as a result of the levels of social isolation in the lives of the persons with dementia and their carers [14,18].…”