Improving the Quality of Life of Family Caregivers of People with Alzheimer’s Disease through Virtual Communities of Practice: A Quasiexperimental Study

Abstract

Caring for a person with dementia burdens family caregivers, and there is a close negative relationship between this burden and their quality of life (QoL). Research suggests that caregivers’ main needs are information and training about the disease and support from others experiencing the same situation, and Internet interventions hold considerable promise for meeting these needs. Virtual communities of practice (VCoPs) are Internet frameworks to share knowledge where members collaborate and achieve a sense of trust in the community. This paper seeks to evaluate the impact of participating in a VCoP (developed through an App) on the QoL of caregivers to people with Alzheimer’s. Results show QoL before and after the intervention changed significantly. The impact of VCoP on caregivers’ overall QoL is moderated by age and relation with the person with Alzheimer’s, specifically those over 65, and spouses. VCoPs allow interaction and knowledge sharing among caregivers which provide them mainly with information and support from peers helping them to meet their needs. Furthermore, caregivers’ QoL did not decrease when their relative deteriorated functionally, which could be due to the participation in VCoP. Although we found significant pre- and post differences in caregivers’ health literacy, we must report the ambiguous result that this variable only impacts on QoL’s physical domain. Participants also reported that they had a positive experience because the App was perceived to be a useful tool, because they could manage their own participation and they met peers and felt less lonely. Results suggest that participation in a VCoP impacts positively on caregivers’ QoL.

Internet-facilitated interventions for informal caregivers of patients with neurodegenerative disorders: Systematic review and meta-analysis

“…84,85 From items linking theories or constructs to interventions, 7–11 at least one theory-relevant construct was linked to the technique in four interventions 64,68,74,78 and at least one technique was linked to a theory in five interventions. 70,72,80,84,85 Examples of the theories or predictors extracted include Meleis’ theory of transition, 68 the DICE (Describe, Investigate, Create, Evaluate) approach 78 ; communities of practice model 110 and Kales’ 111 theoretical framework for reasons and management of BPSD 93 ; alongside stress, coping and adaptation paradigms 62,64,72,74,84,85,106 ; Social Learning Theory 62 and Social Cognition Theory. 70,72…”

“…• PMS 14 Romero-Mas (110), Spain this was principally via qualitative methods, with little quantitative assessment.…”

The use of digital technologies in the promotion of health literacy and the empowerment of the Informal Caregiver: a scoping review

“…The use of technologies is also referred as an intermediary for an improved quality of life (17,19). This perception of the improvement of the quality of life is boosted when the technology that is used includes multiple resources, such as, the fact that there is a public forum for community discussion with other ICs in the same region without having to leave home; a market to purchase and sell materials and equipment that is needed for providing care; and an alert system or information trackers (18, 20).…”

“…The integration of the multiple resources that are needed by caregivers daily in an app that is easy to use allowed to save time and provide help to browse without problems (20). ITCs are perceived as giving the ICs the opportunity to guide themselves and interact with other caregivers, which allows them to get to know their peers and feel less lonely (19,21).…”

Factors associated with social participation in Brazilian older adults with Alzheimer’s disease: A correlational, cross‐sectional study

“…Given the high demand placed on caregivers of older adults with dementia, their quality of life is often compromised due to the associated psychological stress and problems with physical health. Psychosocial and psychoeducational interventions as well as internet technologies for sharing experiences have proved to be beneficial for these caregivers (Gilhooly et al., 2016; Romero‐Mas et al., 2021). Based on the present findings, such interventions could also exert a positive influence on social participation in older adults with AD.…”