Delivering Personalized Recommendations to Support Caregivers of People Living With Dementia: Mixed Methods Study

Abstract

Background Estimates suggest that 6.2 million Americans aged ≥65 years are living with Alzheimer dementia in 2021, and by 2060, this number could more than double to 13.8 million. As a result, public health officials anticipate a greater need for caregivers of persons with Alzheimer disease or related dementia and support resources for both people living with dementia and their caregivers. Despite the growing need for dementia caregiver support services, there is a lack of consensus regarding how to tailor these services to best meet the heterogeneous needs of individual caregivers. To fill this gap, Care to Plan (CtP), a web-based tool for caregivers of people living with dementia, was developed to provide tailored support recommendations to dementia caregivers. Objective The aim of this study is to formally explore the feasibility, acceptability, and utility of CtP for 20 family members of people living with dementia within a health system over a 1-month time period using a mixed methods parallel convergent design. Methods A moderately sized health system in the mid-Atlantic region was selected as the site for CtP implementation, where 20 caregivers who were family members of people living with dementia were enrolled. The web-based CtP tool was used by caregivers and facilitated by a health care professional (ie, a senior care navigator [SCN]). Caregivers were given a 21-item review checklist to assess barriers and facilitators associated with reviewing CtP with an SCN. Following the 21-item review checklist, semistructured telephone interviews, which included 18 open-ended questions, focused on the facilitators of and barriers to CtP implementation and recommendations for future implementation. Results Quantitative results suggested that 85% (17/20) of caregivers indicated that CtP was helpful and 90% (18/20) would recommend CtP to someone in a similar situation. The qualitative analysis identified 4 themes regarding facilitators of and barriers to implementation: caregiver factors, SCN factors, CtP tool system factors, and recommendations and resources factors. Conclusions CtP was found to be not only feasible but also a valuable tool for caregivers seeking resources for themselves and their people living with dementia. Long-term evaluation findings aim to generate results on how CtP can be integrated into care plans for caregivers and how SCNs can provide additional support for caregivers of people living with dementia over an extended period.

Qualitative Evaluation of Family Caregivers’ Experiences Participating in Knowledge and Interpersonal Skills to Develop Exemplary Relationships (KINDER): Web-Based Intervention to Improve Relationship Quality

“…Consistent with previous research on digital interventions among caregivers, web-based delivery of the program also appeared to be well-liked and allowed caregivers to complete activities at their convenience [ 33 , 34 ]. Multicomponent, self-administered, web-based interventions have previously been shown to improve depression and anxiety among AD/ADRD caregivers and may have broader applications in the future [ 35 ].…”

Challenges of conducting of online educational programs for family caregivers of people with dementia living at home: An integrative review

“…Eighty-five papers covering 49 studies were included (some studies were demonstrated in a series of papers). The included studies consisted of 19 RCTs [ [28] , [29] , [30] , [31] , [32] , [33] , [34] , [35] , [36] , [37] , [38] , [39] , [40] , [41] , [42] , [43] , [44] , [45] , [46] ], 10 non-RCTs [ [47] , [48] , [49] , [50] , [51] , [52] , [53] , [54] , [55] , [56] ], 4 descriptive quantitative studies [ [57] , [58] , [59] , [60] ], 4 qualitative studies [ [61] , [62] , [63] , [64] ] and 12 mixed-methods studies [ [65] , [66] , [67] , [68] , [69] , [70] , [71] , [72] , [73] , [74] , [75] , [76] ], see Appendix A . These studies were conducted in America ( n = 25), Netherlands ( n = 4), Canada ( n = 2), France ( n = 1), India ( n = 1), China ( n = 1), Australia ( n = 3), United Kingdom ( n = 2), Spain ( n = 1), Greece ( n = 1), Ireland ( n = 1), Korea ( n = 1), Iran ( n = 1) and multiple European countries ( n = 5).…”

“…First, technical problems were identified in 9 studies, such as busy signals, visual problems caused by poor contact and unclear site navigation [ 31 , 36 , 43 , 47 , 63 , 69 , 71 , 72 , 75 ]. Second, poor computer literacy of family caregivers was also a barrier to program implementation [ 38 , 65 , 68 , 69 ]. Online programs are more flexible to use for young family caregivers with internet access.…”

“…For example, the WeChat software used in the Han et al.’s study was unable to store files for long periods of time [ 49 ]. One study proposed that the inaccessibility or unavailability of some resources during the COVID-19 epidemic was also a limitation to implementing the intervention [ 65 ]. Fourth, low family caregiver recruitment rates and high dropout rates were also commonly found [ 28 , 30 , 33 , 35 , 39 , 51 ].…”

Double-duty caregivers enduring COVID-19 pandemic to endemic: “It’s just wearing me down”

“…Family caregivers faced the dual concern of keeping their vulnerable loved ones and themselves safe from COVID-19, while also experiencing limited access to acute care, primary care, home care, and social care programs. They also had reduced opportunities for social activities and experienced higher levels of sleep disturbances, fatigue, anxiety, depression, and burnout [ 28 , 29 ].…”