JMIR Publications

ABSTRACT

Background:

Estimates suggest that 6.2 million Americans aged 65 and older are living with Alzheimer’s dementia in 2021, and by 2060 that number could more than double to 13.8 million. As a result, public health officials anticipate a greater need for caregivers for persons with Alzheimer’s disease or a related dementia (ADRD), as well as support resources for both people living with dementia (PLWD) 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), an online tool for caregivers of PLWD, was developed to provide tailored support recommendations to dementia caregivers.

Objective:

The objective of this study was to formally explore the feasibility, acceptability and utility of CtP for 20 family members of PLWD within a health system over a one 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 PLWD were enrolled. The web-based CtP tool was used by caregivers and facilitated by a healthcare professional (i.e., a “senior care navigator”/SCN). Caregivers were given a 21-item review checklist to assess barriers and facilitators associated with reviewing CtP with a SCN. Following the 21-item review checklist, semi-structured telephone interviews, which included 18 open-ended questions, focused on the facilitators 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. Qualitative analysis identified four themes regarding facilitators and barriers to implementation: 1) caregiver factors, 2) SCN factors, 3) CtP tool system factors, and 4) recommendations and resources factors.

Conclusions:

Care to Plan was not only found to be feasible, but a valuable tool for caregivers seeking resources for themselves as well as their PLWD. Longer-term evaluation findings aim to generate results as to how CtP can be integrated into care plans for caregivers and how SCNs can provide additional support for caregivers of PLWD over an extended period of time.