A standardized process in the electronic health record to identify and recruit family and other unpaid caregivers of Veterans for a caregiver survey study (Preprint)

BACKGROUND Most efforts to identify caregivers for research use passive approaches like self-nomination. We describe an approach where the EHR can help identify, recruit, and increase diverse representation of caregivers. OBJECTIVE Few health systems have implemented systematic processes to identify caregivers. We aimed to evaluate an electronic health record (EHR) algorithm for identifying Veterans with caregivers. METHODS We identified initial cohorts of Veterans likely to need supportive care from friends or family based with pre-defined EHR referrals for home and community care. Veterans were contacted assess whether the Veteran had an unpaid caregivers; unpaid caregivers were then contacted and offered enrollment in a caregiver survey. We compared Veteran characteristics from the EHR across these referral, screening, and recruitment groups using descriptive statistics and logistic regression models. RESULTS Of 12,212 Veterans identified through EHR referrals, 2,134 (17.4%) were selected for screening and 1,367 (11.2%) answered phone screening; 813 (60%) of those screened had a caregiver, and 435 (53%) caregivers participated in a survey. Married veterans had increased odds of having a caregiver (adjusted OR 2.63 [95%CI 1.65-4.24]) or had an adult day health care referral (adjusted OR 3.06 [95%CI 1.38 – 7.76]) or a respite care referral (adjusted OR 2.21 [95%CI 1.45-3.44].) Caregivers of Veterans with dementia had increased odds of participating in the survey (adjusted OR 1.78 [95%CI 1.20-2.65]). CONCLUSIONS The EHR algorithm process is systematic, resource intensive, and imperfect. Sixty percent of successfully screened Veterans had an unpaid caregiver. Implementing discrete caregiver fields in the EHR would support more efficient systematic identification of caregivers. CLINICALTRIAL ClincalTrials.gov Identifier: NCT03474380.

Creating Stories Using TimeSlips With People Living With Dementia

TimeSlips is an award-winning, non-pharmacologic, creative storytelling intervention designed specifically for individuals living with dementia by Anne Basting. As part of the NextGen pilot program, George Mason University implemented TimeSlips at a dementia-specific adult day health care center with undergraduate and graduate students trained as facilitators. They worked with two different populations living with ADRD – an early-stage group and a moderate- to late-stage group. Students who participated reflected upon their experiences and noted that they learned so much about the importance of open-ended questions and accepting even one-word answers. One student stated: “This makes so much sense, as I have noticed participants take these open-ended questions and deliver beautifully unexpected and clever responses.” The implementation was different for these two groups, and our analysis of the content and process indicate that consistency and person-centeredness are key to participants’ expression of pride and joy in their accomplishments.

A Qualitative Analysis of the Delivery of Person-Centered Nutrition to Asian Americans With Dementia in the Adult Day Health Care Setting

Adult day service centers (ADSCs) provide community-based long-term care, including meals, to racially diverse older adults, 47% of whom have dementia and consequently experience elevated nutritional risk. We examine nutritional behaviors for Chinese and Vietnamese persons living with dementia (PLWD) in ADSCs and evaluate the extent to which ADSCs provide person-centered nutritional care. Multi-stakeholder interviews were conducted. Data were coded using Dedoose and analyzed using Braun and Clarke’s six-step method. The Model for the Provision of Good Nutritional Care in Dementia guided analysis. Barriers to food intake included distracting meal environment, rigid mealtimes, and excessively restrictive diets. Conversely, peer relationships, culturally tailored meals and celebrations, and consistent staff assisting with feeding benefited PLWD. ADSCs can support healthy nutritional behaviors and quality of life among PLWD through person-centered nutritional care. To optimize nutritional services, further exploration is needed with respect to the ADSC environment, users’ culture and ethnicity, and liberalized diets for PLWD.