Development and Pilot of a Newly Developed Tool for Assessing Research Participation for Individuals with Dementia

Abstract Research supports the inclusion of individuals with mild to moderate dementia (IWDs) as study participants in providing reliable and valid self-report information about their illness experience. However, no clear guidelines or tools exist for determining study eligibility with many studies relying on brief cognitive measures (e.g., MMSE). The literature suggests not all individuals with mild/moderate dementia can participate and some individuals with severe symptoms of dementia can participate. This study piloted a new measure designed to assess whether IWDs can participate in self-report data protocols. The measure consists of 10 questions that assess relatively in-tact cognitive processes hypothesized for successful participation. Example questions include: “What is your favorite holiday?” and “Give an example of a sad occasion/event”. Questions are scored as ‘correct’ or ‘incorrect’ and summed for a total score. To examine the descriptive characteristics of the measure, IWDs (n=18) completed the measure along with the MMSE and, for some IWDs (n=12), several self-report measures. Scores on the new measure ranged from 0-10, with a M=7.61; SD=2.75. MMSE scores ranged from 2-22, with a M=13.39; SD=6.47. A significant correlation (r = .86, p< .001) was found with the MMSE, indicating a high degree of relatedness but not complete construct overlap. Results also highlight the variability of the measure, with incorrect responses ranging from 3 to 6 across participants. Additional properties of the measure will be discussed along with highlighting how study findings fit with recommendations from 2020 NIA Research Summit on Dementia Care and next-steps in refinement and testing.


CLINICAL CORRELATION OF CEREBROSPINAL FLUID TOTAL TAU LEVELS AND MMSE SCORE IN A MEMORY CLINIC.
Neil Tangal, Neeraj Tangal, Anil Nair, and Malini Nair, Alzheimer's Disease Center, Quincy, Massachusetts, United States Tau protein levels in cerebrospinal fluid are a biomarker of Alzheimer's disease. We correlated MMSE severity to CSF tau levels in a large memory clinic sample. We retrospectively analyzed data from patients attending a memory clinic in the south shore of Boston from 2010 to 2020, and had a lumbar puncture to obtain CSF Tau levels. We compiled cognitive screen data from MMSE scores. Univariate analyses used Spearman correlation as data were non-normal. A multivariate model was created including covariates of age, sex, and race. 965 patients attended the memory clinic from 2010 to 2020. 711 had available MMSE scores. 129 subjects had lumbar punctures and available CSF tau levels. Univariate analyses showed that cognition as measured by MMSE total was not correlated to total tau levels in the CSF (rho=-0.07, p>0.05), but caucasian race was inversely associated with CSF tau levels (rho= -0.217, p<0.05). In a multivariate model, tau levels in the CSF were not associated with MMSE, race, gender, or age. In a large memory clinic sample, CSF tau levels did not correlate to MMSE scores, age, race or gender.

DEMYSTIFYING GRIEF IN THE DEMENTIA DIVIDE: A CASE FOR GRIEF THERAPY IN DEMENTIA CARE
Adrienne Ione, Silver Linings Integrative Health, LLC, Tacoma, Washington, United States The results of emotional and psychological losses overlap with behavioral and psychological symptoms of dementia (BPSD) in the neuronal and structural changes in the brain. The aim of this current study was to explore the magnifying effects of COVID-19 on exacerbating residual losses, illuminating a case for using grief therapy to moderate BPSD. A case control study was conducted with people ages 65 and greater, with an established diagnosis of dementia prior to March 2020. Compared with an active control group -participants without a current dementia diagnosis who self-reported mild cognitive shifts and who also received active grief-informed therapies -offer supporting evidence of a strong factor of efficacy for including grief therapy in services offered to people living with dementia. Evidence of a continued point improvement on both the brief grief questionnaire and inventory of complicated grief, as well as decreased severity of items on NPI-Q corroborate this therapeutic recommendation. Now more than ever -as people across the globe who are diagnosed with dementia face uncertain ramifications of previous grief episodes, ones that have potentially been reignited by the flames of COVID-19 -therapists must foster safe spaces informed by novel therapeutic grief approaches. In any just society, emphasis on therapeutic techniques that allow participants to ventilate their feelings and fears, as well as promote movement along a continuum from isolation to intimacy, must prevail. People exhibiting BPSD should not be excluded from such treatments. Research supports the inclusion of individuals with mild to moderate dementia (IWDs) as study participants in providing reliable and valid self-report information about their illness experience. However, no clear guidelines or tools exist for determining study eligibility with many studies relying on brief cognitive measures (e.g., MMSE). The literature suggests not all individuals with mild/moderate dementia can participate and some individuals with severe symptoms of dementia can participate. This study piloted a new measure designed to assess whether IWDs can participate in selfreport data protocols. The measure consists of 10 questions that assess relatively in-tact cognitive processes hypothesized for successful participation. Example questions include: "What is your favorite holiday?" and "Give an example of a sad occasion/event". Questions are scored as 'correct' or 'incorrect' and summed for a total score. To examine the descriptive characteristics of the measure, IWDs (n=18) completed the measure along with the MMSE and, for some IWDs (n=12), several self-report measures. Scores on the new measure ranged from 0-10, with a M=7.61; SD=2.75. MMSE scores ranged from 2-22, with a M=13.39; SD=6.47. A significant correlation (r = .86, p< .001) was found with the MMSE, indicating a high degree of relatedness but not complete construct overlap. Results also highlight the variability of the measure, with incorrect responses ranging from 3 to 6 across participants. Additional properties of the measure will be discussed along with highlighting how study findings GSA 2020Annual Scientific Meeting Innovation in Aging, 2020 fit with recommendations from 2020 NIA Research Summit on Dementia Care and next-steps in refinement and testing.

DOES ANXIETY AFFECT PERFORMANCE ON ATTENTION TASK (DIGIT SPAN FORWARD) ON THE MOCA TEST? A CLINICAL CORRELATION STUDY
Rima Patel, 1 and Anil Nair, 2 , 1. The Alz Center, Burlington,Massachusetts,United States,2. Alzheimer's Disease Center,Quincy,Massachusetts,United States It is unknown if anxiety affects performance on Digit span forward (DSF) in memory clinic patients. We performed a retrospective chart review of memory clinic patients in the south shore of Boston from 2010 to 2020. We correlated anxiety screen data (GAD7) to Digit Span Forward (DSF) scores obtained from the MoCA. As the data were not normal, we performed univariate analyses with Spearman correlation. A multivariate regression model estimated the relationship of DSF to covariates of GAD7, age, sex, and race. We hypothesized a negative correlation between anxiety levels scored by GAD7 and DSF. H0: Digit span forward DSF ~ GAD7+Age+Sex+Race. A chart review found 965 patients attending the memory clinic between 2010 to 2020 had analyzable data. 433 patients with available DSF and 737 had available GAD7. The patients were 58.7% female and 84.7% caucasian. The mean age was 70.1±14.4, DSF 0.8±0.4 and GAD 5.6±5.7. DSF correlated significantly to race (⍴=-0.25, p=<0.001), but not to gender (⍴=0.05, p=0.149), age (⍴=-0.04, p=0.3), or GAD7 (⍴=-0.018, p=0.71). There was no significant association of DSF to race, age, gender or GAD7 on the multivariate model. In memory clinic subjects there exists no correlation between anxiety levels scored by GAD7 and DSF performance.

EARNING THE TRUST OF AFRICAN AMERICAN COMMUNITIES TO INCREASE REPRESENTATION IN DEMENTIA RESEARCH
Elena Portacolone, 1 Nynikka Palmer, 1 Peter Lichtenberg, 2 Catherine Waters, 1 Carl Hill, 3 Sahru Keiser, 1 and Julene K. Johnson, 1 , 1. University of California San Francisco,San Francisco,California,United States,2. Wayne State University,Detroit,Michigan,United States,3. Alzheimer's Association,Chicago,Illinois,United States Black/African American populations are underrepresented as participants in dementia research. A major barrier to participation of African American older adults in dementia research is a tendency to distrust research institutions owing to a legacy of racism. Building on the Ford framework, the objective of our study was to examine factors that influence participation in dementia research among African American older adults and caregivers, with an emphasis on understanding factors related to trust. Data were collected from 10 focus groups with African American older adults (n=91), 5 focus groups with caregivers (n=44), and interviews with administrators of community-based organizations (n=11), and meetings with our Community Advisory Board. Inductive/ deductive content analysis was used to identify themes. The results identified an overall tension between distrust of researchers and a compelling desire to engage in dementia research. This overarching theme was supported by six themes that provided insights about the multiple layers of distrust, as well as expectations about the appropriate conduct of researchers and academic institutions. Strong commitment to the community was identified as a priority. The findings suggest that a paradigm shift is needed to increase the representation of African Americans in dementia research. In this new paradigm, earning the trust of African American communities becomes a systemic endeavor, with academic, state and national institutions deeply committed to earning the trust of African American communities and guiding researchers in this endeavor. The findings also generated actionable recommendations to help improve representation of African American older adults in dementia research. Kara Cohen, Tracy Mitzner, and Patricia Griffiths, Georgia Institute of Technology, Atlanta, Georgia, United States Individuals with Mild Cognitive Impairment (MCI) may have limited access to intervention programs that support their mental and physical health. The COVID-19 pandemic has put them at an even greater risk of not having access to such programs. While there is currently no cure, there is growing evidence that intervention programs may attenuate the progression from MCI to dementia, particularly those which 1) have potential to reduce the level of cardiovascular risk factors, 2) employ cognitively stimulating activities, and 3) create opportunities for social interaction (Petersen, Lopez, Armstrong et al., 2018;Wayne, Yeh, & Mehta, 2018;Mortimer, Ding, Borenstein et al., 2012). Many mind-body interventions, such as tai chi, yoga, and mindfulness classes, contain these three elements and have been shown to benefit individuals diagnosed with MCI, including improving cognition (e.g., Wells, Kerr, Wolkin, et al. 2013;Yang, 2016). Tele-technology (i.e., technology that supports communication between people who are not co-located) can aid in overcoming the logistical barriers by bringing instructors and interventions to these individuals to help them stay engaged and attend activities more frequently from the comfort and convenience of their home. We will present recent findings from a user study with 8 stakeholders (4 subject matter experts, 2 individuals with MCI, 2 care partners) to assess barriers and facilitators to using tele-technology to bring instruction of mind-body interventions to individuals diagnosed with MCI. This poster will present guidelines for delivering such interventions based on our findings from the user study, including safety and training protocols.

INFLUENCES OF DEMENTIA ON LONG-TERM SURGICAL OUTCOMES IN OLDER ADULTS AFTER HIP FRACTURE
Tingzhong (Michelle) Xue, 1 Eleanor McConnell, 2 Chiyoung Lee, 1 Hideyo Tsumura, 3 Sijia Wei, 3 and Wei Pan, 1 1. Duke University,Durham,North Carolina,United States,2. Durham,North Carolina,United States,3. Duke University School of Nursing,Durham,North Carolina,United States Older adults with dementia are more prone to have adverse health outcomes following hip fracture surgery. However, individuals with dementia and hip fracture are older and have more co-morbidities; these baseline