The Need for Person-Centered Measures for Dementia Research and Care

Abstract The importance of person-centered medical and psychosocial care has become widely recognized, but there is abundant evidence that care is not always person-centered. In 2018, the Alzheimer’s Association published their evidence-informed Dementia Care Practice Recommendations, which address nine domains all grounded in a person-centered perspective. Following that work, the Association launched LINC-AD -- Leveraging an Interdisciplinary Consortium to Improve Care and Outcomes for Persons Living with Alzheimer's and Dementia. An early effort of LINC-AD, and the focus of this symposium, examined what measures are available to guide care and assess outcomes, and the extent to which they embrace person-centeredness. The results have been disappointing. This session will highlight the importance of person-centered measures in five domains of the Dementia Care Practice Recommendations, based on comprehensive reviews of literature. Each paper, presented by LINC-AD research advisors, will examine available measures and raise questions about gaps using a person-centered lens. Katie Maslow will describe frequently used measures and identify person-centered measures that could be added to studies of alternate procedures intended to increase detection and diagnosis. Drs. Mast and Molony will discuss a person-centered approach to item development and testing for assessment. Emilee Ertle will discuss the need to measure interpersonal and contextual factors associated with behavioral expressions. Drs. Prizer and Zimmerman will compare measures of dressing ability and their person-centered components. Dr. Calkins will examine the strengths and limitations of environmental assessment tools. As Discussant, Dr. Gitlin will integrate the findings from all five presentations, suggesting directions for the future.

United States,2. CWRU School of Nursing,Cleveland,Ohio,United States Grandmothers living with or raising grandchildren who had just completed the final data point of an NIH-funded, national, behavioral RCT were asked to complete an additional data collection point to capture the effects of the Covid-19 pandemic on their families' access to healthcare and financial security. In Spring 2020, 258 grandmothers completed measures of access to healthcare and financial security (3 and 4 item composite scales), family strain, family functioning, and psychosocial and demographic variables. Financial security (Adj. R2=.52) was explained by knowing other grandfamilies; better family functioning; and fewer financial worries, unmet service needs, and depressive symptoms. Access to healthcare (Adj. R2=.24) was explained by being married, employed and having fewer financial worries and unmet service needs. Findings that family functioning, knowing other grandfamilies and depressive symptoms contributed to financial security, and that marital and employment status affect access to healthcare show the importance of support.

IMPLEMENTING AN INTERVENTION PROGRAM DURING THE COVID-19 PANDEMIC: CHALLENGES AND SUCCESSES Nancy Mendoza, The Ohio State University, The Ohio State University, Ohio, United States
During the COVID-19 pandemic, the implementation of intervention programs for grandfamilies are facing multiple challenges. In this paper, we will present some of the challenges and successes of introducing the GRANDcares Plus Project (GRANDc+) during the COVID-19 pandemic. As an intervention program, GRANDc+ has demonstrated positive outcomes for grandfamilies, such as increased satisfaction with life, knowledge of services, self-care practices, and supportive social networks. Due to the pandemic, the implementation of GRANDc+ has been met with many challenges including, training of facilitators, following CDC's COVID-19 guidelines/recommendations, and considering grandfamilies needs, concerns and safety. The pandemic has and continues to have detrimental effects on grandfamilies; this makes it more vital than ever to support grandfamilies through interventions like GRANDc+, despite what challenges we may face. Our presentation will provide insights into identifying, managing, and overcoming the challenges of implementing interventions during the COVID-19 pandemic.

THE NEED FOR PERSON-CENTERED MEASURES FOR DEMENTIA RESEARCH AND CARE
Chair: Sam Fazio Co-Chair: Sheryl Zimmerman Discussant: Laura Gitlin The importance of person-centered medical and psychosocial care has become widely recognized, but there is abundant evidence that care is not always person-centered. In 2018, the Alzheimer's Association published their evidenceinformed Dementia Care Practice Recommendations, which address nine domains all grounded in a person-centered perspective. Following that work, the Association launched LINC-AD --Leveraging an Interdisciplinary Consortium to Improve Care and Outcomes for Persons Living with Alzheimer's and Dementia. An early effort of LINC-AD, and the focus of this symposium, examined what measures are available to guide care and assess outcomes, and the extent to which they embrace person-centeredness. The results have been disappointing. This session will highlight the importance of person-centered measures in five domains of the Dementia Care Practice Recommendations, based on comprehensive reviews of literature. Each paper, presented by LINC-AD research advisors, will examine available measures and raise questions about gaps using a person-centered lens. Katie Maslow will describe frequently used measures and identify person-centered measures that could be added to studies of alternate procedures intended to increase detection and diagnosis. Drs. Mast and Molony will discuss a person-centered approach to item development and testing for assessment. Emilee Ertle will discuss the need to measure interpersonal and contextual factors associated with behavioral expressions. Drs. Prizer and Zimmerman will compare measures of dressing ability and their person-centered components. Dr. Calkins will examine the strengths and limitations of environmental assessment tools. As Discussant, Dr. Gitlin will integrate the findings from all five presentations, suggesting directions for the future.

ADDING PERSON-CENTERED MEASURES TO RESEARCH ON DETECTION AND DIAGNOSIS OF DEMENTIA Katie Maslow, Gerontological Society of America, Washington, District of Columbia, United States
In the United States, numerous studies on detection and diagnosis of dementia show that large proportions of subjects refuse initial screening tests. Moreover, among those who accept the tests, score poorly, and are therefore referred for a diagnostic evaluation, large proportions do not follow up to get the evaluation. Available data on characteristics of subjects who refuse initial screening and follow-up evaluation suggest that incorporating procedures based on person-centered concepts and practices, such as procedures that acknowledge individuals' unique characteristics and attempt to involve, enable, and empower them, could lead to more effective detection and diagnosis. Based on results of an analysis of measures used in studies conducted in the U.S. and elsewhere, this presentation will describe frequently used measures and identify person-centered measures that could be added to studies of alternate procedures intended to increase detection and diagnosis. Person-centered principles continue to redefine the nature of dementia care, but less attention has been given to integration of person-centered principles into clinical assessment and dementia research. As a result, identification of deficits and cognitive impairment tends to dominate clinical and research efforts, whereas strengths and positive characteristics need more research. This paper examines existing positive psychosocial measures of psychological wellbeing, hope, spirituality, resilience, social relationship, dignity, and at-homeness. Many of these measures demonstrate strong psychometric properties and have been identified as promising outcome measures for strengths-based studies and approaches to care. This paper will evaluate the extent to which these measures used a person-centered approach to item development and testing, and whether item content is consistent with person-centered principles. Future directions for instrument development require greater inclusion of people living with dementia and family caregivers.

PERSON-CENTERED ASSESSMENT OF BEHAVIOR CHANGES IN PEOPLE WITH DEMENTIA
Benjamin Mast, 1 Gail Mountain, 2 Ann Kolanowski, 3 Esme Moniz-Cook, 4 Margareta Halek, 5 and Emilee Ertle, 6 ,1. University of louisville, louisville, Kentucky,United States,2. University of Bradford,West Yorkshire,England,United Kingdom,3. Penn State,University Park,Pennsylvania,United States,4. University of Hull,Hull,England,United Kingdom,5. Witten/Herdecke University,Witten,Germany,6. University of Louisville,Louisville,Kentucky,United States Behavioral and psychological symptoms of dementia are increasingly being reconceptualized as expressions of distress and unmet needs. Measures that evaluate context are needed to increase our understanding of factors that influence these expressions. This review evaluated measures for two common behavioral states that are experienced as challenging for caregivers: apathy and resistance to care. A systematic literature search identified measures of apathy or resistance to care for people living with dementia. Eight measures of apathy and three measures of resistance to care were identified. Reliability and validity of these measures were evaluated using the COSMIN framework, as well as reported contextual factors within which the behavior occurs. The identified measures had fair to good reliability and validity in people living with dementia. However, available measures need to move beyond symptomatic constructs for this complex paradigm, and toward the varied interpersonal and contextual factors associated with behavioral expression. In 2018, the Alzheimer's Association set forth Dementia Care Practice Recommendations in nine domains, one being support for activities for daily living (e.g., dressing, toileting, eating/nutrition). For example, preservation of dressing independence is important for dignity, autonomy, and to decrease caregiver burden. Measurement is necessary to guide care and assess outcomes related to dressing, but availability of related measures to assess processes, structures, and outcomes of care has not been examined; more so, the extent to which the related measures are person-centered is completely unexplored territory. This session will present a critical assessment of available measures grounded in the Donabedian Model. Of 21 identified measures, 4 assessed dressing alone,