Living With Dementia: Flipping Stigma on Its Ear

Abstract The language of social citizenship has emerged in the academic literature as one way of shifting the discourse to counter persistent problems of stigma and social exclusion for people with dementia. What this means and how it is experienced however from the perspective of those with dementia remains unclear. As part of a larger Participatory Action Research (PAR) study, an Action group of people with dementia began meeting in June 2019. The group now consists of ten members and meets monthly. The first task of the Action group was to assist in developing a more refined and practical understanding of the construct of social citizenship. Facilitated discussions were guided by the following questions: What are experiences of social citizenship by people with dementia? What kinds of practices and relationships promote the capacity of people with dementia to experience themselves as social citizens? Emerging findings indicate that the stigma is readily identified as a dominant aspect of the experience of living with dementia which needs to be ‘flipped on its ears’. Strategies for countering stigma include recognizing how language can both facilitate and block change, acknowledging dementia as a time of both loss and significant growth, remaining visible as a whole person – equal and also different - and maintaining active participation in one’s own life. These themes tie directly to the components identified in the academic literature of citizenship. However, members of the Action group were clear that the language of social citizenship is neither empowering nor strategic.

important to understand to support the self-determination of older adults who may consider MAID.Contemplating involvement in MAID care is complex with both numerous factors influencing practitioner choice.Practitioners require care options, safe passage, respect, model of care clarity, removal of practice barriers, open conversations, enhanced education opportunities and time to facilitate safe, supportive work environments and client care.

FACTORS RELATED TO WORKPLACE WELL-BEING: OCCUPATIONAL HEALTH AND SAFETY OF OLDER WORKERS IN HONG KONG
Vincent Lee, Daniel W. L. Lai, Kin Cheung, Calvin Luk, Xue Bai, Jessica J. Li, and Joan Wu, The Hong Kong Polytechnic University, Kowloon, China As Hong Kong is undergoing rapid population ageing over the past few decades, and this trend is expected to persist due to low fertility rates and extended life expectancy.This trend has significant implications for Hong Kong's labor market and workforce.This study aims to gain a better understanding of the experiences, needs, and definitions of older workers in Hong Kong.It helps to draw attention to issues of occupational safety and health (OSH) risks and help identifying and promoting strategies and interventions for effectively supporting the ageing workforce in the workplace.The major objective of this research is to identify the OSH problems and challenges perceived by the older workers, employers and other stakeholders.Both quantitative and qualitative research methods are applied.A qualitative study with focus groups and individual in-depth interviews have been conducted with a representative sample of 70 stakeholders, including employees, employers, representative of labour unions, policymakers, NGO representatives and researchers in the related disciplines.We obtained their views on age-related changes within the older workforce and how such changes would affect their work ability, the OSH issues facing the older workers in different industries, and the facilitators and barriers associated with remaining in or joining the labour force.Feasible intervention strategies for effectively supporting the ageing workforce in the workplace are also being identified.

LIVING WITH DEMENTIA: FLIPPING STIGMA ON ITS EAR
Deborah O'Connor, 1 Alison Phinney, 1 Jim Mann, 2 Habib Chaudhury, 3 Kishore Seetharaman, 3 Ania Landy, 4 and Malcolm Paulina, 5 1.University of British Columbia,Vancouver,British Columbia,Canada,2. University of Victoria,Surrey,British Columbia,Canada,3. Simon Fraser University,Vancouver,British Columbia,Canada,4. University of British Columbia,Vancouver,United States,5. University of British Columbia,Vancouver,Canada The language of social citizenship has emerged in the academic literature as one way of shifting the discourse to counter persistent problems of stigma and social exclusion for people with dementia.What this means and how it is experienced however from the perspective of those with dementia remains unclear.As part of a larger Participatory Action Research (PAR) study, an Action group of people with dementia began meeting in June 2019.The group now consists of ten members and meets monthly.The first task of the Action group was to assist in developing a more refined and practical understanding of the construct of social citizenship.Facilitated discussions were guided by the following questions: What are experiences of social citizenship by people with dementia?What kinds of practices and relationships promote the capacity of people with dementia to experience themselves as social citizens?Emerging findings indicate that the stigma is readily identified as a dominant aspect of the experience of living with dementia which needs to be 'flipped on its ears'.Strategies for countering stigma include recognizing how language can both facilitate and block change, acknowledging dementia as a time of both loss and significant growth, remaining visible as a whole person -equal and also different -and maintaining active participation in one's own life.These themes tie directly to the components identified in the academic literature of citizenship.However, members of the Action group were clear that the language of social citizenship is neither empowering nor strategic.

QUALITATIVE INTERVIEW ANALYSIS: UNPACKING PACKED INTERVIEWS
Michelle Silver, University of Toronto, Toronto, Ontario, Canada Retirement is an ever-evolving, dynamic, and complex social construct we associate with the end of one's career.Exploring what retirement means to different people can contribute to a better understanding of the implications of this important transition at the individual and societal level.However, sifting through participants stories is not always a straightforward endeavor, particularly in the case when participants have something to hide.This paper examines the value of qualitative research methods in unpacking complex personal narratives.As the landscape surrounding mature workers' experiences continues to change, this paper extends policy debates about retirement, as well as scholarly conversations about the richness and complexity of qualitative research.

ASSOCIATION BETWEEN FRAILTY AND DEVELOPMENT OF ALZHEIMER'S DISEASE-RELATED DEMENTIAS
Chih-Ying Cynthia Li, Brian Downer, Lin-Na Chou, Kenneth Ottenbacher, Kyriakos S. Markides, and Soham Al Snih, The University of Texas Medical Branch at Galveston, Galveston, Texas, United States Frailty is associated with an increased risk for Alzheimer's disease and related dementias (ADRD).However, this association has not been investigated in older Mexican Americans; a population that is high-risk for frailty and ADRD.This study investigated the association between frailty and the development of ADRD over 9-year period.We analyzed 860 Mexican Americans ≥76 years old of the Hispanic Established Populations for the Epidemiological Study of the Elderly (Hispanic-EPESE) who have been linked with Medicare claims data.Survey data from Wave 6 (2007/08) was used to categorize participants as frail (either pre-frail or frail) or non-frail according to the Fried phenotype.The main outcome was ADRD diagnosis after Wave 6 interview.ADRD status was determined using the Chronic Conditions Segment of the Master Beneficiary Summary File.We estimated ADRD disease-free probability during 2007-2016 using midpoint of interval data method stratified by frailty status.Mean age of the study sample was 83.2 years (SD=4.4)and 59.3% were female.We found individuals who were frail had less ADRD-free months (46.5;SD= 36.5-52) compared to those who were non-frail (66.0;SD= 47.5-120).Individuals with a score of less than 21 points on the Mini Mental Status Exam had greater risks of ADRD development (Odds Ratio=1.35,95% CI= 1.05-1.74)compared to their counterpart, after controlling mortality as a competing risk.Our results suggest being pre-frail, frail or cognitively impaired are risk factors for ADRD in community-dwelling older Mexican Americans.Physical and psychological suffering are interrelated and should be assessed together as part of palliative care delivery.We aimed to describe the overlap of pain and depressive symptoms among long-stay nursing home (NH) residents with advanced Alzheimer's disease and related dementia (ADRD), and to determine the incidence of pain and depressive symptoms.We conducted a retrospective study of a US national sample of fee-for-Service Medicare beneficiaries who became long-stay NH residents in 2014-2015, had two consecutive quarterly Minimum Dataset assessments (90 and 180 days +/-30 days), and had a diagnosis of ADRD in the Chronic Condition Warehouse and moderate to severe cognitive impairment (N= 92,682).We used descriptive statistics and Poisson regression models to examine the incidence of each symptom controlling for age, sex, and concurrent hospice care.Sub-groups with self-reported and observer-rated symptoms (pain/PHQ-9) were modelled separately, as were those switching between the two.The prevalence of depressive symptoms was low (5.7%), while pain was more common (18.2%).Across various subgroups, 2% to 4% had both pain and depression, but between 20% and 25% were treated with both antidepressants and scheduled analgesia.Depressed residents at baseline had an incidence rate ratio (IRR) of pain of 1.2 at the second assessment, while the residents with pain at baseline had an IRR of depressive symptoms of 1.3 at the second assessment.Our results support the expected relationship between pain and depressive symptoms in a national sample of long-stay NH residents with advanced ADRD, suggesting the need for simultaneous clinical management.

OVERLAP OF PAIN AND DEPRESSION AMONG NURSING HOME RESIDENTS WITH ADVANCED ALZHEIMER'S DISEASE AND RELATED DEMENTIA
Emmanuelle Belanger, 1 Richard Jones, 2 Gary Epstein-Lubow, 2 and Kate Lapane, 3 1. Brown University School of Public Health, Providence, Rhode Island, United States, 2. Brown University, Providence, Rhode Island, United States, 3. UMass Medical School, Worcester, Massachusetts, United States