Dementia, stigma, health and wellbeing - are there connections? Corporate partnerships Translating evidence Research partnerships
Partner logo here Dementia, stigma, health and wellbeing - are there connections? Elizabeth Beattie (QUT, DCRC:CC) Barbara Horner (Curtin University, Centre for Research on Ageing) David Wellman (QUT, DCRC:CC) Sandy Burgener (School of Nursing, University of Illinois at Chicago) Wendy Moyle (Griffith University, DCRC: CC)
Partner logo here What is stigma? Goffman (1963):... an attribute that is deeply discrediting and that reduces the bearer from a whole and usual person to a tainted discounted one. Link & Phelan (2001): Stigma is the convergence of interrelated components. Stigma exists when the following elements occur together in a power situation (social/economic/political) that allows them: Labelling Stereotyping Separation Status loss and discrimination
Partner logo here The Double Whammy plus stigma of dementia Dementia is a mental illness (stigma associated with mental illness) Most people diagnosed with dementia are older (stigma associated with ageing) One extra Family members can feel stigmatised by having a relative with dementia (stigma by association)
Research Findings re Perceived Stigma Little research on stigma associated with dementia Perceived stigma and mental illness Higher depressive symptoms Poorer physical health Lower self-esteem Lower life satisfaction Increased anxiety Lower perceived control Higher self-deprecation Lower self-worth Impact on social behaviours (avoidance, less trusting, fewer social supports increased dependence on household members) (Markowitz, 1998; Link 1987; Link et al, 1999, 2001)
Stigma and dementia findings Impact of stigma on psychosocial wellbeing is in the early stage (Milne, 2010) General population study in Aus (N = 616, 40-65 yrs), negative affective responses when asked How would you feel if you found out you had dementia? (anxiety, depression, shame, humiliation) (Phillipson, Magee et al, 2011) Stigma of family carers associated with greater care burden (Werner, Mittleman, Goldstein & Heinik, 2011)
The study Partial replication of US study Perceived stigma and relationship to health and wellbeing N = 19 dyads: person with memory loss aged 65 yrs + living in the community, and primary family carer Longitudinal study: 4 interviews over 18 months (0, 6,12,18) Participant dyads living within 100km of Brisbane and Perth respectively
Person with Dementia Tools Mini Mental State Exam (MMSE) [predictor var.] Stigma Impact Scale (SIS) (Neurological impairment) Geriatric Depression Scale (GDS) Personal Control Inventory mastery subscale (PCI) Medical Outcomes Study SF-36 health subscale (MOS) Rosenberg s Self-Esteem Scale (SES) Duke Social Support Index (DSSI) Recreational and Social Activities measure (RSA) Rating Anxiety In Dementia scale (RAID)
Tools Carer Clinical Dementia Rating Scale (CDR) [predictor var.] Family Knowledge of Alzheimer s Test (FKAT) [predictor var.] Stigma Impact Scale - caregiver (SIS) Revised Memory and Behaviour Problems Checklist (RMBPC) Recreational and Social Activities measure (RSA)
How did we measure perceived stigma? Stigma Impact Scale: 24 statements measuring 4 aspects of the stigma experience: Financial insecurity (3 items) Social rejection (9 items) Internalised shame (5 items) Social isolation (7 items) Example items:(strongly disagree Strongly agree; 4-point scale) I feel others avoid me because of my impairment. I feel some friends have rejected me because of my impairment. I do not feel I can be open with others about my impairment. I feel a need to keep my impairment a secret
Person Dem. Male n Participant demographics Sex Age in yrs Married Female n M SD n 13 6 78.95 6.13 15 Carer 5 14 71.53 8.80 16* Persons with dementia diagnosis n = 12 Diagnosis Alzheimer s (n = 8) Frontal lobe (n = 1) Mixed diagnosis (n = 1) Unsure/missing (n = 2) Months since diagnosis M = 18.68 SD = 17.90 Months since memory problems first noticed M = 35.25 SD = 30.45 Persons without dementia diagnosis n = 7 Months since memory problems first noticed M = 33.00 SD = 44.39 * 15 carers were married to the person with memory loss; 3 carers were daughters; 1 carer was a divorced ex-partner.
Results: Stigma Impact Scale (SIS) Person memory loss Financial Insecurity M (SD) 1.89 (1.85) Carer 2.37 (1.86) Social Rejection M (SD) 13.42 (4.93) 12.95 (4.98) Internalised Shame M (SD) 8.42 (2.59) 7.53 (2.93) Social Isolation* M (SD) 13.47 (4.09) 10.89 (3.74) Total Scale M (SD) 37.21 (10.36) 33.74 (12.25) Scale range 0 12 0 36 0 20 0 28 0 96 * Significant difference between People with memory loss and carers for the Social Isolation subscale (t[36] = 2.03, p = 0.05)
Correlations between Person with Dementia Stigma Impact Scale and predictor variables Predictor Variables Pearson s r Mini Mental State Examination (MMSE) -.10 Clinical Dementia Rating scale (CDR).34 Family Knowledge of Alzheimer s Test (FKAT).37
Correlations between predictor and Outcome variables outcome variables Person SIS Carer SIS MMSE FKAT CDR RAID (anxiety).76 c.44.06.37.19 SES (self-esteem) -.72 b.13.23 -.28 -.53 a MOS-Physical health -.68 b -.29.03 -.43 -.34 GDS (depression).63 b.02 -.41.49 a.60 b PCI (personal control) -.51 a -.46 a -.08 -.33 -.25 RSA: PwML (activities) -.05.61 b.50 a -.07 -.44 DSSI Total (social support) -.31.15.06.23 -.02 Size of support network -.26.38.23.32 -.08 Social support -.70 b -.18 -.06 -.10 -.17 Functional support.05 -.05 -.11.08.11 a p <.05; b p <.01; c p <.001
Conclusions Provides evidence of a relationship between perceived stigma associated with memory loss for people 65 years and older and various health and wellbeing measures. In particular, higher levels of perceived stigma may be associated with: Higher anxiety levels Lower self-esteem Lower self-reported physical health Increased self-reported depressive symptoms Lower sense of personal control Possibly lower perceived levels of social support
Conclusion Suggests that level of perceived stigma of the person with memory loss is not associated with: Level of cognitive impairment (MMSE) Level of clinical rating of dementia symptoms Family carers knowledge of Alzheimer s dementia Also suggests that the level of perceived stigma of family carers is not associated with: health and wellbeing of the person with memory loss with two exceptions: Higher carer perceived stigma is related to higher reported recreational and social activities by the person with memory loss and lower levels of personal control the level of perceived stigma of the person with memory loss
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