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Courtney Roberts

Family stigma and caregiver burden in Alzheimer’s disease. Courtney Roberts. What Is Stigma?. Attribute that is deeply discrediting and reduces the bearer from a whole and usual person to a tainted discounted one

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Courtney Roberts

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  1. Family stigma and caregiver burden in Alzheimer’s disease Courtney Roberts

  2. What Is Stigma? • Attribute that is deeply discrediting and reduces the bearer from a whole and usual person to a tainted discounted one • Self Stigma: internalization of ideas and the reactions of those personally targeted by stigma • Public Stigma: reactions of lay people toward a stigmatized person/group • Courtesy Stigma: emotions and beliefs of those surrounded the stigmatized person

  3. What Does The Burden Include? • Physical • Psychological • Emotional • Social • Financial

  4. Factors That Influence The Burden • Characteristics of the caregiver • Kinship ties • Gender • Psychological resources & coping strategies • Characteristics of the person with AD • Cognitive status • Behavioral disturbances • Characteristics of the caregiving context • Duration of caregiving • Extent of social support • Quality of family relationships

  5. Dimensions That Define Stigma Dimensions Core Elements • Caregiver stigma • Lay public stigma • Structural stigma • Cognitive attributions • severity of disease, aesthetic appearance of person with AD, and perceptions of dangerousness • Emotional reactions • Positive emotions (compassion) and negative emotions (shame, embarrassment & guilt) • Behavioral responses • Decreased direct involvement with caregiving

  6. Purpose Of The Study • Find out if family stigma is a predictor of caregiver burden in relation to Alzheimer’s disease

  7. The Method Used • Face-to-face interviews with 185 adult child caregivers (75% female; mean age=53 years) of an elderly parent with Alzheimer’s disease • Participants were recruited from support groups and by snowball sampling • Measured caregiver burden by assessing caregivers using the Zarit Burden Interview Short Form • Item responses rated on 5 point scale, ranging from never (0) to nearly always (4) • The contextual variables of the caregiver were looked at • Sociodemographic characteristics (gender, age, education), the number of years since the diagnosis of AD, and the time spent caregiving (years and hours per week)

  8. The Results • Caregiver stigma variables improved the prediction of caregiver burden by adding eighteen percent to the variance over and above the other covariates • Caregiver stigma increases the burden for caregivers of those with AD

  9. Limitations Of The Study • Convenience sampling limits the generalizability of the findings because the participants may not be representative of all caregivers • It is not possible to determine causal relationships among the variables examined • The importance of stigma on caregiver burden should be examined in other cultures

  10. In Conclusion… • Psychosocial interventions should target stigmatic beliefs and emotional shame reactions in order to reduce caregiver burden • Health care and social service providers can provide more effective support if they are aware of what is going on • Education for the public about the causes of AD and the behaviors of the illness can diffuse the stigmatic reactions • Future research should evaluate the longitudinal effects of stigma on social support and burden in order to develop a definitive causal model of stigma and its consequences

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