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

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

What Does The Burden Include? Physical Psychological Emotional Social Financial

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

Dimensions That Define Stigma 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 DimensionsCore Elements

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

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)

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

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

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