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
• 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
Dimensions
• Caregiver stigma
• Lay public stigma
• Structural stigma
Core Elements
• 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
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