Stigma by association: a qualitative Stigma by association: a qualitative study of children of persons with study of children of persons with Alzheimer's disease Alzheimer's disease D. Goldstein, Ph.D. Student D. Goldstein, Ph.D. Student P. Werner, Ph.D. Professor and Dean P. Werner, Ph.D. Professor and Dean Faculty of Social Welfare and Health Sciences Faculty of Social Welfare and Health Sciences University of Haifa University of Haifa Israel Israel
Transcript
Stigma by association: a Stigma by association: a qualitative study of children qualitative study of children
of persons withof persons withAlzheimer's diseaseAlzheimer's disease
D. Goldstein, Ph.D. StudentD. Goldstein, Ph.D. StudentP. Werner, Ph.D. Professor and DeanP. Werner, Ph.D. Professor and DeanFaculty of Social Welfare and Health Faculty of Social Welfare and Health
SciencesSciencesUniversity of HaifaUniversity of Haifa
IsraelIsrael
Family stigmaFamily stigma
The prejudice and discrimination experienced by individuals through associations with their relatives
Has been studied mainly in the area of mental illness and AIDS
AimAim
To explore caregivers’ perceptions of family stigma in the context of Alzheimer’s disease
DesignDesign
Qualitative research In depth interviews Nonprobabilistic purposive
10 children of persons with AD10 children of persons with AD 8 female8 female 2 male2 male Mean age = 52.9Mean age = 52.9 Taking care of 5 mothers and 5 Taking care of 5 mothers and 5
fathersfathers Mean time of caregiving = 4.4 Mean time of caregiving = 4.4
yearsyears
Theoretical frameworkTheoretical framework
Attribution theory
Main findingsMain findingsThree main areas of stigma were
identified
Family caregivers’ stigma Lay public stigma Structural stigma
Family caregivers’ stigmaFamily caregivers’ stigma
Cognitive and physical Cognitive and physical functioningfunctioning““He has physical and mental problems…he He has physical and mental problems…he
is unable to go to the toilet by himself.. is unable to go to the toilet by himself.. After a minute, or even after a second he After a minute, or even after a second he does not remember, he remembers does not remember, he remembers nothing, a total erasing of the nothing, a total erasing of the information he got”information he got”
““Look at him… totally unable to function… Look at him… totally unable to function… like dead wood… totally brainless… like dead wood… totally brainless… unable to be alone… unable to do unable to be alone… unable to do anything by himself”anything by himself”
AestheticsAesthetics
““One day I came in and saw her…One day I came in and saw her…what can I say…everything around what can I say…everything around was messy…she was messy…was messy…she was messy…disgusting… as a person from the disgusting… as a person from the slums…also filthy, dirty, totally slums…also filthy, dirty, totally soiled…”soiled…”
ShameShame““We live in a small town…when mom We live in a small town…when mom
became aggressive she used to go became aggressive she used to go out into the streets…she walked out into the streets…she walked along the streets…she yelled and along the streets…she yelled and bang into the neighbors’ doors…what bang into the neighbors’ doors…what can I say…I was totally ashamed” can I say…I was totally ashamed”
““Also when she does not want to bathe Also when she does not want to bathe she starts yelling “help help” – then I she starts yelling “help help” – then I feel so embarrassed and mortified… feel so embarrassed and mortified… I feel I could die”I feel I could die”
EmbarrassmentEmbarrassment
"One day at 2 am she went out and "One day at 2 am she went out and went to the neighbors' home. went to the neighbors' home. Knocked on the door looking for my Knocked on the door looking for my father who has been dead for 27 father who has been dead for 27 years…I was so embarrassed in front years…I was so embarrassed in front of the neighbors…They are elderly of the neighbors…They are elderly persons themselves…but it was so persons themselves…but it was so embarrassing"embarrassing"
DisgustDisgust
““When I come to visit I approach When I come to visit I approach her…Not that there is anything her…Not that there is anything to talk with her…it is disgusting to talk with her…it is disgusting looking at her…without teeth…looking at her…without teeth…wrinkled…I really feel repulsion, wrinkled…I really feel repulsion, repugnance…”repugnance…”
ConcealmentConcealment
““I don’t tell he is ill… I remember I don’t tell he is ill… I remember my husband telling me that if I my husband telling me that if I say he is ill, it will damage his say he is ill, it will damage his honor... So, I don’t want to hurt honor... So, I don’t want to hurt his honor…”his honor…”
Less caregivingLess caregiving "When she looked at me and asked "When she looked at me and asked
me: why my mother left me here me: why my mother left me here alone? I felt I could die…since then I alone? I felt I could die…since then I can not visit her as much as before…I can not visit her as much as before…I can not feed her…I can not dress can not feed her…I can not dress her…" her…"
"I come to visit her and I see her…like "I come to visit her and I see her…like a small bird…teethless…all wrinkled…a small bird…teethless…all wrinkled…I approach her but I can not talk to I approach her but I can not talk to her, I can not hug her, kiss her…"her, I can not hug her, kiss her…"
CompassionCompassion ““I feel distress and mercy for my I feel distress and mercy for my
mother… she has to live in this neglect”mother… she has to live in this neglect”
““My mother was always very well My mother was always very well groomed and dressed ... she always groomed and dressed ... she always received compliments about her received compliments about her appearance... Suddenly (after she got appearance... Suddenly (after she got AD)... she puts on clothes that don’t fit AD)... she puts on clothes that don’t fit her... she looks neglected…I'm sorry for her... she looks neglected…I'm sorry for her and try to groom her and keep her her and try to groom her and keep her clean…”clean…”
SorrowSorrow
““I’m an only child. He used to be so I’m an only child. He used to be so happy when he saw me. And now… happy when he saw me. And now… he does not get happy to see me he does not get happy to see me anymore…he does not recognize anymore…he does not recognize me…It is so sad to see him…I don’t me…It is so sad to see him…I don’t make him happy anymore and I make him happy anymore and I feel sad and distressed”feel sad and distressed”
GuiltGuilt““We had a birthday and she We had a birthday and she
came…she had a bad odor… and came…she had a bad odor… and I felt so guilty”I felt so guilty”
““I know we (all the children) have I know we (all the children) have to help her… but we can not be to help her… but we can not be there all the time…and I feel bad there all the time…and I feel bad and blameworthy for not helping and blameworthy for not helping more” more”
More CaregivingMore Caregiving
““Since the disease worsened the Since the disease worsened the roles were reversed – I became roles were reversed – I became the mother and she became the the mother and she became the daughter. I never was as patient daughter. I never was as patient as now… when I see her so as now… when I see her so helpless I have all the patience I helpless I have all the patience I need to take care of her…”need to take care of her…”
Cognitive and physical Cognitive and physical functioningfunctioning
““People relate to an AD patient as one People relate to an AD patient as one that has difficulties with his physical, that has difficulties with his physical, mental and cognitive functions. They mental and cognitive functions. They think he (the father) is always think he (the father) is always confused, forgetful, irresponsible and confused, forgetful, irresponsible and a boring man… they only concentrate a boring man… they only concentrate on how he repeats the same sentence on how he repeats the same sentence again and again…again and again…”.”.
AestheticsAesthetics““People care about the People care about the
appearance of others and judge appearance of others and judge them accordingly. My mother them accordingly. My mother was an elegant woman... well was an elegant woman... well dressed...but after she got dressed...but after she got sick... she does not keep clean sick... she does not keep clean anymore... she looks neglected anymore... she looks neglected and dirty… and people don’t and dirty… and people don’t recognize her”.recognize her”.
FearFear““While my mother was hospitalized in a While my mother was hospitalized in a
nursing home… her friend came to visit nursing home… her friend came to visit her, but she didn’t enter to her room her, but she didn’t enter to her room and stayed outside because she was so and stayed outside because she was so
afraid to meet herafraid to meet her”...”...
““As the patient shows more symptoms of As the patient shows more symptoms of AD… people are more afraid to be next AD… people are more afraid to be next to him, because they are afraid of to him, because they are afraid of getting the disease or perhaps they are getting the disease or perhaps they are worried of being required to help the worried of being required to help the patientpatient””
DisgustDisgust
““I remember one “Passover I remember one “Passover night”, my mother sat on a night”, my mother sat on a wheelchair at the end of the wheelchair at the end of the table… her caregiver feed her… table… her caregiver feed her… and the food leaked from her and the food leaked from her mouth on her clothes. The mouth on her clothes. The guests were disgusted… my guests were disgusted… my mother in law… and the mother in law… and the grandchildren too were grandchildren too were sickened”.sickened”.
Distancing - AvoidanceDistancing - Avoidance““She was very popular… everybody She was very popular… everybody
wanted to be with her…she was a wanted to be with her…she was a queen… And then she started to queen… And then she started to forget how to play cards and forgot to forget how to play cards and forgot to come to the meetings… and then like come to the meetings… and then like they run away from her…no sympathy, they run away from her…no sympathy, no patience…everybody disappeared”no patience…everybody disappeared”
““We live alone both of us (son and We live alone both of us (son and mother). A full world around us mother). A full world around us breathes and goes around – and we breathes and goes around – and we are in our own bubble…we could be are in our own bubble…we could be dead and stinking dead and no one dead and stinking dead and no one would approach us”would approach us”
PityPity““My mother had an open My mother had an open
house… like a train house… like a train station… people came and station… people came and left all the time… when she left all the time… when she got sick, nobody came, only got sick, nobody came, only her best friends who felt her best friends who felt
pity for herpity for her.”.”
ClosenessCloseness
““When it was clear that my When it was clear that my mother suffers from mother suffers from Alzheimer's disease (AD)... my Alzheimer's disease (AD)... my father informed their friends father informed their friends about it... and they came to about it... and they came to visit her, especially before visit her, especially before
Difficulties to Difficulties to get servicesget services
Flawed Flawed treatmenttreatment
Delay of getting Delay of getting helphelp
Unprofessional medical Unprofessional medical staffstaff““My father has "Aphasia“, he can't My father has "Aphasia“, he can't
talk and feels depressed… his family talk and feels depressed… his family physician told us that all elderly physician told us that all elderly persons suffer from it, and that persons suffer from it, and that there is nothing to do…”there is nothing to do…”
““I know that family physicians have I know that family physicians have difficulties to distinguish between difficulties to distinguish between AD, Dementia, Depression… and AD, Dementia, Depression… and problems which belong to the old problems which belong to the old
ageage.”.”
Flawed treatmentFlawed treatment““When I informed her (the mother’s) family When I informed her (the mother’s) family
physician that she doesn't eat… she physician that she doesn't eat… she answered that there was nothing to be answered that there was nothing to be done. I wasn’t satisfied with her answer and done. I wasn’t satisfied with her answer and it made me angry. She didn’t help us, so I it made me angry. She didn’t help us, so I went to the pharmacy consulted with the went to the pharmacy consulted with the pharmacist and bought enriched food…” pharmacist and bought enriched food…”
““My mother had hallucinations… I told her My mother had hallucinations… I told her family physician about it and she answered family physician about it and she answered that there was nothing to be done… Finally, that there was nothing to be done… Finally, only after I pressured her, she gave a only after I pressured her, she gave a medicine that helps, but her treatment was medicine that helps, but her treatment was rude and unprofessional”.rude and unprofessional”.
Difficulties to get servicesDifficulties to get services““We sought… several times… we We sought… several times… we
applied for Long term Care Law from applied for Long term Care Law from the National Insurance… but it took a the National Insurance… but it took a long time till we received any long time till we received any answer… although we showed answer… although we showed certificates which confirmed that she certificates which confirmed that she needed help around the clock…“needed help around the clock…“
""My mother was handicapped and we My mother was handicapped and we couldn’t leave her alone… every time couldn’t leave her alone… every time the nurse (from the National the nurse (from the National Insurance) came.. my mother made Insurance) came.. my mother made her a show that she cooked and her a show that she cooked and
drove… although she didn’tdrove… although she didn’t”…”…
Delay in getting helpDelay in getting help““We applied to the National Insurance… in order We applied to the National Insurance… in order
to get the allowance, but it takes a long time… to get the allowance, but it takes a long time… first automatically they gave us a negative first automatically they gave us a negative answer, automatically, without thinking… we answer, automatically, without thinking… we submitted some requests…again and again… submitted some requests…again and again… after four times we were recognized, but in after four times we were recognized, but in
partialpartial“…“…““I knew my mother needed physically help and I I knew my mother needed physically help and I
asked for help 3 or 4 times from the National asked for help 3 or 4 times from the National Insurance… but they rejected our requests. I Insurance… but they rejected our requests. I didn’t give up and tried again and again, filled didn’t give up and tried again and again, filled the documents with the family physician… after the documents with the family physician… after many times we got help from a foreign many times we got help from a foreign
workerworker”…”…""My mother can't be alone… twice we asked for My mother can't be alone… twice we asked for
care and were rejected (about a year)... I think care and were rejected (about a year)... I think it is a scandalit is a scandal “… “…
Summary and Summary and conclusionsconclusions Similarities and dissimilarities Similarities and dissimilarities
between family stigma in AD and between family stigma in AD and family stigma in other diseasesfamily stigma in other diseases
SimilaritiesSimilarities
Three dimensionsThree dimensions Caregivers’ stigmaCaregivers’ stigma Lay public stigmaLay public stigma Structural stigmaStructural stigma
Attribution processAttribution process
DissimilaritiesDissimilarities
New cognitive attributionsNew cognitive attributions FunctioningFunctioning AestheticsAesthetics
New emotional reactionsNew emotional reactions ShameShame GuiltGuilt
New discriminatory behaviorsNew discriminatory behaviors Inappropriate treatmentInappropriate treatment
Research directionsResearch directions
Replicate the studyReplicate the study Develop quantitative studyDevelop quantitative study Examine antecedents and Examine antecedents and
consequences of family stigma in consequences of family stigma in ADAD
