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Stigma by association: a qualitative study of children of persons with Alzheimer's disease D. Goldstein, Ph.D. Student P. Werner, Ph.D. Professor and Dean.

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Presentation on theme: "Stigma by association: a qualitative study of children of persons with Alzheimer's disease D. Goldstein, Ph.D. Student P. Werner, Ph.D. Professor and Dean."— Presentation transcript:

1 Stigma by association: a qualitative study of children of persons with Alzheimer's disease D. Goldstein, Ph.D. Student P. Werner, Ph.D. Professor and Dean Faculty of Social Welfare and Health Sciences University of Haifa Israel

2 Family 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

3 Aim To explore caregivers perceptions of family stigma in the context of Alzheimers disease

4 Design Qualitative research In depth interviews Nonprobabilistic purposive sample

5 Participants characteristics 10 children of persons with AD 10 children of persons with AD 8 female2 male 8 female2 male Mean age = 52.9 Mean age = 52.9 Taking care of 5 mothers and 5 fathers Taking care of 5 mothers and 5 fathers Mean time of caregiving = 4.4 years Mean time of caregiving = 4.4 years

6 Theoretical framework Attribution theory

7 Main findings Three main areas of stigma were identified Family caregivers stigma Lay public stigma Structural stigma

8 Function Negative feelings Shame Embarrassment Concealment Less caregiving Less caregiving Positive feelings Compassion Sorrow Guilt More Caregiving More Caregiving Disgust Aesthetics Family caregivers stigma

9 Cognitive and physical functioning He has physical and mental problems…he is unable to go to the toilet by himself.. After a minute, or even after a second he does not remember, he remembers nothing, a total erasing of the information he got Look at him… totally unable to function… like dead wood… totally brainless… unable to be alone… unable to do anything by himself

10 Aesthetics One day I came in and saw her…what can I say…everything around was messy…she was messy…disgusting… as a person from the slums…also filthy, dirty, totally soiled… One day I came in and saw her…what can I say…everything around was messy…she was messy…disgusting… as a person from the slums…also filthy, dirty, totally soiled…

11 Shame We live in a small town…when mom became aggressive she used to go out into the streets…she walked along the streets…she yelled and bang into the neighbors doors…what can I say…I was totally ashamed Also when she does not want to bathe she starts yelling help help – then I feel so embarrassed and mortified… I feel I could die

12 Embarrassment "One day at 2 am she went out and went to the neighbors' home. Knocked on the door looking for my father who has been dead for 27 years…I was so embarrassed in front of the neighbors…They are elderly persons themselves…but it was so embarrassing"

13 Disgust When I come to visit I approach her…Not that there is anything to talk with her…it is disgusting looking at her…without teeth…wrinkled…I really feel repulsion, repugnance…

14 Concealment I dont tell he is ill… I remember my husband telling me that if I say he is ill, it will damage his honor... So, I dont want to hurt his honor… I dont tell he is ill… I remember my husband telling me that if I say he is ill, it will damage his honor... So, I dont want to hurt his honor…

15 Less caregiving "When she looked at me and asked me: why my mother left me here alone? I felt I could die…since then I can not visit her as much as before…I can not feed her…I can not dress her…" "When she looked at me and asked me: why my mother left me here alone? I felt I could die…since then I can not visit her as much as before…I can not feed her…I can not dress her…" "I come to visit her and I see her…like a small bird…teethless…all wrinkled…I approach her but I can not talk to her, I can not hug her, kiss her…" "I come to visit her and I see her…like a small bird…teethless…all wrinkled…I approach her but I can not talk to her, I can not hug her, kiss her…"

16 Compassion I feel distress and mercy for my mother… she has to live in this neglect I feel distress and mercy for my mother… she has to live in this neglect My mother was always very well groomed and dressed... she always received compliments about her appearance... Suddenly (after she got AD)... she puts on clothes that dont fit her... she looks neglected…I'm sorry for her and try to groom her and keep her clean… My mother was always very well groomed and dressed... she always received compliments about her appearance... Suddenly (after she got AD)... she puts on clothes that dont fit her... she looks neglected…I'm sorry for her and try to groom her and keep her clean…

17 Sorrow Im an only child. He used to be so happy when he saw me. And now… he does not get happy to see me anymore…he does not recognize me…It is so sad to see him…I dont make him happy anymore and I feel sad and distressed

18 Guilt We had a birthday and she came…she had a bad odor… and I felt so guilty I know we (all the children) have to help her… but we can not be there all the time…and I feel bad and blameworthy for not helping more

19 More Caregiving Since the disease worsened the roles were reversed – I became the mother and she became the daughter. I never was as patient as now… when I see her so helpless I have all the patience I need to take care of her…

20 Function Negative feelings Fear Avoidance Positive feelings Pity Closeness Disgust Aesthetics Lay public stigma

21 Cognitive and physical functioning People relate to an AD patient as one that has difficulties with his physical, mental and cognitive functions. They think he (the father) is always confused, forgetful, irresponsible and a boring man… they only concentrate on how he repeats the same sentence again and again….

22 Aesthetics People care about the appearance of others and judge them accordingly. My mother was an elegant woman... well dressed...but after she got sick... she does not keep clean anymore... she looks neglected and dirty… and people dont recognize her.

23 Fear While my mother was hospitalized in a nursing home… her friend came to visit her, but she didnt enter to her room and stayed outside because she was so afraid to meet her... As the patient shows more symptoms of AD… people are more afraid to be next to him, because they are afraid of getting the disease or perhaps they are worried of being required to help the patient

24 Disgust I remember one Passover night, my mother sat on a wheelchair at the end of the table… her caregiver feed her… and the food leaked from her mouth on her clothes. The guests were disgusted… my mother in law… and the grandchildren too were sickened. I remember one Passover night, my mother sat on a wheelchair at the end of the table… her caregiver feed her… and the food leaked from her mouth on her clothes. The guests were disgusted… my mother in law… and the grandchildren too were sickened.

25 Distancing - Avoidance She was very popular… everybody wanted to be with her…she was a queen… And then she started to forget how to play cards and forgot to come to the meetings… and then like they run away from her…no sympathy, no patience…everybody disappeared We live alone both of us (son and mother). A full world around us breathes and goes around – and we are in our own bubble…we could be dead and stinking dead and no one would approach us

26 Pity My mother had an open house… like a train station… people came and left all the time… when she got sick, nobody came, only her best friends who felt pity for her.

27 Closeness When it was clear that my mother suffers from Alzheimer's disease (AD)... my father informed their friends about it... and they came to visit her, especially before holydays. When it was clear that my mother suffers from Alzheimer's disease (AD)... my father informed their friends about it... and they came to visit her, especially before holydays.

28 Unprofessional medical staff Unprofessional medical staff Structural discrimination Difficulties to get services Difficulties to get services Flawed treatment Flawed treatment Delay of getting help Delay of getting help

29 Unprofessional medical staff My father has "Aphasia, he can't talk and feels depressed… his family physician told us that all elderly persons suffer from it, and that there is nothing to do… I know that family physicians have difficulties to distinguish between AD, Dementia, Depression… and problems which belong to the old age.

30 Flawed treatment When I informed her (the mothers) family physician that she doesn't eat… she answered that there was nothing to be done. I wasnt satisfied with her answer and it made me angry. She didnt help us, so I went to the pharmacy consulted with the pharmacist and bought enriched food… My mother had hallucinations… I told her family physician about it and she answered that there was nothing to be done… Finally, only after I pressured her, she gave a medicine that helps, but her treatment was rude and unprofessional.

31 Difficulties to get services We sought… several times… we applied for Long term Care Law from the National Insurance… but it took a long time till we received any answer… although we showed certificates which confirmed that she needed help around the clock… "My mother was handicapped and we couldnt leave her alone… every time the nurse (from the National Insurance) came.. my mother made her a show that she cooked and drove… although she didnt…

32 Delay in getting help We applied to the National Insurance… in order to get the allowance, but it takes a long time… first automatically they gave us a negative answer, automatically, without thinking… we submitted some requests…again and again… after four times we were recognized, but in partial… I knew my mother needed physically help and I asked for help 3 or 4 times from the National Insurance… but they rejected our requests. I didnt give up and tried again and again, filled the documents with the family physician… after many times we got help from a foreign worker… "My mother can't be alone… twice we asked for care and were rejected (about a year)... I think it is a scandal…

33 Summary and conclusions Similarities and dissimilarities between family stigma in AD and family stigma in other diseases Similarities and dissimilarities between family stigma in AD and family stigma in other diseases

34 Similarities Three dimensions Three dimensions Caregivers stigma Caregivers stigma Lay public stigma Lay public stigma Structural stigma Structural stigma Attribution process Attribution process

35 Dissimilarities New cognitive attributions New cognitive attributions Functioning Functioning Aesthetics Aesthetics New emotional reactions New emotional reactions Shame Shame Guilt Guilt New discriminatory behaviors New discriminatory behaviors Inappropriate treatment Inappropriate treatment

36 Research directions Replicate the study Replicate the study Develop quantitative study Develop quantitative study Examine antecedents and consequences of family stigma in AD Examine antecedents and consequences of family stigma in AD

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