The STIG-MA survey: social representations and stigma of Alzheimer’s disease in a French rural population Cartz-Piver L 124, Faure A 2, Nubukpo P 125, Videaud H 1, Dumoitier N 3, Couratier P 124, Clément JP. 125 ADI London, March Contact:

Alzheimer’s Disease (AD) in France Population: 65 million (INSEE, 2011) – Estimated 800,000 people with AD or related disorders French Health Authorities (HAS, 2008) and 3 rd Alzheimer National Plan ( ) :  Early diagnosis is recommended for better treatment, care and information. 2

A Delay in Screening  French Register = BNA Bank National Alzheimer  At 1st visit, average MMS score : 17/30 moderately severe stage of AD.  Psychological and social factors “may have a negative impact on the intention to obtain screening and to ask for help or assistance” (Gallez, 2005). 3

Limousin, France: one of the oldest populations in Europe. Creuse in LIMOUSIN FRANCEEUROPE Over 65 years old 27%16,1%16,9% Over 75 years old 14,8%8,1% 7,8% (cf. INSEE, 2003) 4

“A different look at Alzheimer’s” September 20 th to 24 th 2010  Conferences and meetings with medical end social workers, with members of France Alzheimer Association  Cultural events: films, a play, a modern ballet dance, concerts.  STIG-MA survey: 10 questions (anonymous). 5

EMIC Explanatory Model Interview Catalogue (Weiss et al, 1992) Developed for leprosy in India – Translated in French and adapted for epilepsy and dementia (Institute of Tropical Neurology, University of Limoges). 10 questions explore perceived stigma  Four answers : YES, perhaps, I don’t know, NO  Scores from 0 to 3 : 3 shows the most stigma STIG-MA survey: score from 0 to 30. 6

STIG-MA: If you had Alzheimer’s disease... 1.Would you rather no one knew about your disease? 2.Would you talk about your disease to the person you are closest to? 3.Would you lose self esteem or feel dishonored? 4.Would you feel ashamed or embarrassed? 5.If your neighbours or colleagues knew about it, would they have less respect for you? 7

STIG-MA: If you had Alzheimer’s disease Would people avoid you because of your disease? 7. Do you think your neighbours or your colleagues would have less esteem for your family? 8. Would your spouse (husband or wife) stay with you and support you? 9. Would you be asked to stay away from people that you know, even under medication? 10. Would your family give you their support? 8

Population at the campaign 517 /1562 people filled out the questionnaire (33%)  85% women  60% aged under 50  38% under 25  9,6% were 75 or older. 9

Professional status Public was diverse: workers, retired, students.  20% professionals worked in medical fields (14%) or social fields (6%). 10

Different stigma profiles (p<0.0001) 11

STIG-MA SCORE= 10,48 ± 4,53 [min 0 - max 25] Comparing 3 groups :  Low STIGMA = Score 0 to 7  Moderate STIGMA = Score 8 to 11  High STIGMA = Score 12 to

Does age affect representations? 13 Low stigma was predominantly expressed in the older age group (p<0.05)

Do jobs affect representations? 14 High STIGMA was expressed the most by medical and social field workers (p=0.001).

Few studies on STIGMA and dementia Compared to mental disease – 78 articles from 1995 to 2008 (cf. review INPES, 2008). No studies address older people (aged > 75). Older people are the most exposed to AD, they seem to express less stigma. 15

Medical workers may express stigma General practitioners in 8 European countries (Vernooj-Dassen et al., 2005)  Feeling helpless in front of dementia leads to unwillingness to early diagnosis Among professionals, fear increases stigma, whereas pity reduces it (Werner and Giveon, 2008) Importance of education and training of medical and social workers. 16

Shame and dishonor Very commonly expressed (INPES, 2008)  Fear of socially inadequate behavior,  Families don’t dare leave home and meet others… 17

Stigma and early diagnosis 81% people thought they would be treated “differently” if they had AD. (Alzheimer’s Society of Canada, 2003) Negative social representations may influence our attitudes in seeking assistance and medical help (Scomerus and Angermeyer, 2008)  Fear of neglect, discrimination … STIG-MA 2 18 The campaign was financed by the 3 rd French Alzheimer Plan and ARS Limousin. Special thanks to France Alzheimer Association.