Half of them are dying on their feet but they still have strength for that: sexuality, dementia and residential care work : a disregarded and neglected area of study

Abstract

Sexual expression by people with dementia has tended to be pathologised in biomedical debates or ignored in person-centred discussions. The thesis therefore brings together the study of sexuality, older people with dementia and residential living and makes connections between ideas, theories and practice reaching the 'interior' of social life that has hitherto been neglected. A postmodern feminist approach was used to explore this subject, which is 'seen' primarily through the lens of (mainly) female care workers' experience with ethnographic and grounded theory methods used to obtain the data. A postal survey involving 28 social work residential homes was undertaken followed by a period of fieldwork using observation, participant observation and in-depth interviews in one social work residential home. The overall research question addressed the neglect of the topic, others looked at what staff said about sex, how they responded to residents' expressed sexuality, what they found most difficult, the part dementia played and how context affected response. Resident-to-resident sexual expression was more widely discussed than resident-to-staff expression. The latter was reported to be the most difficult area for staff to manage and one that appeared to carry emotional costs. There was also a tension between what staff said and how they responded in practice. Ambiguity was a key constituent with the defining of dementia sometimes a contested area between care workers. Where the resident was very advanced in their dementia, the extenuating circumstances of the illness seemed to engender more forbearance. The difficulties arose when the diagnosis was not so apparent. The data point to the subject being a difficult area with staff sometimes choosing to ignore or remaining silent about resident sexual expression. Researchers' neglect may in part be due to difficulties in obtaining research funding or the possibility of their career prospects being compromised.