When home transforms into a heterotopic space
(Tel Aviv University)
Paper short abstract:
Old people living at home, rather than in institutions, enjoy a better quality of life. I challenge this assumption regarding old people with advanced stages of dementia living at home. I contend that family caregivers transform the "home" of cognitively impaired people into a heterotopic space
Paper long abstract:
Old people living at home (instead of being segregated into nursing homes) enjoy a better quality of life, involvement in the community and active social life. Based on data gathered from Facebook groups, comprised of families caring for older people with advanced stages of dementia at home, I pose that this assumption isn't valid in their case and suggest that families mostly tend to their physical needs. Family members are unable to intelligibly communicate with them, especially during the advanced stages, or they avoid the effort altogether. They restrict them to their rooms, and more specifically, to their beds. Their hands are bound to prevent them from pulling out medical equipment that makes them suffer; and, they are not allowed to wander outside of their designated space (either by locking their doors or by handcuffing them to their bed.) They are unable to revel in the simplest joys of life, e.g. tasting food; since they are being fed with a syringe or worse, artificially fed. They are constantly under the surveillance of family members and professional caregivers (migrant workers from East Asia mostly,) or monitored by home security cameras. I contend that family caregivers transform the "home" of cognitively impaired people into a heterotopic space. One in which their subjectivity is decomposed; their bodies are supervised constantly, subjected to a strict regime of medical control. They are sequestrated from society, and socially excluded; though at "home," within the "community," rather than at an "institution."
Staying, moving, (re)settling: transitioning practices, actors and places of care in later life [Age and Generations Network]