The experiences of people with dementia and intellectual disabilities with surveillance technologies in residential care

• Published in: Nursing ethics 2015-05, Vol.22 (3), p.307-320
• Main Authors: Niemeijer, Alistair R, Depla, Marja FIA, Frederiks, Brenda JM, Hertogh, Cees MPM
• Format: Article
• Language: English
• Subjects: Dementia; Dementia - psychology; Elder care; Ethics; Ethnography; Field study; Freedom of movement; Global positioning systems; GPS; Humans; Intellectual disabilities; Long term health care; Long-Term Care - methods; Medical research; Netherlands; Nursing homes; Personal Autonomy; Persons with Mental Disabilities - psychology; Physical restraints; Population Surveillance - methods; Privacy; Quality of life; Residential Facilities - trends; Safety Management - ethics; Surveillance; Technology Assessment, Biomedical - methods
• ISSN: 0969-7330; 1477-0989
• DOI: 10.1177/0969733014533237

Background: Surveillance technology such as tag and tracking systems and video surveillance could increase the freedom of movement and consequently autonomy of clients in long-term residential care settings, but is also perceived as an intrusion on autonomy including privacy. Objective: To explore how clients in residential care experience surveillance technology in order to assess how surveillance technology might influence autonomy. Setting: Two long-term residential care facilities: a nursing home for people with dementia and a care facility for people with intellectual disabilities. Methods: Ethnographic field study. Ethical considerations: The boards representing clients and relatives/proxies of the clients were informed of the study and gave their written consent. The clients’ assent was sought through a special information leaflet. At any time clients and/or proxy were given the option to withdraw from the study. The research protocol was also reviewed by a medical ethics committee. Findings: Our findings show a pattern of two themes: (1) coping with new spaces which entailed clients: wandering around, getting lost, being triggered, and retreating to new spaces and (2) resisting the surveillance technology measure because clients feel stigmatized, missed the company, and do not like being “watched.” Conclusion: Client experiences of surveillance technology appear to entail a certain ambivalence. This is in part due to the variety in surveillance technology devices, with each device bringing its own connotations and experiences. But it also lies in the devices’ presupposition of an ideal user, which is at odds with the actual user who is inherently vulnerable. Surveillance technology can contribute to the autonomy of clients in long-term care, but only if it is set in a truly person-centered approach.