Interrogating the ethics of telecare services: a conceptual framework for dementia home care professionals

Abstract

Professionals working with older people in dementia home care are likely to encounter an increasing range of assistive technological services such as Telecare, as part of the evolving menu of domiciliary care services. These innovations are presenting ethical opportunities and challenges, not fully addressed in the literature to date. This Thesis therefore proposes a conceptual framework for interrogating the ethics of Telecare services, aimed at dementia home care professionals who work with older people. To this end, the Thesis draws on the available evidence base on Telecare service impacts, small-scale foresight studies from actual and potential service users of Telecare and the author's own experiences as a 'Telecare Operator'.

This Thesis acknowledges that the existing literature on 'stand alone' assistive technologies in dementia support, offers well attested recommendations for person centred design as an essential ethical baseline for networked socio-technical services. As a result, the Thesis recognises that carefully designed Telecare services can be empirically and ethically defended as enabling safer and more sustainable independent living for the cognitively impaired. Yet, the Thesis also addresses the associated ethical concerns that Telecare's constitutive automatic and monitoring technologies may be generating novel forms of psycho-social risk. Of all such putative risks of the 'panoptical gaze' of Telecare for dementia, the greatest may be the reduction or full displacement of human care in quantity and quality. This Thesis therefore pays considerable attention to how Telecare services might impact on the care dynamics between older service users with dementia and their carers. Given the increasing need for formal and informal care that progressive dementia is understood to present, the Thesis makes a strong ethical appeal that Telecare services alone are not appropriate for all cases of dementia though it is recognised that much more empirical work needs to be done on this question.

Neither can Telecare services, even if optimally effective, compensate for frequently criticised deficiencies in the surrounding formal care system for older people with dementia at home and lack of support for their informal carers. Dementia home care professionals are therefore cautioned that Telecare services might be serving social policy goals of rationalisation rather than 'person centred care' at home, seriously compromising the progressive ethos of the 'new culture' of dementia care.

Nevertheless, given the anticipated shortfalls in care provision for a growing older population, it seems that Telecare services are inevitably going to expand and evolve as part of the home care 'mix'.

Already the literature attests that Telecare can generate valuable assessment and review data for ongoing 'person centred care' management in home-based dementia situations. Furthermore, current Telecare programmes seem to be facilitating new synergies for formal service partnerships, with major ethical implications for dementia home care professionals working with older people. As matters of significant ethical import, this Thesis therefore pays much attention to the effective coupling of rapid response services with efficient call handling procedures by Telecare Response Centres, the management of carefully designed 'Response Protocols' for a range of personal and domestic crises as well as the legal implications of Telecare data governance, as currently understood.