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Networked carers: new information & communication technologies and carers of people with dementia

Networked carers: new information & communication technologies and carers of people with dementia. Policy context. Four key issues for health & social care policy at the start of the 21st century: The management of long-term conditions The ageing population The informed, empowered consumer

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Networked carers: new information & communication technologies and carers of people with dementia

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  1. Networked carers: new information & communication technologies and carers of people with dementia

  2. Policy context • Four key issues for health & social care policy at the start of the 21st century: • The management of long-term conditions • The ageing population • The informed, empowered consumer • The development of new technologies

  3. Dementia • A condition of progressive global impairment of higher cortical functions associated with underlying brain disease • Affects over 750000 people in the UK • Over 870000 people by 2010 • 1.8 million by 2050 • 5% of people over age 65 and 20% of people over age 80 [Melzer et al., 1994] • Majority cared for at home [Arksey et al., 2004]

  4. Carers • Socially isolated [Arksey et al., 2004] • Lack information [Levin, 1997] • Increased psychological morbidity, especially “distress” [Hirst, 2005] and depression [Cuijpers, 2004] • Lower self care including reduced “healthy” behaviours [Gallant & Connell, 1997] • Underuse of services [Morgan et al., 2002] • Financial hardship [Davis et al., 1997]

  5. New ICTs & carers: theoretical benefits • EMPOWERMENT: expert carer; get informed; inform others; organise socially & politically. • SUPPORT: from/to professionals; from/to peers; universality, hope, understanding & empathy. • ACCESS: services – health; social; other e.g. commercial. • REMOTE CARE: monitoring – user-controlled; automated. • NEW TOOLS: Smart homes; assistive devices.

  6. New ICTs (internet) & carers: theoretical benefits • EMPOWERMENT: expert carer; get informed; inform others; organise socially & politically. • SUPPORT: from professionals; from peers; to peers; universality, hope, understanding & empathy. • ACCESS: services – health; social; other e.g. commercial. • REMOTE CARE: monitoring – user-controlled; automated. • NEW TOOLS: Smart homes; assistive devices.

  7. New ICTs & carers: possible threats • DIGITAL EXCLUSION: access; ability; accessibility; ehealth literacy. • DIGITAL ABUSE/MISUSE: real or perceived; malicious or random; regulated or unregulated. • DEPERSONALIZATION: human contact; automation. • DISSOCIATION: local context; effect on social ties? • THREATS TO PRIVACY AND TO AUTONOMY • PRACTICAL ISSUES: Royal Society report.

  8. Savenstedt 2006 • The duality in using information and communication technology in elder care. • ICT “Promoter of both inhumane and humane care” • Superficiality vs genuineness (closeness, intimacy) • Dissociation vs involvement • Captivity vs freedom • Unworthiness vs dignity (autonomy)

  9. Warwick University study • Aim • To understand how the networked society is changing the experience of caring for people with dementia and how networked information and communication technologies can support carers in their role • Objectives • To identify the current and predicted use of networked technologies by carers of people with dementia; • To identify the attitudes and beliefs of dementia carers towards networked technologies; • To identify the benefits and disadvantages of using networked technologies, now and in the future, for health and social care, information and support. • To identify the barriers and facilitators to the implementation of such technologies in dementia care; • To disseminate the findings to policymakers and other stakeholders to guide the implementation of new technology in this area of long-term care.

  10. Warwick University study • Research team • John Powell • Kathleen Gunn • Frances Griffiths • Bart Sheehan • Vinesh Raja • Aileen Clarke • Pam Lowe • Advisory group • Social services • Mental health services • Alzheimer’s Society • Age Concern • Carers

  11. Warwick University study • Methods • 1. Scoping work - literature review • - stakeholder interviews • 2. Interviews (semi-structured & vignettes) with carers in Coventry & Warwickshire. • 3. Workshops – local carers • - local practitioners • - national policymakers & industry

  12. Warwick University study • Progress so far • Ethics & R&D • Research fellow • Presentation at ESRC symposium • Literature review • Publicity/local engagement • Recruitment

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