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 The development of new technologies

Dementia A condition of progressive global impairment of higher cortical functions associated with underlying brain disease Affects over people in the UK Over people by million by % 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]

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]

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.

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.

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.

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)

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.

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

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

Warwick University study Progress so far 1.Ethics & R&D 2.Research fellow 3.Presentation at ESRC symposium 4.Literature review 5.Publicity/local engagement 6.Recruitment