Warwick Medical SchoolEhealth Research Group

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 diseaseAffects over 750000 people in the UKOver 870000 people by 20101.8 million by 20505% 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 involvementCaptivity vs freedomUnworthiness vs dignity (autonomy)

Warwick University studyAimTo 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

ObjectivesTo 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 studyResearch teamJohn PowellKathleen GunnFrances GriffithsBart SheehanVinesh RajaAileen ClarkePam Lowe

Advisory groupSocial servicesMental health servicesAlzheimer’s SocietyAge ConcernCarers

Warwick University study

Methods1. 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 far1. Ethics & R&D2. Research fellow3. Presentation at ESRC symposium4. Literature review5. Publicity/local engagement6. Recruitment