Dr. John Woolham Senior Research Officer Northamptonshire County Council

Technology, ethics and achieving good outcomes for people living with dementia: Northamptonshire's Safe at Home Project. Dr. John Woolham Senior Research Officer Northamptonshire County Council Community Services Directorate February 2006.

What this presentation will cover • Why use assistive technology to help care for people with dementia? • Background to the ‘Safe at Home’ project • Project structure and functions • What kinds of technologies were used? • Ethical ‘good practice’ and its application in the project • The impact of technology on people with dementia and their carers

1. Why use technology to support people with dementia? • UK has an ageing population: same in many other European countries • The ratio of working to retired people will be smaller • There is some evidence in the UK that geographical mobility reduces the availability of relatives to provide care • Institutional care is expensive • Institutional care is not what people say they want • Admission into institutional care is sometimes a response to a very specific problem • The general direction of UK and European social care policy is towards empowerment and maintaining optimum independence. • New technologies now make possible their use for people with dementia.

2. Northamptonshire’s Safe at Home project: background • Northamptonshire’s involvement in the EU funded ASTRID project • Reasons for being interested in dementia • Reasons for being interested in assistive technology • Putting principles into practice – the Safe at Home project

3. Safe at Home: project structure & functions • 3 ‘Demonstration houses’ • Three full time project workers • Project depends on • multi-agency partnership working • multi-disciplinary professional skills • Care Management • Community Psychiatric Nursing • Occupational Therapy • Housing & technical support • The project also uses qualified electrical engineers and Corgi registered gas fitters where needed

3. Safe at Home: structure & functions: The story of Mrs White and her gas cooker….. • The Problem: • Forgets to light gas cooker after turning it on. • Risk of suffocation or explosion • High level of concern from neighbours and relatives • The Solutions? • Admission into care • Substitute gas for electric or microwave • Disconnect cooker • Use technology to manage risks

4. What kinds of technologies did the project use? • Stand alone devices needing no real installation • Devices that communicate with one another and to a local call centre • Devices that collect and process information before downloading it for interpretation • A total of over 50 different kinds of device were used • Devices were used to remind and prompt, protect against flood, fire, gas explosion, & alert if falling or ‘wandering’ occurred. • Average cost was less than £150 per person

5.Can assistive technologies be used in an ethical way? • Most technology to support people with disabilities is user activated and can’t always be used by someone with dementia • Newer technologies work ‘passively’ and no user input is required. • If informed consent to use it can’t be obtained, using passive technologies can create ethical dilemmas: • Would using it without consent be an invasion of privacy, or in the best interests of someone with dementia? • Can it ever be used in an ethical way for people who can’t give informed consent to its use?

5. Can assistive technologies be used in an ethical way? • How did the project try to use technology in ethical ways? • Consideration of ethical issues not reducible to a recipe: requires careful judgement. • Judgement needs to be based on values. • Four principles: • Autonomy • Justice • Beneficence • Non-malfeasance • Perspectives • Paradigms

5. Can assistive technologies be used in an ethical way? • Designing a process that reflects these values: the development of a record used by project workers • What efforts have been made to find out what the person with dementia’s views are? (autonomy) • Is technology the best solution? (justice) • What would happen if technology was not used? (non-malfeasance & beneficence) • What would might happen if technology were used? (beneficence & non-malfeasance) • What do key people think – exploring views of relatives, carers, other professionals etc (perspectives) • How would we respond if it was someone who had different needs and not dementia?(paradigms)

5. Can assistive technologies be used in an ethical way? • Applying the theory to practice: Mrs White again. • Can Mrs White explain what she would like to happen? • Is the use of technology the best solution? • What would happen if technology wasn’t used (what evidence is there for this) • What is it intended by using assistive technology? • What do relatives, neighbours and social workers think? • Would we treat someone with different needs differently?

5. Can assistive technologies be used in an ethical way? • Other issues to consider in using assistive technology for people with dementia • It should aim to support maintained skills not emphasise those that have been lost. • It shouldn’t require the person to learn how to use it • It should provide the user with an experience of success and give the person using it a feeling of independence: it should support them in making choices • It should never be used as a substitute for social care

6. Impact. Does using technology in this way lead to good outcomes? Key objectives of the evaluation. • To assess the reliability of any technology used in the project • To assess the extent to which any technology used supported unpaid carers and relatives • To assess the success with which technology helps service users to maintain their independence • To examine the cost effectiveness of the project

6. Impact. Does using technology in this way lead to good outcomes? Methods • Longitudinal design – 21 months • Criteria for inclusion in evaluation: • Met criteria for referral to project • permission given to use data for research purposes • Control group from a similar Social Services Department elsewhere in the U.K. to collect outcome and cost data • No sampling.

6. Impact. Does using technology in this way lead to good outcomes? Methods • User (n=233) and control group (n=179) were well matched on key variables including age, gender, mini-mental state score etc.

6. Impact: The reliability of the technology • The study identified ‘non-technical’ as well as ‘technical’ reliability issues • 91% of devices worked perfectly over the course of six 3 monthly checks. • Some devices were ‘fiddled’ with & dismantled by service users. • Some devices were mistaken for another household device and inappropriately used. • Some devices were rejected outright by service users. • Acceptance of, and consent to use the technology sometimes required practise skills of a high order. • These findings suggest a need for a very good understanding of the social and environmental context within which the person with dementia is living and interacting.

6. Impact: on relatives and unpaid carers • 123 relatives and carers were surveyed and 70% replied. • A carer stress scale was used to measure the impact of the project. In all but one item the scale score was lower (i.e. the relative or carer was less stressed) after the project had provided technology. • These changes in score were statistically significant in 9 of the 13 items on the scale (w=0.001)

6. Impact: On supporting independent living • Functional assessment scores for people at referral and 12 months later declined (i.e. showed evidence of slight improvement) on three of the eight sub-scales. • All sub-scale scores were statistically significant (x2=<0.001)

6. Impact: On supporting independent living • The control group was used to compare the rates at which people left the community. • People from the control group left the community sooner and in greater numbers: they were four times more likely to leave the community than Safe at Home users.

6. Impact: Might other factors have been responsible for keeping people living independently for longer? • The study considered if other factors might be responsible for these outcomes • The composition of the two groups: • no sampling occurred • the two groups were large and well matched on a range of factors. • Provision of care: people from the control group received • more services, • more hours of help • more visits.

6. Impact: Cost effectiveness • The project was extremely cost effective as fewer people spent less time in hospital, residential or nursing care. • The net equivalent saving over 21 months was £1,504,773.

Safe at Home: conclusions • Risks • Use of technology is ‘technology led’ not ‘person centred’ and determined by need • Failure to understand or apply ethical protocols where informed consent is difficult or impossible • Used as a substitute for social care

Safe at Home: conclusions • Benefits: • Assistive & telecare technology: a win-win situation? • Supports carers • Consistent with what most service users would prefer • Very cost effective. • Can be used to • Manage risk • Provide support and reassurance • Predict the occurrence of ‘risky’ activities • Limits to use are • Availability of technological solutions • Infrastructure and will to support • Skill and imagination of service providers

References • Bjorneby, S., Topo, P., & Holthe, T., Technology Ethics and Dementia: A Guidebook on how to apply technology in dementia care. (1999) Norwegian Centre for Dementia Research, SEM, Norway. ISBN 82-91054-62-2 • Hope, T., & Oppenheimer, C., Psychiatry and the Elderly. Oxford University Press 1997. • Marshall, M (ed) ASTRID: A Social and Technological Response to meeting the needs of Individuals with Dementia (2000) Hawker, London. ISBN 1-874790-52-3 • Wey, S., One size does not fit all (2004) In Perspectives on Rehabilitation and Dementia Marshall, M. (ed) London, Jessica Kingsley. • Woolham, J. & Frisby, B. Building a Local Infrastructure that Supports the use of Assistive Technology in Dementia Care (2002) Research Policy & Planning Vol 20. No.2. (offprints are available from this journal at www.elsc.org.uk ) • Woolham, J. & Frisby, B. Using technology in dementia care (2002) in Dementia Topics for the Millennium and Beyond Benson, S. (ed) Hawker, London. • Woolham, J. Safe at Home – supporting the independence of people living with dementia by using assistive and telecare technology (Hawker, London 2005) ISBN 1-874790-77-9 • Woolham, J. (ed) Perspectives in the use of Assistive Technology in Dementia Care (Hawker, London, 2005) ISBN 1-874790-83-3

Dr. John Woolham Senior Research Officer Northamptonshire County Council