Some key issues in Gerontology for Gerontechnology

1. Some key issues in Gerontology for Gerontechnology ISG Master Class, Eindhoven 13.11.07 Professor Anthea Tinker, Professor of Social Gerontology and Chairman of the King’s College London Research Ethics Committee

2. Outline of the presentation • Definitions: who are older people? • What is gerontechnology: the different definitions • The lack of a theoretical framework • Ethical issues • The involvement of older people themselves • Challenges and problems of multidisciplinary working

3. 1. How do we define older people? • Should it be by age? • In most UK government documents/policies it is by chronological age e.g.it is 50+for employment policies and for services it is usually 60+, 65+ or pensionable age • Biological age? • Cultural differences

4. Vulnerability? • This would apply for any age group and can be related to characteristics such as physical and/or mental incapacity • Physical frailty need not imply mental incapacity • But there may be a particular combination of circumstances which makes an older person more vulnerable e.g. female, living alone, lives in a deprived area, living in an institution

5. Special issues for end of life research? • But this is not necessarily restricted to older people • Issues of: - inclusion - sensitivity - ongoing consent - attrition

6. Issues to do with gatekeepers • Some older people may be more likely than the general population to have gatekeepers e.g. care home managers, sheltered housing wardens • Some problems in social research where the gatekeepers try to screen out certain older people from research

7. What about exclusion from research? • Older people (especially in medical trials e.g. of medication) may be excluded from research and this is a matter of concern when the results are extrapolated to this group • The same is true in social research e.g. some questions e.g. relating to employment may not be asked of people over a certain age • This can be age discrimination

8. Age gender bias – consequences in medicine • Uncertainty re risks and benefits of new treatments in older people • Under treatment of older people • Delays in bringing new treatments to older people (S. O’Mahony, Royal Society of Medicine conference 26.10.06) Are there lessons about exclusion for the social sciences?

9. Designing research on older people • Consider seriously the upper age limit and why this is necessary • Look at studies done among the upper age ranges e.g. the extensive literature on the over 90s and centenarians • Involve older people themselves as advisers and sometimes as researchers (see later)

10. 2. What is gerontechnology? • See the excellent article in Gerontechnology Oct 2007 • This is not a familiar term to people in some countries e.g. the UK • The journal states its objectives as ‘devoted to the fundamental aspects of technology to serve the ageing society’ • This is a wide interpretation • The UK tends to consider specifically ‘assistive technology’, ‘aids and adaptations’, telecare and telemedicine. These can sometimes be interchangeable but are important when funding is involved.

11. Assistive technology (AT) and devices • ‘Assistive technology is an umbrella term for any device or system that allows individuals to perform tasks they would otherwise be unable to do or increase the ease and safety with which they can be performed’. • An assistive device is ‘Equipment that enables an individual who requires assistance to perform the daily activities essential to maintain health and autonomy and to live as full a life as possible’. (WHO 2004 A glossary of terms for community health care and services for older persons).

12. Aids and adaptations • A major focus of housing policies in the UK • Grants • Home improvement agencies

13. Telecare • Included for this purpose is telecare which is care provided at a distance: • ‘The continuous, automatic and remote monitoring of real time emergencies and lifestyle changes over time in order to mange the risks associated with independent living’ Department of Health, January 2005 • ‘The transfer of information about health related issues between one or more sites’ (Wootton and Craig, 1999)

14. Telemedicine The World Health Organisation definition is: ‘The employment of communication technology to provide assistance in the diagnosis, treatment, care and management of health conditions in remote areas’. (WHO 2004)

15. Telemedicine • Tele – at a distance Definitions include these phrases: ‘The delivery of health care at a distance’ ‘The remote exchange of physiological data between a patient at home and medical staff at hospitals’ The assumption is that there is a health professional at one or both ends of the communication

16. Assistive technology, telecare and telemedicine in the UK Summary for older people • Most assistive technology is fairly basic even in remodelled buildings (see next slide) • Telecare, especially alarms and sensors, is high on the agenda of government social care policies • Telemedicine – little for older people

17. Assistive technology in remodelled buildings • Recent research project on ‘Remodelling sheltered housing and residential care homes to extra care housing’. • In 10 case studies looked at the architectural, social, economic and AT implications • For AT little was provided, problems of accessibility hindered provision, inadequate showers and other problems (Tinker et al, 2007 Summary and Tinker et al 2007 Advice to housing and care providers, both on King’s College London, Gerontology web under research publications).

18. 3. The lack of much theoretical framework • Much research seems to be quite pragmatic • There are useful concepts in gerontology which are not always used such as autonomy, life course approach, activity and disengagement theories, well being etc • Does this lack of theory matter?

19. 4. Ethical issues • There are ethical issues to do with the inclusion or exclusion of older people discussed previously • Other major issues are to do with consent, research on people with dementia, incentives, privacy (See A Tinker, 1994 ‘Ethical issues’ in O Stevenson (ed.) Community care for very old people: Technology for living at home’. Akontes Publishing).

20. The special case of older people with dementia • Smart houses (e.g. those developed by Dr Ad van Berlo) • Tagging – a controversial option • Monitoring – a growing field. Use of cameras and other devices • Action and support for carers e.g. via the internet for carers • Computer generated interactive experiences

21. Some key issues (ctd) Ethical issues especially for people with dementia include: • Consent • Privacy of information and person/place • Equality of access • Autonomy versus independence • Paternalism • Patient and provider relationship • Medicalisation of the home

22. 5. The involvement of older people themselves • Older people: - deciding on the research topic - advising on the research - doing the research - disseminating the research None of these should mean just paying lip service to older people nor by paying attention only to the ‘statutory’ older person

23. 6. Challenges and problems of multidisciplinary working Why undertake multidisciplinary research? • Because older people cannot be looked at from one perspective only • A lot of funding is dependent on this • It can be interesting and fun • When it works it is great –when it doesn’t it can be hell

24. Some advantages of multidisciplinary research • Learning about the concerns and issues of other disciplines • The value of sharing the work • Getting a different perspective on methods • More people to co-author publications • More places e.g. in journals to place articles, books etc • More opportunities to reach a larger audience

25. Some disadvantages of multidisciplinary research • Different languages • Different methodologies • Different ways of working • Sharing the work – matters of hierarchy • Ditto authorship

26. Some general references • M Smyth and E Williamson (eds) (2004) Researchers and their ‘subjects’: Ethics, power, knowledge and consent, Policy Press, Bristol • A Tinker (2007) ‘Ethics and older people’ in A Leathard and S McLaren (eds) Ethics: Contemporary challenges in health and social care, Policy Press, Bristol Contact anthea.tinker@kcl.ac.uk