ageing population- dementia on the rise..

1. Disabling or Enabling Technology?Ethical and Practical Concerns of Assistive and Surveillance Technologies in Formal Dementia CareAlzheimer Europe Conference, 30th of May 2009 Alistair Niemeijer, M.A., Department Of Nursing Home Medicine, VU University Medical Center, Amsterdam

2. ageing population- dementia on the rise..

3. changing demographic: emergence of technological solutions • ‘Demographic Time Bomb’ (Alisky 2006) • ‘Care Vacuum’ (Agree et al 2005, Astell 2006) • Technology to the rescue! • Use of technology in relation people with dementia provokes conflicting reactions (Cash 2003)

4. assistive and surveillance technology in dementia care • vast variety of technological interventions in dementia care: • wandering detection (bracelets, chips); leefcirkels transl.: ‘living circles’; alarm systems, active/passive (movement detection, infrared devices) automation of domestic environment (automatic lighting, temperature, tv, domestic appliances); speaking/listening/video connections; camera surveillance • distinction between assistive and surveillance technologies • assistive technolgies offer assistance and support, enabling certain degree of independence over day to day activities • surveillance technologies aim to safeguard and protect & can serve as alternative to (other) forms of restraint • assistive technology enables; surveillance technology controls?? (Astel 2006)

5. ‘Wondering about the wanderers…’ • this form of (wandering) technology has sparked off considerable ethical debate • stigmatises, removes personhood, infringes human rights of privacy and dignity (Cahil 2003, Astell 2006) • ‘tagging should be reserved for criminals!’ (O’Neill 2003) • could lead to a more secure environment; decrease caregiver burden • isn’t policy of incarceration worse? (Bail 2003, Welsh et al 2003)

6. literature review • still unclear what ethical and practical implications would be in an intramural care setting.. • Main aim of the review: ‘..to explore what is known on effectiveness and acceptability of assistive and surveillance technologies in the intramural care for people with dementia and intellectual disabilities.’ • Insight in these issues serves multiple purposes: • can technology serve as viable alternative to freedom restriction? • setting forth the state of the ethical debate might contribute to development of clear(er) policies

7. method and procedure • 6 literature databases were searched: • Embase.com • PsycInfo • Cinahl • INSPEC • ETHXweb • Both controlled terms and free text terms were used • 1st category: captured all forms of dementia • 2nd category: terms related to assistive or surveillance technology • 3rd category: terms related to (potential) outcome/influence • last category: included all articles in Dutch/German/French/English • Inclusion criteria were set broadly

8. Table 1. Central themes and subthemes on assistive and surveillance technologies in the formal care for people with dementia or intellectual disabilities as covered in the literature

9. reliability/efficacy • functional efficacy • few (n=6) studies • practical problems • safety/risks • Only 2 RCT’s • False sense of security • caregiver burden • Too much emphasis?

10. Care relation • duty of care vs autonomy • carers exhibited lesser tolerance of risk due to fear of litigation (Robinson et al 2007b) • clear risk policy is needed (Bewley 1998) • replace care(giver) • use of technology might lead to degrading of skills (Cassidy 1994, Counsel&Care 1993) • use of technology is in itself demanding? (Lauriks et al 2008, Thompson 1998) • person centred care • technology should be catered to the individual

11. Rights of the patient • freedom and autonomy • issue of autonomy problematic • informed consent; wide consultation • privacy • ‘Big Brother effect’ (Casas et al 2006) • dignity/stigma • ‘safer walking technology’

12. Discussion • Hardly any RCT research • No ethical consensus has yet been reached, underlining the need for clear(er) policies • But for a few key articles, majority of articles lack in depth analysis • Difference UK and US • ‘mechanical acceptance’ (Eltis 2005)

13. Discussion • Lack of patient perspective • Empirical ethical research is lacking Limitations of this review • Appropriate terminology? • Search strategy

14. Conclusions • Study offers overview and elucidation of ethical debate and points to omissions • The thematic overview this study provides can contribute to the much described call for developing clearer policies • More research is needed, in particular taking into account the client perspective • Review is part of larger research project

15. Staff & Partners • Alistair Niemeijer M.A., Department of Nursing Home Medicine/ Institute for Research in Extramural Medicine, VU University Medical Centre, Amsterdam  In collaboration with: • C.M.P.M Hertogh, MD, PhD, Project Supervisor Department of Nursing Home Medicine/ Institute for Research in Extramural Medicine, VU University Medical Centre, Amsterdam • B.J.M. Frederiks, PhD, Department of Public and Occupational Health/Institute for Research in Extramural Medicine, VU University Medical Centre, Amsterdam • Prof. J. Legemaate, PhD, Department of Public and Occupational Health/Institute for Research in Extramural Medicine, VU University Medical Centre, Amsterdam • Prof. J.A. Eefsting, MD, PhD, Department of Nursing Home Medicine, Institute for Research in Extramural Medicine, VU University Medical Centre, Amsterdam  This research project is funded by the following organisations: RVVZ, Nuts Ohra, ActiZ, ‘Vereniging Gehandicaptenzorg Nederland’, ‘Het Zonnehuis’, ‘Stichting Regionale Zorgverlening Zeeland’

16. Thank you! • Thank you for your attention! For more information please contact me at: a.niemeijer@vumc.nl

17. Example searchstrategy (PsycINFO) Database(s): PsycINFO Thesaurusterminologie: Mental Retardation and Dementia met NT’s includes all intended terms PATIENT: P DE=("mental retardation" or "anencephaly" or "borderline mental retardation" or "crying cat syndrome" or "downs syndrome" or "home reared mentally retarded" or "institutionalized mentally retarded" or "mild mental retardation" or "moderate mental retardation" or "profound mental retardation" or "psychosocial mental retardation" or "severe mental retardation" or "tay sachs disease" or "dementia" or "aids dementia complex" or "dementia with lewy bodies" or "presenile dementia" or "alzheimers disease" or "creutzfeldt jakob syndrome" or "picks disease" or "senile dementia" or "senile psychosis" or "vascular dementia") OR kw=dement* OR kw=alzheimer disease OR kw=alzheimers disease OR ((ti=cogniti* OR ti=intellectual) AND (ti=impair* OR ti=dysfunction* OR ti=disabilit* OR ti=disabled OR ti=disorder*)) OR ((ab=cogniti* OR ab=intellectual) AND (ab=impair* OR ab=dysfunction* OR ab=disabilit* OR ab=disabled OR ab=disorder*)) INTERVENTION I Kw=domotic* OR kw=robotic* OR DE=robotics OR de=computer applications OR DE=computer peripheral devices OR kw=ict service OR kw=ict services OR de=information technology OR de=assistive technology OR de=apparatus OR de=telemedicine OR kw=electronic* OR kw=eas system OR kw=eas systems OR kw=non pharmacological OR kw=sensor OR kw=sensors OR kw=surveillance device OR kw=surveillance system OR kw=surveillance technology OR kw=assistive technology OR kw=gps OR de="automated information processing" or DE="automated information coding" or DE="automated information retrieval" or DE="computer searching" or DE="automated information storage" OR DE="information technology" AIM/GOAL O Kw=Wandering OR ti=safety OR de="accident prevention" OR kw=security OR kw=patient codingOR de=monitoring OR kw=walkingOR de="motor performance" OR kw=coercion OR kw=confinement OR kw=constriction* OR kw=constraint* OR kw=curtailment OR ti=control OR kw=freedom OR kw=immobili?ation OR kw=limitation* OR kw=restraint* OR ti=restrict* OR kw=autonomy OR ti=independen* OR kw=liberty OR kw=privacy OR kw=self determination OR kw=self reliance OR kw=self rule OR kw=self sufficient OR kw=self sufficiency OR kw=ambulatory OR kw=mobility OR kw=domestic OR kw=home OR de=tracking OR kw=tracking OR kw=tagging OR de=fear OR de=anxiety OR DE="computer anxiety" or de="performance anxiety" or de="social anxiety" OR DE=needs or de="health service needs" or de="psychological needs" OR de="well being" OR DE="risk management" OR DE="quality of life" OR DE="home environment" Total search in scheme: P AND I AND O > 246 hits (20080121) DE= dementia ab= cognitive ti= dysfunction robotics sensor assistive technology safety security restrain restrict