Safe to wander - Mental Welfare Commission for Scotland

Safe towander?Principles and guidanceon good practice whenconsidering the use ofwandering technologiesfor people with dementiaand related disorders

ContentsWhy have we prepared this guidance? 1What do we mean by ‘wanderingtechnology’ and why is it an issue? 2General principles in consideringthe use of new technologies 4Considering the use of wanderingtechnology: assessment and care planning 5Physical assessment 5Psychological assessment 6Assessment of risk 7Alternatives to wandering technology 7The care plan 8Consulting with the Care Commission 8Important legal considerations 9Summary and good practice checklist 10Checklist 11Bibliography 12Acknowledgements 12

1Why have we preparedthis guidance?The Commission has anactive role in ensuring thatindividuals have accessto care which is mostappropriate to theirindividuality, their uniquecare needs and their humanrights. We are often askedabout restraint and restrictionsplaced on individuals inmental health, learningdisability and older people’sservices. In response to thesewe produced ‘Rights, risksand limits to freedom’ whichsets out our views on the lawand good practice in thisarea of practice. In additionto questions on the broaderissues, the Mental WelfareCommission is occasionallyasked for advice on the useof technology in caring forpeople with dementia,learning disabilities andrelated disorders. Ourresponse is generally thatwe believe that technologycan be a valuable toolwhich has the potential tohelp people to maintain theirindependence and enhancetheir freedom and that,where new technologycan provide assistancewithout unduly restrictingor increasing the risks thatan individual may face,its use is to be welcomed.This publication providesmore specific guidancefor those considering theuse of new technologies,particularly in support ofindividuals with dementiawho are resident incare homes or hospitals.Although we focus ondementia and residentialcare, the principles of thisguidance may also provehelpful for people working toprovide care and treatmentfor other mental disordersin a range of settings,especially as the use ofemerging technologiesevolves to provide homebased alternativesresidential care.The Commission are notthe only source of advicein this area, guidance forstaff working in Scotlandhas also been prepared byNational Care StandardsCommittee and staff willalso be supported bypolicy and proceduresguidance prepared withintheir own services.

2Those consideringthe use of wanderingtechnologies have to beaware of the potential forthis to constitute restraint.What do we mean by‘wandering technology’and why is it an issue?The term ‘wandering’ canhave negative connotations.For the individual concernedhowever ‘wandering’ isusually a positive experiencewhich can provide physicaland psychological benefits.The Commission recognisesthat this term is oftenmistakenly used to describea wide number of differingtypes of behaviour and canbe considered unhelpful,particularly in relation topeople with a learningdisability. After a long debatehowever, we have decided torefer to ‘wandering’ in thisdocument as it remains,rightly or wrongly, the termmost commonly used indementia care settings.‘Wandering’ sometimessuggests aimless walking.This is sometimes the case,but it is more likely that thebehaviour has meaning forthe person with dementia.It is important to try tounderstand where theperson is trying to go andto recognise that walking todestinations of interest willbe of benefit to the person.We need to recognise that‘wandering’ is not necessarilybad and that the personshould be able to walk freelyand safely.In ‘Rights, risks and limitsto freedom’ the Commissionset out its definition ofrestraint. ‘restraint is takingplace when the planned orunplanned, conscious orunconscious actions of carestaff prevent a resident orpatient from doing what heor she wishes to do and asa result is placing limits onhis or her freedom.’ Basedon this definition, thoseconsidering the use ofwandering technologiesclearly have to be aware ofthe potential for their practiceto constitute restraint and totake this into account in theirdecision making.There are many examples ofthe creative use of technologyto support safe movementin care homes and hospitalsand technology is increasinglybeing used in individuals’own homes. Wanderingtechnology that can be putin place could include:• Sensor pads(beds, chair, floor)• Nurse/carer call systems• Panic buttons• Fall and movement sensors• Electronic tagging andtracking systems• CCTV/video surveillance• Intruder alertsThis document will focusexclusively on the use of‘tagging’ and trackingdevices. The term taggingis often associated withcriminal activity andsurveillance, shoppingand the prevention of crime.It can involve the use ofsatellite technology to alertthe police or probationservices that a person is inbreach of parole conditionsor a curfew. The use ofelectronic tagging in thisdocument is only in relationto care settings and hasno criminal component.To avoid confusion, the term‘wandering technologies’ willbe used in this document,nevertheless thoseconsidering its use shouldstill be sensitive to theperceptions that serviceusers, carers and staff mayhave of the technology.The use of wanderingtechnology is primarilyused for individuals who areconsidered to be at risk fromleaving a care environmentunescorted. It mainlyinvolves the use of boundary

3crossing alarms wherebya member of the care staffis alerted when an individualcrosses a pre-designatedboundary. The alarm alertscare staff that an individualresident is possibly at riskof leaving, though the systemitself does not prevent themfrom doing so. Wanderingtechnology also includesthe use of tracking deviceswhich can locate the wearerif he/she becomes lost orfails to return. Trackingdevices are currently rarelyused in this country forindividuals in care homesettings but the technologyis now becoming increasinglyeasily available and financiallyaffordable. Tracking devices,using global positioningsystem satellite technology,are currently being usedin Spain for some patientswith Alzheimer’s disease.Small electronic devices areattached to the individual’sclothing and they emit asignal which can be tracedif the individual strays froma previously designated area.New technology may providea less restrictive or morebeneficial care option thanother ways of managingan individual who wanders.A survey in 1998 suggestedthat up to 40% of individualswith dementia become lostat some point during theirillness and 5% get lostrepeatedly over manymonths. Over 70% of thosewho get repeatedly lost areadmitted into institutionalcare as a means to managethe risks of their illness.Many care establishmentsare locked or have barrierssuch as keypads or handlearrangements that requiresome skill to open. Suchbarriers can then restrictthe free movementof all residents of theestablishment, regardlessof whether they are at riskfrom wandering.For those individualsalready in residential care,wandering behaviour mayincrease, or pose a particularrisk to an individual, whomay as a result be moved toa more secure environment.This can prove unsettlingfor the resident and forcarers. Where the use oftechnology can play a partin maintaining independence,or enabling continuity ofcare, we think it should beconsidered.It is also worth recognisingthat physical activity maintainsand improves general healthand reduces the risk offalling in the elderly. Peoplewith dementia who have thefreedom to wander receivepositive health benefits fromtheir activity and wanderingtechnologies could havea part to play in promotingindividual health andwellbeing.

4On no account shouldtechnology be usedmerely to save on thecost of appropriatestaffing.General principlesin considering the useof new technologiesThe key to best managementof wandering behaviour is toallow the person to walk freelyand to destinations of interestwithout subjecting the personto unnecessary or causingunnecessary distress. Theuse of technology maycontribute to this, but only inconjunction with good designof the living environment,stimulation, meaningfulactivity and appropriatelytrained care-givers.A person for whom the useof wandering technologyis being considered is likelyto lack capacity in relationto decisions about its use,although this should not beassumed. Where capacityis lacking, it is important thatthe principles of the Adultswith Incapacity (Scotland)Act 2000 are applied indecision making:The intervention mustprovide a benefit that cannototherwise be achievedWhat will the benefit ofthe technology be to theindividual? If usedappropriately the benefitmay be improved personalsafety, increased dignity,independence and senseof freedom. It may reducethe need for obtrusive levelsof observation that could bedistressing for the individual.There might be drawbacks tothe use of such technology.Apart from unnecessaryrestriction of freedom,(see below) it may providea false sense of security.The person may travel withinan apparently safe area butmay not be alert to significantrisks within that area. Also,the person may leave thesafe area and suffer harmbefore care-givers canrespond to an alert. Theuse of new technology mayreduce personal contactwith care-givers and this isunlikely to benefit the person.Technology is no substitutefor appropriate levels ofpersonal care and humaninteraction. On no accountshould technology be usedmerely to save on the costof appropriate staffing.The intervention must be theleast restrictive in relation tothe person’s freedom in orderto achieve the desired benefitWill the technology resultin the least restrictionconsistent with the person’sdignity, safety andindependence? There islikely to be a tensionbetween protection andsafety, versus privacy anddignity. Technology mayallow the person morefreedom than locking doorsor having a member of staffwatch the person at all times.However if the person oftenhas to be retrieved andreturned to the place ofresidence, it may resultin increased distress orpublic ridicule.The past and present wishesof the person must be takeninto accountCare-givers should notassume that the personlacks capacity in relationto wandering technology.People whose cognitive abilityfluctuates may be capable ofstating their wishes to be safeduring periods of increasedconfusion and can participatefully in decisions. Even whenthe person appears to lackcapacity, care-givers mustmake every effort possible

5to discuss such risks and tohelp the person to understandthe benefits of technologysolutions. Care-givers shouldmake a careful record ofsuch discussions includingwhether the person agreesor disagrees with the useof technology. This must beapproached with sensitivityand only after the person hashad time to come to termswith his or her diagnosisand its implications.The views of relevant othersshould be taken into accountA wide range of people willhave valuable roles to playin the decision on whetherto use wandering technology,including:• Nearest and close relativesand friends will knowthe person best andcan provide valuableinformation about his/herlife. This may be crucial inunderstanding the person’sbehaviour. They will alsohave views about risks anddignity and these shouldbe taken into account.• A welfare attorney orguardian with powersover the person’s welfaremay have the authorityto consent to the useof wandering technology.Even where a specificpower is not included inthese granted these mayinclude decisions onthe person’s place ofresidence, which may beaffected by the potentialuse of technology. In suchcases it is important toconsult such a person onthe use of technology.• Professional carers willhave experience inmanaging wanderingbehaviour, in particular theiradvice on environmentaldesign or modificationsand assessment of riskwill aid the decisionmaking process.The intervention shouldencourage the person to useexisting skills and developnew onesThis principle is to beobserved by attorneys,guardians and managersof care establishments,and represents good practicefor anyone involved in theperson’s care. If the useof technology to managewandering behaviourincreases the opportunityfor the person to use existingskills and to develop newones, then it merits seriousconsideration.Considering the use ofwandering technology:assessment and careplanningPrior to introducing anywandering technologysystem there should becareful physical andpsychological assessmentto eliminate any reversiblecause of the wanderingbehaviour. This assessmentwould involve analysing whatis actually happening, whenit is happening, what triggersthe behaviour and whatintervention helps.• Physical assessmentAny physical assessmentsshould be multi-disciplinaryand should include:Medication reviewMany medications for bothphysical and psychiatricconditions have side-effectswhich can include motorrestlessness, confusion andconstipation amongst others.All of these side-effectscan contribute to thedevelopment of worseningwandering behaviour andmedications should beregularly reviewed by themedical practitioner(particularly those suppliedfor the treatment of anxiety,depression and insomnia).

6EliminationConstipation or urinarydiscomfort can lead torestlessness and shouldbe addressed. Searching fora toilet and worries aboutincontinence can also bean issue. Toilets should beclearly identified.Pain assessmentSome people with dementiaare not able to express theirpain, which can manifest asrestlessness or increasedconfusion. The physicalexercise that wanderingprovides may prevent paindeveloping, or provide a formof pain relief in itself. Earlypressure sore developmentcan cause extreme pain withno obvious visible injury.Other factors for considerationDeterioration in hearing orvision can lead torestlessness and increasedconfusion. It is extremelyimportant that these areassessed regularly and thatspectacle and hearing aidsare well maintained andavailable.A person may be wanderingbecause he or she is toohot or too cold and is tryingto find a more comfortableenvironment. Hunger andthirst may also be a factor.A poor sleep pattern cancontribute to wanderingbehaviours and it is wellknown that infection canincrease confusion andrestlessness. Thesepotential causes shouldbe investigated quicklyand treated appropriately.• PsychologicalassessmentIdentification of thepurpose of walkingUnderstanding what theperson is trying to achieveis critical to successfulmanagement of wanderingbehaviour. The person maybelieve that he or she hasto go somewhere orsomething to do. Most likely,this will involve tasks fromthe person’s past that he orshe believes are necessaryin the present. Exampleswould be going to work orgetting the family’s dinnerready. The person maybelieve that he or she livesat a former address andmay be attempting to gothere. Life-story books andinformation from relativesand friends can provideknowledge of his or herlife history that may be veryhelpful in understanding theperson’s present behaviour.Wandering as communicationof distressWandering may be occurringsimply because the personis bored and unstimulatedin his or her environment.The person may not havea peer group he or she canrelate to, or feel cut off fromhis or her family and friends.These issues this wouldneed to be fully addressedin an individual care plan.Depression is very commonamong people with dementiaand can require specialistinput with regard to diagnosisand treatment. Depressioncan lead to anxiety whichproduces restlessness andan inability to initiatemeaningful activities.Wandering may also becaused by feelings offearfulness. The person maybe afraid of particular aspectsof his or her environment,for example uncontrollednoise levels or individualphobias. Psychologicalassessment should alsoconsider if there is anyevidence of hallucinations,delusions or delirium as thesecan be extremely frighteningfor the individual.

7Assessment of riskAny assessment must includeanalysis of the risk that isbeing presented. This mustfocus on the risk to theindividual, not the organisationor care facility. Assessmentshould always take the viewsof the individual, formal carersand involved relatives intoaccount. There should be acareful evaluation of the riskthat is presented and thelikelihood of that occurring.The risk to the individual ofany proposed interventionshould also be discussedand this would includepsychological as well asphysical safety concerns.Care establishments shouldhave written policies on careplanning and risk assessmentthat take into account theperson’s need to exerciseand move freely.Alternatives to wanderingtechnologyBefore considering the useof wandering technologythere should be an appraisalof the interventions thathave been tried to date.This should form part ofthe assessment process.People with dementia needappropriate stimulation andactivity. Individual care plansmust reflect this and willbenefit from input from askilled occupationaltherapist. A person withdementia who finds him orherself in an understimulatingenvironment, maywell explore in an attempt tofind something moreinteresting or meaningful todo. It would be whollyinappropriate to use atechnology solution for thisbehaviour, unless greatattention is paid toappropriate, person centredoccupation and stimulation.The importance of dementiafriendlydesign, including thecreative use of outdoorspace should not beunderestimated althoughthere will obviously bephysical limitations in older,non-purpose built units.Ideally, buildings shouldprovide open access to safeoutdoor space. The internalenvironment must containdestinations that are ofinterest. Long corridorsleading to locked exit doorsmust be avoided.Small changes in practiceand environments can havesuccessful outcomes. Theimportance of exerciseshould be taken into accountand incorporated into the careplan as appropriate.The use of cloth panels toconceal doors or door knobs(which can be described as‘subjective barriers’ towandering in that theyappear as an obstruction onlyto those who are cognitivelyimpaired) could offer a lessrestrictive option than alocked door.Another alternative towandering technologyis the adaptation of nursingobservation policies to meetthe needs of the individualflexibly and when mostnecessary. Many individualsrequire increased levels ofobservation only at particulartimes of day and night,rather than having fixedobservation levels.

8The care planFollowing individualassessment, any factorsidentified can be addressedin his or her care plan. If adecision is taken to introducewandering technology thena specific care plan relatingto its use should be drawn up.This care plan should address:How the technology works?There should be clear,explicit instructions forstaff about how the systemworks and training inthe use of the system,including maintenanceand contingency plans inthe event of malfunction.Training should be viewedas an ongoing need, nota one-off occurrence.The plan will includedefinition of which areasare considered safe for theindividual and which arenot. There must be clearidentification of who willrespond to the alarm andwhen, of what shouldhappen if the individualrefuses to return. This mayinvolve external agenciessuch as the police. Thepolice will need to beconsulted if they maybe required to respond.Involvement of the individualand relevant othersThere must be a clear verbalexplanation of the systemgive to the individual,relatives, visitors andadvocacy workers. It wouldbe good practice to providewritten information aboutthe system.MonitoringIt will be extremely importantto monitor how well, or not,the system is working. Thisshould include reports ofhow often the system is beingtriggered and the individual’sreaction to it. It will beimportant to monitor if therehas been a change in theindividual’s general wellbeing.ReviewRegular review dates shouldbe set and all involvedprofessionals and caregivers,both informal andformal, should be invitedto the review. It would bebest practice for the keyworker/named nurse andunit manager to be present.There should be an identifiedsenior manager who receivescopies of the reviews. Theprimary purpose of thereview is to considerwhether ongoing use of thesystem is indicated or not.Consulting with theCare CommissionIt is of vital importance thatmanagers of care homesconsult with the CareCommission if considering theuse of wandering technology.Under the Regulation ofCare (Requirement as toCare Services) (Scotland)regulations 2002, 19 (3),‘A provider shall keep arecord of: any occasion onwhich restraint or control habeen applied to a user, withdetails of the form of restraintor control, the reason why itwas necessary and the nameof the person authorising it’.

9Important legalconsiderationsAs outlined in the sectionon general principles, theAdults with Incapacity Actmust guide the process ofdeciding on the use ofwandering technology. Thissection examines the impactof specific principles of thisAct, the principles of theHuman Rights Act and theprovisions of the MentalHealth (Care & Treatment)(Scotland) Act 2003.Human Rights ActThe legal rights of theindividual have becomeincreasingly significant withthe introduction of theEuropean Convention onHuman Rights into UK Law.Articles 3,5 and 8 could beof particular relevance tothose considering the useof wandering technologies. Indeveloping this guidance wefeel it is particularly importantto emphasise Article 5 ofthe Convention; ‘Everyonehas the right to liberty andsecurity of person. No oneshall be deprived of his libertysave in the following casesand in accordance with aprocedure prescribed by law.’One of the cases is ‘thelawful detention of personsof unsound mind’. TheEuropean Court has ruledthat failure to follow legalprocedures to detain a personin hospital for treatment ofmental disorder was unlawful.This ruling has implicationsfor the management ofpeople with dementia or othermental disorders who wander.In addition, Human Rightslaw says that the personmust not be subject todegrading treatment and hasa right to privacy. Anydecision to use technologymust be consistent withthese principles. In practice,attention to the principlesof the Adults with IncapacityAct will be likely to resultin compliance with HumanRights law.Specific measures underthe Adults with IncapacityScotland ActIncapacity legislationmakes several provisions fordelegation of decision makingfor people lacking capacity.A person, while capable,may appoint a Welfare Powerof Attorney to take decisionson his or her behalf oncecapacity is lost. WelfareGuardians can be appointedby the court to makedecisions on behalf of anadult who lacks capacity. Theviews of Welfare Attorneysand Guardians must alwaysbe considered when makinga welfare decision. If specifiedin the powers granted, theAttorney/Guardian may havethe authority to decide on theuse of technology. Hospitaland care home managersshould be aware of the extentof the Attorney’s powersand may need to seek legalclarification on this.If there is no Attorney orGuardian with the authorityto make decisions abouttechnology, anyone facedwith a decision about the useof wandering technology willneed to consider whether toseek a Guardianship orderunder part 6 of this Act. Ifthe intervention is necessary,and if the person lackscapacity in relation to thisdecision, it can be arguedthat Guardianship isnecessary.The Commission takes theview that, where a persondemonstrates a purposefuldesire to leave his orher place of residencea Welfare Guardian shouldbe appointed should it benecessary to restrict theperson’s movements. Wherewandering behaviour is moreaimless, the legal situationis less clear and it can be

10New technology is nosubstitute for humanand compassionatecare.argued that Guardianshipis unnecessary and toorestrictive.Good practice guidanceon the use of the Adultswith Incapacity ScotlandAct is available from theCommission’s websitewww.mwcscot.org.uk.Mental Health (Care& Treatment) (Scotland)Act 2003This Act authorises detentionin hospital and the use ofwandering technology couldbe regarded as treatmentfor mental disorder underthis Act. Mental health lawcan authorise compulsorymeasures to ensuretreatment outside hospital,this may also includewandering technology. It is,however, unlikely that thistype of legislation would beappropriate for people notalready liable to compulsorymeasures for other reasons.Summary and goodpractice checklistAll technologies, includingwandering technologies,have the potential for abuse ifnot used within a proper legalframework and with referenceto good practice guidance.Where such technology isused, great care must betaken to ensure that theperson concerned has hisor her rights protected. It ispossible to see the potentialbenefits of wanderingtechnology for the individualin some cases, but thisshould never stigmatise theindividual and should neverreplace direct contact withcare-givers. New technologyis no substitute for humanand compassionate care.It is acknowledged howdifficult it can be for care staffto provide a balance betweenthe autonomy of the individualand the duty of care owed tothat person by the care homeor hospital staff. By placinglimits on the individual’sability to leave the caresetting, there could actuallybe an opportunity to offer aless restrictive environmentand this apparent tensioncan cause dilemmas forstaff and relatives.The use of technology,including wanderingtechnology, in care homesand hospitals is not in itselfa good or a bad thing.Where technology is used,this should be as a tailoredand appropriate responseto the identified risks facedby an individual. Howtechnology is applied canmake the difference betweenproviding restrictive andinflexible care, or a freedomenhancing setting.

11ChecklistConsider causes of behaviourAssess the risks to the individualConsider alternatives to use of technologyIdentify if wandering technology is available and appropriateAscertain views of individual, relatives, care team, Care Commission etcConsider ethical implications, the benefits and disadvantages of the systemConsider legal implications for individual, in particular the possible useof Adults with Incapacity (Scotland) Act 2000Formulate individual care planEnsure all staff and involved relatives understand care planMonitor implementation of care planReview care plan frequently

12BibliographyLegislationAdults with Incapacity(Scotland) Act 2000,HMSO, Edinburgh, 2000.Human Rights Act 1998,HMSO, 1998.Mental Health (Care& Treatment) (Scotland)Act 2003, HMSO, 2003.European Court of HumanRights: HL v the UnitedKingdom (applicationno.45508/99).OtherAlzheimer’s Society –the Society’s position onelectronic tagging is availableat www.alzheimers.org.uk.Bosch, X. Spain planselectronic tagging forpatients with Alzheimer’sDisease, The Lancet,Volume 355 (9208).Kirkwood, T. DementiaRediscovered, Buckingham:Open University Press 1997.Klein, D. Steinberg, M.Wandering Behaviourin Community ResidingPersons with Dementia,International Journalof Geriatric Psychiatry,Volume 14, 1999 pp 272.McShane et al. Trackingpatients who wander: ethicsand technology, The Lancet,Volume 343 (8908) May 1994pp1274.Mental Welfare Commissionfor Scotland, Rights, risksand limits to freedom, 2006.Patrick, H. When to invokethe Adults with Incapacity Act,Mental Welfare Commissionfor Scotland, 2005.Patrick, H. Authorisingsignificant interventions forpeople who lack capacity,Mental Welfare Commissionfor Scotland, 2004.Price, JD. Herman DG.Cochrane Databaseof Systematic Reviews,Subjective Barriersto Prevent Wanderingof Cognitively ImpairedPeople, Issue 3, 2001.Values into Action, “Tagging:A technology for careservices?”, 1998.AcknowledgementsWe wish to thank all who gaveadvice on the content of thisdocument during the variousstages of its development.In particular we wish to thank:• Alzheimer’s Scotland• Association of Directorsof Social Work• Care Commission• Dementia ServicesDevelopment Centre,University of Stirling• Glasgow DementiaWorking Group• Royal College ofPsychiatrists, ScottishDivision• Royal College of Nursing,Scotland• West Lothian Council

Thistle House91 Haymarket TerraceEdinburghEH12 5HETel: 0131 313 8777Fax: 0131 313 8778Service user and carerfreephone: 0800 389 6809enquiries@mwcscot.org.ukwww.mwcscot.org.ukJuly 2007