CeciliaCraigNovember,2013

STAYINGCONNECTEDWITHTHEPERSON

SomeMythsaboutDementia‐they…• Theydon’tknowwhat’shappening…

•Dementiaisanormalpartofageing…

• Theydon’tknowwhattheywant…

• Theyareaggressive&violent…

• Theybehavelikechildren…

•Onlyolderpeoplegetdementia…

ImpactofDementia•Theexperienceofdementiainvolvesmanylosses:role;skills;identity;memoriesetc…•However…Thepsychosocialenvironmentcaneithercompoundoralleviatethatimpact:‘…socialcarepracticesinteractwiththeprocessofneurologicalchangetoweakenthe[person’s]senseofself…’ (Cheston&Bender,1999,p.167)•Responsibilitytohelpmaintainaconnectionlieswiththosethatarecaring•Socialcare

Propose3WaysofConnecting:

1. Creatingapositive‐livingenvironment

2. Preservingtheiridentity

3. Relationships

1.CREATINGAPOSITIVE‐LIVINGENVIRONMENT

Awelldesignedphysicalsettingcontributestotheperson’swell‐beingBUT…

Awellplannedpsychosocialenvironmentalsocontributestotheirwell‐being

Dinning

•Dinning&dinningareaasacatalysttoaperson‐centredness(Chaudhuryet.al.,2013)•Asupportiveonefosters:• functionalability• orientation• safetyandsecurity• familiarityandhome‐like• optimalsensorystimulation• socialinteraction• privacyandpersonalcontrol

DirectcontactwithnatureExamples…Aquarium•Thepresenceofanaquariuminthediningareasignificantlyincreasesfoodintakeinindividualswithdementia(Edwards&Beck,2012‐R)• Increasedfoodintake• Increasedweight

Pets•Thepresenceofadog,hasbeenshowntoincreasesocialbehav‐iors,includingsmilesandlaughs,inindividualswithdementia(Filan,2002‐R)•Pet‐owningpeoplewithdementiaexperiencefewerepisodesofaggressionandanxietythannon‐owners(McCabe,2002‐R)

Gardens• Asourceofmulti‐sensorystimulation&therapeuticvalue(Sempiket.al.,2003)

• Indoorgardening(Lee&Kim,2007)

• Improvedsleep• Decreasedagitation• Enhancedcognition• However….AreviewofUKregulatoryframeworkforresidentialcareenvironmentsfound…(Chalfort,2011‐R)• Requirementsforsafetytendedtokeepresidentsindoors• Standards‐notfarenoughtoensureaccessibilitytooutdoorspaces

•Questionstoask:Isthereagarden? Howaccessibleisit?

Psychologicalapproachese.g…CognitiveStimulationtherapy(CST)• Standardisedgroupsessions–stimulatescognition• CSTledtosignificantbenefitsincognition(Spectoret.al.,2003‐R)• CSTiscosteffective(Knappet.al.,2006‐R)• SignificantincreasesinMMSEScores&ImprovementsinQOLobserved(Coenet.Al.,2010‐R)

Reminiscence• Improvementsinmood,communication&cognition(MMSE)(Haightet.Al.,2006‐R)

Montessoribasedprogramming• Awayofpresenting&makingactivities• Increasedadaptivebehaviours,engagement&mood(Jarrottet.Al.,2008‐R)

Non‐tangibleTime•Thepersonwithdementialivesinthemoment (Cheston,2010)

• Orientationintimemaybemoreimportanttoothers•Whatthatpersondoeswiththattimeisimportant•Howthepersonusestheirtimeisdictatedbytheinstitution(Craig,2010)

• routine,taskfocused&order•Institutionalperspective:thedayis‘timetabled’• ‘Pocketsoforganisedactivity’occurusuallyintheafternoon–activityprogramme

•Spontaneityiscurtailed•Everydaytaskscanbetransformedintoopportunitiesforengagement

Routine•Routinesareimportantinlife•Orgainisationsneedstructurehowever….•Riskthat…routinebecomesthemainfocusofcareractivities

•Apersonwithdementianeedsroutine•Routinesassociatedwithlongtermmemory•Shorttermmemoryisthefirsttogowithapersonwithdementia•Therefore–maintaintheirownroutine

•Examples:• Alwaysgotupat12midday&neverwenttobedbefore3am• Hadtheirmainmealat6pmeachday•Wentforalongwalkjustafterbreakfast–boughtnewspaper•Workedfrom8am–5pm

•Whatwilltheorganisationdotohelpmaintainhis/herwell‐being?

Atmosphere•Apersonwithdementiafindsitdifficultto‘read’what’sgoingon•Dementiaaffects…• Rateofthinking• Reasoningability• Planningability• Judgmentetc..

•Reliesonnon‐verbalassessmentoftheirenvironment•Sensitivetotheatmosphereoftheplace

•Familiarity•Keytohelpingapersontofunctionwellintheirsurroundings•Physicalenvironment•Familiarobjectse.g.kitchen•Familiaractivities,voices,sensesetc…•E.g.• Smellsbringbackmemories&triggerconversation• Turffireexample

2.PRESERVINGIDENTITY• Identityisabouthavingasenseofself•Selfdoesnotceasetoexistjustbecausesomeonecan’trecalltheirmemoriesordoesn’tappeartohaveasenseofwhotheyare.(Matthews,2006)

•ForcarersorthosewhoKNOWthepersonwell‐elementsofindividualitystillremain•Responsibilitylieswithcarerstohelpthepersontomaintaintheirsenseofidentity

FocusingonthePerson•Languageconveysourthoughts,intentions,attitudesetc..•Attitudetowardsthepersonwithdementia•Asattitudeschange–ourlanguageshouldchangetoo•E.g.•Howmanydementiashaveyou?• The‘feeds’• The‘washes’The‘walkers’etc…

•Newattitude:• FocusonthePERSONand‘park’theDEMENTIA

•Newlanguage• Thepersonwithdementia• Assistingthepersontoeat&drink• Thepersonwhowalksabout..

•Treatwithrespectandequality•Keepthepersoninmind

Personalisingthelivingarea

•Nameonthebedroomdoor•Familyphotos•Furniturefromhome•Personalornaments•Arrangedinafamiliar

manner

LifeStoryWork•Lifestorywork–atangiblerecordofsomeone’slifeandexperiences• Identity• UnderstandingforCarers

•Meaningful•Resourceforreminiscing&activitydevelopment•Usetheirlanguage

•Userfriendlypresentation• Booklets,boxes,noticeboardsetc..

•Usethemes&topicsfromwhatthepersonsays•Guidingframeworks/booklets–usewithcareonly•Storage•Notallmemories

John’sShed

Hisgardenshedwashisprideandjoy–organisedwithtoolsthatwerethere‘justincase’they’reneeded!Hewouldspendalotofhistimeintheshed‘fettlingwiththings’.

Johnworkedinachickenfactoryforawhile:

‘Ihadtopluckthosefeathersoffthechickens’andthen’wewouldhangthemontheracks,upsidedown–aliveandall’.

‘Iwouldn’teatingthoseburgersifIwasyou!’

Tothisdayhewillnoteatchickenatall!

WomenGolfersJohnremembersthetimewhenwomenobtaintherighttobecomegolfers.

‘Didn’tseemright–itwasnoplaceforawomanandtheycausedhavocattheclubbeingassociatemembers’.

Abalancedlifehistorymaybeoneofthemostimportanttools

availableforrecreatingtherealstoryandrepresentingthereal

identityoftheperson…”

Eganetal.,2007(p.26)

Livingtheirlife•Activityisinallourlives• Asenseofpurpose&satisfaction• Enjoyment• Socialcontact

•Needforoccupationinlife•Activitiesneedtobesuitabletotheneedsandabilitiesoftheindividual•Groupactivities• Reminiscence,Physicalexercises,Sonasetc…• Notsuitableforallpeoplewithdementia

•One‐to‐oneactivities• Tailored,timedetc..

•Activityfocusedcare• Careasanactivityitself• Shortactivitieswhilegivingcare

3.RELATIONSHIPS•Socialbeings•Throughothersthatwepreserveouridentity•Theperson’sQOL&thestressofthecarerareassociatedwiththequalityoftherelationship(Woods,2011‐R)•Person‐centredapproach

•Nolanet.Al.,(2004)suggestthata…relationship‐centredcareapproach

…mightbemoreappropriate•Buildsonperson‐centeredness•Thisfocusesontheinteractionsasafoundationofanytherapeuticorhealingactivity(Tresoliniet.Al.,1994)•Providesthecontextinwhichcaringoccurs• Interpersonal&intrapersonalrelationships…•Enhancingtheirsenseofwell‐being

•Formingrelationshipswiththosewithadvanceddementiaisalsopossible(Ericssonet.al.,2011‐R)• Assigningtime• Establishingsecurityandtrust• Communicatingequality…

…allleadtoestablishingarelationship• Triadicrelationships…• Eachareinvolvedinanongoingprocessof‘negotiatingthebalance’(Quinnet.Al.,2012)

•Relationshipcentredapproach…•Sensesframework(Nolan,1997;Davieset.al.,1999;Nolanet.al.,2001,2002)Capturestheexperienceandtheindividuals’perceptionsoftherelationshipandtheinterpersonalprocesses.•Proposesthathealthyrelationshipsshouldinvolveasenseof…

Security PurposeBelongingness AchievementContinuity Significance

Summary•Stayingconnectedwiththeperson•Creatingapositive‐livingenvironment• Directcontactwithnature• Psychologicalapproaches• Non‐tangible

•Preservingtheiridentity• Focusingontheperson• Personalising• Lifestorywork• Livingtheirlife–occupation

•Formingtherapeuticrelationships

BEMYFRIEND..FORINEEDONE.BUTDONOTBEMYMANAGER.

REMEMBERMEASMYLIFE&IDENTITYERODE[FROMME]ASAPERSONNOTASACASE.

J.OSSOFSKY,1993

References• Chalfort,G.(2011)ConnectiontonatureatthebuildingedgeSaarbrucken:LAPLambertAcademicPublishing• Chaudhury,Hung&Badger(2013)HunTheroleofphysicalenvironmentinsupportingperson‐centereddininginlong‐termcare–aliteraturereviewAMJALZHEIMERSDISOTHERDEMENAugustvol.28(5)491‐500• Cheston,R.(2010)ThefineartoflivinginthemomentInJ.Gilliard&M.Marshall(eds)TimeforDementiaLondon:HawkerPublications• Coen,R.F.,Flynn,B.,Rigney,E.,O'Connor,E.,Fitzgerald,L.,Murray,C.,Dunleavy,C.,McDonald,M.,Delaney,D.,Merriman,N.,Edgeworth,J,(2010)EfficacyOfACognitiveStimulationTherapyProgrammeForPeopleWithDementia,IrishJournalofPsychologicalMedicine.

• Craig,C.(2010)Busy‘DoingNothing’InJ.Gilliard&M.Marshall(eds)TimeforDementiaLondon:HawkerPublications• Edwards,&Beck(2012)TheinfluenceofaquariumsonweightinindividualswithdementiaAMJALZHEIMERSDISOTHERDEMEN10.1097/WAD.0b013e3182769b34.• Egan,M.etal.,(2007)CaringforresidentswithdementiaandaggressivebehaviourJournalofGerontologicalNursingFebpp.24‐30.

• Ericsson,I.,Kjellstro,S.&Hellstro,I.(2011)CreatingrelationshipswithpersonswithmoderatetoseveredementiaDementia12(1)63–79• FilanSL,Llewellyn‐JonesRH.(2006)Animal‐assistedtherapyfordementia:areviewoftheliterature.IntPsychogeriatr.18:597–611.• HaightB.K.,GibsonF,&MichelY.(2006)TheNorthernIrelandreviewlifestoryprojectforpeoplewithdementia.Alzheimer’sandDementia2,56‐58.• Jarrott,S.E.,Gozali,T.,&Gigliotti,C.M.(2008).MontessoriProgrammingforpersonswithdementiainthegroupsetting:Ananalysisofengagementandaffect.Dementia,7,109‐125.doi:10.1177/1471301207085370

• Knapp,Met.al.,(2006)CognitiveStimulationforpeoplewithdementia:costeffectivenessanalysisBritishJournalofPsychiatry188574‐580• Quinn,C.et.al.,(2012)Negotiatingthebalance:Thetriadicrelationshipbetweenspousalcaregivers,peoplewithdementiaandAdmiralNursesDementia12(5)588–605• Lee,Y.&Kim,S.(2007)Effectsofindoorgardeningonsleep,agitationandcognitionindementiapatients–apilotstudyInternationalJournalofGeriatricPsychiatry23(5)485‐489.•Matthews,Eric(2006)DementiaandtheidentityofthepersonINHughes,Louw&Sabat(Eds)Dementia,mind,meaningandthepersonOxford:OxfordUniversityPress

• McCabeBW,BaunMM,SpeichD,etal.(2002)ResidentdogintheAlzheimer’sspecialcareunit.WesternJNursRes.24:684–696.• Nolan,M.et.al.,(2001)WorkingwithOlderPeopleandtheirFamilies:KeyIssuesinPolicyandPracticeBuckingham:OpenUniversityPress.• Nolan,M.et.al.,(2004)Beyond‘person‐centred’care:anewvisionforgerontologicalnursingInternationalJournalofolderpeople13(3a)45‐53.• Quinn,C.et.al.,(2012)Negotiatingthebalance:Thetriadicrelationshipbetweenspousalcaregivers,peoplewithdementiaandAdmiralNursesDementia12(5)588–605• Sempik,J.et.al.,(2003)Socialandtherapeutichorticulture:evidenceandmessagesfromresearch(Literaturereview)Loughborough:CCFR.

• Spectoretal.,(2003)Efficacyofevidence‐basedcognitivestimulationtherapyprogrammeforpeoplewithdementia:randomisedcontroltrialBritishJournalofPsychiatry183248‐254• Tresolini,CP&thePew‐FetzerTaskForce(1994)HealthProfessionsEducationandRelationship‐centeredCare.SanFrancisco,CA:PewHealthProfessionsCommission.

• http://www.youtube.com/watch?v=9uJi30HNb‐QMontessori• http://www.youtube.com/watch?v=FLDwzgRTbVA