What works resource pack

8/3/2019 What works resource pack

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Involving People

Living with Dementia

Making Involvement Count


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MAKING INVOLVEMENT COUNT

SECTION 01 - Background

1 - INTRODUCTION

The Involving People Living with Dementia Reerence group, commissioned by the South

West Dementia Partnership, has recently developed what works resource cards to help

when engaging and consulting with people with dementia.

These resource cards have been written by people living with dementia, carers, volunteers,

sta and Local Involvement Networks (LINks) HealthWatch. Their aim is to strengthen

and directly involve people with dementia as well as their amilies and carers.

The ocus o these cards is to provide tools and techniques or sta to acilitate and

support people to express their preerences, get involved in activities whilst recognising

their current abilities.

This work has taken into account the general engagement, involvement and dementia

specifc resources already available to inorm the project and understand the barriers to

involving people living with dementia.

The ollowing also oers ood or thought or organisations to consider dierent

approaches when involving people living with dementia; or example at a ocus group, at aconerence or organising an event.

There is a large amount o reading material available or those who would like to know

more. Card 4 provides some suggestions or urther reading.

The Cards

The Reerence group agreed to work towards the development o cards oering top tips

and general guidance when involving people with dementia under the ollowing topics:

Background

Generalprinciples

Communication

AboutConsultation

Developinggroups

Recruitmentandtraining

Serviceevaluationandimprovement


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2 - AIMS OF THE WORK

Using the work reerenced in Cantley C. et al, (2005) Listen to Us: Involving people

with dementia in planning and developing services Section 2 page 12 Dementia North,

Northumbria University Newcastle upon Tyne.

People with dementia should be enabled to:

playafullpartindecisionsabouteverydaymattersandmajordecisions

aecting their lives;

participateintheoperationandmanagementofservices,

e.g. by involvement in recruitment;

inuenceimprovementsinserviceoperation,e.g.bypromptingchanges

in the way in which reerrals are made to specialist services;

inuencefutureserviceprovision,e.g.bysuggestingalternativesto

traditional day care;

haveavoiceinthepolicy-makingprocess,e.g.bycampaigningfor

newlife-enhancingresources;and

haveavoiceinthewidercommunity,e.g.bychangingattitudesto

dementia through involvement in community groups.

Involvementoftenleadstoincreasedself-esteemandcondenceforpeoplewith

dementia.

It is not easy to achieve the above which is why the Involving People with DementiaReerence group has designed these cards. Some views rom the group are expressed

below

We very often go for the easy option ask people to come to a meeting.

We take a tokenistic approach to involvement so we can tick the box.

We consider the familys view of the world as the default position.


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The challenges

People/organisationsthinktheyareinvolvingpeoplelivingwithdementia.

Assumptionsaremadethatorganisationsknowwhatpeoplewant.

Peopleareaskedtotintothewayorganisationswork.Thiscanbetricky.

Identifyingpeoplelivingwithdementiatoengagewithcanbeverydifcult.

Peoplecansometimesfeelembarrassedtalkingaboutdementia

and their problems.

Familymembersandfriendsmayseetheworlddifferentlyfromthe

person with dementia.

Communicationiskey;thebestwaytoengageandcommunicateat

dierent stages will depend on where the person is on their journey.

Participationrequestsneedtotinwithpeoplesdomesticandtransportarrangements.

Locationandtransportarrangementsforeventsneedtobeconsidered.

Thereneedstoberecognitionthatnoteveryonewantstobeinvolved.

Theanswersreceivedwilldependuponthequestionsyouask.

Engagementandinvolvementmustbeworthwhileandmeaningfulnot

a tick box exercise.


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3 - ACKNOWLEDGEMENTS

We are very grateul to the people with dementia, their carers and amilies and the various

health and social care sta rom NHS Trusts, social services departments and voluntary

sector organisations across the South West Dementia Partnership. We are also grateul to

the many people rom other groups and organisations who shared their experiences with us.

We would like to acknowledge the South West Dementia Partnership or commissioning

the Involvement Project.

Involving People Living with Dementia Reerence Group

Norman McNamara Person living with dementia and

AlzheimersSocietyvolunteer

Elaine McNamara PartnerandcarerandAlzheimers

Society volunteer

Derek Dominey CarerandAlzheimersSocietyvolunteer

John Major CarerandAlzheimersSocietyvolunteer

Rachel Canning Person living with dementia and AlzheimersSocietyvolunteer

Joe Culkin Formercarer

Edna Colman Smith Wie and carer

Richard Colman Smith Person living with dementia

Lyn Hancock Wie and carer

Mike Hancock Person living with dementia

Lyn Jeernholz Partner and carerAlan Ruttley Person living with dementia

Douglas Price Person living with dementia

Christine Buck SouthGloucestershireAdultSocialCare

Tricia Brown AlzheimersSocietyvolunteer

Bev Chapman Cornwall Partnership NHS Trust

Annie Dimmick Local Involvement Network (LINks) Dorset

Derek Dodd AlzheimersSocietyDebbie Donnison AlzheimersSociety(ProjectSponsor)

Kathy Holmes 2getherNHSFoundationTrustGloucestershire


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Other Stakeholders

Chard Memory Cae Somerset

CarersGroup(2getherFoundationTrustGloucestershire)

CarersConservatoryClubandMemorySupportGroupLaverstockSalisbury

andElizabethBartlettandDrMarieMillsDownendDayServiceDownendSouthGloucestershire

ForgetMeNotCentreSwindonWiltshire

LearningandEducationteamAlzheimersSociety

MilestonesTrustBristol

MindtheGap,aSalisburyPlayhouseledprojectWiltshire

RemembereeGroupNorthSomerset

SouthGloucestershireLocalInvolvementNetworks(LINks)

SouthWestRegionalConferenceAlzheimersSocietyMembers(19thMay2011)South West Dementia Partnership Hospital Conerence Participants (5th July 2011)

TheLimesDaySupportServiceSouthGloucestershireandJoanneONeill

TorbayLeadershipGroupDevon

Lynda Hughes AvonandWiltshireMentalHealthPartnership

NHSTrust(AWP)

Julia Jones Community Care & Housing Dept

SouthGloucestershire

Rachael Litherland Innovations in Dementia (CIC)

Derek Lott Quality and Service Development Manager(Care Homes)

Hazel Moore AlzheimersSociety

Lucy Nicholls Somerset LINk

Louise Rendle Wiltshire & Swindon Users Network

Anne Rollings South West Dementia Partnership

andAlzheimersSociety

Diana Sims AWPSue Tasker-Simmons Community Care & Housing Dept


Cheryl Thomas ThePrincessRoyalTrustforCarersB&NES

Beth Tovey Community Care & Housing Dept


Lynne Waldron AlzheimersSocietyvolunteer

Toby Williamson MentalHealthFoundationTrust

Gill Young AlzheimersSocietyvolunteer

Jane Viner RoyalDevonandExeterNHSFoundationTrust


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4 - FURTHER READING AND RESOURCES

Useul sources o urther inormation. This is not an exhaustive list but oers the

reader a snapshot o general engagement and dementia specifc resources.

Dementia Care mapping Dementia Care Mapping (DCM) is a method designed to evaluate

quality o care rom the perspective o the person with dementia. It is used in ormal care

settings such as hospitals, care homes and day care. It is based on the philosophy o person

centred care, which promotes a holistic approach to care that upholds the personhood o the

person with dementia

http://www.brad.ac.uk/health/dementia/DementiaCareMapping/

Developing orums or people with dementia Published:February2007Authors: Kate Jones,

Lesley Prendergast Organisation: Dementia Services Development Centre Wales, University o

WalesBangorSummary:ThisreportprovidesanevaluationoftheAlzheimersSocietyproject

developing orums or people with dementia by the Dementia Services Development Centre or

Wales.http://www.bangor.ac.uk/imscar/dsdc/documents/Forum1_000.pdf

Innovations in Dementia Community Interest Company (based in South West) works with

other organisations to make sure that people with dementia can continue to take part in their

communities and have active lives.http://www.innovationsindementia.org.uk

Listen to Us: Involving people with dementia in planning and developing services

Published: 2005 Authors: Caroline Cantley, Janet Woodhouse and Monica Smith

Organisations: Dementia North, Northumbria University Summary: The guide was produced by

Dementia North as part o a Department o Health unded development project to explore how

peoplewithdementiacanbeinvolvedinserviceplanninganddevelopment.http://www.scie.org.

uk/publications/guides/guide17/references.asp

My name is not dementia People with Dementia discuss quality o lie Published:April2010 Authors:AlzheimersSociety.Summary:FollowingonfromtheDementia: out o the

shadows report, in which people with dementia spoke out about stigma and the impact thatthediagnosishadontheirlives,AlzheimersSocietycommissionedresearchintoqualityoflifein

dementia. My name is not dementia report presents the fndings o the frst stage o this project.

Scottish Dementia Working Group(SDWG)isanindependentgrouprunbypeoplewith

dementia.TheWorkingGroupcampaignstoimproveservicesforpeoplewithdementiaandto

improve attitudes towards people with dementia.

http://www.sdwg.org.uk

Strengthening the involvement o people with dementia toolkit Published: 2008 Author:

Care Services Improvement Partnership Summary: This toolkit augments the section Involving

serviceusersandtheircarersinEverybodysBusinessaservicedevelopmentguide(DH2005)


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Supplementary resource document Published: 2008 Author: Care Services Improvement

Partnership Summary: This document has been compiled in the process o writing the

Strengthening the involvement o people with dementia toolkit. It includes a wealth o positive

practice examples

http://www.dhcarenetworks.org.uk/_library/Resources/Dementia/CSIPComment/strengthening-

the-involvement-of-people-with-dementia.pdf

Supporting DerekThisvaluableresourcepackpublishedbytheJosephRowntreeFoundationinpartnershipwiththeUniversityofEdinburgh,isaimedatstaffsupportingpeoplewithlearning

difculties who develop dementia.

http://www.jrf.org.uk/publications/supporting-derek

Talking Mats is a communication tool designed to help people who suer rom communication

disabilities or difculties.

http://www.talkingmats.com

Dementia specifc resources:

Alzheimers Society or inormation and resources on dementia

http://www.alzheimers.org.uk/factsheet

Dementia UK Contact details or inormation and support or amily carers, people with

dementiaandprofessionals.ProvidedbyexperienceAdmiralNursesandavailablebytelephone

and email

http://www.dementiauk.org

Pictures to share-booksandresourcesforpeoplelivingwithdementia

http://picturestoshare.co.ukSocial Care Institute or Excellence:SCIEDementiaGatewaywhichoffersfreeaccesstoa

widerangeofresources,focusingonkeytopicsindementiacare,e-learningmaterials,andlms

http://www.scie.org.uk/dementia

South West Dementia Partnership: This website is aimed at people working to implement

theNationalDementiaStrategyintheSouthWestofEngland.Itprovidesinformationon

the work o the South West Dementia Partnership, which brings together organisations rom

health and social care, the voluntary sector and people using dementia services to drive orward

improvements.

Http://www.southwestdementiapartnership.org.uk

The Dementia Services Development Centre The centre actively works to improve services or

peoplewithdementiaandoffersnews,resources,videosande-journals

http://www.dementia.stir.ac.uk/library_dementia

The Mental Health Foundation produces a range o publications, including reports, briefngs

andinformationbooklets.Mostofthesecanbedownloadedfreeofchargefromthissite.http://

www.mentalhealth.org.uk

National End o Lie Care Programme NHS(2009)providesexplanationandresourcesaboutadvanced care planning and the dierent options open to people including dementia.

http://www.endoifecareforadults.nhs.uk


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SECTION 02 - General Principles

5 - GENERAL ENGAGEMENT ANDINVOLVEMENT PRINCIPLES

Sendletterofintroductiontoexplaintheprocess,consent

and participation inormation.

Offerchoicesofengagementopportunitiesnotjustmeetings.

Forexample:one-to-oneconversations,telephonecalls,emailorwrittenresponse.

Peoplewithdementiacanactasrolemodels.Itcanbemotivatingtoseeother

people with dementia using their skills and abilities.

Taketimetoenablepeopletoexpresstheirviewsanddescribetheirdailylives.

Beawarethiscanbeanemotionalrollercoasterbutmanywishtosharetheir

stories i this means improving someone elses experience.

Askoneortwoquestionsonaparticulartopicdonotsendlengthydocuments.

EstablishgroundrulesformeetingsseeCard11.

Plansessions/eventsestablishdatesandtimeswellinadvance.Sendtimely

and regular reminders.

Explainreimbursementprocessforexpensesandmakethisprocesssimple.

Bewelcomingandcreateafriendlyatmosphere.Offerrefreshments.

Meet and greet.

Providenamebadgestohelppeoplecommunicate.

Allteammembersneedtobeexibletomanagethegroup,

e.g. not one person always making the teas.

Planthelayoutoftheroommultipletablesforvetosixpeople.

Encouragevolunteersandstafftoengagewithparticipantssomepeopleattending may be quite isolated at home and may fnd it difcult to mix with others.

Supportspeakerstoadapttotheaudiencewithdifferentneedsandabilities.

Thinkaboutpresentationtools,timingsandhaveaexibleapproach.

Allowforfeedbacktoparticipantsattheendofthesession.

Offerinformationabouttheeventtotakeawayasareminder.

Saythankyouandexplainwhatyouintendtodowithinformationreceived.

Explainwhattheorganisationand/orservicehasalreadychangedasaconsequence o eedback.

Beawarethatsomepeoplewillwanttotaketheopportunitytoreceive

inormation and advice.


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Specifc to carers and amily members

Consideraskingalocalcarersgroupwhichmeetsregularlytodiscussthetopic

Beclearaboutthetask,i.e.theamountoftimeinvolved,whatisexpected,

what dierence it will make.

Considerlengthandtimingofmeetingstotinwiththecaringrole.Areyouable

to cover the costs o respite, i required?

Considerfacilitatingtwogroupsatthesamevenue:oneforthepeoplewith

dementia and one or the carers.


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6 - INVOLVEMENT OPPORTUNITIES

There are many ways we can involve people living with dementia. We can include the

individual, carers, amilies and riends.

Dopeopleneedhelptobeinvolved?Thiswillneedtobeinplaceandthe

person will need to be supported on the day.

Agreeatimetableofinvolvementwithareviewdate.

Howareyougoingtoinvolvepeoplewhoarehousebound,wholivealoneand are not using services at present?

Provideclarityaboutthepurposeofinvolvement.

Discusswithpeoplewhatintereststhem.Matchinterestswithopportunities.

Givepeopleachoice.Beawarethatchoicespresentchallenges.Sometimesask

questions that only require a simple yes or no answer.

Dontdelayinyourresponseandaction.Reportonprogressatalltimes

once the person has agreed to be involved.

Howwillyouensurethatdiscussionsduringtheeventormeetingareunderstandable and accessible, e.g. terminology, pace and breaks?

Getpeoplesconsenttousetheinformationandquotestheyhavegiven

to be used in dierent orums.

Beclearabouthowpeoplewanttobeknownsomepeoplearehappyto

be quoted by name, age and condition, others preer to be anonymous.

Findouthowpeopleliketocommunicate.

Findouthowpeopleliketoreceiveinformation. Findoutwhatresourcesthepersonhasintermsofskills,experience

and knowledge.

Beclearaboutwhyyouwishtoinvolvetheperson.

This should not be a tick box exercise.

Considerapproachesndasolution.Signposttotheappropriate

organisation/departmentorindividual.


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Think o dierent ways o involving people, such as:

Volunteering

Mediaandcampaigning

Joininganexistinggroup

LINks(Healthwatch)

Research

Committee/projectgroup/focus/steering

Mysteryshopper

Educationandtraining

Interviewing

Conferencespeaking

Servicefeedback

Fundraising

Peerreviews.


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7 - INCLUSION -WHO DO YOU NEED TO INCLUDE?

WHO IS SELDOM HEARD?

Seldom heard is a loose term used to represent individuals, groups and communities

who, or varying reasons, have experienced exclusion or marginalisation rom mainstream

society (including access to health and social care). Some groups o people who have been

particularly marginalised or excluded need extra support to ensure eective engagement.

The Social Care Institute or Excellence (SCIE) has produced a useul guide andpositionpaperonthistopic(Robsonetal,2009SCIE2007www.scie.org.uk)

Seldom heard groups living with dementia include:

BlackMinorityandEthnic(BME)

Lesbianandgaypeople

Peoplewithmoreadvanceddementiawhomaybelivinginresidentialcareand

nursing homes

Peoplewithlearningdisabilitiesanddementia

Prisoners

Gypsiesandtravellers

Peoplewithrarerformsofdementia,e.g.Korsakoffs,HIV-associateddementia

Peoplewithearlyonsetdementia(undertheageof65)

Peoplewithnofamiliesorfriends.

Unlike mental health services or people with unctional mental health problems, up until

recently, involving people with dementia to inorm types o care, treatment, and services

had been relatively underdeveloped.


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This can be explained or a number o reasons including:

1. Dementia being seen as an illness o old age with little attention paid to it at policy

level, and a lack o investment, thereore, in developing user involvement.

2. The organic, progressive nature o dementia, combined with late or no diagnosis,

meaning that it was usually quite difcult or too late to get peoples views.

3. Arelativelystrongwell-developedcarersmovementwho,partlybecauseofthenature o dementia, oten spoke on behal o people with dementia, as well as in

respect o their own views.

(Williamsonetal(2009)Olderpeoplesmentalhealthtoday:ahandbook.Chapter13

page157MentalHealthFoundationOLM-PavilionBrighton)

Thereore:

Youdontneedtoknoweverythinguseexternalexpertiseandworkcollaboratively with other organisations.

Beawarethatyouneedtounderstandtherangeofcommunitiesandspecic

approaches needed.

Communityengagementiskey.

Ittakestimetoundertakeanyengagement


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7A - LEARNING DISABILITYCOMMUNICATION CARD

The ollowing is an example o what works when engaging with a person with learning

disabilities and dementia:

Ifatallpossible,ensureyouobtainasmuchinformationaboutthe

persons routine and lie story prior to meeting the person.

Ensurethattheroutineismaintainedeveniftakesalongtime,

this will help prevent distress at later stages.

Sitnexttothepersonordirectlyinfrontofthem.Maintaineyecontact

and ensure that you have their ull attention.

Explaininshortandsimplesentenceswhatisgoingtohappen

(i.e. a visit is to take place, a talk).

Thevisitorshouldbetakenintoseethepersonbyafamiliarmember

o sta (reassurance).

Thevisitorcanofferahandtoshakeandmustinformthepersonwho

they are and ask them where they would like them to sit. Staffwillmakeacupofteaifrequested.

Theimmediateenvironmentshouldbequietandfreefromdistractions

(e.g.TV/radio/otherconversations).

Staffwillhelppeoplecommunicateandcheckthattheyareinterpretingcorrectly.

Afamiliarmemberofstaffwillexplainifthepersonappearsnotto

understand or digresses.

Onlyonepersonatatimewillprompt. Useshort,simplesentencesthatareeasytounderstand.

Donotoverloadwithtoomuchinformation/questions/choices.

Allowtimetorespondandtoprocesstheinformation.

Milestones Trust

www.milestonestrust.org.uk has provided the above inormation.

Milestones Trust is a health and social care charity providing residential, nursing and

community care services or people with learning disabilities, mental health needs and

dementia.


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SECTION 03 - Communications

8 - WRITING STYLE, LAYOUT AND DESIGNWriting style

Planwhattosaybeforeyoustartwriting.

Presentinformationlogically,onepieceofinformationatatime.

Keeplanguagesimplewithoutbeingpatronising.

Youarewritingforanadultaudience.

Writeconcisely.Removeunnecessarywords.

Keeptoonesubjectineachsentence.

Considerproducingadraftintherstinstanceandgetfeedback.

Itishelpfultorepeatsomewordsforemphasis.Forexample,Thereare

already drugsavailabletotreatsomeofthesymptomsofAlzheimers

disease. These drugs can alleviate symptoms or a limited period.

Beconsistentinthewordsyouuse.

Avoidjargonandacronyms.Explainalltermsandconceptsclearly.

Consider including a glossary.

Paragraphsshouldmakesenseontheirown.Peopleshouldnothavetoremember

the content o the frst paragraph in order to understand the second one.

Writeinaninclusivewritingstyle,usingwordssuchasyouandwe.

Donotusethepassive,e.g.Wehavemadechanges,NOTChanges

have been made.

Quotationsandexampleshelptoputtheinformationincontext.


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SECTION 03 - Communications

9 - HOW TO COMMUNICATE WITH SOMEONEWITH DEMENTIA

General advice

Listencarefullytowhatthepersonhastosay.

Makesureyouhavetheirfullattentionbeforeyouspeak.

Payattentiontobodylanguage.

Speakclearly.

Thinkabouthowthingsappeartothepersonwithdementia.

Considerwhetheranyotherfactorsareaffectingcommunication.

Usephysicalcontact,whereappropriate,toreassuretheperson.

However, do not assume that physical contact is required.

Showrespectandpatience,rememberitmaytakelongerfortheperson

to process the inormation and respond.

Listening skills

Trytolistencarefullytowhatthepersonissaying,andgiveplentyof

encouragement.

Ifthepersonhasdifcultyndingtherightwordornishingasentence,ask

them to explain in a dierent way. Listen or clues.

Ifyoundthespeechhardtounderstand,usewhatyouknowaboutthepersonto

interpretwhattheymightbetryingtosay.Butalwayscheckbacktoseeifyouare

right its inuriating to have your sentence fnished incorrectly by someone else! Ifthepersonisfeelingsad,letthemexpresstheirfeelingswithouttryingtojolly

them along. Sometimes the best thing to do is to just listen, acknowledge and

show that you care.

Attracting the persons attention

Trytocatchandholdtheattentionofthepersonbeforeyoustarttocommunicate.

Makesuretheycanseeyouclearly.

Makeeyecontact.Thiswillhelpthemfocusonyou.

Trytominimisecompetingnoises,suchastheradio,TV,or

other peoples conversation.


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Using body language

Bodylanguageisimportant.Agitatedmovementsoratensefacialexpressionmay

cause upset or distress, and can make communication more difcult.

Becalmandstillwhileyoucommunicate.Thisshowsthepersonthatyouaregiving

them your ull attention, and that you have time or them.

Neverstandoversomeonetocommunicateitcanfeelintimidating.Instead,drop

below their eye level. This will help the person to eel more in control o the situation.

Standingtooclosetothepersoncanalsofeelintimidating,soalwaysrespect

personal space.

Ifwordsfailtheperson,pickupcuesfromtheirbodylanguage.Theexpressionon

their ace, and the way they hold themselves and move about, can give you clear

signals about how they are eeling.

Other causes o communication difculty

Itisimportanttobearinmindthatcommunicationcanbeaffectedbyotherfactors

in addition to dementia or example:

Pain,discomfort,illnessortheside-effectsofmedication.Ifyoususpectthismight

behappening,suggestthatthepersoncontactstheirGP.

Problemswithsight,hearingorill-ttingdentures.Makesurethepersonsglasses

are the correct prescription; that their hearing aids are working properly, and that

dentures ft well and are comortable.

ThisisinformationistakenfromAlzheimersSocietyFactsheet500,Communicating

Forinformationaboutawiderangeofdementia-relatedtopics,

visitalzheimers.org.uk/factsheets


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SECTION 04 - About Consultation

10 - HOW TO GET PEOPLE AFFECTED BYDEMENTIA TO AN EVENT

Advertisewellinadvance(atleastsixtoeightweeks)withonetelephone

number to book places. Consider a simple poster and include a photograph o

person taking the calls.

Makeadvertisingliteratureasaccessible,relevantandconsistentaspossible

(see Card 8).

Involvepeoplewithdementiaandcarersinplanningeventstoensurethatthey

are relevant and attractive to the intended audience.

Thevenueneedstobeclosetobusroutes,haveeasyaccess,goodfacilities

(toilets, kitchen) and preerably in a local community venue such as a village hall,

socialclubnotahospitalenvironment.

Gotopeoplesenvironmentsorfamiliarsettings.Getpermissiontogofromthe

organisers and those who attend, e.g. day centres and support groups. Dont sit

and wait or people to come to you.

Takeaccountofindividualspreferenceswhenarrangingtimesandvenues.

Makeitfunofferlunchorcombinewithanotheractivity,e.g.avisittoalocal

attraction.Grabpeoplesinterest.Forexample,organiseaconferenceina

specialvenuewithacreamtea.

Considertiming,location,lengthofevent,refreshments.

Considerhowpeoplewillbesupportedtogettoandattendtheevent,

i.e. transport and expenses.

Ifyouhave30peopleattending,consideratleast10peoplefacilitatingand

supporting at the event.

Askapersonwithdementiatospeakabouttheirexperience.

Offerindependentadvocatesifpossible/appropriate.

Sendinformationpriortothedaysopeoplecanbringtheirnoteswiththem.

Haveaclearcommunicationplan:

1. Briefpeoplefromhealthandsocialcareteamsandthevoluntarysectoraboutthe

event.Identifyinvolvementchampionsinteams/agencies.Theywillbeyourbest

allies i they recognise the value o supporting people to attend.

2. Enlistthehelpofpeopleinotherorganisationstoadvertisenewspapers,shops,

pharmacies, newsletters, county and local councils.


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11 - GROUND RULES

To enable all participants to gain maximum benefts rom any engagement,

learning event or meeting, the ollowing guidelines may be useul:

Listen and respect We all have a dierent knowledge base and lie experiences as

astartingpoint.Beawarethatsomeoftheareascoveredmaybesensitiveforsome

participants. Listening skills These have to take priority in any exercise which includes patience

and understanding. Maintain eye contact and listen to every answer no matter how

offthewallitmayseematrst.Thiscanturnouttobeveryrelevant.Givetime.

Support Create a supportive environment that will allow each participant to eel

comortable asking questions; provide opportunities or participants wishing to

discuss any issues in private.

EqualityEachparticipanthasanequalopportunitytobeinvolvedattheirownpace

and to eel their views and opinions are respected and valued.

Time outEachparticipantshouldfeelfreetotaketimeoutiftheyfeel

uncomortable at any time. Do this by being explaining this at the beginning

o the session.

ConfdentialityAllparticipantsmustrespectthecondentialityofanypersonal

inormation shared.

Be open mindedAlwaystreatpeoplewithdementiaequallyandonaparwith

carers.

Dierences Recognise that people see things dierently.

Topics o interest Plan the sessions or discussion and include breaks every 20

minutes or so.

Acknowledgement: This inormation was adapted rom a learning agreement

usedbyamemberofAlzheimersSocietyLearningandEducationTeam.


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12 - FEEDBACK

Top Tips

Taketimetoenablepeopletoexpresstheirviewsanddescribetheirdailylives.

Itcanbeanemotionalrollercoastertore-liveexperiencesbutmanywishto

share their stories i this means improving someone elses experience.

Explainthereimbursementprocessforexpenses.

Sendaletterofintroductiontoexplainprocess,consentandparticipation inormation.

Askoneortwoquestionsonaparticulartopicdonotsendlengthydocuments.

Peoplewanttoknowwhatyouplantodowiththeinformation.

Explainhowtheorganisationorservicehaschangedasaconsequence

o the eedback.

Providegeneralinformationonhowpeoplesviewshavebeenhelpful.

Anewsletterisusefultodisseminatethendingsandactionintended

Saythankyoufortheirinvolvement.

Makeacommitmenttogobackandexplaintheoutcomeoftheirexpressedviews.

Peoplewillwanttoholdyoutoaccount.


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SECTION 05 - Developing Groups

13 - GROUP DEVELOPMENT:SOME IDEAS ON LEADERSHIP

AND EMPOWERMENT

Whatisthepurposeofthegroup?Beclearaboutwhyyouaremeeting.

Whoisincluded(peoplewithdementiaand/ortheircarers)?

Consideroneyearmembershipwithpossiblerenewal.

Allowthegrouptoformandcontributetoitsaimandpurpose.

Set ground rules (see card 11).

Introductionsareimportantandyoushouldencourageinvolvementbyall.

Anicebreakerexercisemayberequiredtomakeeveryonefeelcomfortable.

Meetingsshouldbeledbyachairpersonand/orafacilitator.

Anagendaisveryusefulanditisimportanttokeeptotime.

Itemsfordiscussioncanvaryfromofferingviewsonproposalsforservicesfromthelocal Care Trust or considering evaluation orms or use in local Memory Cas.

Considerthedifferentformsofcommunicationrequired.

Providenotesasarecordofthemeeting.Theseshouldbereviewedateachmeeting.


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SECTION 06 - Recruitment and Training

14 - INVOLVING A PERSON LIVING WITHDEMENTIA IN INTERVIEW PROCESSES

People with dementia and their carers need to be supported at every step

during this process.

Preparation:

Discusswithpeoplehowtheywouldliketobeinvolved.

Supportpeopletowritethequestionstheywouldliketoask. Ensureallinformationissentbypostandinaformatthatisacceptable(Thisgives

the person time to read the inormation and ask questions prior to the day)

Day o interviews:

Havediscussionsinadvancetohelppeoplewithdementiaandcarersthinkabout

how they can evidence their viewpoints in relation to candidates rather than just

giving gut instinct.

Practicetheinterviewscenarioinadvancesotheyknowwhatitwillbelike

on the day.

Havesomeonetotakenotesontheirbehalfsotheycanberemindedofwhatwas

said when you are having post interview discussions.

Beclearoftheirrolearetheygivingapersonalexperienceperspectiveorare

they ull members o the interview panel? How much weight are you giving to their

viewpoint when making decisions?

Haveenoughbreaksinproceedingstodiscusscandidatesproperlybeforemoving

onto next, or else they will all start to merge into one.

Agreesomedistinguishingfeaturesasyoudiscussthecandidatessoyoucanuse

this short hand to remind people later on in the day about earlier candidates.

Dontinterviewtoomanypeople.Itwillbereallydifcultforpeopletokeepfocused

on later candidates i they are getting tired.

Notes:

It might be an idea or people with dementia and carers to have a separate person to

discuss their thoughts with, away rom the other interview panel members.

Acknowledgement:InnovationsinDementiaCommunityInterestCompanyandGPleadinterviews South West Dementia Partnership December 2010


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Real lie example

Apersonlivingwithtemporallobedementia,aged64anddiagnosed18monthsago,

reectedonhisexperience.Hehadnoexperienceofinterviewingbeforeandneverhadan

interview during his working lie.

His thoughts:

The manager asked me to consider being involved (in interviewing) and gave me two

weeks to consider the opportunity.

Really enjoyed the experience and really pleased to be involved.

Things to consider in the uture:

Consider the opportunity to have two processes or interviewing other people in uture.Have a ormal process like I was involved in and another one to meet everyone at the

service. This way you will get to know the person in both situations.

Manager o services thoughts:

I do eel that all o us benefted rom the experience or me it made me take some

time to think about how the person might eel, and how I could best support him

emotionally and practically. The person was defnitely contributing to the scoring oeach question and on several occasions did not agree with the panel so he wasnt

being led in his decision making.

I admit I was nervous about how it would all work out but actually I neednt have

worried and indeed, it has spurred me on to do more, this is the way I will work

in the uture.


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SECTION 06 - Recruitment and Training

15 - GUIDING A PERSON WITH DEMENTIATHROUGH A PRESENTATION AT A

CONFERENCE, LECTURE OR EVENT

You may act as the acilitator or interviewer to support the person

Beclearwhyyouareaskingthepersontoparticipateandhowyouwillsupportthem

throughout the process. Check that they are willing to participate.

Understandyourrole(forexampleastheinterviewer)inthewholeprocess.

Explaintheevent,theprocessandhowthepresentationwillbeundertaken.Remind

the person about the event in the lead up.

Doesthepersonaccepttheirdiagnosisandcondition?

Givetheinterviewerandpersonwithdementiaanopportunitytoprepare:outline

thetopicanddiscusstheoptionsthatmightbeconsidered.Agreesomekey

questions.

Agreewhetherthepersonwillbewillingtotakequestionsfromtheoor?However,

be prepared or them to change their mind on the day and be prepared to give them

supportwithunexpected/difcultquestions.

Agreeontheformatoftheinterviewbeforehandandusesuitablereminders/

prompts beore and on the day.

Considerthecomfortoftheperson:isitlightenough,toobright?Theperson

interviewing may be sat in ront o a window or masked by shadows.

Istherenoisewhichcouldbeeliminated?

Considerthetimelimitandconcentrationlevels(maximumof20minutesmaybe

sufcient).

Ifpossibletheinterviewershouldmeetregularlywiththepersontogainrelevant

history and to build rapport and trust.

Bepreparedforthepersonwithdementiatogooffcourseduringtheinterviewand

have a strategy or managing this.


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Bepreparedtosupportthepersoniftheybecomeagitatedornervous.

Takecarenottoinuencethepersontomakestatementswhichmeetthedesired

outcome o the event.

Ensurethepersonissupportedaftertheevent.

Considerprovidingfeedbacktothepersonfortheircontribution.

Remindthepersonthattheyhavetherighttochangetheirmindabout

participating.

Letthepersonknowthattheaudiencemaybemovedbytheircontribution.


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SECTION 07 - Service Evaluation and

Improvement

16 - DIFFERENT TOOLS AND TECHNIQUES

General:

Usethecardsinthispackasreference.

Taketimetoprepareandplantheapproach.Recognisethatevaluationcantake

some months i you are going to be inclusive and involve sta, individuals, carers

and volunteers.

Applygoodethicalprinciplesinyourwork,includinggettingfull,informedconsent.

Provideaninvitationletter,participationinformationsheetandcontacttelephone

details when undertaking the evaluation.

Betransparenthowdoyouintendtousethefeedbackcollected?

Howareyougoingtoinformparticipantsoftheoutcome?

Youshouldalsothinkaboutyourownsupportneeds,especiallyifthisapproachisnt a situation you have previously been in.

Resourcessuchaspictures,wordcardsandpoetryprovidehelpfulstimulation

conversations and interactions or some people.

Considerdifferenttoolsfordifferentaudiences.

Becreativeinthedesignoftheevaluationapproach.

Involvingandengagingpeoplewithvisualandhearingimpairmentrequiresa

specifc approach. Offerpeopletheopportunitytobeinvolvedeveniftheycannotattendtheevent.

(Forexamplearrangeatelephoneappointmentoraskthemtofeedbackintheway

they would like to).

Respectthatpeoplemaynotwanttoprovideyouwithfeedback.

Consideranactionplanasaconsequenceofthefeedback.


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Examples o open questions

Whatisworkingwell?

Whatisnotworkingwell?

Whatchangeswouldyouliketosee?

Isthereanythingelseyouwouldliketotellus?

Ifwehadtheopportunitytoasktheservice/teamtostopdoingsomething/do

somethingdifferent/dosomethingmore,whatwoulditbe?

Howdoesyourdaymakeyoufeel?

Whatactivitiesdoyouenjoythemost?

Whatdifferencehasitmadetoyoucanyousharesomeexamples?

Keepitsimpleonequestionmayleadtoadiscussionaboutthetopic.

Dierent tools and techniques could include:

One-to-oneconversations

Telephoneinterviews

Talkingmats(somepeoplewithdementiamayhavedifcultieswithconversational

interviewsorquestionnaires.Youcanshowpicturecardswithimagesthatrepresent

dierent aspects o quality o lie and asked to place it on a mat according to

whetheritisveryimportantquiteimportantornotimportant.http://www.talkingmats.com)

DementiaCareMapping(DCM)amethoddesignedtoevaluatequalityofcare

rom the perspective o the person with dementia. It is used in ormal care settings

such as hospitals, care homes and day care. It is based on the philosophy o

person centred care, which promotes a holistic approach to care that upholds the

personhoodofthepersonwithdementiahttp://www.brad.ac.uk/health/dementia/

DementiaCareMapping/

Recordingandtranscribing

Usingcasestudies

Questionnaires

Focusgroups

Emailresponses

Picturesandpoetry

Experiencedbaseddesign(EBD)awayofbringingpatientsandstafftogethertosharetheroleofimprovingcareandre-designingservices.

http://www.institute.nhs.uk/quality_and_value/introduction/experience_based_design.html


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SECTION 07 - Service Evaluation and

Improvement

17 - SOCIAL INTERACTION -

ACTIVITIES AND MEANINGFUL OCCUPATION

Tips rom people with dementia:

AttempttomoveintomyrealitybewhereIam.

Whoelseknowsmewell?Involvethem.

Acknowledgeanddealwithmyfeelingseveniftheydonotfeelrealtoyou.

Takethetimetondoutaboutmyinterests,whatIhavedoneinmylifeand

how I like to be involved.

Findoutthebestwaytocommunicatewithme.

Whenisthebesttimetotalktome?Thishastotakeintoconsiderationmydaily

routine and good times o day or me.

Mypreferredplace.Whereisitbest?Forexample,IchatbestwhenIammakingacupofteaorperhapsIneedtobeinaquietenvironment.Findout!

DontassumeIlikeknitting,bingoorcolouringinabook!

Ineedtobeawareofrealitybutdontkeepremindingme.Linkmewith

news or people o the day.

Iliketodosomethingthatsworthwhileandhasmeaning.

Ineedarole.

Ineedtofeelusefulandable.

Iamableto:clearupthedishes,clearoutadraw,makethebeds,goforawalk

and talk, but may need you to prompt and guide.

Many people living with dementia want to continue enjoying the things they have always

doneandcanstilldo.Ortheymaywanttotrynewthingsanddevelopnewskills.People

do not want to be excluded because they have dementia. It is important that people are

still presented with choices but presented with them one at a time.

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