KNOWLEDGE IS POWER - DEEP

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KNOWLEDGEIS POWERScotlandHandy hints that might helpmake life a little easier aftera diagnosis of dementia“Dementia is life changing, but it’s not life ending.Take advantage of every opportunity offered to you.You must learn to ask for help, because nobody shouldbe going through this on their own”.This booklet was written by people living with dementia,for people living with dementia. It is based on theoriginal booklet created by our friends in Wales – withDEEP appreciation and recognition of their wisdom. Itincludes information and advice that we hope you mayalso find useful in Scotland.This booklet has been funded byLife Changes Trust

Some advice fromus to you Do things that make you feel empowered focus on what you can do.It’s okay to feel down.It helps to talk tosomeone else goingthrough the same thing.Use strategies to help youadjust. Things like usingnew technology can helpwith reminders. I useAlexa; she reminds meabout everything.See if you can get involved in helping others whohave a diagnosis or who want to learn more aboutdementia, by going to talk to people about yourexperiences of living with dementia.

Keep smiling, live for theday, and don’t give up!If you feel tiredor have a ‘downday’, take careof yourself andhave a rest.Join a group or classthat suits you. Thereare lots out there.Connect with otherpeople who areliving with dementia:Peer support isinvaluable.This booklet hasbeen funded byLife Changes Trust

Groups in the DEEP Network in Scotland-STAND, Scottish Dementia Alumni, TheBeacon Club and Dementia Voices EastDunbartonshire, have all joined togetherto produce this practical resource for you.

ContentsBenefits and allowances Page 1Travel and Mobility Car Page 3Public Transport Page 4Access assistance Page 6Schemes and Campaigns Page 9Technology Page 11Legal considerations Page 13Support you may come across Page 15Useful phone numbers Page 17Useful websites, peer support,and involvement opportunities Page 18Recommended reading Page 20Notes Page 23

Benefits and allowancesPIP (Personal Independence Payment) forunder 65sThis is a government provided allowance for disability(not means tested). It has 2 components, and both have 2rates (basic and enhanced):1) help for day to day living needs, and2) for mobility support/needs. It can be a gateway to accessing other types of support. Citizens Advice Bureau can help you complete the form. Apply to the Department for Work and Pensions to see ifyou qualify.https://www.gov.uk/pip0800 917 2222NB In 2022 this is being changed to Adult DisabilityPayment.Attendance Allowance for over 65sYou might qualify for an Attendance Allowance (fromthe Government). This helps with extra costs if you needsomeone to help look after you (check if you’re eligible).This is awarded to the person who has received adiagnosis of 00 731 0122NB In 2022 this is being changed to Pension AgeDisability Payment.1

Care needs assessmentIf you think you, or someone you know, needs help to copeday-to-day, the first step is to get a needs assessment.Apply to the social services department of your local council(for free), and they can recommend services to help you withthings like equipment, home adaptations, practical helpfrom a paid carer, access to day centres and clubs.Carers Allowance: payable to carer if the carer isworking; conditions apply.Council Tax Rebate: 25% off UK wide; conditions apply.Check with your local Council. This can be claimed underthe (unfortunate) heading of Severe Mental Impairment.Further useful information can be found enefitsEmployment Support Allowance: UK wide long termsickness payment. Either contribution based or incomebased. Contactwww.cas.org.uk or0800 0232581for assistance with this.Self-Directed Support (SDS) is about giving you morechoice and control over the care and support you receiveto enable you to live as independently as possible.Anyone who is assessed as eligible to receive socialcare support can request that their support is providedthrough one of the four SDS options.The national organisation for SDS is SDSS link below:https://www.sdsscotland.org.uk/2

Travel and Mobility CarA blue badge for car parkingA blue badge is for people with a disability (includingdementia), to place on the car dashboard to give parkingconcessions. This is available for a payment of 20. The blue badge is for the person, not the vehicle. There are other schemes available (e.g. exemption frommost road tolls in UK). Apply through your local council or here:https://www.gov.uk/apply-blue-badgeMobility Vehicle through PersonalIndependence Payment (PIP)A car can be supplied on lease if you use mobility PIP (onenhanced rate, if you choose to use it this way). No tax topay, insurance, service and tyres are also covered withinthe scheme. This only applies for three years. If the person who hasthe diagnosis is no longer using the car it would have tobe given back.It is worth reading Driving and Dementia when consideringthe pros and cons of ations/ 3

Public TransportThe Thistle Assistance CardThe Thistle Assistance Card is designed to fit in yourpurse or wallet along with your credit and loyalty cards.As it’s purely an information card, Thistle Assistance isfree to everyone and comes with stickers to allow you topersonalise how you use it. Symbol stickers indicate yourtype of disability or impairment, while short messagestickers provide read-at-a-glance information for transportstaff about the help you require.An information leaflet outlines how to get the most fromyour card. And if your circumstances or requirementschange, simply request or acquire a new card to reflectyour current or changing needs.www.thistleassistance.com/get-the-card/Bus TravelLocal bus companies may offer ‘journey assistancecards’ you can show to a staff member; such as “countmy change for me”. Please check with your local buscompanies e.g., Stagecoach.Bus passesDisability bus pass & disability bus pass plus (this meansyou can travel with a companion for free). Apply for yourbus pass through your local authority.4

Trains Network Rail can offer assistance at stations if you bookit in advance (advisable). Some Stations have a ‘Calm Corner’ waiting room to getaway from the crowds and noise in the station (checkparticular stations, ask when booking your ticket).Disability rail cardThis allows you, and 1 person accompanying you, 1/3 offrail travel throughout the UK. Sign up for their newsletterand receive offers and discounts to other places. This is achargeable card, but you can use vouchers such as Tescoto pay.https://www.disabledpersons-railcard.co.uk0345 605 0525You may be able to get free train travel in Scotland if youhave a visual impairment due to dementia.Always check ahead of travelling about assistanceavailable at airports, train stations, on buses, and so on.5

Access assistance‘Just Can’t Wait’ toilet cardThis is a card to use in a shop or café when you just can’twait to use the toilet. The cards are available from the Bladder and BowelCommunityhttps://www.bladderandbowel.org/help information/just-cant-wait-card/0800 031 5406Key to access disabled toiletsThe RADAR Key Scheme: Available from public libraries,Disability Scotland, or Disability UK and online at Amazon. You have to pay a small amount for the key (about 4.00), but then it is yours to keep.Changing Placeswww.changing-places.orghave a register of accessible toilets with changing facilitiesThey also campaign contactPamisChangingPlaces@dundee.ac.uk to find out more.6

Wheelchair access You may be eligible for a wheelchair/walker from yourlocal council. Apply to the social services department. Red Cross also have a wheelchair hire schemewww.redcross.uk0300 456 1914CEA (Cinema exhibitors association) cardA card which enables carers to accompany the cardholderfor free entry into certain cinemas. This has a nominalcharge for the administration.https://www.ceacard.co.uk01244 526 016Relaxed cinema screenings and theatreperformancesSome cinemas and theatres offer relaxed screenings andperformances (lights left on, breaks, quieter music, andno adverts before the film). Enquire and encourage atyour local cinema or theatre.The Sunflower Lanyard, wrist band or badgeThis is a lanyard that is increasingly being used to letpeople know you may have a disability (a need) that can’tbe seen.It is recognised in most supermarkets, airports, buses andtrains.7

You can get assistance at airports, for you and your group. Pick one up in a participating shop, airport, station orvenue at the desk or till. The lanyards are free, and youdon’t need to provide proof of your disability.Lanyards are also available for a small charge fromwww.hiddendisabilitiesstore.com“The Sunflower lanyard really works and doesn’thighlight you as vulnerable, just highlights youmight need help! I use it all the time and it costsnothing but is worth everything.”Supermarket ‘quiet hours’Many supermarkets are starting to have a ‘quiet hour’when they turn the music off and staff are especiallyaware to help shoppers. Check with your local supermarket. If they don’t haveone, enquire if they might be willing to start one.8

Schemes and CampaignsCarers’ Emergency CardThis is a card the carer can carry in case anythinghappens to the carer, to inform that there is a personbeing cared for who may be alone at home (availablefrom local carers organisation or local council).Message in a bottle schemeThe Lions Charity run a free ‘message in a bottle’ (it isa small white plastic pot) scheme to store importantinformation. This includes contacts, diagnosis andmedication. It is often stored in the fridge as a recognisedplace to look! There is also a sticker which is put by thefront door usually to make people (Emergency services forexample) aware that you have one. Ask your GP practice orlocal pharmacy for a message in a bottle.The Herbert ProtocolThe Herbert Protocol is a national scheme that encouragesfamily and friends to put together useful information, whichcan then be used in the event of a vulnerable person goingmissing. Or you can download the form from this address:https://www.scotland.police.uk/spa-media/ dtrezvca/herbert-protocol-edinburgh-form.doc Contact your local police force online or by phone to obtainthe form, fill it in, and keep it safe at home. This can easilyand quickly be shared should someone go missing.Medical ID bracelet or necklaceYou can buy medical identification jewellery to help showwhat your needs are if anything happens to you.9

Make the most of the services and supports thatare available to you. Knowing what is out therereally can help you – knowledge is power!10

Technology Alzheimer Scotland have an online digital informationpoint that helps you find the technology you need. It’scalled Meet Adam.https://meetadam.co.uk Many people find gadgets like Amazon Alexa incrediblyuseful for reminders, news, and connecting with others. Ifyou own an iPad or another kind of tablet device, you mayfind that will meet your needs rather than an expensivegadget marketed at people living with dementia.Telecare devicesThis is a personal alarm, which you wear as a pendant orbracelet, that lets you call for help if you need it. Contact your local council’s adult social servicesdepartment and ask for a free care needs assessment forthe person who has the diagnosis. Depending on yourneeds, you may have a telecare service provided. Speak to your GP or anoccupational therapist.They may recommenda telecare system aspart of a continuinghealth or care package,but there’s often acharge for telecareservices.11

Mobile phone Apps with GPS tracking systemsIf you have a ‘smart phone’, you can get free phone Appswith GPS tracking systems, to keep safe. Purple Alert isa free app designed by people living with dementia andcarers, Alzheimer Scotland staff, Police Scotland, SocialWork, Dementia Friends Scotland, Health and Social CarePartnerships. and Telecare Services. A community mindedapp for people with dementia if they are missing.https://www.alzscot.org/purplealertTrack a Phone - you may find there are ways forsomebody else to track your phone. These apps will varydepending on the model of your phone.Keep going, keep up as much independence andactivity as you can.12

Legal considerationsLasting Power of Attorney (LPA)This is a legal document that lets you appoint one or morepeople to help you make decisions or to make decisions onyour behalf if you cannot make your own decisions. This gives you more control over what happens to you. There are two types - Property & Financial affairs, andHealth & Welfare. You may find help or guidance from the Office ofthe Public Guardian and: Age Scotland or AlzheimerScotland Information also available here:www.publicguardian-scotland.gov.uk13

Advanced care directives and Anticipatory CarePlanning (ACP)Advance care directives tell the doctors about specifickinds of treatment that you would or would not want nomatter how sick you are. An Advance Care Plan is how thedoctors should manage your care.This is a legal document where you specify what actionsshould be taken for your health if you are no longer ableto make decisions for yourself. You may find help or guidance from Age Scotland orAlzheimer Scotland and here:https://compassionindying.org.uk/making decisions-and-planning-your-care/scotland/ACP is a person-centred, proactive approach to helppeople to consider what is important to them and planfor their future. Everyone can benefit from having an ACP.The ‘thinking ahead’ philosophy about ‘What Matters toMe’ is appropriate at any age or stage of ry olkit/14

Support you may come acrossAsk at your GP practice as there may be other healthservices which may be able to be offered at home such aspodiatry, dentists, and opticians.Psychologist / Community Psychiatric Nurse(CPN)/Young Onset (under 65s) Dementia NurseOffer advice on assessments, carer stress, working arounddementia and coming to terms with it.Social workerThey can help you with needs assessments, helping youto find useful resources and services (e.g. respite).Dementia Link/Support workersAsk your GP if there are any dementia support workersin your area. Sometimes they are called different thingsdepending on who employs them.Occupational therapist (OT)They will help you live life to its fullest by adaptingthe environment and focusing on what you can do tomaximise your safety, quality of life and your engagementin activities.Speech and Language TherapistCan help with communication and difficulties withswallowing.15

AudiologistCan help with hearing difficulties and issues oftenexperienced like hyperacusis.PhysiotherapistCan work with you and your carers to promote physicalactivity and maintain your mobility and independence foras long as possible.Dementia AdvisorsDementia Advisors are in most areas of Scotland andare employed by Alzheimer’s Scotland. Please contactAlzheimer Scotland to find out what is available in yourarea and how they can help you to be involved in yourcommunity.16

Independent AdvocacyIndependent Advocacy will help you get the informationyou need to make good choices and give you the help youneed to express yourself clearly.Independent Advocacy can help you with:Adult Support and Protection Act.Adults With Incapacity Act.Mental Health Act.Power of Attorney.Welfare Benefits Assessments.In Scotland everyone who has dementia is entitled to thisfree service under People who are covered by the Mentalhealth (Care and Treatment) (Scotland) Act meaning theyhave a legal right to independent advocacy.www.mygov.scot/advocacy/ You can find your nearest advocacy worker herehttps://www.siaa.org.uk/find-advocate/ Useful phone numbers 24-hour Freephone Dementia Helpline Alzheimer Scotlandhelpline@alzscot.org0808 808 3000 Dementia UK – to speak to a dementia specialist nurse(Admiral Nurses)0800 888 667817

Useful websites, peer support, andinvolvement opportunities Life Changes Trust.www.lifechangestrust.org.uk Dementia Together – A space where people withdementia, families, and supporters can come togetherto explore ways of living well with dementia.https://dementiatogether.online/ UK DEEP Network (Dementia Engagement andEmpowerment Project).www.dementiavoices.org.uk Tips shared by people living with dementia for peopleliving with dementiawww.dementiatip-share.org.uk Alzheimer Scotland and Scottish Dementia Working Group.www.alzscot.org Age Scotland.https://www.ageuk.org.uk/scotland/ Carers Trust Scotland.www.carers.org Dementia Carers Count.www.dementiacarers.co.uk TIDE – together in dementia everyday – a UK widenetwork for d/ Join Dementia Research.www.joindementiaresearch.nihr.ac.uk ndcan (National Dementia Carers Action Network).www.alzscot.org18

Rare Dementia Support.www.raredementiasupport.org Young Dementia Network.www.youngdementiauk.org Lewy Body Society.www.lewybody.org Dementia Diaries.www.dementiadiaries.org Walking and outdoor.www.pathsforall.org.uk Sporting Memories Network.www.sportingmemoriesnetwork.com Playlist for Life.https://www.playlistforlife.org.uk/19

Recommended reading:All downloadable at ogramme Sensory booklet (Agnes Houston) Talking Sense (Agnes Houston) Self-Management (Alumni) Dementia & GP Services (Alumni) Driving and Dementia (James McKillop) Recipe for Life (STAND) Work after a diagnosis of dementia (Martin Robertson) Scottish Dementia Plans – Also available in easy readand audio versions ple-dementia-carers/pages/0/20

This booklet wasfunded by a grantfrom Life ChangesTrust, Scotland.The Scottish Knowledge is Power versionhas been adapted by the followingScottish DEEP groups:The Beacon Club, Dementia Voices EastDunbartonshire, Sottish DementiaAlumni and STAND in Fife.Based on the original Knowledge is Powerbooklet created in Wales by: Caban BangorUniversity Educators, DEEP United Dwyfor& Meirionnydd, and Fuse & Muse, Swansea.For more advice on how to develop theKnowledge is Power booklet or to accessother resources created in partnership withBangor University please visit this page: ttp://dsdc.bangor.ac.uk/productshcreated.php.en21

For more information about these groupsand so much more please visit: www.dementiavoices.org.uk/deep-groupsPlease note that the Scottish versionof Knowledge is Power has been puttogether during the time of COVID 192020/2021. The information contained inthis booklet therefore may differ in a postCOVID-19 Scotland.Please let us know what you think – sendyour email to Niblock@myid.org.ukA big DEEP thanks to Tony Husband (cartoonist),Gerry King (from STAND) and Andrew Purves(from the Beacon Club) for their wonderful artwork.22

Notes23

Notes24

Disability Scotland, or Disability UK and online at Amazon. You have to pay a small amount for the key (about 4.00), but then it is yours to keep. Changing Places www.changing-places.org have a register of accessible toilets with changing facilities They also campaign c

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