Alzheimer's Society Living with dementia magazine july 2010 · 2012-01-13 · July2010 Inside ......

JULY 2010 £2 (free to members)

Advice onmoving into care (7)To Spain and back (12)Explainingdementiatochildren(16)

LivingwithdementiaThemagazine of Alzheimer’s Society

Rememberthe person

With the newcoalitiongovernment'sbudgetannounced,there can now

be no doubt we are entering aperiod of austerity, and theimpact will start to affect us all.The cuts in public expenditureat a local level will be felt acutelyacross all public services, butparticularly within social carebudgets.

This is just at the time when thecountry is responding to theNational Dementia Strategy andthere is an improvedunderstanding of what peoplewith dementia and their carersneed to achieve the best qualityof life possible.

Clearly, these needs are not goingto diminish and numbers of peopleneeding support are growing.The Society, along with othercharities and service providers, willbe required to domuchmore withfewer resources, and will need toshow how things can be improved,demonstrating real value formoney.

As never before in our history, wewill need to work together withother organisations to findworkable solutions.We need toensure that people with dementiaand their carers do not keepmissing out and facingdiscrimination, and that theyreceive the vital help and supportthey need.

Ruth Sutherland,Acting Chief Executive

Caroline GratyCaroline workedat Alzheimer’sSociety until2006, when sheleft to complete

anMA course and embark on anew career as a freelance writer.As well as being a regularcontributor to themagazine, shewrites for a number of not-for-profit and public sectororganisations, with a particularfocus on health and the arts.Caroline lives andworks in London.

Directions

CarolineBradleyFreelance sciencewriter CarolineBradley has beenkeeping readersinformed about

dementia research for the last sixyears. Originally a radio journalist,Caroline has worked for severalnational charities and is currentlyworkingwith local communityorganisations to improve theircommunications. She is passionateabout removing barriers tounderstanding. She lives in Yorkshire.

ContributorsDr DavidLoweryDr Lowery is aresearcherinterested in olderadultmental

health. His interest in this area isboth professional – he is currentlymanager of the EVIDEM researchprogramme(seep15)–andpersonal,having helped a loved one livewithdementia. David is currentlyworkingon a research project to investigateif regular walking can alleviate someof the symptoms of dementia.

Living with dementia 3alzheimers.org.uk

4 News and notices

6 In the press

7 Your questions

8 Remember the personDementia AwarenessWeek

10 FundraisingTime to smile

11 CampaigningAll change

12 Caring storyTo Spain and back

15 Exercise anddementiaNew research

16 Explaining dementiato children

18 Local news

20 ResearchStemming the tide

22 Letters

24 Useful contacts

8

10 12

InsideJuly 2010

By the time you receive this magazine, Dementia AwarenessWeekwill be well underway, and will already have taken place in NorthernIreland. Let’s hope the Remember the person theme really doesencourage people to take a closer look at dementia, and take thetime tomake friends with people living with the condition.

As Leslie Nottingham says on page 9, she doesn’t want the worddementia to frighten people away. She wants people to know herfor who she really is – a sociable person who loves dancing and getsa kick out of bargain hunting in charity shops.What a great personto spend timewith! As indeed are both JohnWright and PhillipJoseph, who feature on pages 9 and 10.

Just a reminder, too, that there are still a few days left forentries for our Remember the person photography competition.The closing date is 10 July – see page 24 for details.

Rachael Doeg, Editor

Design: people-co.comCover photograph: Simon Rawles

4 Living with dementia

VolunteervacancyThe Society is seekingcandidates for itsinvestment committee,a sub committee of themain Board of Trustees. Weare looking for candidateswho have specialistknowledge of investmentmarkets and working withfund managers. Inparticular, we are lookingfor people who canchallenge our fundmanagers to ensure theyare complying with ourinvestment policy andstrategy.

The successful candidatewould also be expected tocontribute to the Society’sinvestment strategy. It isanticipated that they willhave worked at a seniorlevel in a financial orinvestment organisation.Applicants will be expectedto attend four meetings ayear. The closing date forapplications is Friday,23 July. For an informaldiscussion about the roleand details of theapplication process, pleasecontact Matthew Sellen on020 7423 3506 or [email protected]

They made it!

Ateam of victorious cyclistsfrom KPMG completed thefinal leg of a 1,500-mile

relay in aid of Alzheimer’s Societyon 9 June when they crossed thefinishing line in London’s CanaryWharf.

More than 250 employeesand their families, plus alumni,clients and Alzheimer’s Societystaff all rose to the challenge,joining the throng of determinedcyclists at various points acrossthe UK during the course.

The Big Blue Bike Ride, as thechallenge was named, wasformed of two routes which

both led to Canary Wharf,one starting in Aberdeen on28 May, and the other inPlymouth on 3 June.

As the team made it to thefinishing line, they weregreeted by ITN newsreaderNina Hossain and colleaguesfrom the professional servicesprovider, KPMG. Ninapresented each cyclist witha medal and congratulatedthe team for helping to raisearound £100,000 across theUK for Alzheimer’s Society,the company’s charity ofthe year.

News

ITN newsreader Nina Hossain greets elated cyclists at the finishing line


Familial Alzheimer’sdisease support groupmeeting

In briefBe part ofMemoryWalk 2010MemoryWalk 2010 is the Society’s biggest annualfundraiser and is only twomonths away!MemoryWalks are fun, family days out inmany beautiful andinteresting locations, and are a great opportunity toraisemoney and help fight dementia.

MemoryWalks are being held throughoutSeptember across England,Wales andNorthernIreland. All themoney you raisewill be used to supportservices for peoplewith dementia in your local area.

To find youmore about your local MemoryWalk,sign up online and get your sponsorship pack, pleasevisit memorywalk.org.uk or call 0870 417 0192.

The Dementia Research Centre atUniversity College London’s Institute ofNeurology is holding a meeting on

30 July for people affected by FamilialAlzheimer’s Disease (FAD).

The meeting aims to provide informationabout diagnosis and genetics, research into FAD,and to discuss the possibility of establishing asupport group for people affected by thecondition.

The meeting will be held on Friday, 30 Julybetween 10am and 4pm atWilkins Old Refectory, University College London,Gower Street, London WC1E 6BT.

For further information or to register, pleasecontact Natalie Ryan on 020 7691 2303(ext 723856) or email [email protected] closing date for registration is 22 July.

There is no fee for attendance, but registrationis required.

AGM materialsInside this issue, youwill find an annual conferenceprogramme and booking form for the Society’sannual conference, held between 17 and 18September at the University ofWarwick.

The conference encompasses our Annual GeneralMeeting (AGM), which takes place on Friday17September at 6.30pm. Theagenda, informationand voting papers for the AGMwill be sent to youwith your Augustmagazine.

Good times on the LondonMemoryWalk 2009New CEOJeremyHughes, Chief Executive of BreakthroughBreast Cancer, has been appointed as the newChiefExecutive of Alzheimer’s Society. Jeremy, who hasbeen at his current charity for five years, is also ChairofNational Voices, the umbrella body formore than200health and social care charities.

Alastair Balls, Chair of Alzheimer’s Society, said,'This is a critical time for the Society aswe implementgovernment sponsored dementia strategies.Jeremywill provide the insight, leadership,campaigning skills, commitment and energy todrive this forward successfully.’

Jeremy takes up the role inNovember.

‘...I look forward to working with all involved with theSociety tomeet the challenges of the new decade...’

JeremyHughes, appointed as the Society's new Chief Executive

In the press

Abdominal fat inmiddle age linked todementiaResearchby theBostonUniversity School ofMedicine published inAnnals ofNeurology foundanassociationbetween fat levels and total brain volume.Lower total brain volume is a strongpredictor of incident dementia.

Responding to the findings, Headof ResearchDr SusanneSorensen said,‘Wehaveall heard howabeer belly canbebad for our heart but this studysuggests carrying excess abdominalweight could also increase your risk ofgettingdementia.

‘This is not really surprisingas a large stomach is associatedwith highbloodpressure, cholesterol anddiabetes – allmajor risk factors for dementia.This largeand robust studybuilds on thegrowing literature lookingat linksbetweenobesity anddementia, butmorework is needed.’

BBeerrtt WWiilllliiaammss mmaaddee MMBBEEFormer Wolverhampton Wanderers footballer andEngland’s oldest surviving World Cup player Bert Williams was honoured for his services tocharity and football in the Queen’s BirthdayHonours. Williams, 90, was appointed MBE forservices spanning seven decades, and described

the award as the ‘icing on the cake’. Bert raised more than £100,000for Alzheimer’s Society after his wife died with the condition. Thestory appeared in the Daily Telegraph, Daily Express and The Times.

Safeguarding scheme plans reviewedEarly reports suggested the government is to halt plans to roll out theIndependent Safeguarding scheme (ISS) until a comprehensive reviewhas been carried out. The scheme is designed to protect children orvulnerable adults, and was due to be introduced in July.

Commenting in the Guardian, our Director of External Affairs Andrew Ketteringham said, ‘People with dementia are some of the mostvulnerable members of society. It is therefore essential that effectivesystems are in place to ensure they are not at risk of neglect and abuse.Any review must not scale back the scheme and make it any less robust.It has to cover people with different needs.’

Supplementin the DailyTelegraph

TThe Daily Telegraphproduced a supplemententirely devoted to

dementia on 27 June. Tocoincide with this year’sRemember the person theme,it featured author TerryPratchett OBE discussing hisexperience of living withdementia. There were alsointerviews with Societyambassadors Angela Ripponand Tony Robinson, andDirector of Research Clive Ballard, who emphasisedthe importance of increasingresearch funding.


The press team has been hard at work keepingdementia in the news and responding tojournalists’ requests. Here are some of the storiesyou may have spotted in June. By Claire Bennett

Society supporterSir Terry Pratchett OBE

Shro

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Your questions

I’m thinking aboutmoving my mum into acare home. She hasdementia and lives on her own, and I’m worriedthat she’s no longer ableto look after herself sothink a move may be forthe best. My sisterdisagrees, however, so I’m not sure what to do.Can you help?

We get a lot of callersasking when the timeis right to move

people with dementia intocare. Often, people havealready made up their mindwhen they call, but just need some reassurance. The decision can be muchmore difficult when there aredisagreements in the familyabout what to do for the best.

Many people feel guiltywhen they start thinking aboutmoving their partner orrelative into a home, and thisis understandable.

However, you need toconsider whether moving yourmum into care is in her bestinterests. There are a fewthings you can do that mayhelp you make the rightdecision.

You could discuss thesituation with someone fromsocial services. They can carryout an assessment todetermine your mum’s careneeds, which may help clarifythe type of care and supportyour mum needs, and the kindof environment in which itmay be best for her to receivethis care.

Some people choose to asktheir GP for advice, as theymay be able to discuss thesituation with your mum andtalk through the type of careshe needs.

If your mum receivesdomiciliary care, her currentcarers might also have somethoughts on her care needs.Talking to other familymembers about the situationmay be worth doing, too, sothe decision doesn’t just restwith you.

A further source ofinformation could be themanager of the care home youare considering moving yourmum to. You could ask for anoutline of the type of careyour mum would receive thereand to be shown around thefacilities.

Once you have thisinformation, it may be worthconsidering the benefits of a

move to a home, or ways inwhich your mum could receivemore care in her own home, ifthis option is possible. Themain consideration in makingthis decision is to do what youbelieve is in your mum’s bestinterests. Speaking to otherpeople first may help you andyour sister decide what to dofor the best.

By Sam Cox, Alzheimer’sSociety National DementiaHelpline Adviser

The following free publicationsmay help:

Community care assessment (418)

Selecting a Care Home (476)

Putting care right (838)

To order, call Xcalibre on 01628 529249, or downloadthem from alzheimers.org.uk

To read more Q&As from our National Dementia Helpline, visitalzheimers.org.uk/helplinefaqs

Our National Dementia Helpline handled nearly 20,000 enquiries last year.Every month, we publish frequently asked questions and situations our callersneed help with, along with advice from trained members of the team

Advice

‘

’


Remember the person

John WrightJohn is 68 and has Alzheimer’sdisease. He lives in Tower Hamlets,where he enjoys being involved inthe community and doing whathe does best – entertainingpeople.

John says, ‘All my life I’ve been anentertainer. I had my own show asa female impersonator and touredthe world with it. Danny La Ruecame onto the stage andsuddenly, drag shows wereacceptable. Every pub wasscreaming for acts and we jumpedon the bandwagon.

‘I miss that life very, very muchbut I run a pensioners afternoonon Fridays now and I look forwardto it every single week. We dobingo, karaoke and dancing, andI’m happy because I’ve got themicrophone in my hand again.Karaoke is the ideal thing for mebecause the machine tells me thewords.

‘It was the worst day of my lifewhen I found out I hadAlzheimer’s. But I thoroughlyenjoy helping to run the estatewhere I live and I hope thatkeeps me alert. I refuse to liedown, sit back and letAlzheimer’s take over me. Shootme if you see that happening.’

By the time you read this, Dementia Awareness Week will be well underway. This year’s theme is Remember the person. Here, John, Phillip and Leslie, who are helping to promote our message, talk about embracing life with dementia

John Wright

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Remember the personBy the time you read this, Dementia Awareness Week will be well underway. This year’s theme is Remember the person. Here, John, Phillip and Leslie, who are helping to promote our message, talk about embracing life with dementia

Phillip JosephPhillip is 80 and lives alone withdementia, also in Tower Hamlets.A lifelong sportsman andspectator, he was a pole-vaultingchampion of Grenada in the West Indies, where he grew up.

Phillip, also a tailor, says, ‘We grewup near the recreation ground inGrenada. I was there probably365 days a year doing cricket,football and athletics. I was thebest pole vaulter in my country. I used to pole vault with bamboo,which was quite dangerous as itcould have broken.

‘I like to socialise a lot. Every yearwe go to a Grenada anniversaryand meet people we haven’t seenfrom the early days. We rememberwhat we did when we were backhome in the Caribbean.

‘I have an open door to people I know. People come by and havea drink or two, and we watchsports on TV. It’s rare I don’t havesomeone with me.

‘I deal with dementia my ownway. I live on my own and try todeal with it in the best way Ipossibly can. I take it in my stride.’

Leslie NottinghamLeslie is 65, lives in Essex and hasAlzheimer’s disease. She is a fun-loving person who thrives incompany, and wants to be knownfor who she is, not for havingdementia.

Leslie misses her job working inchildcare, where she worked withfamilies and ran clubs in nurseries.She says, ‘Some of the childrenhad awful lives and the one thing Icould give them was love and care.I really liked my job.

‘I still run a club once a week foradults with learning difficultieswith a friend, which is similar tothe other job but I don’t get paidfor it!

‘I love clothes, dancing and beingwith people. I’ll dance to anything.If the music’s on, I’m on the floor.I hate being on my own. In fact ifI’m left on my own too long it’s as

if someone has taken the plug out.If I’m doing something or I’ve gotsomething planned, I seem to livemore, so I try to do somethingevery day.

‘I’m very lucky in lots of ways. I’vegot some really lovely friends andmy daughters are brilliant. I’m stilla person. I don’t like the worddementia, because you can seethe look in people’s eyes, as if I’mgoing to turn into some strangeperson. And I’m not! My worstthing is that I don’t rememberanything.’

To watch John, Philip and Leslietalk more about theirexperiences of dementia in short films, visitalzheimers.org.uk/remembertheperson

Leslie Nottingham

Phillip Joseph

‘...I’m very lucky in lots of ways. I’ve got some really lovely friends and my daughters are brilliant. I’m still a person...’

Leslie Nottingham


Time to smileWithout the support of our dedicated fundraisers, the Society simply couldn’tachieve its goal of improving lives for people with dementia and their carers

Fundraising

Sarah-Jane Szikora is aGateshead-based artistbest known for her colourful,

quirky paintings of ‘fat ladies’and gingerbread characters.Here, she talks about hermother’s dementia, why she issupporting the Society throughher work, and humour in her art.

Sarah-Jane Szikora’s motherwas diagnosed with Alzheimer’sdisease five years ago. She says,‘We lost my dad ten years ago.Mum lived on her own for fiveyears, and around the time shewas diagnosed she met someoneelse who’s now her main carer.Steve’s in his 70s and he drew theshort straw really.

‘It’s so unfair on him as hecame into her life and I feel isburdened with her care. He liveswith her and cares for her 24/7. I moved in with mum for sixmonths a year ago to help care forher on a daily basis, and it makesyou realise just how difficult thecondition is.

‘Steve has also had a stroke,which I believe was triggered byhaving to cope with this. Hedoesn’t like asking for help. I try tohelp out where I can, but I’mworking full time and more, andthere’s all the guilt associated withmum’s illness.

‘I’ve tried to organise respitefor them but it’s not working

terribly well as the woman whocomes isn’t trained in dementiacare. We’ve avoided using serviceswe haven’t needed at certainstages, but the situation ischanging now and we’ve been intouch with the Society locally.

‘I don’t think it should fall tocharities to provide care andsupport for people, but it does.

Thank God for Alzheimer’sSociety. I thought I may be ableto help in the course of what I do.’

Sarah-Jane kindly donated aprint which was auctioned for£3,000 at a fundraising event forthe Society, and most recentlycreated two limited editiondesigns for our 2010 Christmascard collection.

Speaking about her work, shesays, ‘I mostly draw my ideas fromsimply observing people andhuman behaviour. There’s a lot ofdepressing art out there. Artistswill respond to social difficultiesand I do the same, but there’s stillhumour in them.

‘I love the challenge of findinghumour in an ordinary situation.Life has so much misery andtragedy, I like to search out thegood bits and make people laugh.If I’m struggling with a blankcanvas, I take myself off to a localtown centre. Often I need only seea mundane scene such as thepurchase of a bag of chips and Iam on my way.’

Sarah-Jane recently spent aweek working with the seniornursing team at Bradford teachinghospitals as part of a King’s Fundproject called Enhancing thehealing environment, aimed atimproving the dementia wards.We will be writing more about theproject in a future issue.

Sarah-Jane kindlydonated a printwhich was auctioned for£3,000 at afundraising eventfor the Society

The mind boggles, which Sarah-Jane painted to representherself and her mother


All change

In the February issue of Livingwith Dementia, we set outsome of the pledges the main

political parties had made inresponse to the issues facingpeople with dementia and theirfamilies. Now, two months afterthe formation of a newConservative-Liberal Democratcoalition government, the politicallandscape has changed – and it isvital we all take action to keepdementia on the agenda.

Manifesto pledges andgovernment commitmentsFor the first time in an electioncampaign, all three main politicalparties made specific commitmentsto dementia in their manifestos.This was a terrific achievement,and testament to the hard work ofAlzheimer’s Society staff, volunteersand campaigners who helped putdementia at the top of the agenda.

The coalition has published aprogramme for government, adocument that sets out its visionfor the next five years. Within thisplan, it has made a number ofpromises that will affect peoplewith dementia – including acommitment to set up acommission on long-term carethat will look at a range of fundingoptions. The programme alsoincludes a commitment toprioritise dementia research funding.

Alzheimer’s Society welcomesthese commitments, but we needto ensure the new governmentdelivers on its promises andrecognises that people withdementia and their carers need abetter deal. In the current financialclimate, it is more important thanever to step up our campaigningefforts to ensure dementia is a toppriority.

What next?Alzheimer’s Society’s public affairsteam has already written to allMPs briefing them about the keyissues affecting people with

dementia and their families, andurging them to support our work.The team is also inviting MPs tojoin the All-Party ParliamentaryGroup on Dementia, a group ofMPs and Peers which raisesawareness of dementia amongparliamentarians and seeks to influence legislation and policy- making on the condition.

How you can helpWe know that MPs are more likelyto prioritise issues when they areraised directly by their constituents,so it is vital your MP understandsyour experiences and the difficultiesyou face, and what needs to change.

This election saw 232 new MPselected to parliament, many ofwhom may have little knowledge ofdementia or its impact in theirconstituency. Whether you have anew MP or not, please take the timeto contact them explaining thedifficulties you face, whether it befunding for care, access to services,or the quality of care in your area.

For more information about the new government andAlzheimer’s Society’scampaigning priorities, or to sign up to our campaigners’network, please log ontowww.alzheimers.org.uk/campaignor email [email protected]

By Helen Dickens, Communications Manager: Campaigns

Campaigning


To Spain and back

We were living in a flat inBristol where Ann wasworking as a travel

agent and I was working for amanufacturing company. I’dbeen ill for some time, so wedecided to retire early.

We didn’t know where to go.We have children and thoughtthat as Spain is only two hoursaway on a plane, we could getback easily if we needed to. We were going to buy a villa witha pool and live the good life.

We’d never been to Spainbefore, so we took time off workto go and have a look arounddifferent areas. It was like afantastic long holiday.

We explored up and down thecoastline, lazed in the sun andswam in the sea. We fell in lovewith an apartment in a placecalled Majaca in Andalucia. It hadtwo bedrooms and was on a smallcomplex just 200 yards from thesea. It was absolutely beautiful.

We started looking in January2002, and by June of that year,we’d moved. I had a navalpension which was adequate tolive on, and we had some moneyfrom our flat in Bristol.

We lived quite happily thereand got to know people. I starteddoing odd jobs and we were goingalong nicely and nothing reallyhappened until October 2006

when I started to notice changesin Ann.

She lost her enthusiasm to sitin the sun and go for walks. Weused to do the crossword togetherbut she couldn’t concentrate, herspeech was becoming slow andshe gained weight. Then therewere two little accidents in the carwhen she forgot which way to goon the roundabout.

We came back to the UK to seethe GP, who said Ann wasdepressed. Her mum hadAlzheimer’s so we’d seen similarthings happening to her. On oneoccasion, Ann had got lost atthe airport and after that Ifound it difficult to leave her to

Peter and Ann Oldacre took early retirement to settle in southern Spain,where they were looking forward to a stress-free life in the sun. Their plansfell apart, however, when Ann started showing signs of dementia. Here, Peter tells their story

Peter and Ann Oldacre at home

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To Spain and back

do anything alone. On one of our visits to the GP

in the UK, Ann’s MMSE scoreshowed she’d deterioratedincredibly quickly. The healthservice is brilliant in Spain, butunless you’re good with thelanguage and can understandwhat’s happening, it’s verydifficult. Their service alsodepends very much on familiesbeing involved and helping. I couldn’t work or go out and doanything. In the end, we had nooption but to come back.

Back homeAnn’s very close to her sister,Sandra, so we moved in with herand her family in Monmouthshire.They had one son at home andtheir other son was at university.They gave us a big doublebedroom and at this time Annwas still walking and talking, butshe’d become incontinent andhad collapsed a couple of times.

My naval pension was payingfor our mortgage in Spain, but it

was the only thing we had to liveon. We were struggling. Andstaying with Sandra put aterrible strain on her and thefamily. At this time we stillhadn’t had a diagnosis.

In the end, we saw a newconsultant. I’d always hadAlzheimer’s in the back of mymind, but it’s devastating whenthey tell you the news. Then it’sa case of, ‘Thank you very much,goodbye,’ and you walk out ofthe door, thinking ‘What the hellam I going to do now?’

Sandra mentionedAlzheimer’s Society, and I wentto one of their evening meetingsfor carers. I was the youngestperson there by 20 years or so.Ann had just had her 60thbirthday. I was put in touch witha woman called Anne Carpenter,who supports younger peoplewith dementia at the Society.

Without Anne, I don’t knowwhat we would have done. Justfilling all the forms in for benefitswas a nightmare. You don’t knowwhere to start. There are lots ofblack and white questions butthe answers aren’t black and white.

Selling the house in Spain wasalso proving to be an absolutenightmare. I didn’t have Powerof Attorney so we couldn’t sell itas it was in both our names. Wehad to do everything in front of

When Peter and Ann Old acresold up in England to moveto Spain, they were lookingforward to the good life inthe sun.

They bought their dreamapartment in Andalucia, andsettled into what they hopedwould be a long, happy retirement. When Ann’s behaviour started to change,and Peter felt he could nolonger leave her alone, theydecided to move back to theUK. Without the necessarylanguage skills or family support, they had little option.

Now 62, Ann is doubly incontinent, immobile, andhasn’t spoken for the lasttwo years. They live in a remote hamlet in Wales in acouncil owned bungalow,and Peter, 64, is taking medication for depression.

He said without the supportof Alzheimer’s Society, hedoesn’t know how theywould have coped. He isgrateful for the support hehas received, but says, ‘Thisisn’t quite the life I hadimagined. It’s difficult, it really is difficult.’

Quick readCaring


the notary over there, andeverything had to be translated,which cost a fortune.

We were running up huge billsgoing backwards and forwards toSpain, and all we had to live onwere Ann’s disability livingallowance and her state pension.It took a year to sell the house. By this time, Sandra’s son was dueback from university, so we had toget a letter from Sandy to say wewere going to be made homelessso we could get a council house.

We moved to a bungalow in ahamlet called Cross Ash, betweenAbergavenny and Monmouth.

Life todayThis place is on top of amountain in Wales. It’s ten milesfrom the nearest shop, andthere’s no public transport. It has a beautiful view but isn’tdesigned for someone who’sdisabled. We had no idea howquickly the disease was going toaffect Ann. When we movedhere, she was still walking andtalking. She soon started fallingmore, lost the ability to standand walk, and hasn’t spoken tome in the last two years.

There was a period wheneverything was going wrong, andto get help from anyone was sodifficult. People don’t tell you inadvance that help is available.When Ann first becameincontinent, I’d go to the chemistand spend all our money onincontinence pads. No one toldme you could get them from theNHS or that an incontinence

nurse could come and do anassessment.

Trying to get what you areentitled to is so difficult and sofrustrating. There have beentimes when I could just walkdown the road, get on a planeand fly back to Spain and letsomeone take over.

I get a break three days aweek. Some days I go back to bed,

and some days I shop as it givesme something to do. Alzheimer’sSociety has opened up a memorycafé and carers meetings inAbergavenny and Monmouth, so I go every couple of months.

It isn’t quite the life I hadimagined. I’m on the happy pill. I go to carers meetings and it’sgood because they tell you it’sokay to be depressed and angryand frustrated, because if youbottle it up you won’t do yourselfany good.

It is heartbreaking to seesomeone you’ve been married tofor a long time, the person youlove and who you’ve had childrenwith, disappear as the person theywere. Anne was a bubbly, I’ll give-anything-a-go type of person.Some days she’s still there. She’llgive me a cheeky little smile, grabhold of my hand and not let it go.Some days it seems she knowswho I am, other days I reallydon’t know.

‘But she’s not the sameperson anymore. It’s difficult, it really is difficult.’

Anne is 62, and Peter is 64. Their daughter, Andrea, lives inWiltshire, and son Gary lives inCardiff. Peter has made a film toshow the impact of Alzheimer’sdisease on Ann’s life, and toremember the fun-loving personwho embraced life at everyopportunity. He also wants thefilm to raise awareness ofAlzheimer’s Society. We willinclude more details about thefilm when it is available to view.

There have beentimes when Icould just walkdown the road,get on a planeand fly back toSpain

‘...I go to carers meetings and it’s good because they tell you it’s okay to be depressed and angry and frustrated... ’


Exercise and dementia

Observing a patient withdementia in 1907,German neurologist Alois

Alzheimer wrote, ‘One of the firstdisease symptoms was a strongfeeling of jealousy towards herhusband. She could not find herway about her home, draggedobjects to and fro, hid herself, orsometimes thought that peoplewere out to kill her.’

This landmark descriptiondescribes a complex experienceincluding difficulty with thinkingand memory, and paranoia andagitation. The latter two can bedescribed as examples ofbehavioural and psychologicalsymptoms of dementia (BPSD).

These symptoms are difficult torecognise and address. For theperson with dementia, BPSD mayreflect challenges ofcommunicating thoughts andfeelings. For carers and relatives,the need to provide constantreassurance and repetition cancause frustration. As a result,safety and quality of life canbecome hard to maintain.

Understandably, when BPSDbecome unmanageable, a moveinto a care home may beinevitable. This is a pivotalmoment, not least for the personmoving into an unfamiliar place,but also for those of us who wishto do more for our loved ones.

When BPSD strikes at the corevalues our relationships arefounded on, including trust andemotional warmth, the damagecan be considerable.

Research reporting theproportion of people experiencingBPSD is limited and we aren’tcertain of the exact figure.However, one group reported thattwo in three people with dementialiving at home experience BPSD.Within care homes, this number isgreater, between 70 and 90 per cent.

We are becoming increasinglyaware of the limitations ofmedications for the treatment ofBPSD, but the search for adequatealternatives has been relativelyneglected. While exercise isalready known to providetherapeutic value for clarity ofthought, we are less clear on theusefulness for BPSD.

Early indications suggest 30 minutes exercise daily can helppromote regular sleep, reduceagitation, prevent depression andreduce the need for certain drugs.

However, this research is limitedand we need stronger evidence.

Our project – EVIDEM-E* – isexamining whether regularwalking can be used to treat BPSDand the impact this has on qualityof life. People with dementia livingin London (North Thames) areinvited to take part. Participantswill be visited at a time to suitthem and in their own homes.

The aim of the project is to findout if regular walking could provean effective way of reducing BPSD.If successful, exercise therapycould provide an inexpensive andreadily available intervention thatwill help improve the lives ofboth people with dementia andtheir carers.

*EVIDEM-E is part of a widerresearch programme known asEVIDEM (Evidence-basedInterventions in Dementia)funded by the National Institutefor Health Research. You can visitwww.evidem.org.uk for moreinformation. To find out moreabout taking part in EVIDEM-E,or to receive updates about theresearch programme, pleasecontact Arlinda on 020 32145886 or email [email protected].

For research references [email protected]

Researchers in London are looking for participants for a project investigatingthe impact of exercise on alleviating particular symptoms of dementia. Senior Research Programme Manager Dr David Lowery explains more

Research


Explaining dementia to children

When a person hasdementia it can affectthe whole family, and

young children can find itparticularly upsetting. They can bedistressed by changes in arelative’s behaviour, or even worrythat they are somehow to blamefor the illness.

Eileen Mitchell is the author ofIt’s me Grandma! It’s me!, a storyabout dementia aimed at seven toeleven year-olds. The book wasoriginally published in 1991, andwas republished by Alzheimer’sSociety in May this year. It aims tohelp a new generation of familiesexplain dementia to theirchildren and talk about theirfears and concerns.

The idea for the book cameabout while Eileen was working asa senior occupational therapistsupporting older people withdementia. She was one of thefounding members of the Society’sBridport branch in Dorset and rancarer support groups for many years.

During this time, Eileen sawfirst-hand the impact of dementiaon young children. She says,‘Children didn’t understand whytheir grandparent was gettingcross or confused, or repeatingthemselves all the time. Carerswere always asking aboutliterature for children, but at thetime there was nothing available.’

The seedIn 1986 Eileen visited the UnitedStates, where she came across astorybook about dementia calledGrandpa doesn’t know it’s me.She brought back some copies forcarers, and when one carercommented that the book didn’treflect the experience of familiesin England, the idea for her ownstory developed.

Eileen’s colleague, ClaireStapely, produced illustrations forthe original edition, and in 1991the local NHS trust funded an

initial print of 1,000 copies. Such was the demand that thebook was reprinted a second andthird time, with copies sold topeople as far afield as China.

The aims of the bookEileen says, ‘For me, the book wasone way of helping childrenunderstand what was going on, sothey knew that their grandparentwas behaving differently becausethey were poorly.’

Eileen also wanted the book toshow the realities of dementia.‘The story is based on real services,and shows the progression ofdementia. It prepares the way,showing in a sensitive way thatthe illness will get worse.’

The book also illustrates howchildren can maintain a positiverelationship with a relative withdementia, for example by carryingout day-to-day tasks together in away that benefits both the childand their relative.

It also proved a useful resourcein local schools. Eileen visitedschools to do readings andexercises with groups of childrento demystify dementia. Eileensays, ‘Children as young as fivewould ask pertinent questionssuch as, “Is there a pill to makeyou better?” They were able toreally grasp the ideas in the story.”

The Society has republished a storybook that helps young children come toterms with a relative’s dementia By Caroline Graty

Eileen Mitchell and her grandchildren


Explaining dementia to children

While the story was a result of Eileen’s professionalexperience, it hassince proved usefulwithin her own family.She recently read the book withtwo of her step-grandchildrenafter their great-grandmotherdeveloped memory problems.Eileen says, ‘It’s good to havesomething to help childrenunderstand what is happening.’

The Society’s new edition hasan updated look, with newillustrations from Melvyn Evans.However, the story itself isunchanged, and still reflects theexperience of families withdementia today.

Eileen says, ‘I’m thrilled thatthe book has been publishedagain. I hope people will find it asappealing and helpful as they didwhen it first came out.’

About the bookIt’s me Grandma! It’s me!focuses on a little girl called Vickyand her relationship with herGrandma. It follows Grandma’sjourney through dementia, frominitial memory lapses to hermove into residential care.

The story sensitively handlesscenarios that many families whohave experienced dementia willrecognise. Grandma begins to

get confused aboutsimple tasks, goesmissing when shecan’t find her wayhome andsometimes forgets

Vicky’s name. Using simple terms, the book

explains the role of the healthand care professionals thatfamilies can come into contactwith when they have a relativewith dementia, such as a GP, acommunity psychiatric nurse andan occupational therapist. It alsotalks about services such as day centres, respite care andresidential care.

It’s me Grandma! It’s me!costs £4.95 and can beordered by calling Xcalibre on 01628 529240.

Dementia and children oryoung people (515) is availableonline and has moreinformation on talking tochildren about dementia. We also have a free bookletentitled Talking to childrenabout your illness (1507),aimed at people with dementia.To order the booklet callXcalibre on the number above.

A further resource for children is currently in production.

The Society has republishedIt’s me Grandma! It’s me!,a story book that helpsparents and carers explaindementia to young children.

The story is about a little girlcalled Vicky and herGrandma, who developsAlzheimer’s disease andeventually has to go into ahome. Through theirexperiences, it explains howdementia can affect peopleand the role of the differentprofessionals who can help.

The book’s author, EileenMitchell, was working withpeople with dementia as anoccupational therapist whenshe had the idea for the book.

Eileen says, ‘Children didn’tunderstand why theirgrandparent was gettingcross or confused, orrepeating themselves all thetime. The book was a way ofhelping children understandwhat was going on.’

First published in 1991, thebook can now be used by anew generation of families.Eileen says, ‘I hope peoplefind it just as appealing.’

Quick read


easyJet and KPMG give carers a break

Acarer from NorthernIreland has beenpresented with a mini-

break by Society Charity of theYear partners easyJet and KPMGin recognition of her caring role.

Wilma McMurray, fromDoagh, was delighted to receivea break for two in Edinburgh,with flights donated by easyJet,and KPMG providing a stay inthe Caledonian HiltonEdinburgh, courtesy of HiltonHotels.

Wilma’s husband Jim wasdiagnosed with Alzheimer’sdisease and bowel cancer at theage of 56, and Wilma has beencaring for him for 13 years. Shesays, ‘I love Jim and am alwaysthere for him, but caring can bevery tiring so it will be lovely to go

away for a little while.’ The presentation was one of

five made to carers around thecountry in recognition of theircommitment to their loved ones.The other recipients were ElaineButlin from Lewes, Pat Clementsfrom Whitchurch, Anne Powellfrom East Didsbury, and BeckySmith from Newcastle.

easyJet will be raising moneythis summer through onboardcollections, asking customers todonate their foreign and Britishchange until 5 September.

Meanwhile, KPMG is ontarget to raise £1 millionthrough the hard work of itsemployees, who have beenholding cake sales, climbingmountains and cycling cross-country to support the Society.

Local News

Celebrating 25 years

L-R easyjet cabin crew Nicola Brady, carer Wilma McMurray andBBC Newsline presenter Sarah Travers

Pupils from Hurst Primary Schoolin Bexley at the 25th anniversarycelebrations

The Society in Bexley is celebrating25 years of services in the borough.

The festivities began on 13 May with a programme ofentertainment in Bexley’s shoppingcentre, when founder member ofthe original Bexley branch, Gillian Collins, welcomed visitors.

Passers by enjoyed songsperformed by pupils from fourlocal primary schools, as well as aPunch and Judy show and aballoon launch.

The celebrations will continuethroughout the year with eventsincluding a silver themed summerparty and a group sing-alongevent in September with theSociety’s celebrity supporter,David Van Day.

Tracey Errington, SupportServices Manager for the Societyin Bexley and Bromley, says, ‘Weare very proud to be celebrating25 years of service to the localcommunity and were delightedthat so many people came out tosupport us.’


Sunbeams light up the South LakesMembers of Annie Mawson’s Sunbeams Concert Troupe were thestars at a fundraising concert in Kendal organised by former carerCliff Dadson.

Ninety-year-old Cliff arranged the concert with Annie, who isfounder and Chief Executive of the Sunbeams Music Trust.Sunbeams is an award-winning charity that provides therapeuticmusic for children and adults with special needs.

More than 150 people attended and the concert raised a grandtotal of £2,000, to be divided between Sunbeams and theSociety’s work in South Lakeland.

Cliff chose to support the Society because of the help andsupport he received while caring for his late wife, Rae, who hadAlzheimer’s disease.

As well as being a fundraising event, the concert was a tributeto Rae, who died last year. Cliff says, ‘When Rae was diagnosedshe said, “I’m not going to let it get me down, and I’m not goingto make a secret of it.” She was a great inspiration to others.’

Mayor’schoice

The Society in Yeovil wasdelighted to receive acheque for £7,228, the

result of a busy year of fundraisingactivities for one of the Mayor ofYeovil’s charities of the year.

The Mayor, Councillor Wes Read, chose Alzheimer’sSociety and LeukaemiaResearch to receive the proceedsfrom a host of events. Theseincluded quiz nights, a concertfeaturing local musicians, and afundraising ball at which Societyambassador Lynda Bellinghamwas a special guest.

Jill Lock is co-ordinator forservices in the area. Jill says, ‘It was a great privilege to bechosen as one of the Mayor’scharities. Not only will the fundshelp our work supporting peoplewith dementia and carers in thearea, but the publicity has reallyraised the profile of theSociety’s services here.’

L-R Jill Lock, Support Services Manager for South and East Somerset, the Mayor of Yeovil Councillor Wes Read, and KarenStutz, Office Administrator for South and East Somerset

WE WANT YOUR STORIESHave you got a story you would like to share? If so,we would like to hear from you. Please contact ourfreelance writer, Caroline Graty on 07984 911913 oremail [email protected]

The Sunbeams Concert Troupe performing at Kendal United Reformed Church


Stemming the tide

In May, leading researchersfrom King’s College London(KCL) came together for a

stem cell research forum to discusshow research in this area wasprogressing. The event was hostedat KCL’s Biomedical ResearchCentre, a cutting edge stem cellresearch facility.

What’s new?Among the developmentsreported at the forum was theexciting news that results fromresearch using stem cells to repairdamage in the brains of peoplewho have had a stroke would beavailable in the next two years.

Similar experiments in animalshave shown that although stemcells introduced into the brain donot survive especially well, thereare still improvements in the brainand in the symptoms of stroke.

As the new stem cells are notsurviving to repair damagethemselves, it is possible thatinstead they produce growthfactors which help to repair theexisting cells. If this is what ishappening, these results open upnew directions for stem cellresearch and the possibilities ofnew treatments for dementia.

What are stem cells?Most cells in our bodies havespecific roles, but stem cells are

different. They are basic cells thatexist in many of the body’s tissues,including the brain, liver, skin andbone marrow. Stem cells candevelop into more specialised cellswhen repairs are needed. They canrenew themselves and travel to apoint of damage to replace lostcells, acting as a built-in repair kit.

If we can understand themechanisms that control anddirect stem cells, we could usethem to treat damaged tissuesand other cells. Given their abilityto grow into nerve cells, they havethe potential for treatingneurological conditions such asAlzheimer’s disease and othercauses of dementia.

Progress in Parkinson’sThe pace of stem cell researchhas picked up in the last fiveyears, but work is still at arelatively early stage. Mostprogress has been made in thetreatment of Parkinson’s

disease, mainly because thedisease is caused by the loss ofone type of brain cell in a smallarea of the brain, rather thanthe widespread damage tomany different types of cellsthat underlies most causes ofdementia.

Clinical trials of a stem celltherapy for Parkinson’s diseasehave shown promising results, andthe approach appears to be safeand effective. However, thetechnology is still in its infancy andthere is much we don’t understandabout the way stem cells function.

Despite this, a number ofcentres in Germany and Holland,among other countries, areoffering treatments forParkinson’s and variousneurological conditionsincluding dementia, on a privatebasis. However, in the case ofdementia, there is no evidencethat these treatments arebeneficial.

Research into stem cells has been gathering pace in the last five years. Caroline Bradley explains what this means for people with dementia

Adult neural stem cells seen through a high-powered microscope


Stemming the tide

The good newsWorking out how to position andcontrol stem cells in the brain is adifficult task. Not only would thecells need to be in the right placeand respond to instructions tobecome the right type of cell, theywould then have to integratethemselves into the brain andstart functioning correctly. This isno small task, and treatments fordementia using this technique aremost probably twenty years away.

However, the possibility thatnew stem cells could have ageneral but positive effect onthe brain by producing growthfactors offers hope, because itmeans the actual position ofthe stem cells is less important.

To date, it has been difficult tofind ways of successfullyintroducing growth factors intothe brain. Alzheimer’s Society’sDirector of Research, ProfessorClive Ballard, is extremely hopefulabout this area of research.

He says, ‘If we think outside thebox a little, we could be looking ata new treatment for dementia infive to ten years.

‘Harnessing stem cells’ability to produce growthfactors could help to sustainnerve cells, enable some repairsand slow down the progress ofthe condition. The planned trialsfor people who have had astroke are just around thecorner.’

Even if the goal of a stem celltherapy is not realised, stem cellshave more potential uses than adirect treatment for dementia.They can be used to tell us a hugeamount about how cells in thebrain function, thereby informingthe development of treatmentand determining the future pathof research.

The Society is currently fundingfour projects that are exploringdifferent ways of harnessing theproperties of these industriouscells to help prevent and treatdementia.

Further readingThe current edition ofAlzheimer’s Society’s researche-journal (issue 10) provides acomprehensive overview of keydevelopments in stem cellresearch – visitalzheimers.org.uk/issue10

Stem cell research is afast-moving area thatseems to hold a good dealof promise for people withdementia.

The value of stem cells lies intheir ability to develop intoother cells in the body thathave been damaged andneed replacing.

If we can direct stem cells todevelop into the right type ofnerve cell, they could be usedto repair the damage in thebrain that causes dementia.

Research using animals hasshown that while stem cellsintroduced into a damagedbrain do not survive for verylong, there is still an improvement in brainhealth. Researchers suspectthis is because the stem cells produce nurturing chemicalsknown as growth factors.

Until now, the challenge hasbeen positioning and controlling stem cells to repairdamage in the brain. If stemcells can produce chemicalsthat lead to a general improvement in the brain, their location may not matter.

Quick readResearch

PhD student Stephanie Strohbueckerwith Dr Virginie Sottile


LettersTell us your views

JUNE 2010 £2 (free to members)

Victory for our campaigners‘Our unsung hero’ from HullAdvice for a frustrated daughter

LivingwithdementiaThemagazine of Alzheimer’s Society

Pulling togetherOne family’s story about coping with dementia

Hear, hear!I would like to thank BarbaraPointon for her superb letter in theMay issue about the withdrawal ofNHS continuing care funding. She expresses the situation soeloquently.

My husband was diagnosedwith dementia in 2003. I cared forhim at home until February 2009 atwhich time, very sadly for me butout of necessity, he went into aspecialist nursing home in Oxfordwhere he has excellent care.

I know of five people withdementia whom, despite being inprofound states of dementia, havehad their funding withdrawn. The stress to carers is huge, and asBarbara Pointon points out, wesuffer plenty of that anyway. I particularly agreed with hercomment about people being ‘lesstrouble’ when they are cruellyrendered unable to do anything for themselves and how we ascarers are increasingly unable to‘entertain’ or help thememotionally or spiritually.

I am particularly aware of myhusband’s lack of visuo-spatial andperceptual awareness. I don’t thinkhe sees much at all that makessense to him. This eliminates anypleasure gained from books orpictures and television.

Thank goodness for music andthe human voice, and a recentaromatherapy and foot spa sessionorganised by an inspired carer.Thank you so much for this letterand its publication, promulgatingthis problem. Cecilia Adamson, Combe,Oxfordshire

The dreaded assessmentIn the May magazine, Barbara Pointon’s letter, Another campaign cause, highlighted very effectively the heightenedstress that carers of people with severe dementia undergo every time that dreaded date for ‘the assessment’ arrives.

As Barbara so rightly points out, obtaining NHS-funded continuing healthcare* at other stages in this terminal illness is not a guarantee that it will continue until the end of life.

Instead of being offered skilled support from health professionals as dementia progresses, the person with dementia is likely to be declassified as needing only ‘social support’, hence no longer requiring NHS care and being deniedNHS funding.

When challenged, the professionals themselves aren’t evenable to identify the boundaries of health versus social needs in dementia!

Meanwhile, carers have to invest even greater skill and effort in helping their loved ones maintain their abilities as they lose the ability to function independently.

When it comes to pain relief in dementia, the inadequaciesare well documented. Research studies highlight the difficultycare staff face in not only measuring the pain a person with dementia is experiencing, but also of being aware of it.

There would be a public outcry if we treated other terminallyill sufferers to the indignities of denying them medication anddemanding they undergo an assessment for their needs, andthen ‘means testing’ them if the assessment deemed them too passive to qualify for state-funded care.

Yet for those with severe dementia nearing the end of theirlife, there often is no comforting state-funded support offered.

No family or carer should be required to challenge decisionson funding issues whilst caring and supporting a loved onethrough the terminal stage of their life, yet for many familiescaring for a person with severe dementia, this is an all too familiar scene.

Yes Barbara, like you, we too feel a campaign coming on!Joyce Ruiz, email

*NHS continuing healthcare (also known as NHS continuing care and fully funded NHS care) is a package of care arranged and funded solely by the NHS.

Letter of the month

June issue

Count me in!I was shocked to learn from theletter from Barbara Pointon in theMay issue of your magazine thatmany people are having theircontinuing healthcare fundingwithdrawn when they reach thesevere stage of dementia. Yes, count me in to join a campaignto stop this stupidity!

In addition to the points youraise, might I add the fact that evenif you get the funding, it seems thatyou are unable to pay a top up outof your own pocket for the room ofyour choice at your existing care home.

It appears that the care homewhere my wife is has to re-tender for the care, and may welllose out to a cheaper/shared roomat another care home with all theemotional upheaval that such amove entails. For this reason alone Ihave not even bothered to apply,even though my wife is at the severestage as described by Barbara.

Contrast all this appallingnonsense with the NHS handling ofa cancer patient and you see thebias of the NHS system againstpeople with dementia. It is ofcourse all about money, eventhough it does not comply with thebasic principles enshrined in theNHS charter.Michael Goldsmith, email

Review of Alzeimer’s drugs I was very interested to read thisnews in your June magazine andagree that the advice given by theNational Institute for Health and Clinical Excellence (NICE)regarding drug treatments forAlzheimer’s disease is veryunhelpful. I feel my husband’s case history will support this.

Some two and a half years ago,we moved up to Yorkshire from theSouth West. For some time, I hadnoticed that my husband wasbecoming increasingly forgetful. We went to the GP in March 2009 toask about a memory clinic.

The GP referred us to apsychiatrist for the elderly and myhusband was given a memory testby a community mental healthnurse. His low MMSE score showedthat he was ‘borderline Alzheimer’s’,and the psychiatrist prescribedAricept, at first 5mg and then 10mg.

We had a further appointment inDecember, and in February this yearwent to a memory clinic. This time,his score was higher, the nursefinding that my husband was at thebottom range of normal. We have allnoticed that he is much more alertand that his short-term memory,though not good, has improved.

I cannot say how grateful we arethat we moved into an area where

the health authority was prepared togo against the advice of NICE. Ourvery nice psychiatrist also believesthat Aricept slows down theprogression of the disease.

I do hope that you are able toinfluence NICE.Penny Richards, Ilkley


‘...When it comes to pain relief in dementia, the inadequacies are well documented... ’

Joyce Ruiz

We welcome your lettersPlease write to Magazine Editor, Alzheimer’s Society, Devon House, 58 St Katharine’s Way, London E1W 1LB or email [email protected] may be edited. We regret we are unable to forward letters on to correspondents without their prior consent. Letters for the August issue to arrive by 2 July. The views expressed in this magazine are personal and not necessarily those of Alzheimer’s Society. Editor: Rachael Doeg

Letter of the monthCongratulations to Joyce Ruizfor her letter, The dreaded assessment, our first letter ofthe month! The letter of themonth was introduced in response to the popularity ofthe letters pages among readers.

Joyce will receive a bunch offlowers, courtesy of health supplement supplierHealthspan*, which raised£200,000 for the Society earlier this year.

Please just keep on sendingyour letters in as usual to theaddress below raising the issuesthat concern you, and sharingyour views and experiences. We very much look forward tohearing from you.

*Healthspan is the UK’sleading home shopping supplier of vitamins, mineralsand health supplements.

Registered charity no. 296645. A company limited by guarantee and registered in England no. 2115499.

Alzheimer’s Society National Dementia HelplineEngland and Wales 0845 3000 336Open 8.30am – 6.30pmMonday to Friday Northern Ireland028 9066 4100Open 9.30am – 4.30pmMonday to Friday

Useful contactsAlzheimer’s Society websitealzheimers.org.ukAccess all our factsheetsalzheimers.org.uk/factsheets

Alzheimer’s Society aims to publish clear, accurate and independent information for people with dementia andtheir families and carers. The Society is pleased to receive funding through sponsorship but does not endorseany products those sponsors produce.

Living with Dementia programmeIf you have dementia and would like to volunteer for the Society, call Jade Rolph on 07718 737 284 or email [email protected]

Changing your detailsIf you need to update your address details or inform us of any other changes, please contact membership enquiries on 0845 306 0868 or email [email protected]

Remember the person this Dementia Awareness Week 2010™This year for Dementia Awareness Week™, our theme is Remember the person.Throughout the week, we are encouraging people to look beyond dementia andunderstand that everyone living with dementia is still a person.

Our Remember the Person booklet, available from Xcalibre*, has ideas on how tobefriend and support people living with dementia and their families.

As ever, we need your support to make the most of Dementia Awareness Week™. There is still time toenter our Remember the person photography competition – see alzheimers.org.uk/photocomp fordetails – but hurry! The closing date is 10 July.

Dementia Awareness Week™ runs from 4 – 10 July in England and Wales.

*To order the booklet, pictured above, call 01628 529240 and quote code 260.

Alzheimer's Society Living with dementia magazine july 2010 · 2012-01-13 · July2010 Inside ......

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