alz winter2012

DECEMBER 2011/JANUARY 2012 £2 (free to members)

Your questions – Ideas for festive gifts (p7)Home improvement agencies (p14)Volunteering awards (p16)

LivingwithdementiaThemagazine of Alzheimer’s Society

Taking thepassenger seat

It’s often visitors at festivegatherings, such as at Christmas,who can see most clearly thechanges in someone withdementia. That was certainly myexperience with my own father,who I only saw around once ayear as he was living in Canada.

What family members also seeare the emotional and physicaldemands on the principal carer.It’s a time when we can all play

our part to relieve some of theirdaily load and enjoy memoriestogether of past family occasions.

These get-togethers are alsowhere the early development ofdementiamay be recognised. Ourrecent survey showed that 60 percent of dementia goes undiagnosed.

We have partnered with theDepartment of Health in Englandon an advertising campaignencouraging anyone worried abouttheir memory to see the GP.The Society ensures that ourhelpline, website and publicationsare all on hand, since too often thequestions you want to ask cometomind after the clinic visit.

We all have a part to play.This year I have been delightedto see an increase in volunteernumbers. A volunteer can spendtime, share experiences andaccess the wider resources ofthe Society, both our staff andinformation. There are also more

dementia advisers providinga professional point of contactfrom the time of diagnosisonwards. We need to ensure thatexisting posts can continue andmore are added.

Many members andsupporters have attended ourconferences in Wales, NorthernIreland and in the English regionsover the past few months – farmore than had been to thenational conference in recentyears. It has been uplifting tomeet so many people and hearof their determination to makea difference for people affectedby dementia. Thank you for allyou have done in the past year.

I look forward to seeing manymore of you in 2012 as we takeforward our mission togetherto defeat dementia.

Jeremy Hughes,Chief Executive

Chris KirbyChris has beenworking as aCampaignsOfficer sincejoining the

Society in 2010. He previouslyworked as a parliamentaryresearcher and election agent.Chris has a degree in politicsandworked on theObamaelection campaign in 2008.

Directions

CarolineBradleyFreelance sciencewriter CarolineBradley has beenkeeping readersinformed about

dementia research for the last eightyears. Originally a radio journalist,Caroline has worked for severalnational charities. She also freelancesfor community organisations inYorkshire.

ContributorsRachael DoegRachael is theformer Editorof Living withdementia andnow writes on

a freelance basis. She continuesto have an interest in dementiaand in this issue writes abouthow the environment can play apart in maintaining a person’sindependence and well-being.

Living with dementia 3alzheimers.org.uk

4 News and notices

6 In the press

7 Your questionsIdeas for festive gifts

8 AdifficultdecisionDeciding to stop driving

10 FundraisingBaring all for dementia

11 CampaigningAdd your voice

12 CaringRemembering lost loved ones

14 Better at homeHome improvement agencies

16 Winning inspirationVolunteering awards

18 Local news

20 ResearchB is for… prevention?

22 Letters

24 Useful contacts

Inside

8

6

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I’m really pleased to welcome readers to this issue of themagazine, which is not only my first as Editor but whichalso sees in a key year for the Society.

I have an awful lot to learn about dementia and the workof Alzheimer’s Society volunteers, staff and supporters –thank you to Sarah and everyone at Islington’s Singingfor the Brain group for helping to get this process going!

I am keen to hear about the things that are most importantto you, so do let me know via email: [email protected]

It is clear from the recent members’ survey that thismagazine holds a special place in its readers’ lives, and it isvery much your publication. While we have ideas about howwe might develop it, I am committed to making sure that wecontinue to provide a place where members can find out whatthey need to know and share their stories with others.

It is great to be on board, and I’m looking forward tohearing from you, learning more about living with dementiaand doing what we can to help.

Danny Ratnaike, Editor

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December 2011/January 2012

4 Living with dementia

No cash for new strategyNorthern Ireland has launched its first dementia strategy, aiming to increase awareness and understandingof dementia and to support people with dementia and carers – but there is no additional funding toimplement it. Health Minister Edwin Poots introduced the strategy at the Northern Ireland Assembly inNovember. Although he said that ideally he would invest £6 million to £8 million in dementia services headded there was currently no new money for the strategy.

Bernadine McCrory, Alzheimer’s Society’s Acting Director for Northern Ireland, was pleased that therewas a strategy in place but said that investing in dementia care now would save money in the long term.She says, ‘It’s brilliant that we have a strategy because the Society contributed hugely through theListening well project. But it is clear to everybody that if we invest funds in the early stages, so that peopleare getting the right information and able to make informed choices, then it will make huge savings at alater stage. The strategy talks about training for frontline staff. If we have appropriate training for staffwe are able to prevent crisis admissions to acute hospital settings, and if they are in acute settings we areable to reduce their stay.’

One of those for whoman effective strategy backed by investment is vitally important is young carer CarolHegarty. Carol, 26, looks after hermother whowas diagnosed with Alzheimer’s disease aged 64.

She says, ‘I think people need to understand that dementia isn’t a normal part of ageing; it’s a seriousmedicalcondition brought about by diseases like Alzheimer’s. Nobody should go through dementia alone, nomatter whatage they develop it. A dementia strategy that supports people likemymum to keep as well and independent aspossible and supportsme to care for her asmuch as I can, would be worth a lot.’

Tofindoutmoreabout theDementia strategy forNorthern Irelandvisitwww.dementiacentreni.org/node/1964

News and noticesAntipsychotics campaign targets GPs

Anonline campaign has been launched this month toencourage GPs to think twice about prescribing antipsychoticdrugs to people with dementia and reduce inappropriate use.The Dementia Action Alliance initiative takes place on

Doctors.net – a community that includesmore than 50,000 GPs –and is part of its ongoing call to action.Paul Burstow, Care ServicesMinister, spoke at November’s UK

Dementia Congress in Liverpool and told Living with dementia,‘I have been clear that prescribing unlicensed antipsychoticdrugs against the evidence, without clear clinical justification,can amount to a deprivation of liberty. If themeasures we haveintroduced do not reduce the use of these drugs, we will examine

a number of further options, including amending the law if necessary.’The call to action has already had an impact as someNHS trusts have begun auditing their use of

antipsychotic drugs. There has also been a great deal of interest in Alzheimer’s Society publicationson best practice in prescribing antipsychotic drugs.

Paul Burstow talks to the UKDementia Congress in November

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An Alzheimer’s Society stalwart has received a lifetimeachievement award formore than 20 years of serviceto people with dementia and their carers.

Clive Evers retired from the Society in Novemberandwas given the award at the 2ndNationalDementia Care Awards the samemonth for hisdedication to sharing information and understandingabout dementia.

He joined the Society in June 1988 as Informationand Training Officer and was also the Acting Directorfor the organisation in 1990. He went on to beDirector of Information and Education and Directorof Knowledge before becoming Head of ProfessionalLiaison in 2008.

His achievements while amember of the Societyinclude setting up the National Dementia Helpline,the Ann BrownMemorial Library (a precursor to theDementia Knowledge Centre) andmaking the Societythe first dementia organisation to work specificallywith younger people with dementia.

Clive says, ‘I have done somany things inmyworking life at the Society that I would never havedreamt of doing formerly – speaking on radio andtelevision about dementia, speaking at conferences,lobbyingMPs, talking to celebrities supporting thecause and helping to raise funds.’

JeremyHughes, Alzheimer’s Society’s ChiefExecutive, also paid tribute to Clive’s long service,saying ‘Thanks to Clive, over three decades the livesof tens of thousands of people with dementia havebeen improved.’

A lifetime dedicatedto dementia

In brief

The Society has produced a newpublicationscatalogue (code PL1) that includes our full rangeof factsheets, books and booklets designed tosupport peoplewith dementia and carers.A new factsheet, Exercise and physical activity

for peoplewith dementia (code 529), alsoexplainswhy keeping physically active isimportant and gives examples of suitableexercises for people at different stages ofdementia. See alzheimers.org.uk/factsheetsTo order a free copy of these newpublications,

please call Xcalibre on 01628 529240or email [email protected]

New publications catalogue

Alzheimer’s Disease International will be holdingits 27th annual conference in London next year.It will be themed Science, fact, fiction and takeplace from 7 to 10March. Health and social careprofessionals, researchers, people with dementiaand carers are encouraged to attend, with an earlybird discount available until 13 January. People withdementia and carers receive a reduced entry fee.To find outmore, visit alzheimers.org.uk/adi2012or call 08451800169.

Clive Evers (third from left) receives his lifetimeachievement award

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International Alzheimer’s conference

Ordering Christmas cards and giftsAlzheimer’s Trading would like to apologiseto customers who have encountered problemswhen ordering from the winter catalogue oronline shop. A new supplier is in place this yearto process and fulfil orders, and has providedassurances that these issues have now beenresolved. If you have any concerns, [email protected] or write toAlzheimer’s Trading Limited, Devon House,58 St Katharine’sWay, London E1W1LB.

Real lifeexperiences

Celebrities help raise awarenessof dementia by talking tojournalists about their real lifeexperiences. Musicians TimWheeler and Neil Hannon spokeout about how their lives havebeen affected by dementia at afundraising gig in NorthernIreland, headlined by theirbands Ash and The DivineComedy along with legendarygroup The Undertones.

Ahead of the gig, on WorldAlzheimer’s Day, Tim Wheelertalked about his father whopassed away earlier this year withAlzheimer’s disease. Neil Hannondescribed how his fathercontinues to live a meaningfuland enjoyable life withdementia. Both frontmenexplained how they wanted touse their music to help reducestigma and raise money for the

Society, while giving fans anopportunity to hear threeclassic albums played in full –1977 (Ash), Promenade(Divine Comedy) and TheUndertones (self titled).

The announcement of thebenefit attracted widespreadnews and music press coverage,including in The Irish Times andon XFM and BBC News online,and excited conversations onFacebook and Twitter. On theday of the event, during the runup to the fundraising gig,Northern Ireland broadcasterUTV interviewed Tim Wheeler.BBC Newsline then took theevening shift, filming during thebands’ performances. The nextmorning, a stylish image ofTim Wheeler and his guitaradorned the front page ofthe Belfast Telegraph.


November was another busymonth for the press team. Heather Bowkertalks about publicising a fundraising gig in Belfast by celebrities withtheir own experiences of dementia, as well as supporting a nationaladvertising campaign

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In the press

A news story that generated a great volume of press coverage was the Department of Health’sannouncement of a £2 million national advertising campaign on the early signs andsymptoms of dementia. We helped by putting regional press in touch with our media volunteersand provided comment from local and national spokespeople.This resulted in broadcast coverage across BBC Breakfast, BBC Radio Five Live, BBC World

Service and 50 local BBC radio stations. ITV Central also covered the story, and the Daily Expressdedicated a front page to it.

Belfast fundraising gig

Neil Hannon (top) andTimWheeler performing atthe Belfast fundraising gig

Department of Health campaign


Your questions

We’re struggling tocome up with asuitable Christmas

present for an aunt of ourswho has dementia. She usedto be very outgoing andvivacious, but is now morereserved and withdrawn atfamily gatherings.

It is common for someone withdementia to lose their confidenceand find social situationschallenging and intimidating.

This can be for numerousreasons, including an inabilityto cope with the pace ofconversations in a group settingor the effects of short-termmemory problems.

Around this time of the year,we often get calls on the helplineabout gift ideas. As a rule, theemphasis shouldn’t solely beon the fact that your aunt hasdementia. Draw upon anyhobbies or pastimes she hadbefore she developed somecognitive decline, and whichcould encourage her to interactmore and regain confidence.Finding appropriate activities orstimulus is also dependent onhow progressed her dementia is.

Ideas for giftsTailoring a suitable gift idea isoften more about ensuring that

it is neither too simplistic norchallenging, and so does notcompromise an individual’sconfidence in the process.As one of the biggest challengesfor someone with dementia isshort-term memory problems,associations from the past canbring comfort and pleasure.

The field of reminiscence iscommonly used for people withcognitive difficulties and thereare many products on themarket for varying budgets,ranging from remembranceboxes, nostalgic picture booksand reminiscence music tobygone memorabilia.

Sensory ideas can also bepopular, such as familiar andevocative fragrances, or tactileitems for restless hands thatneed to keep busy. Auditorystimuli like old time musictunes can also be evocative ofa particular time relevant tothat person.

Attending a local Alzheimer’sSociety service may also giveyou some ideas, as well as putyou in touch with people in thecommunity for support. To findyour nearest local service, visitalzheimers.org.uk/localinformation

Online resourcesOur online forum Talking Pointhas a wealth of advice and

information that has beensubmitted by carers withinvaluable experience andknowledge to share, seealzheimers.org.uk/talkingpoint

The Society also has anonline shop with books anddaily living aids atalzheimers.org.uk/onlineshopand there are numerouswebsites selling specialistresources. Winslow has areminiscence section(www.winslow-cat.com),AT Dementia offers assistivetechnology products(www.atdementia.org.uk) andActive Minds features activityproducts (www.active-minds.co.uk).

On the helpline, we often getenquiries regarding suitableclothing for people withdementia, and these itemscould make practical gifts.Again, there are a numberof suppliers, but they includeAssisted Living Clothing atwww.assistedlivingclothing.co.uk

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Advice

The festive period can raisemany questions about how to involve relativeswith dementia in celebrations and what to get them as a present.Our National Dementia Helpline Adviser Sandra Hillier looks at how toapproach choosing a suitable gift

Also see our Supporting aperson with dementiaduring visits, holidays andcelebrations factsheet (455) atalzheimers.org.uk/factsheetsor request a copy on01628 529240.


A difficult decision

For Adrian Harrhy drivingwas not just for work orconvenience but also for

pleasure. Adrian, the sole driverin his family, started drivingwhen he was 20. He wouldtake his wife and daughterfor camping holidays andalso drove all across the UKfor work.

When Adrian, now aged 61,was diagnosed with Alzheimer’sdisease, he continued to drive ashe had done before. Two yearsago he made the decision todrive less because of dementiaand restricted himself to drivingin and around his local area ofPontypool in Gwent.

Memory lapsesMore recently, however, hestarted to notice that he washaving memory lapses whiledriving and was sometimesunable to recollect his journey.

He says, ‘I was finding thatwhen I was driving I wasthinking to myself “Where amI?” I couldn’t remember if I hadgone through a certain placeand gradually this seemed toget more and more often.

‘I noticed this had beenhappening over a number ofmonths. I was more worriedabout other people than myselfas when I was driving I wasn’t

thinking about it, theconcentration simply wasn’tthere. My wife comes with memost places as well so I wasworried about her.’

Car park collisionIt was an incident in a car parkin nearby Cwmbran this Augustthat prompted the final decisionto give up driving for good,when he reversed out of aparking space and damagedanother car.

‘Without thinking, I droveout of the space. I didn’t lookwhere I was going or thinkabout whether there were anypeople around and went intothe side of another car. Thatwas the main instigator ofmy decision to stop driving.

‘As I drove home I thoughtabout the accident. I hadbeen careless. I was solelyto blame and it was anawakening for the future.The safety of my wife,other people and me wasuppermost in my mindduring that drive home.’

Deciding to stopWhen he arrived home afterthe accident he told his wifeCherry that he would stopdriving and she was fullysupportive of his decision.

She contacted the Driving andVehicle Licensing Agency(DVLA) and the insurancecompany, and within two weeksthe car had been sold.

Adrian and Cherry walking tothe bus stop near their homein Pontypool

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With more than 40 years of experience behind the wheel, driving was an importaafter being diagnosed with dementia he made the decision to hand in his licence


Cherry says, ‘Adrian hasn’tlooked back now. The mainthing was it was his own decision,it wasn’t a problem with hislicence or anything like that.’

Adrian has no regrets abouthis decision to give up driving,particularly as his lack ofconcentration due to dementiacould have led to a more seriousroad accident.

Getting aroundSince giving up Adrian andCherry get about by using thelocal public transport system,if they want to go shopping orvisit the Society’s local supportservices, for example. They alsoget lifts from friends as wellas their Alzheimer’s Societybefriender, who visits the coupleevery Monday.

Adrian says, ‘A good thingthat has come out of this isthat I have been getting moreexercise through walking. I alsohave a bus pass and we domost of what we need to byusing the bus. We find it quitecomfortable and easy.

‘At first we weredisappointed about notdriving. We thought it wouldbe hard to do because ofhaving to carry the shopping,but the bus services in our areaare very good and there’s a

bus stop about 100 yardsfrom our house. It doesn’treally affect us too much, infact we go out more nowthan we used to before.’

Driving afterdiagnosisLike Adrian, people withdementia can continue todrive after they receive adiagnosis – but, by law, theymust contact the DVLA andinform them of the diagnosis.

You will receive a questionnairein the mail and the DVLA willseek medical informationand make a decision aboutwhether you should still bedriving or not. Insurancecompanies must also beinformed of the diagnosis.

Although many people withdementia like Adrian chooseto give up driving because ofsafety concerns, others maybe reluctant.

If you need advice aboutthis decision, as a personwith dementia or as a carersee alzheimers.org.uk/drivingYou can also consult theSociety’s Driving anddementia factsheet (439) – seealzheimers.org.uk/factsheetsor order a copy from Xcalibreon 01628 529240.

Quick read

Adrian Harrhy was a driverfor 40 years and used hiscar for work and forholidaying as well. He wasdiagnosed with early onsetAlzheimer’s disease fouryears ago and continued todrive afterwards.

Hedecided to only do shortjourneys but recently startedhaving lapses ofmemory andconcentrationwhen hewasdriving andwas concernedfor his and others’ safety.

Hemade the final decision tostop driving after he had aminor collisionwith anothercar and decided it was unsafefor him to drive.

His wife Cherry contacted theDVLAand insurancecompanyand the carwas sold off.

Adrian hasn’t looked backsince his decision and nowrelies onwalking, publictransport and lifts fromotherdrivers for trips. He says hehas becomeused to thechange nowand finds itrelatively easy to get around.

To find outmore visitalzheimers.org.uk/driving

ant part of Adrian Harrhy’s life. But four yearsand tells Luke Bishop why


Fundraising

Actress and singer Lyn Paulhasmade a revealingcalendar to raisemoney

for Alzheimer’s Society and raiseawareness of dementia. Shespeaks about how hermother’sdementiamotivates herfundraising efforts.

Lyn, singer in the 70s popband The New Seekers andlong-running star of West Endmusical Blood Brothers, is helpingpeople affected by dementiathrough a new nude calendarthat features her and fellow starsfrom the show. For Lyn (bottomleft in grid on right), anything shecan do for people with dementiais worthwhile as she doesn’twant others to go through thesame experience she had withher mother Doreen Belcher,who died of Alzheimer’s diseaselast November.

Doreen, who Lyn says was herbest friend, started showing signsof dementia several years agowhen she became forgetful andstarted repeating herself. As thingsprogressed she also becamewithdrawn and paranoid. After hermumwas diagnosed she was

prescribed antipsychotic drugs,whichcausedherto losehermobility,and she also became incontinent.

Lyn, along with her sistersAmanda andNikki, helped her dadDennis, who she calls ‘an absolutehero’, care for hermumat homebut things went downhill when shewent to a care home for respite.From there she went to hospitalwith pneumonia and died sixmonths later. She says, ‘There are

no words to describe how bad itis and what the family has to gothrough. I can’t helpmymumnow but I will do anything thatI can to stop it happening tofuture generations becauseI don’t wantmy son goingthroughwhat I went through.’

In her dedication to the cause,she decided to bare all for thecalendar. She adds, ‘I have neverdone anything like this before. Itwas fantastic, I was the first oneto have the photograph taken andat first I thought “I can’t believeI said I would do this.” But it wasso liberating and all the other girlsfelt the same.’

The calendar, which featurescurrent and former Blood Brotherscastmembers, costs £9.99 – all ofwhich goes directly to Alzheimer’sSociety. The calendar is availablefrom alzheimers.org.uk/shop

Living with dementia is givingaway five calendars and a pairof Blood Brothers tickets. Senda postcard with your contactdetails andmarked ‘Brothers’ tothe Editor at the address on theback pageby14 January to enter.

Alzheimer’s Society marked the end of itspartnership with Bupa for the Great Runseries at the Great South Run in October.Comedian Hugh Dennis (left) and Daybreak’sDr Hilary Jones brought the partnership toa close. Since 2009, 27,000 people haverun in support of the Society, raising£3.5 million for people affected by dementia.

Making its mark

Baring all for dementia


Add your voice

Wehave campaignedfor many years to endthe ‘dementia tax’.

The current system of socialcare funding is a postcodelottery for those who rely on itfor their care, with wildvariations in quality and cost.

In the August/September issuewe outlined some of the proposalsput forward by the DilnotCommission, an independentreview that looked into the futurefunding of adult social care. Weare now campaigning hard toensure these proposals are usedas a starting point for reform.

The government is due topublish a Social Care Bill in thespring, and we have a once in ageneration opportunity to makethe way that we pay for carefairer for people with dementia.

What action has theSociety taken so far?In November, Jeremy Hugheswrote to all MPs to highlightthe vital need to for all politicalparties to agree a consensuson the future of funding. Alongwith his letter, he sent a videocase study of Angela Smith,who cared for her husband andher mother through theirjourneys with dementia. Youcan watch Angela’s film atalzheimers.org.uk/chargingforcare

Our campaigners have also beenworking hard, writing to eachmain party’s healthspokesperson as well as to localMPs to urge the cross partyconsensus that will be so essential.

While this is an issue thataffects large numbers of peoplewith dementia, it also has agreat impact on others. We havebeen working with the Careand Support Alliance – a groupof more than 50 charities– and making the argumenttogether. By speaking withone voice, we can have far moreimpact than we would haveas individual organisations.

How can I help?You can add your voice to thecampaign and increase the

pressure on the government.Included in this month’smagazine is a postcard withspace for your thoughts on whythe system needs to change.

We need everyone tocomplete a postcard and sendit back to us so that we cantake them to the Prime Minister.Feel free to post this in anenvelope if you prefer. Themore people who send us theircomments, the stronger ourcase for change. What areyour experiences of the currentsystem? How has it affectedyou, your family and friends?Your experiences can helpsecure the best deal possiblefor people with dementia.

The Society is at a crucial point in its campaign tomake the care system fairer.Chris Kirby writes about howwe need your help to keep this at the top of thepolitical agenda

Campaigning

What are ournext steps?

We will continue to workwith the Care and SupportAlliance to plan a nationallobby day at Westminsterin early March to influenceMPs before the publicationof the Social Care Bill.If you are interested in

taking part in this day ofaction, please get in touchon 020 7423 5128.


Remembering lost loved on

For Bruce Bovill, thegrieving started manyyears before the death of

his wife. The terrible impactthat mixed Alzheimer’s andvascular dementia had on Jan,who developed the disease inher late 40s, led to an earlysense of bereavement.

He says, ‘I think thatgrieving can be a little bitdifferent for dementia comparedwith some other diseasesbecause it takes away theperson before their bodies goaway, and that is what makesfor a long grieving process.

‘Everybody deals differentlywith loss and grief, and I didmost of my grieving while caringalone for Jan while she was stillliving at home with me, seeingsomeone so young and vibrantfalling apart.’

Janmoved to a care home,where she spent the last nine yearsof her life, after her conditiondeteriorated suddenly and sheneeded round-the-clock, total care.

Constant grievingHe says that grieving wasconstant throughout Jan’s25-year dementia journey, buthe learnt to cope with it byalways seeking to ensure thebest possible care for Jan, and inenlisting the support of others.

Maintaining the emotionalcloseness of a husband of 42years, he also made a consciousdecision to emotionally detachhimself when it came todetermining Jan’s care needs –deciding what was best for her,rather than what made him feelcomfortable when seeing her.

One of the main sources ofsupport for Bruce was TalkingPoint. Being a member andmoderator of the online forumallowed him both to talk abouthis own problems, and help

others in a similar position. Healso relied on the support ofclose friends, family membersand work colleagues.

‘I was fortunate to beinvolved with Talking Point, asI was seeing other people goingthrough the same process withhaving partners or familymembers with dementia.

‘Everyone gets great supportfrom the forum and also itteaches you there is no singleright way to do things, only theway that works for you as an

Bruce Bovill and his wife Jan

The grieving process for family members and loved ones of people with dementiaformer carer Bruce Bovill about how he handled bereavement and how he focuses


es

individual couple or family.Talking Point gives you a rangeof options about how to dealwith things.’

Sense of closureIt is only with his wife’s deathaged 69, in August of last year,that Bruce has felt a sense ofclosure about her battle withdementia. Sadness over herdeath has been tempered byrelief that she has finally beenreleased from what he callsher torture. He also findscomfort in the fact that heknows he did everything hepossibly could for Jan.

He adds, ‘Obviously therewas grief and a huge senseof loss, but it was a differentsort of grief from somebodyyou know and love dyingsuddenly, with things leftunsaid. On the afternoon ofthe day that she died, I saideverything I felt I needed tosay to her. It was a Sundayand the vicar that attendedthe care home came andblessed us.

‘For me, Jan’s funeral had tobe an uplifting occasion – notsad – and a celebration of herlife. I was surrounded by thosewho had supported us boththroughout, and that waswonderful and essential.’

No right or wrongBruce believes there is no rightor wrong way of grieving, butthat focusing on positivememories of your loved onemakes things easier. He admitshe still has moments of grief,particularly if he sees a pictureof Jan in the later stages ofher dementia, as it bringsback the memories of howbad it was for her.

‘I feel that Jan is still allaround me. If I’m drivingI will go down a road thatwe drove along and I thinkto myself “there she is”, or ifI hear a bit of music or havesome food served up at arestaurant that reminds meof her I think “there she is”.’

Talking Point has adedicated sub-forum, calledAfter dementia – dealingwith loss, for people whoare dealing with emotionaland practical issues followingthe death of a loved one.Visit the forum onalzheimers.org.uk/talkingpoint

If you are in need ofemotional and practicalsupport you can also call ourNational Dementia Helplineon 0845 3000 336 in Englandand Wales or 028 9066 4100in Northern Ireland.

Quick read

Bruce Bovill started togrieve for his wife Jan,who had mixed dementia,while she was still alivebecause of the waydementia affected her.

He coped with grief bytalking to other peoplein similar positionsthrough Talking Point andby giving them adviceon their problems.

Friends, family membersand work colleagues alsohelped Bruce cope with thestrain of caring for Jan.

Brucefelt somereliefwhenJandied because she was freefrom her 25-year strugglewith dementia. He comfortshimself by knowing that hedid everything he possiblycould for her care.

Although he still feels griefover her death, he tries toremember her as positivelyas possible. He made sureher funeral was acelebration of her life.

If you need practical oremotional support, visitalzheimers.org.uk/talkingpoint

Caring

can be long and complex. Luke Bishop speaks toon the positive memories of his wife


Better at home

Sue Sinclair has managedHyndburn HomewiseSociety, a not-for-profit

home improvement agency inLancashire, for 24 years. Ithelps people in the borough ofHyndburn to improve, repairand maintain their own homesso they can live independentlyas long as they want to.

The agency offers practicalhelp and advice with homeimprovements, minor andmajor repairs, adaptationsand general maintenance. Italso offers a free handypersonservice to people aged over60, free homesafe checks andadvice on energy efficiency.It can also recommend reliablelocal tradesmen.

IndependenceHomewise advises on creating afamiliar, safe and secure homeenvironment, which Sue believescan help to maintainindependence and improvequality of life.

She says, ‘We like to makesure the home environment ispredictable and makes sense topeople, and that there are nosurprises that could disorientatethem. We have to understandwhere that person is in relation totheir illness at the time and buildthe environment around them,

possibly simulating anenvironment that’s familiar intheir long-term memory so thatthey won’t have to ask, “Wheream I?” or “Where am I going?”’

Sue adds, ‘I recently hearda story about a note that hadbeen left in front of a lady withdementia in a care home. Itread, “Please keep quiet anddon’t bang the table”. That isabsolutely appalling.If you can make the environmentsafe, secure and familiar sopeople feel happier then theymay not become distressed oragitated and won’t feel likehaving to bang the table.’

Sue worries that people areprescribed drugs because they

are perceived as disruptive.‘Thoughtful measures such ascreating a safe environment canhave a huge impact on aperson’s well-being and reducethe need for medication.’

Here, Sue shares some tips onsimple things that people can doto support a person withdementia in their own home.

Colours. A different coloured lightswitch against a plain wall canmake it easier to identify.. Plain, continuous colour onthe floor can aid mobility.. A change in style or colourmay be perceived as a barrierand cause confusion.. Patterned carpets can alsocause distress as patterns canbe seen as holes.. Coloured doors can helppeople recognise a dooragainst a wall. Visual signs ondoors may also help peopleunderstand what’s behindthem, such as a picture of atoilet on the bathroom door.

Kitchen. Glass cupboard doors can helppeople to see what’s insideand prompt them to make adrink, for example.. Alternatively, cupboards canbe replaced with shelves so

From finding reputable tradesmen to helping to create a safe and secure environmagencies can help people with dementia to live in their own homes for longer

Agencies offer practical help

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ent, Rachael Doeg finds out how home improvement

cups and tins are easy to see.. Large cupboard handles canencourage people to openthem more easily.. Simplify the environment tomake daily tasks easier, suchas putting names on tins fortea, coffee and sugar.. Lists can help prompt memoryabout day-to-day tasks andincrease independence.

Living areas. Mirrors can cause problems aspeople may not recognisetheir own reflection and sobecome distressed,particularly at night.. Consider putting names onpictures and family photos tohelp recall.. Decorating the home in astyle similar to a house theperson used to live in mayhelp them to feel more secure.. Charity shops often havesecond hand furniture or cansource it cheaply.. Put out personal things andobjects from the past that theperson can relate to. Theremay be things in the attic orin storage.

Bathroom. Separate taps for hot and coldwater rather than modernmixer taps can help people to

distinguish them more easily.. A different coloured toiletseat can help people to usethe toilet.

Sue says, ‘It’s about looking atthe little things that can bedone to help people feel morecomfortable, safe and secure intheir home environment. I knowa family whose mother came tolive with them and she’d get upfrom her chair and go in thewrong direction to the toilet.They realised she was imaginingbeing in the semi-detachedhouse she used to live in, somoved the furniture around abit and it helped.’

Quick read

Home improvementagencies offer a range ofservices that can helppeople with dementia tolive longer at home in safe,secure environments.

Sue Sinclair runs an agencyin Hyndburn, Lancashire thatgives local people practicalhelp and advice with homeimprovements, repairs,adaptations andmaintenance, includingsome free services.

Sue believes that creating afamiliar, safe and securehome environment can helpto preserve independenceand improve quality of life.

There aremanyways inwhich home environmentscan bemade less confusingthrough the careful use ofcolours, signs and labels.

Decorating in a style familiarto a time that a personremembersmost clearly canhelp them to feelmore secure.

To find a home improvementagency contact Foundations,Care & Repair Cymru or FoldHousing Association.

For the location of yournearest agency in England,contact Foundations on0845 864 5210 or seewww.foundations.uk.com

If you are inWales, you cancontact Care & Repair Cymruon 0300 111 3333 or visitwww.careandrepair.org.uk

In Northern Ireland, contactFold Housing Associationon 028 9042 8314 or seewww.foldgroup.co.uk

Find a local agency


Winning inspiration

The invaluable work of 10volunteers was recognisedat Buckingham Palace in

November, when the WilliamBrooks Awards 2011 werepresented by the Society’s RoyalPatron HRH Princess Alexandraand Sir Michael Parkinson.

Sir Michael said, ‘Theircommitment to improving thelives of people livingwith dementia,and their carers, is inspirational.Alzheimer’s Society relies onvolunteers to continue its vitalwork, and as the number of peoplewith dementia rises they will needvolunteer supportmore than ever.’

Getting the SouthWest singingSinging for the Brain groups arebecoming awell used aspect ofSociety services inmany places, butthework of Susan Lawrence inPlymouth ismaking sure thatmorepeople in the SouthWest than ever

will have one nearby. Plymouth’sused to be the only Singing for theBrain group inDevon andCornwall,but People’sMillions funding hasallowedmanymoretobeestablishedin the last year. Susan has beenvital in recruiting volunteers andgroup leaders, researching eachnewarea, contacting local groupsand finding venues.

She is a passionate advocate ofSinging for the Brain, emphasisingthe benefits for people withdementia and their carers, fromsitting and listening at first tomoving ormouthing along tosongs, and eventually joining in.‘You can really see their progressover the weeks. It is a joy to watchand also important for the carers.’

She adds, ‘We have such fun,we sing some songs and theymaygowrongbuteverybody just laughs.’Susan says that it was a ‘fantasticsurprise’ to discover she had beennominated for aWilliamBrooks

Awardandamazing toattend theceremony. ‘Wehad lunchat theRoyal SocietywithSirMichaelParkinson,whowas lovely –exactlyas you seehimon television–anditwasnice tomeet theotherawardwinners.Wewere treatedlikeVIPsall day.’

ShesaysthatgoingtoBuckinghamPalaceafterwardshad ‘a real “wow”sensation’ to it andHRHPrincessAlexandrawasadelight tomeet.‘She camearoundand talked toeveryone, not just thewinners.’

A man in a millionAlan Chandler from Brentwood,Essex has volunteered for nineyears as aminibus driver, takingyounger people with dementia,staff and volunteers on outingseach week, including to parksand the seaside.

He was also a treasurer forfour years and says, ‘I took abookkeeping course to assist

A group of volunteers enjoyed a VIP day in London to collect their William Brooks


Awards, by Danny Ratnaike

my knowledge and became anassociatemember of the Instituteof Certified Bookkeepers.I thoroughly enjoyed this joband liked working with figures.’Alan is described in his awardcitationas ‘aman in amillion’whois relied ongreatly by the Society’sRedbridge younger people’s group.

On finding out about hisnomination Alan says, ‘I wasflabbergasted and felt veryhonoured, as I am sure there aremany other deserving volunteersdoingmore and raisingmoremoney than I.’

‘The day in question wassomething else,’ he recalls. ‘Afterthe presentations, HRH PrincessAlexandra circulated and chattedto everybody for an hour. It was afantastic afternoon andmywifeenjoyed the day immensely,especially chatting with HRHabout Downton Abbey.’

Alan says that the volunteersand staff who help carers andclients tomanage their daily livesdo themost important part of theSociety’s work. ‘I am pleased tobe able to put something backinto society by helping out at thegroup for as long as I can.’

Awe inspiring peopleJoanne Duffy in Barrowford,Lancashire was also surprisedto be nominated, despite

being an active volunteer forthree years. Having specialised indementia in her psychologydegree she has been usingher exceptional skills in supportand befriending work, in additionto fundraising.

Joanne says, ‘The ceremonywas wonderful, a once in alifetime experience.’ Now aDementia SupportWorker forCalderdale, she says she hopes tocontinue to provide the supportand advice that people need.

Rachael Bayley, Director ofVolunteering Development,described all of the winners as‘an awe inspiring group ofpeople’. She added, ‘They gothe extramile andmake a hugedifference.We couldn’t do allthat we dowithout them.’

If interested in volunteeringsee alzheimers.org.uk/volunteers

Quick read

TheWilliam Brooks Awards2011 were presented to10 Society volunteers ata ceremony in Londonin November for theirinvaluable work for peopleaffected by dementia.

The awards were presentedby HRH Princess Alexandraand Sir Michael Parkinsonat Buckingham Palacefollowing a lunch at theRoyal Society.

One winner was SusanLawrence, who has helpedto set up a string of newSinging for the Brain groupsin Devon and Cornwall. Shesaid it had been a ‘fantasticsurprise’ to be nominated.

Alan Chandler won aftervolunteering for nine yearsin Essex, driving aminibusand acting as treasurer. Hewas cited as being ‘amanin amillion’.

The other award winnerswere Joanne Duffy,Angela Clayton-Turner,Eileen Harrington,Pat Bentley, AudreyWelch,Judy Roberts, Wendy Oldfieldand Lynne Ramsay.

Pictured from left, back row: SocietyChief Executive JeremyHughes,Susan Lawrence, Alan Chandler,Angela Clayton-Turner fromBeckenhamin Kent, SirMichael Parkinson,HRHPrincessAlexandra, SocietyChairmanAlastair Balls, EileenHarringtonfromScawthorpe, Doncaster,JoanneDuffy, Society Vice-ChairmanEileenWinston; front row: Pat BentleyfromCheddleton, Staffordshire, AudreyWelch fromNorwich, Judy Roberts fromUpton by Chester, Cheshire,WendyOldfield from Linthwaite, Huddersfieldand LynneRamsay fromChislehurst, Kent.


Local news

People with dementia and carers have contributed to a new resourcepack that gives good practice guidance to organisations on how toengage and consult with dementia patients.

The Involving people living with dementia pack is aimed at healthand social care professionals and features resource cards to helpinvolve people with dementia. It includes 18 cards that give specificinformation, advice and tips on communicating with people with

dementia, involving them in events andmaking sure their views are taken into account when developing services.NormanMcNamara, 53, is a younger person with dementia from Torquay andwas part of the reference

group involved in deciding the content. He says, ‘When you are diagnosed with dementia, nomatter howmuch support you have, nomatter howmuch informationmay be available, the feeling of helplessness andworthlessness is overwhelming.

‘These cards will help to give people with dementia a voice. It will give people with dementia their selfworth back and the confidence to carry on doing things they used to do.’

A launch event for the resource pack was held in Bristol during October andwas attended by Alzheimer’sSociety Chief Executive JeremyHughes as well as representatives from organisations such as NHS SouthWest.

Formore information and to get a copy of the resource pack visit www.southwestdementiapartnership.org.uk

Reaching out to isolated areasNew services are being set up to reach out to isolated older peoplewith dementia thanks to funding from the Big Lottery Fund.

In Northern Ireland, Alzheimer’s Society was awarded £500,000to set up six Dementia Cafés to provide ameeting place for peoplewith dementia and their carers to access information and support.

BernadineMcCrory, Alzheimer’s Society’s Acting Director inNorthern Ireland, says, ‘Dementia Cafés will be based in localcommunity venues.We know from research involving people withdementia, which we undertook in Northern Ireland in 2009(Listening well report), that social isolation can be a big issue forpeople with a diagnosis.’ She hoped the new cafés would support

people after diagnosis and help them feel less isolated.Bryan Clay is from Lisburn and cares for his wife Sylvia. He says, ‘These new cafés are a fantastic idea.

They will make a huge difference to somany people’s lives.’Three new offices, offering outreach and support services such as Dementia Cafés, have also opened in

Northumberland in order to reach out to isolated, rural communities. The offices in Berwick-upon-Tweed, Blythand Hexhamwere opened earlier this year, thanks once again to Big Lottery Funding so thatmore people withdementia in the large but sparsely populated county have access to services.

Stephen Errington, LocalityManager for the North of Tyne area, says, ‘These offices are in really goodcentral locations that people can visit but we are also creating links with the communities on a wider scale,with drop-ins at alternative locations.’

Involvement resource pack

NormanMcNamara at the launch ofthe resource pack

Bryan and Sylvia Clay

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An innovative drop-in centreaimed at people with early onsetdementia opened in SouthWalesthis month.

Ty Hapus,Welsh for ‘happyhouse’, at Barry in the Vale ofGlamorgan, had its official launchon 12December at an eventattended by health and socialcare professionals.

Ellin Jones, Support ServicesManager for Alzheimer’s Societyin Cardiff and the Vale, is nowmanaging the centre whichincludes a therapy lounge. Shesays, ‘It is designed for thepurpose of early onset dementia.It is a daytime activity centre thatwill have a lounge space for sixguests as well as a café which willbe open to people of any age.

The centre was inspired byJustine Pickering, who raisedmoney to build the centrebecause of hermother Annie’searly onset dementia.

Country music megastar Glen Campbell lent his support to anawareness campaign about the early symptoms of dementia whenhe met an Alzheimer’s Society dementia support worker backstageafter one of his gigs.

Steve Haigh, whoworks in the Somerset locality, met Glen backstageafter his concert at Plymouth Pavilions in November.

Steve says, ‘He expressed his interest in the work of Alzheimer’sSociety and hoped our Somerset campaign would be successful inhelping more people come forward for an early diagnosis ofthe condition.’

Glen, 75, who has sold more than 45 million albums, hasAlzheimer’s disease and the concert was part of his Goodbye tourof the UK. Steve adds, ‘As someone who is living with the conditionhimself, he completely understood that just because you have an earlydiagnosis of the condition that does not mean you can’t get on withenjoying your life and live it to the full. Glen is an inspiration to us all.’

Some 10,000 campaign leaflets are currently circulating inSomerset encouraging early diagnosis. To find out more informationvisit the website of the Somerset Dementia Partnership atwww.dementiasomerset.org.uk

Music legendsupports campaign

Glen Campbell shows his support for Steve Haigh and the earlydiagnosis campaign in Somerset

‘Happyhouse’for early onsetdementia

Justine Pickeringwith hermother Annie

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Asmall study at theUniversities of Oxfordand Oslo caused

excitement in nationalnewspapers this autumn.Headlines announced thatvitamin B supplementscould be ‘the pill to beatAlzheimer’s’. These declarationswere of course wrapping fishand chips the next day, but thepossible role of B vitamins indementia is a recurring focus inresearch, so where have we gotto in understanding linksbetween the two?

Homocysteine levelsWe all have an amino acid calledhomocysteine in our blood. Ifour levels of homocysteine riseso does the risk of developingAlzheimer’s, vascular dementiaand other forms of dementia (aswell as stroke and heart disease).

Taking B vitamins can lowerlevels of homocysteine, but thequestion is can they also reducethe likelihood of developingdementia or slow its progress?So far trials of vitamin Bsupplements for people withearly stage dementia havebeen unsuccessful.

Getting in earlyThe Oxford and Oslo VITACOGstudy investigated the effect

of regular, very high doses ofB vitamins over two years onpeople over 70 years old withmild cognitive impairment(when cognitive problems do nothave a significant impact ontheir daily lives).

People taking the B vitaminsmade improvements in somemental function tests comparedwith those taking a placebo.Results published last year fromthe same study also showedthat those taking vitamin Bexperienced 30 per cent lessbrain shrinkage.

‘Our thinking was toconcentrate on early cognitiveimpairment,’ explainsDr Celeste de Jager of OxfordUniversity who led the trial.She says that at this earlierstage ‘people have got enoughbrain tissue to preserve.’

Further analysis found thatpeople with the highesthomocysteine levels at the startof the trial did better overall onthe cognitive tests. Brain scansshowed they also had a higheraverage reduction in brainshrinkage of 50 per cent. So theB vitamins provided mostbenefit for people with thehighest homocysteine levels.

New trialIt is these links withhomocysteine levels thatmake these results interesting.However it’s important torealise that brain shrinkageis a general indicator ratherthan a definite sign ofcognitive decline.

Dr de Jager and colleaguesare now planning a larger trialthat will only involve peoplewith high levels of homocysteineand will focus on changes intheir cognitive skills, such asmemory, thinking and reasoning.

We know that half of allpeople with mild cognitiveimpairment will developdementia within five years.The emphasis of the new trialwill be on establishing whetherB vitamins could play a role inpreventing this.

‘The aim is to see if we candelay dementia,’ says Dr de

New research raises questions about the links between B vitamins and dementia

B is for… prevention?


Research Quick read

but there is much still to learn, by Caroline Bradley

Jager. ‘B vitamins are cheapand well tolerated, with fewside effects. This is about apossible way to maintain brainhealth for longer.’

Further understandingAs researchers seek evidenceabout whether B vitaminscan delay or preventdementia, there is also aneed to understand howhigh homocysteine levelscontribute to the developmentof dementia.

Alzheimer’s Society isfunding Dr Gayle Middleton’sresearch at the University ofSt Andrews. ‘I’m looking atthings at an early stage,at the impact that highhomocysteine levels have onmechanisms within our nervecells and what is changing inpeople’s body chemistry thatputs them on the path toAlzheimer’s disease.’

This work involves growingnerve cells in the laboratoryand using them to screen largenumbers of proteins todetermine which ones areinfluenced by homocysteine.

Best adviceHomocysteine levels tend toincrease with age, possiblybecause we are less able to

absorb B vitamins from ourdiet as we get older. However,this doesn’t mean we shouldnecessarily take supplementsas insurance against this.

Knowing that an absenceof something causes harmdoes not mean that an excessof it will prevent or undo thatharm. More importantly,it is not a good idea to takeregular B vitamin supplementswithout advice from yourdoctor. There is a risk ofre-activating cancerous cellswith folic acid (also knownas vitamin B9) and takingover 1mg of folic acid a daycan mask signs of vitaminB12 deficiency.

The best advice for keepinghomocysteine levels low isto get plenty of exercise,eat healthily, stop smokingand don’t drink overrecommended limits.

This fits well with generaladvice for reducing therisk of dementia, whichincludes having your bloodpressure and cholesterol levelschecked regularly.

B vitamins continue tohit the headlines as apossible treatment toprevent dementia, buttaking high doses withoutmedical advice can alsocause problems.

If our levels of an aminoacid called homocysteinego up so do our chancesof developing dementia.Taking B vitamins can reducelevels of homocysteine, butresearchers have not foundclear evidence that takingthese supplements can helppeople with dementia.

Researchers are planningto test the effects ofB vitamins on people withhigh homocysteine levels.They hope to find outwhether supplements candelay dementia.

It is not a good idea totake regular B vitaminsupplements without advicefrom your doctor. The bestadvice for reducing the riskof dementia is to do plentyof exercise, eat healthilyand get blood pressureand cholesterol levelschecked regularly.

Research reference: de Jager CA et al(2011). Cognitive and clinical outcomesof homocysteine-lowering B-vitamintreatment inmild cognitive impairment:a randomized controlled trial. Int JGeriatr Psychiatry doi: 10.1002/gps.2758.


LettersTell us your views

Linking patients and GPsI wondered if your readerswould be interested to knowabout patient participationgroups (PPGs) being set up inGP practices.

PPGs are groups of patientswhowork with the practice to actas a route of communicationbetween the practice and itspatients. The aim is to help assessperformance, provide feedback tothe practice, develop services forthe patients, provide a patientperspective, influence practicedevelopments and support thepractice in the NHS and the widercommunity so that patients canhave a voice on futuredevelopments. Meetings are heldonce amonth.

I have found this to be a goodway of helping the practice tounderstand how they areperceived by the patient, and waysto help improve services that thepatients feel are important anduseful to them.

More information can be foundat www.napp.org.uk or ask at yourlocal GP practice.Mrs Davison, Norfolk

Since April 2011, GP practices inEngland have been required toset up ‘patient reference groups’such as PPGs. Similar initiativesare being encouraged inWalesand Northern Ireland.

Early onset isn’t easyKateMoffatt’s letter (Novemberissue) about the age of personsfeatured in your articles struck achord withme. It was not justabout the younger age peoplebeing featured but the fact thatall these people are in very earlyonset and capable of living arelatively normal life. Not allyounger people are so lucky.

Mywifewasdiagnosedwithearlyonset Alzheimer’s in 2008 at theage of 54. Three years on she isstruggling to communicate, needshelp with washing and dressing,

cannot perform any householdtasks and is totally dependentonme to organise her life.

Therefore she cannot workbut the only benefit for whichshe qualifies is Disability LivingAllowance, but not the fullrate. There is no recognition of thissituation in the benefit system.

How is she expected to live on£267 paid every four weeks?Fortunately, although 10 yearsolder than her so not qualifyingfor Carers’ Allowance, I do havea company pension and OAPwhich are sufficient to support us.

Onemore comment for you.When the TV news wascommenting on the new initiative,as always, they showed imagesof older people – in this casegnarled hands – so thebroadcasters certainly have notpicked up that dementia alsoaffects younger people.

I must finish by saying that thehelp and support we have receivedto deal with this massive problem

I have just read the letter Garden of tranquillity from Sheila Willis in the October magazine, and had towrite to say that’s exactly how I feel. The betrayal and guilt of putting my husband in a home has beenvery much helped by doing the garden as he has done over the last 50 years.

I can’t do as much but I have grown a lot of vegetables and fruit this year. When I’m in the garden,he seems to be telling me what to do. I too am 76 so I have to do short periods at a time, but it is awonderful form of therapy.

Thank you so much for your magazine. It also helped me with what to ask when looking for a carehome, so he is now settling into a new, but very friendly environment. Thank you for all the help you give.

Letter of themonth

Sybil Frampton, East SussexCongratulations to our Letter of the month writer, who will receive a bouquet of flowers

Green therapy

has been brilliant and allowsmeto sit here ‘having a whinge’.Keep up the goodwork.Leslie Hill, Hampshire

Harder timesI agree with Professor MJ Owen(Showing later stages, Novemberissue) regarding the lack ofpublicity about the later andterminal stages of this terribledisease. My husband Bernard wasdiagnosed with Alzheimer’s in1999 at the age of 54.

I managed four years with verylittle support, constant brick walls,a battle to get appropriatemedication and so much stressthat my own health began tosuffer. Bernard was veryaggressive and often frightening,so when there was theopportunity for him to take twoweeks respite I grabbed it as uptill then my only respite wasgoing out to work leaving himhome alone. When I picked himup after the two weeks he wasbarely recognisable, they haddrugged him up so much and inaddition to this he had becomedoubly incontinent.

I managed two weeks with himat home until I had to beg for himto be taken into hospital hopingthey would sort his medication

out. He never came home. Afterseven years in care he passedaway last year.

It is good that you point outthe good things and look at thepositive aspects of living with thiscruel disease and it does seemthat services have improved in thelast 10 years. However, I havebeen left with a great deal of guiltbecause I couldn’t look after himfor longer at home. Living withdementia only serves toexacerbate that guilt (to the pointI feel it would be wiser for me tostop reading it). Your photos andarticles often depict what look likeperfectly normal sufferers of thedisease, which I often struggle torelate to, rather than being honestand showing readers howit really is, or is that too negative?Elizabeth Cragg, Oldham

Our aim is to represent allaspects of living with dementiaand to support readers bysharing useful informationand experiences of peopleaffected by dementia.We are greatly appreciative

of all comments received by ourreaders and use this feedbackto make decisions aroundhow we best meet the needs ofour broad range of readers.

I refer to the letter Music is a gift inthe November issue. My husbandFrank was a church organist forover 60 years and when diagnosedwith vascular dementia in August2006 he determined to continue aslongashecould.Thishedidwithhelp.He played his last service inNovember 2010 andwas admittedto a care home inMarch 2011.

Frank died in August 2011 andthe night before he died the nursetoldme that she went into hisroom in the dark to check on himand all she could see was his handout of the covers conducting themusic on his radio which wasconstantly playing classical music.

I feel so grateful that he neverlost that love.JeanWalton, Stockport


Wewelcome your lettersPlease write toMagazine Editor, Alzheimer’s Society, Devon House, 58 St Katharine’sWay,London E1W1LB or email [email protected] may be edited.We regret we are unable to forward letters on to correspondents without theirprior consent. Letters for the February issue to arrive by16 January. The views expressed in thismagazineare personal and not necessarily those of Alzheimer’s Society.

November issue

Themusic plays on

Changingyour detailsIf you need to update youraddress details or inform us ofany other changes, pleasecontact membership enquirieson 0845 306 0868 or [email protected]

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

Alzheimer’s Society NationalDementia HelplineEngland andWales 0845 3000 336Open 8.30am–6.30pmMonday to FridayNorthern Ireland028 9066 4100Open 9.30am–4.30pmMonday to Friday

Useful contactsAlzheimer’s SocietyDevon House58 St Katharine’s WayLondon E1W 1LBTelephone: 020 7423 3500

Changing your detailsIf you need to update your addressdetails or inform us of any otherchanges, please contact membershipenquiries on 0845 306 0868 or [email protected]

Facebook and TwitterIf you’re a member of Facebook it’s really easy to become a fan ofAlzheimer’s Society. You can chat to fellow supporters and receive regularupdates on our activities. Just go to facebook.com/alzheimerssocietyukand join the 14,000 people already connected to us.

Or, if you’re on Twitter, follow us @alzheimerssoc and get more regular updates.

Alzheimer’s Society website alzheimers.org.uk Access all our factsheets alzheimers.org.uk/factsheets

Alzheimer’s Society is the UK’s leading support and research charity for people with dementia,their families and carers. We provide information and support to people with any form of dementiaand their carers through our publications, National Dementia Helpline, website andmore than2,000 local services. We campaign for better quality of life for people with dementia and greaterunderstanding of the condition.We also fund an innovative programme ofmedical and socialresearch into the cause, cure and prevention of dementia and the care people receive.

Helpline Christmas opening hours for England,Wales and Northern IrelandNormal opening hours until Friday 23 DecemberMonday 26 and Tuesday 27 December closedWednesday 28 to Friday 30 December opening hours 9am–5pmMonday 2 January closed