DECEMBER 2011/JANUARY 2012 £2 (free to members)
Livingwithdementia The magazine of Alzheimer’s Society
Taking the passenger seat Your questions – Ideas for festive gifts (p7) Home improvement agencies (p14) Volunteering awards (p16)
It’s often visitors at festive gatherings, such as at Christmas, who can see most clearly the changes in someone with dementia. That was certainly my experience with my own father, who I only saw around once a year as he was living in Canada. What family members also see are the emotional and physical demands on the principal carer. It’s a time when we can all play
our part to relieve some of their daily load and enjoy memories together of past family occasions. These get-togethers are also where the early development of dementia may be recognised. Our recent survey showed that 60 per cent of dementia goes undiagnosed. We have partnered with the Department of Health in England on an advertising campaign encouraging anyone worried about their memory to see the GP. The Society ensures that our helpline, website and publications are all on hand, since too often the questions you want to ask come to mind after the clinic visit. We all have a part to play. This year I have been delighted to see an increase in volunteer numbers. A volunteer can spend time, share experiences and access the wider resources of the Society, both our staff and information. There are also more
dementia advisers providing a professional point of contact from the time of diagnosis onwards. We need to ensure that existing posts can continue and more are added. Many members and supporters have attended our conferences in Wales, Northern Ireland and in the English regions over the past few months – far more than had been to the national conference in recent years. It has been uplifting to meet so many people and hear of their determination to make a difference for people affected by dementia. Thank you for all you have done in the past year. I look forward to seeing many more of you in 2012 as we take forward our mission together to defeat dementia. Jeremy Hughes, Chief Executive
Contributors Caroline Bradley
Freelance science writer Caroline Bradley has been keeping readers informed about dementia research for the last eight years. Originally a radio journalist, Caroline has worked for several national charities. She also freelances for community organisations in Yorkshire.
Chris has been working as a Campaigns Officer since joining the Society in 2010. He previously worked as a parliamentary researcher and election agent. Chris has a degree in politics and worked on the Obama election campaign in 2008.
Rachael is the former Editor of Living with dementia and now writes on a freelance basis. She continues to have an interest in dementia and in this issue writes about how the environment can play a part in maintaining a person’s independence and well-being.
December 2011/January 2012
I’m really pleased to welcome readers to this issue of the magazine, which is not only my first as Editor but which also sees in a key year for the Society. I have an awful lot to learn about dementia and the work of Alzheimer’s Society volunteers, staff and supporters – thank you to Sarah and everyone at Islington’s Singing for the Brain group for helping to get this process going! I am keen to hear about the things that are most important to you, so do let me know via email: firstname.lastname@example.org It is clear from the recent members’ survey that this magazine holds a special place in its readers’ lives, and it is very much your publication. While we have ideas about how we might develop it, I am committed to making sure that we continue to provide a place where members can find out what they need to know and share their stories with others. It is great to be on board, and I’m looking forward to hearing from you, learning more about living with dementia and doing what we can to help.
4 News and notices
Danny Ratnaike, Editor
6 In the press 7 Your questions
Ideas for festive gifts
8 A difficult decision
Deciding to stop driving
Baring all for dementia
11 Campaigning Add your voice
Remembering lost loved ones
14 Better at home
Home improvement agencies
16 Winning inspiration
Design: people-co.com Cover photograph: Steve Iliffe
18 Local news 20 Research
B is for… prevention?
24 Useful contacts
Living with dementia 3
News and notices Photograph: Blueski Photography
Antipsychotics campaign targets GPs An online campaign has been launched this month to encourage GPs to think twice about prescribing antipsychotic drugs to people with dementia and reduce inappropriate use. The Dementia Action Alliance initiative takes place on Doctors.net – a community that includes more than 50,000 GPs – and is part of its ongoing call to action. Paul Burstow, Care Services Minister, spoke at November’s UK Dementia Congress in Liverpool and told Living with dementia, ‘I have been clear that prescribing unlicensed antipsychotic drugs against the evidence, without clear clinical justification, Paul Burstow talks to the UK can amount to a deprivation of liberty. If the measures we have Dementia Congress in November introduced 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 some NHS trusts have begun auditing their use of antipsychotic drugs. There has also been a great deal of interest in Alzheimer’s Society publications on best practice in prescribing antipsychotic drugs.
No cash for new strategy Northern Ireland has launched its first dementia strategy, aiming to increase awareness and understanding of dementia and to support people with dementia and carers – but there is no additional funding to implement it. Health Minister Edwin Poots introduced the strategy at the Northern Ireland Assembly in November. Although he said that ideally he would invest £6 million to £8 million in dementia services he added there was currently no new money for the strategy. Bernadine McCrory, Alzheimer’s Society’s Acting Director for Northern Ireland, was pleased that there was 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 the Listening well project. But it is clear to everybody that if we invest funds in the early stages, so that people are getting the right information and able to make informed choices, then it will make huge savings at a later stage. The strategy talks about training for frontline staff. If we have appropriate training for staff we are able to prevent crisis admissions to acute hospital settings, and if they are in acute settings we are able to reduce their stay.’ One of those for whom an effective strategy backed by investment is vitally important is young carer Carol Hegarty. Carol, 26, looks after her mother who was 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 serious medical condition brought about by diseases like Alzheimer’s. Nobody should go through dementia alone, no matter what age they develop it. A dementia strategy that supports people like my mum to keep as well and independent as possible and supports me to care for her as much as I can, would be worth a lot.’ To find out more about the Dementia strategy for Northern Ireland visit www.dementiacentreni.org/node/1964 4 Living with dementia
Photograph: Blueski Photography
A lifetime dedicated to dementia
Clive Evers (third from left) receives his lifetime achievement award An Alzheimer’s Society stalwart has received a lifetime achievement award for more than 20 years of service to people with dementia and their carers. Clive Evers retired from the Society in November and was given the award at the 2nd National Dementia Care Awards the same month for his dedication to sharing information and understanding about dementia. He joined the Society in June 1988 as Information and Training Officer and was also the Acting Director for the organisation in 1990. He went on to be Director of Information and Education and Director of Knowledge before becoming Head of Professional Liaison in 2008. His achievements while a member of the Society include setting up the National Dementia Helpline, the Ann Brown Memorial Library (a precursor to the Dementia Knowledge Centre) and making the Society the first dementia organisation to work specifically with younger people with dementia. Clive says, ‘I have done so many things in my working life at the Society that I would never have dreamt of doing formerly – speaking on radio and television about dementia, speaking at conferences, lobbying MPs, talking to celebrities supporting the cause and helping to raise funds.’ Jeremy Hughes, Alzheimer’s Society’s Chief Executive, also paid tribute to Clive’s long service, saying ‘Thanks to Clive, over three decades the lives of tens of thousands of people with dementia have been improved.’ alzheimers.org.uk
In brief New publications catalogue The Society has produced a new publications catalogue (code PL1) that includes our full range of factsheets, books and booklets designed to support people with dementia and carers. A new factsheet, Exercise and physical activity for people with dementia (code 529), also explains why keeping physically active is important and gives examples of suitable exercises for people at different stages of dementia. See alzheimers.org.uk/factsheets To order a free copy of these new publications, please call Xcalibre on 01628 529240 or email email@example.com
International Alzheimer’s conference Alzheimer’s Disease International will be holding its 27th annual conference in London next year. It will be themed Science, fact, fiction and take place from 7 to 10 March. Health and social care professionals, researchers, people with dementia and carers are encouraged to attend, with an early bird discount available until 13 January. People with dementia and carers receive a reduced entry fee. To find out more, visit alzheimers.org.uk/adi2012 or call 0845 1800169.
Ordering Christmas cards and gifts Alzheimer’s Trading would like to apologise to customers who have encountered problems when ordering from the winter catalogue or online shop. A new supplier is in place this year to process and fulfil orders, and has provided assurances that these issues have now been resolved. If you have any concerns, email firstname.lastname@example.org or write to Alzheimer’s Trading Limited, Devon House, 58 St Katharine’s Way, London E1W 1LB.
Living with dementia 5
Real life experiences
In the press
November was another busy month for the press team. Heather Bowker talks about publicising a fundraising gig in Belfast by celebrities with their own experiences of dementia, as well as supporting a national advertising campaign
Celebrities help raise awareness of dementia by talking to journalists about their real life experiences. Musicians Tim Wheeler and Neil Hannon spoke out about how their lives have been affected by dementia at a fundraising gig in Northern Ireland, headlined by their bands Ash and The Divine Comedy along with legendary group The Undertones. Ahead of the gig, on World Alzheimer’s Day, Tim Wheeler talked about his father who passed away earlier this year with Alzheimer’s disease. Neil Hannon described how his father continues to live a meaningful and enjoyable life with dementia. Both frontmen explained how they wanted to use their music to help reduce stigma and raise money for the
Photographs: Ramsey Cardy
Belfast fundraising gig
Neil Hannon (top) and Tim Wheeler performing at the Belfast fundraising gig
Society, while giving fans an opportunity to hear three classic albums played in full – 1977 (Ash), Promenade (Divine Comedy) and The Undertones (self titled). The announcement of the benefit attracted widespread news and music press coverage, including in The Irish Times and on XFM and BBC News online, and excited conversations on Facebook and Twitter. On the day of the event, during the run up to the fundraising gig, Northern Ireland broadcaster UTV interviewed Tim Wheeler. BBC Newsline then took the evening shift, filming during the bands’ performances. The next morning, a stylish image of Tim Wheeler and his guitar adorned the front page of the Belfast Telegraph.
Department of Health campaign A news story that generated a great volume of press coverage was the Department of Health’s announcement of a £2 million national advertising campaign on the early signs and symptoms of dementia. We helped by putting regional press in touch with our media volunteers and 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 Express dedicated a front page to it. 6 Living with dementia
The festive period can raise many questions about how to involve relatives with dementia in celebrations and what to get them as a present. Our National Dementia Helpline Adviser Sandra Hillier looks at how to approach choosing a suitable gift
e’re struggling to come up with a suitable Christmas present for an aunt of ours who has dementia. She used to be very outgoing and vivacious, but is now more reserved and withdrawn at family gatherings. It is common for someone with dementia to lose their confidence and find social situations challenging and intimidating. This can be for numerous reasons, including an inability to cope with the pace of conversations in a group setting or the effects of short-term memory problems. Around this time of the year, we often get calls on the helpline about gift ideas. As a rule, the emphasis shouldn’t solely be on the fact that your aunt has dementia. Draw upon any hobbies or pastimes she had before she developed some cognitive decline, and which could encourage her to interact more and regain confidence. Finding appropriate activities or stimulus is also dependent on how progressed her dementia is.
it is neither too simplistic nor challenging, and so does not compromise an individual’s confidence in the process. As one of the biggest challenges for someone with dementia is short-term memory problems, associations from the past can bring comfort and pleasure. The field of reminiscence is commonly used for people with cognitive difficulties and there are many products on the market for varying budgets, ranging from remembrance boxes, nostalgic picture books and reminiscence music to bygone memorabilia. Sensory ideas can also be popular, such as familiar and evocative fragrances, or tactile items for restless hands that need to keep busy. Auditory stimuli like old time music tunes can also be evocative of a particular time relevant to that person. Attending a local Alzheimer’s Society service may also give you some ideas, as well as put you in touch with people in the community for support. To find your nearest local service, visit alzheimers.org.uk/localinformation
Ideas for gifts
Tailoring a suitable gift idea is often more about ensuring that alzheimers.org.uk
Our online forum Talking Point has a wealth of advice and
information that has been submitted by carers with invaluable experience and knowledge to share, see alzheimers.org.uk/talkingpoint The Society also has an online shop with books and daily living aids at alzheimers.org.uk/onlineshop and there are numerous websites selling specialist resources. Winslow has a reminiscence section (www.winslow-cat.com), AT Dementia offers assistive technology products (www.atdementia.org.uk) and Active Minds features activity products (www.active-minds.co.uk). On the helpline, we often get enquiries regarding suitable clothing for people with dementia, and these items could make practical gifts. Again, there are a number of suppliers, but they include Assisted Living Clothing at www.assistedlivingclothing.co.uk Also see our Supporting a person with dementia during visits, holidays and celebrations factsheet (455) at alzheimers.org.uk/factsheets or request a copy on 01628 529240.
Living with dementia 7
A difficult decision
With more than 40 years of experience behind the wheel, driving was an importa after being diagnosed with dementia he made the decision to hand in his licence
More recently, however, he started to notice that he was having memory lapses while driving and was sometimes unable to recollect his journey. He says, ‘I was finding that when I was driving I was thinking to myself “Where am I?” I couldn’t remember if I had gone through a certain place and gradually this seemed to get more and more often. ‘I noticed this had been happening over a number of months. I was more worried about other people than myself as when I was driving I wasn’t 8 Living with dementia
thinking about it, the concentration simply wasn’t there. My wife comes with me most places as well so I was worried about her.’
Photograph: Steve Iliffe
or Adrian Harrhy driving was not just for work or convenience but also for pleasure. Adrian, the sole driver in his family, started driving when he was 20. He would take his wife and daughter for camping holidays and also drove all across the UK for work. When Adrian, now aged 61, was diagnosed with Alzheimer’s disease, he continued to drive as he had done before. Two years ago he made the decision to drive less because of dementia and restricted himself to driving in and around his local area of Pontypool in Gwent.
Car park collision
It was an incident in a car park in nearby Cwmbran this August that prompted the final decision to give up driving for good, when he reversed out of a parking space and damaged another car. ‘Without thinking, I drove out of the space. I didn’t look where I was going or think about whether there were any people around and went into the side of another car. That was the main instigator of my decision to stop driving. ‘As I drove home I thought about the accident. I had been careless. I was solely to blame and it was an awakening for the future. The safety of my wife, other people and me was uppermost in my mind during that drive home.’
Deciding to stop
When he arrived home after the accident he told his wife Cherry that he would stop driving and she was fully supportive of his decision.
Adrian and Cherry walking to the bus stop near their home in Pontypool She contacted the Driving and Vehicle Licensing Agency (DVLA) and the insurance company, and within two weeks the car had been sold.
ant part of Adrian Harrhy’s life. But four years and tells Luke Bishop why
Cherry says, ‘Adrian hasn’t looked back now. The main thing was it was his own decision, it wasn’t a problem with his licence or anything like that.’ Adrian has no regrets about his decision to give up driving, particularly as his lack of concentration due to dementia could have led to a more serious road accident.
Since giving up Adrian and Cherry get about by using the local public transport system, if they want to go shopping or visit the Society’s local support services, for example. They also get lifts from friends as well as their Alzheimer’s Society befriender, who visits the couple every Monday. Adrian says, ‘A good thing that has come out of this is that I have been getting more exercise through walking. I also have a bus pass and we do most of what we need to by using the bus. We find it quite comfortable and easy. ‘At first we were disappointed about not driving. We thought it would be hard to do because of having to carry the shopping, but the bus services in our area are very good and there’s a alzheimers.org.uk
bus stop about 100 yards from our house. It doesn’t really affect us too much, in fact we go out more now than we used to before.’
Driving after diagnosis
Like Adrian, people with dementia can continue to drive after they receive a diagnosis – but, by law, they must contact the DVLA and inform them of the diagnosis. You will receive a questionnaire in the mail and the DVLA will seek medical information and make a decision about whether you should still be driving or not. Insurance companies must also be informed of the diagnosis. Although many people with dementia like Adrian choose to give up driving because of safety concerns, others may be reluctant. If you need advice about this decision, as a person with dementia or as a carer see alzheimers.org.uk/driving You can also consult the Society’s Driving and dementia factsheet (439) – see alzheimers.org.uk/factsheets or order a copy from Xcalibre on 01628 529240.
Adrian Harrhy was a driver for 40 years and used his car for work and for holidaying as well. He was diagnosed with early onset Alzheimer’s disease four years ago and continued to drive afterwards. He decided to only do short journeys but recently started having lapses of memory and concentration when he was driving and was concerned for his and others’ safety. He made the final decision to stop driving after he had a minor collision with another car and decided it was unsafe for him to drive. His wife Cherry contacted the DVLA and insurance company and the car was sold off. Adrian hasn’t looked back since his decision and now relies on walking, public transport and lifts from other drivers for trips. He says he has become used to the change now and finds it relatively easy to get around. To find out more visit alzheimers.org.uk/driving Living with dementia 9
Baring all for dementia
ctress and singer Lyn Paul has made a revealing calendar to raise money for Alzheimer’s Society and raise awareness of dementia. She speaks about how her mother’s dementia motivates her fundraising efforts. Lyn, singer in the 70s pop band The New Seekers and long-running star of West End musical Blood Brothers, is helping people affected by dementia through a new nude calendar that features her and fellow stars from the show. For Lyn (bottom left in grid on right), anything she can do for people with dementia is worthwhile as she doesn’t want others to go through the same experience she had with her mother Doreen Belcher, who died of Alzheimer’s disease last November. Doreen, who Lyn says was her best friend, started showing signs of dementia several years ago when she became forgetful and started repeating herself. As things progressed she also became withdrawn and paranoid. After her mum was diagnosed she was
prescribed antipsychotic drugs, which caused her to lose her mobility, and she also became incontinent. Lyn, along with her sisters Amanda and Nikki, helped her dad Dennis, who she calls ‘an absolute hero’, care for her mum at home but things went downhill when she went to a care home for respite. From there she went to hospital with pneumonia and died six months later. She says, ‘There are
no words to describe how bad it is and what the family has to go through. I can’t help my mum now but I will do anything that I can to stop it happening to future generations because I don’t want my son going through what I went through.’ In her dedication to the cause, she decided to bare all for the calendar. She adds, ‘I have never done anything like this before. It was fantastic, I was the first one to have the photograph taken and at first I thought “I can’t believe I said I would do this.” But it was so liberating and all the other girls felt the same.’ The calendar, which features current and former Blood Brothers cast members, costs £9.99 – all of which goes directly to Alzheimer’s Society. The calendar is available from alzheimers.org.uk/shop Living with dementia is giving away five calendars and a pair of Blood Brothers tickets. Send a postcard with your contact details and marked ‘Brothers’ to the Editor at the address on the back page by 14 January to enter.
Making its mark Alzheimer’s Society marked the end of its partnership with Bupa for the Great Run series at the Great South Run in October. Comedian Hugh Dennis (left) and Daybreak’s Dr Hilary Jones brought the partnership to a close. Since 2009, 27,000 people have run in support of the Society, raising £3.5 million for people affected by dementia.
10 Living with dementia
Add your voice
The Society is at a crucial point in its campaign to make the care system fairer. Chris Kirby writes about how we need your help to keep this at the top of the political agenda
e have campaigned for many years to end the ‘dementia tax’. The current system of social care funding is a postcode lottery for those who rely on it for their care, with wild variations in quality and cost. In the August/September issue we outlined some of the proposals put forward by the Dilnot Commission, an independent review that looked into the future funding of adult social care. We are now campaigning hard to ensure these proposals are used as a starting point for reform. The government is due to publish a Social Care Bill in the spring, and we have a once in a generation opportunity to make the way that we pay for care fairer for people with dementia.
What action has the Society taken so far?
In November, Jeremy Hughes wrote to all MPs to highlight the vital need to for all political parties to agree a consensus on the future of funding. Along with his letter, he sent a video case study of Angela Smith, who cared for her husband and her mother through their journeys with dementia. You can watch Angela’s film at alzheimers.org.uk/chargingforcare alzheimers.org.uk
Our campaigners have also been working hard, writing to each main party’s health spokesperson as well as to local MPs to urge the cross party consensus that will be so essential. While this is an issue that affects large numbers of people with dementia, it also has a great impact on others. We have been working with the Care and Support Alliance – a group of more than 50 charities – and making the argument together. By speaking with one voice, we can have far more impact than we would have as individual organisations.
How can I help?
You can add your voice to the campaign and increase the
pressure on the government. Included in this month’s magazine is a postcard with space for your thoughts on why the system needs to change. We need everyone to complete a postcard and send it back to us so that we can take them to the Prime Minister. Feel free to post this in an envelope if you prefer. The more people who send us their comments, the stronger our case for change. What are your experiences of the current system? How has it affected you, your family and friends? Your experiences can help secure the best deal possible for people with dementia.
What are our next steps? We will continue to work with the Care and Support Alliance to plan a national lobby day at Westminster in early March to influence MPs before the publication of the Social Care Bill. If you are interested in taking part in this day of action, please get in touch on 020 7423 5128.
Living with dementia 11
Remembering lost loved on The grieving process for family members and loved ones of people with dementia former carer Bruce Bovill about how he handled bereavement and how he focuses
or Bruce Bovill, the grieving started many years before the death of his wife. The terrible impact that mixed Alzheimer’s and vascular dementia had on Jan, who developed the disease in her late 40s, led to an early sense of bereavement. He says, ‘I think that grieving can be a little bit different for dementia compared with some other diseases because it takes away the person before their bodies go away, and that is what makes for a long grieving process. ‘Everybody deals differently with loss and grief, and I did most of my grieving while caring alone for Jan while she was still living at home with me, seeing someone so young and vibrant falling apart.’ Jan moved to a care home, where she spent the last nine years of her life, after her condition deteriorated suddenly and she needed round-the-clock, total care.
He says that grieving was constant throughout Jan’s 25-year dementia journey, but he learnt to cope with it by always seeking to ensure the best possible care for Jan, and in enlisting the support of others. 12 Living with dementia
Bruce Bovill and his wife Jan Maintaining the emotional closeness of a husband of 42 years, he also made a conscious decision to emotionally detach himself when it came to determining Jan’s care needs – deciding what was best for her, rather than what made him feel comfortable when seeing her. One of the main sources of support for Bruce was Talking Point. Being a member and moderator of the online forum allowed him both to talk about his own problems, and help
others in a similar position. He also relied on the support of close friends, family members and work colleagues. ‘I was fortunate to be involved with Talking Point, as I was seeing other people going through the same process with having partners or family members with dementia. ‘Everyone gets great support from the forum and also it teaches you there is no single right way to do things, only the way that works for you as an
can be long and complex. Luke Bishop speaks to on the positive memories of his wife
individual couple or family. Talking Point gives you a range of options about how to deal with things.’
Sense of closure
It is only with his wife’s death aged 69, in August of last year, that Bruce has felt a sense of closure about her battle with dementia. Sadness over her death has been tempered by relief that she has finally been released from what he calls her torture. He also finds comfort in the fact that he knows he did everything he possibly could for Jan. He adds, ‘Obviously there was grief and a huge sense of loss, but it was a different sort of grief from somebody you know and love dying suddenly, with things left unsaid. On the afternoon of the day that she died, I said everything I felt I needed to say to her. It was a Sunday and the vicar that attended the care home came and blessed us. ‘For me, Jan’s funeral had to be an uplifting occasion – not sad – and a celebration of her life. I was surrounded by those who had supported us both throughout, and that was wonderful and essential.’ alzheimers.org.uk
No right or wrong
Bruce believes there is no right or wrong way of grieving, but that focusing on positive memories of your loved one makes things easier. He admits he still has moments of grief, particularly if he sees a picture of Jan in the later stages of her dementia, as it brings back the memories of how bad it was for her. ‘I feel that Jan is still all around me. If I’m driving I will go down a road that we drove along and I think to myself “there she is”, or if I hear a bit of music or have some food served up at a restaurant that reminds me of her I think “there she is”.’ Talking Point has a dedicated sub-forum, called After dementia – dealing with loss, for people who are dealing with emotional and practical issues following the death of a loved one. Visit the forum on alzheimers.org.uk/talkingpoint If you are in need of emotional and practical support you can also call our National Dementia Helpline on 0845 3000 336 in England and Wales or 028 9066 4100 in Northern Ireland.
Bruce Bovill started to grieve for his wife Jan, who had mixed dementia, while she was still alive because of the way dementia affected her. He coped with grief by talking to other people in similar positions through Talking Point and by giving them advice on their problems. Friends, family members and work colleagues also helped Bruce cope with the strain of caring for Jan. Bruce felt some relief when Jan died because she was free from her 25-year struggle with dementia. He comforts himself by knowing that he did everything he possibly could for her care. Although he still feels grief over her death, he tries to remember her as positively as possible. He made sure her funeral was a celebration of her life. If you need practical or emotional support, visit alzheimers.org.uk/talkingpoint Living with dementia 13
Better at home
From finding reputable tradesmen to helping to create a safe and secure environm agencies can help people with dementia to live in their own homes for longer
Homewise advises on creating a familiar, safe and secure home environment, which Sue believes can help to maintain independence and improve quality of life. She says, ‘We like to make sure the home environment is predictable and makes sense to people, and that there are no surprises that could disorientate them. We have to understand where that person is in relation to their illness at the time and build the environment around them, 14 Living with dementia
ue Sinclair has managed Hyndburn Homewise Society, a not-for-profit home improvement agency in Lancashire, for 24 years. It helps people in the borough of Hyndburn to improve, repair and maintain their own homes so they can live independently as long as they want to. The agency offers practical help and advice with home improvements, minor and major repairs, adaptations and general maintenance. It also offers a free handyperson service to people aged over 60, free homesafe checks and advice on energy efficiency. It can also recommend reliable local tradesmen.
are perceived as disruptive. ‘Thoughtful measures such as creating a safe environment can have a huge impact on a person’s well-being and reduce the need for medication.’ Here, Sue shares some tips on simple things that people can do to support a person with dementia in their own home.
. Agencies offer practical help possibly simulating an environment that’s familiar in their long-term memory so that they won’t have to ask, “Where am I?” or “Where am I going?”’ Sue adds, ‘I recently heard a story about a note that had been left in front of a lady with dementia in a care home. It read, “Please keep quiet and don’t bang the table”. That is absolutely appalling. If you can make the environment safe, secure and familiar so people feel happier then they may not become distressed or agitated and won’t feel like having to bang the table.’ Sue worries that people are prescribed drugs because they
. . . .
A different coloured light switch against a plain wall can make it easier to identify. Plain, continuous colour on the floor can aid mobility. A change in style or colour may be perceived as a barrier and cause confusion. Patterned carpets can also cause distress as patterns can be seen as holes. Coloured doors can help people recognise a door against a wall. Visual signs on doors may also help people understand what’s behind them, such as a picture of a toilet on the bathroom door.
Glass cupboard doors can help people to see what’s inside and prompt them to make a drink, for example. Alternatively, cupboards can be replaced with shelves so
ent, Rachael Doeg finds out how home improvement
. . .
cups and tins are easy to see. Large cupboard handles can encourage people to open them more easily. Simplify the environment to make daily tasks easier, such as putting names on tins for tea, coffee and sugar. Lists can help prompt memory about day-to-day tasks and increase independence.
. . . . .
Mirrors can cause problems as people may not recognise their own reflection and so become distressed, particularly at night. Consider putting names on pictures and family photos to help recall. Decorating the home in a style similar to a house the person used to live in may help them to feel more secure. Charity shops often have second hand furniture or can source it cheaply. Put out personal things and objects from the past that the person can relate to. There may be things in the attic or in storage.
Separate taps for hot and cold water rather than modern mixer taps can help people to
distinguish them more easily. A different coloured toilet seat can help people to use the toilet.
Sue says, ‘It’s about looking at the little things that can be done to help people feel more comfortable, safe and secure in their home environment. I know a family whose mother came to live with them and she’d get up from her chair and go in the wrong direction to the toilet. They realised she was imagining being in the semi-detached house she used to live in, so moved the furniture around a bit and it helped.’
Find a local agency For the location of your nearest agency in England, contact Foundations on 0845 864 5210 or see www.foundations.uk.com If you are in Wales, you can contact Care & Repair Cymru on 0300 111 3333 or visit www.careandrepair.org.uk In Northern Ireland, contact Fold Housing Association on 028 9042 8314 or see www.foldgroup.co.uk
Home improvement agencies offer a range of services that can help people with dementia to live longer at home in safe, secure environments. Sue Sinclair runs an agency in Hyndburn, Lancashire that gives local people practical help and advice with home improvements, repairs, adaptations and maintenance, including some free services. Sue believes that creating a familiar, safe and secure home environment can help to preserve independence and improve quality of life. There are many ways in which home environments can be made less confusing through the careful use of colours, signs and labels. Decorating in a style familiar to a time that a person remembers most clearly can help them to feel more secure. To find a home improvement agency contact Foundations, Care & Repair Cymru or Fold Housing Association. Living with dementia 15
Winning inspiration A group of volunteers enjoyed a VIP day in London to collect their William Brooks
he invaluable work of 10 volunteers was recognised at Buckingham Palace in November, when the William Brooks Awards 2011 were presented by the Society’s Royal Patron HRH Princess Alexandra and Sir Michael Parkinson. Sir Michael said, ‘Their commitment to improving the lives of people living with dementia, and their carers, is inspirational. Alzheimer’s Society relies on volunteers to continue its vital work, and as the number of people with dementia rises they will need volunteer support more than ever.’
Getting the South West singing
Singing for the Brain groups are becoming a well used aspect of Society services in many places, but the work of Susan Lawrence in Plymouth is making sure that more people in the South West than ever 16 Living with dementia
will have one nearby. Plymouth’s used to be the only Singing for the Brain group in Devon and Cornwall, but People’s Millions funding has allowed many more to be established in the last year. Susan has been vital in recruiting volunteers and group leaders, researching each new area, contacting local groups and finding venues. She is a passionate advocate of Singing for the Brain, emphasising the benefits for people with dementia and their carers, from sitting and listening at first to moving or mouthing along to songs, and eventually joining in. ‘You can really see their progress over the weeks. It is a joy to watch and also important for the carers.’ She adds, ‘We have such fun, we sing some songs and they may go wrong but everybody just laughs.’ Susan says that it was a ‘fantastic surprise’ to discover she had been nominated for a William Brooks
Award and amazing to attend the ceremony. ‘We had lunch at the Royal Society with Sir Michael Parkinson, who was lovely – exactly as you see him on television – and it was nice to meet the other award winners. We were treated like VIPs all day.’ ShesaysthatgoingtoBuckingham Palace afterwards had ‘a real “wow” sensation’ to it and HRH Princess Alexandra was a delight to meet. ‘She came around and talked to everyone, not just the winners.’
A man in a million
Alan Chandler from Brentwood, Essex has volunteered for nine years as a minibus driver, taking younger people with dementia, staff and volunteers on outings each week, including to parks and the seaside. He was also a treasurer for four years and says, ‘I took a bookkeeping course to assist
Quick read Awards, by Danny Ratnaike
my knowledge and became an associate member of the Institute of Certified Bookkeepers. I thoroughly enjoyed this job and liked working with figures.’ Alan is described in his award citation as ‘a man in a million’ who is relied on greatly by the Society’s Redbridge younger people’s group. On finding out about his nomination Alan says, ‘I was flabbergasted and felt very honoured, as I am sure there are many other deserving volunteers doing more and raising more money than I.’ ‘The day in question was something else,’ he recalls. ‘After the presentations, HRH Princess Alexandra circulated and chatted to everybody for an hour. It was a fantastic afternoon and my wife enjoyed the day immensely, especially chatting with HRH about Downton Abbey.’ Alan says that the volunteers and staff who help carers and clients to manage their daily lives do the most important part of the Society’s work. ‘I am pleased to be able to put something back into society by helping out at the group for as long as I can.’
Awe inspiring people
Joanne Duffy in Barrowford, Lancashire was also surprised to be nominated, despite alzheimers.org.uk
being an active volunteer for three years. Having specialised in dementia in her psychology degree she has been using her exceptional skills in support and befriending work, in addition to fundraising. Joanne says, ‘The ceremony was wonderful, a once in a lifetime experience.’ Now a Dementia Support Worker for Calderdale, she says she hopes to continue to provide the support and advice that people need. Rachael Bayley, Director of Volunteering Development, described all of the winners as ‘an awe inspiring group of people’. She added, ‘They go the extra mile and make a huge difference. We couldn’t do all that we do without them.’ If interested in volunteering see alzheimers.org.uk/volunteers Pictured from left, back row: Society Chief Executive Jeremy Hughes, Susan Lawrence, Alan Chandler, Angela Clayton-Turner from Beckenham in Kent, Sir Michael Parkinson, HRH Princess Alexandra, Society Chairman Alastair Balls, Eileen Harrington from Scawthorpe, Doncaster, Joanne Duffy, Society Vice-Chairman Eileen Winston; front row: Pat Bentley from Cheddleton, Staffordshire, Audrey Welch from Norwich, Judy Roberts from Upton by Chester, Cheshire, Wendy Oldfield from Linthwaite, Huddersfield and Lynne Ramsay from Chislehurst, Kent.
The William Brooks Awards 2011 were presented to 10 Society volunteers at a ceremony in London in November for their invaluable work for people affected by dementia. The awards were presented by HRH Princess Alexandra and Sir Michael Parkinson at Buckingham Palace following a lunch at the Royal Society. One winner was Susan Lawrence, who has helped to set up a string of new Singing for the Brain groups in Devon and Cornwall. She said it had been a ‘fantastic surprise’ to be nominated. Alan Chandler won after volunteering for nine years in Essex, driving a minibus and acting as treasurer. He was cited as being ‘a man in a million’. The other award winners were Joanne Duffy, Angela Clayton-Turner, Eileen Harrington, Pat Bentley, Audrey Welch, Judy Roberts, Wendy Oldfield and Lynne Ramsay. Living with dementia 17
Local news Photograph: The Big Lottery Fund
Reaching out to isolated areas
New services are being set up to reach out to isolated older people with dementia thanks to funding from the Big Lottery Fund. In Northern Ireland, Alzheimer’s Society was awarded £500,000 to set up six Dementia Cafés to provide a meeting place for people with dementia and their carers to access information and support. Bernadine McCrory, Alzheimer’s Society’s Acting Director in Northern Ireland, says, ‘Dementia Cafés will be based in local community venues. We know from research involving people with dementia, which we undertook in Northern Ireland in 2009 (Listening well report), that social isolation can be a big issue for Bryan and Sylvia Clay people 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 so many 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, Blyth and Hexham were opened earlier this year, thanks once again to Big Lottery Funding so that more people with dementia in the large but sparsely populated county have access to services. Stephen Errington, Locality Manager for the North of Tyne area, says, ‘These offices are in really good central 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
People with dementia and carers have contributed to a new resource pack that gives good practice guidance to organisations on how to engage and consult with dementia patients. The Involving people living with dementia pack is aimed at health Norman McNamara at the launch of and social care professionals and features resource cards to help the resource pack involve people with dementia. It includes 18 cards that give specific information, advice and tips on communicating with people with dementia, involving them in events and making sure their views are taken into account when developing services. Norman McNamara, 53, is a younger person with dementia from Torquay and was part of the reference group involved in deciding the content. He says, ‘When you are diagnosed with dementia, no matter how much support you have, no matter how much information may be available, the feeling of helplessness and worthlessness is overwhelming. ‘These cards will help to give people with dementia a voice. It will give people with dementia their self worth 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 and was attended by Alzheimer’s Society Chief Executive Jeremy Hughes as well as representatives from organisations such as NHS South West. For more information and to get a copy of the resource pack visit www.southwestdementiapartnership.org.uk 18 Living with dementia
Glen Campbell shows his support for Steve Haigh and the early diagnosis campaign in Somerset Country music megastar Glen Campbell lent his support to an awareness campaign about the early symptoms of dementia when he met an Alzheimer’s Society dementia support worker backstage after one of his gigs. Steve Haigh, who works in the Somerset locality, met Glen backstage after his concert at Plymouth Pavilions in November. Steve says, ‘He expressed his interest in the work of Alzheimer’s Society and hoped our Somerset campaign would be successful in helping more people come forward for an early diagnosis of the condition.’ Glen, 75, who has sold more than 45 million albums, has Alzheimer’s disease and the concert was part of his Goodbye tour of the UK. Steve adds, ‘As someone who is living with the condition himself, he completely understood that just because you have an early diagnosis of the condition that does not mean you can’t get on with enjoying your life and live it to the full. Glen is an inspiration to us all.’ Some 10,000 campaign leaflets are currently circulating in Somerset encouraging early diagnosis. To find out more information visit the website of the Somerset Dementia Partnership at www.dementiasomerset.org.uk alzheimers.org.uk
‘Happy house’ for early onset dementia An innovative drop-in centre aimed at people with early onset dementia opened in South Wales this month. Ty Hapus, Welsh for ‘happy house’, at Barry in the Vale of Glamorgan, had its official launch on 12 December at an event attended by health and social care professionals. Ellin Jones, Support Services Manager for Alzheimer’s Society in Cardiff and the Vale, is now managing the centre which includes a therapy lounge. She says, ‘It is designed for the purpose of early onset dementia. It is a daytime activity centre that will have a lounge space for six guests as well as a café which will be open to people of any age. Photograph: Media Wales
Music legend supports campaign
Justine Pickering with her mother Annie The centre was inspired by Justine Pickering, who raised money to build the centre because of her mother Annie’s early onset dementia. Living with dementia 19
B is for… prevention? New research raises questions about the links between B vitamins and dementia
small study at the Universities of Oxford and Oslo caused excitement in national newspapers this autumn. Headlines announced that vitamin B supplements could be ‘the pill to beat Alzheimer’s’. These declarations were of course wrapping fish and chips the next day, but the possible role of B vitamins in dementia is a recurring focus in research, so where have we got to in understanding links between the two?
We all have an amino acid called homocysteine in our blood. If our levels of homocysteine rise so does the risk of developing Alzheimer’s, vascular dementia and other forms of dementia (as well as stroke and heart disease). Taking B vitamins can lower levels of homocysteine, but the question is can they also reduce the likelihood of developing dementia or slow its progress? So far trials of vitamin B supplements for people with early stage dementia have been unsuccessful.
Getting in early
The Oxford and Oslo VITACOG study investigated the effect 20 Living with dementia
Further analysis found that people with the highest homocysteine levels at the start of the trial did better overall on the cognitive tests. Brain scans showed they also had a higher average reduction in brain shrinkage of 50 per cent. So the B vitamins provided most benefit for people with the highest homocysteine levels.
New trial of regular, very high doses of B vitamins over two years on people over 70 years old with mild cognitive impairment (when cognitive problems do not have a significant impact on their daily lives). People taking the B vitamins made improvements in some mental function tests compared with those taking a placebo. Results published last year from the same study also showed that those taking vitamin B experienced 30 per cent less brain shrinkage. ‘Our thinking was to concentrate on early cognitive impairment,’ explains Dr Celeste de Jager of Oxford University who led the trial. She says that at this earlier stage ‘people have got enough brain tissue to preserve.’
It is these links with homocysteine levels that make these results interesting. However it’s important to realise that brain shrinkage is a general indicator rather than a definite sign of cognitive decline. Dr de Jager and colleagues are now planning a larger trial that will only involve people with high levels of homocysteine and will focus on changes in their cognitive skills, such as memory, thinking and reasoning. We know that half of all people with mild cognitive impairment will develop dementia within five years. The emphasis of the new trial will be on establishing whether B vitamins could play a role in preventing this. ‘The aim is to see if we can delay dementia,’ says Dr de
but there is much still to learn, by Caroline Bradley
Jager. ‘B vitamins are cheap and well tolerated, with few side effects. This is about a possible way to maintain brain health for longer.’
As researchers seek evidence about whether B vitamins can delay or prevent dementia, there is also a need to understand how high homocysteine levels contribute to the development of dementia. Alzheimer’s Society is funding Dr Gayle Middleton’s research at the University of St Andrews. ‘I’m looking at things at an early stage, at the impact that high homocysteine levels have on mechanisms within our nerve cells and what is changing in people’s body chemistry that puts them on the path to Alzheimer’s disease.’ This work involves growing nerve cells in the laboratory and using them to screen large numbers of proteins to determine which ones are influenced by homocysteine.
Homocysteine levels tend to increase with age, possibly because we are less able to alzheimers.org.uk
absorb B vitamins from our diet as we get older. However, this doesn’t mean we should necessarily take supplements as insurance against this. Knowing that an absence of something causes harm does not mean that an excess of it will prevent or undo that harm. More importantly, it is not a good idea to take regular B vitamin supplements without advice from your doctor. There is a risk of re-activating cancerous cells with folic acid (also known as vitamin B9) and taking over 1mg of folic acid a day can mask signs of vitamin B12 deficiency. The best advice for keeping homocysteine levels low is to get plenty of exercise, eat healthily, stop smoking and don’t drink over recommended limits. This fits well with general advice for reducing the risk of dementia, which includes having your blood pressure and cholesterol levels checked regularly. Research reference: de Jager CA et al (2011). Cognitive and clinical outcomes of homocysteine-lowering B-vitamin treatment in mild cognitive impairment: a randomized controlled trial. Int J Geriatr Psychiatry doi: 10.1002/gps.2758.
B vitamins continue to hit the headlines as a possible treatment to prevent dementia, but taking high doses without medical advice can also cause problems. If our levels of an amino acid called homocysteine go up so do our chances of developing dementia. Taking B vitamins can reduce levels of homocysteine, but researchers have not found clear evidence that taking these supplements can help people with dementia. Researchers are planning to test the effects of B vitamins on people with high homocysteine levels. They hope to find out whether supplements can delay dementia. It is not a good idea to take regular B vitamin supplements without advice from your doctor. The best advice for reducing the risk of dementia is to do plenty of exercise, eat healthily and get blood pressure and cholesterol levels checked regularly. Living with dementia 21
Letters Tell us your views Letter of the month
I have just read the letter Garden of tranquillity from Sheila Willis in the October magazine, and had to write to say that’s exactly how I feel. The betrayal and guilt of putting my husband in a home has been very 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 a wonderful form of therapy. Thank you so much for your magazine. It also helped me with what to ask when looking for a care home, so he is now settling into a new, but very friendly environment. Thank you for all the help you give.
Sybil Frampton, East Sussex Congratulations to our Letter of the month writer, who will receive a bouquet of flowers
Linking patients and GPs
I wondered if your readers would be interested to know about patient participation groups (PPGs) being set up in GP practices. PPGs are groups of patients who work with the practice to act as a route of communication between the practice and its patients. The aim is to help assess performance, provide feedback to the practice, develop services for the patients, provide a patient perspective, influence practice developments and support the practice in the NHS and the wider community so that patients can have a voice on future developments. Meetings are held once a month. I have found this to be a good way of helping the practice to understand how they are perceived by the patient, and ways to help improve services that the patients feel are important and useful to them. 22 Living with dementia
More information can be found at www.napp.org.uk or ask at your local GP practice. Mrs Davison, Norfolk Since April 2011, GP practices in England have been required to set up ‘patient reference groups’ such as PPGs. Similar initiatives are being encouraged in Wales and Northern Ireland.
Early onset isn’t easy
Kate Moffatt’s letter (November issue) about the age of persons featured in your articles struck a chord with me. It was not just about the younger age people being featured but the fact that all these people are in very early onset and capable of living a relatively normal life. Not all younger people are so lucky. My wife was diagnosed with early onset Alzheimer’s in 2008 at the age of 54. Three years on she is struggling to communicate, needs help with washing and dressing,
cannot perform any household tasks and is totally dependent on me to organise her life. Therefore she cannot work but the only benefit for which she qualifies is Disability Living Allowance, but not the full rate. There is no recognition of this situation in the benefit system. How is she expected to live on £267 paid every four weeks? Fortunately, although 10 years older than her so not qualifying for Carers’ Allowance, I do have a company pension and OAP which are sufficient to support us. One more comment for you. When the TV news was commenting on the new initiative, as always, they showed images of older people – in this case gnarled hands – so the broadcasters certainly have not picked up that dementia also affects younger people. I must finish by saying that the help and support we have received to deal with this massive problem
has been brilliant and allows me to sit here ‘having a whinge’. Keep up the good work. Leslie Hill, Hampshire
I agree with Professor MJ Owen (Showing later stages, November issue) regarding the lack of publicity about the later and terminal stages of this terrible disease. My husband Bernard was diagnosed with Alzheimer’s in 1999 at the age of 54. I managed four years with very little support, constant brick walls, a battle to get appropriate medication and so much stress that my own health began to suffer. Bernard was very aggressive and often frightening, so when there was the opportunity for him to take two weeks respite I grabbed it as up till then my only respite was going out to work leaving him home alone. When I picked him up after the two weeks he was barely recognisable, they had drugged him up so much and in addition to this he had become doubly incontinent. I managed two weeks with him at home until I had to beg for him to be taken into hospital hoping they would sort his medication
out. He never came home. After seven years in care he passed away last year. It is good that you point out the good things and look at the positive aspects of living with this cruel disease and it does seem that services have improved in the last 10 years. However, I have been left with a great deal of guilt because I couldn’t look after him for longer at home. Living with dementia only serves to exacerbate that guilt (to the point I feel it would be wiser for me to stop reading it). Your photos and articles often depict what look like perfectly normal sufferers of the disease, which I often struggle to relate to, rather than being honest and showing readers how it really is, or is that too negative? Elizabeth Cragg, Oldham
The music plays on
Our aim is to represent all aspects of living with dementia and to support readers by sharing useful information and experiences of people affected by dementia. We are greatly appreciative of all comments received by our readers and use this feedback to make decisions around how we best meet the needs of our broad range of readers.
Changing your details
I refer to the letter Music is a gift in the November issue. My husband Frank was a church organist for over 60 years and when diagnosed with vascular dementia in August 2006 he determined to continue as long as he could. This he did with help. He played his last service in November 2010 and was admitted to a care home in March 2011. Frank died in August 2011 and the night before he died the nurse told me that she went into his room in the dark to check on him and all she could see was his hand out of the covers conducting the music on his radio which was constantly playing classical music. I feel so grateful that he never lost that love. Jean Walton, Stockport
If 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@example.com
We welcome your letters Please write to Magazine Editor, Alzheimer’s Society, Devon House, 58 St Katharine’s Way, London E1W 1LB or email firstname.lastname@example.org Letters may be edited. We regret we are unable to forward letters on to correspondents without their prior consent. Letters for the February issue to arrive by 16 January. The views expressed in this magazine are personal and not necessarily those of Alzheimer’s Society.
Living with dementia 23
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 dementia and their carers through our publications, National Dementia Helpline, website and more than 2,000 local services. We campaign for better quality of life for people with dementia and greater understanding of the condition. We also fund an innovative programme of medical and social research into the cause, cure and prevention of dementia and the care people receive. Alzheimer’s Society website alzheimers.org.uk Access all our factsheets alzheimers.org.uk/factsheets
Useful contacts Alzheimer’s Society National Dementia Helpline
England and Wales 0845 3000 336 Open 8.30am–6.30pm Monday to Friday Northern Ireland 028 9066 4100 Open 9.30am–4.30pm Monday to Friday
Devon House 58 St Katharine’s Way London E1W 1LB Telephone: 020 7423 3500
Changing your details
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