February/March 2021 Alzheimer’s Society’s magazine

No stone unturned Research and the pandemic

Meaningful visits Care home campaigning

Keeping it all together Staying strong for family

Also in this issue COVID-19 vaccinations Sport United Against Dementia Book group: Remember me?

Life as it comes Adjusting to a different lane Welcome

o one could be blamed for struggling to feel hopeful at the start of 2021. For some of us, a return to tighter restrictions felt like going backwards. NFor others, an isolation that never really eased was extended. But we have thousands upon thousands of reasons to be hopeful – you. Whether you’re donating, fundraising, adding your voice to our campaigns, making Companion Calls, helping family, friends and neighbours, or sharing your experiences with others in similar situations on Talking Point, you are making a very real difference to people’s lives. COVID-19 vaccinations offer another reason for optimism, even though everyone who needs them the most hasn’t yet had them. We won’t shy away from the challenges that people are facing, but we also want to share our reasons for hope with all of you through this magazine. You are not alone, and we want you to be as inspired as we are by the people whose stories and voices feature in these pages. Do carry on letting us know what you think of the magazine, as we will continue to shape what we do to be as relevant, interesting and useful as possible.

Danny Ratnaike Magazine Editor

NeedQuestions support? about We’re dementia? here for you See – see p38. p18.

Dementia together is the magazine for all Alzheimer’s Society supporters and people affected by dementia. Contact us on [email protected], 020 7264 2667 or 020 7423 3676.

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£50 can go towards our Companion Calls, where volunteers phone people affected by dementia to chat and check on their wellbeing. Please give what you can today Contents February/March 2021

News COVID-19 vaccinations 4

Life as it comes Adjusting to a different lane 8

Lockdown: ‘I’ve changed’ 12 Trek26: A brilliant day 13 Try something new 13 Finding a way 14 Meet the researcher: Sana Suri 15 How I enjoy the outdoors 16 Q&A: Jitendra Kaumar Gupta 17 Beyond stalemate and crisis 19 In your area 20 Spotlight: Stephen Hill 21

Keeping it all together Staying strong for family 22 8 Anne is grateful for the support she’s had. No stone unturned Research and the pandemic 26

Meaningful visits Care home campaigning 28

Letters 30 Help at home 32 Book group: Remember me? 34 Sense and sensibility 35 Easing restrictions 36 Help with activities 37 Coping with the cold 38 Competitions 39 22 Safe and together. 26 Keeping vital work going.

£50 can go towards our Companion Calls, where volunteers phone people affected by dementia to chat and check on their wellbeing. Please give what you can today Copyright ©2021 Alzheimer’s Society – please ask us if you’d like to copy our content or use it elsewhere. 3 News COVID-19 vaccinations Many people with dementia have been among the first to receive a COVID-19 vaccine. The NHS aims to vaccinate everyone living in a care home by the end of January 2021, and everyone aged over 70 or clinically extremely vulnerable by mid-February. People who receive a carer’s allowance, or those who are the main carer of an older or disabled person whose welfare may be at risk if the Who’s your carer falls ill, are also considered a priority group for later in the year. The NHS is inviting people for vaccination when it is their turn. Some Dementia Hero? people will get a letter inviting them to book an appointment. If you are not currently registered with a GP, you should register now to avoid missing out on a vaccine. You will get a second dose of the vaccine within Dementia Hero 12 weeks of your first. Awards 2021 We’re calling for more to be done to protect people affected by Nominate now dementia, including vaccinations for family carers. There have been reports of people being contacted and asked to pay for the vaccine – these are scams and should be ignored. A new set of awards will For more about the vaccine and other coronavirus support visit showcase the people doing alzheimers.org.uk/coronavirus outstanding things for those affected by dementia during the pandemic. The Dementia Hero Do your own Memory Walk Awards 2021 will recognise There’s another great chance to unite with us for Memory Walk this spring – achievements of individuals, take part in your own Memory Walk on 20 March, and help make a difference groups and organisations in for people affected by dementia during the pandemic. Wales, Northern Ireland We hope to safely welcome you back at organised events in the autumn, and England. but you don’t need to wait until then to walk for a world without dementia. The award categories Taking part in March is easy – you decide where to walk, how far to go include Care and Compassion, and whether you walk alone, with your household or with pets in tow (all in Professional Excellence, line with the latest guidance, of course). Campaigning, Research, Sign up today at memorywalk.org.uk Innovation, Dementia Friendly Business, Fundraising, Print/ Online Journalism, Broadcast Journalism and Dementia Voice. An Outstanding Achievement award celebrates those who have gone above and beyond during this pandemic to improve the lives and champion the rights of people affected by dementia. The awards, sponsored by Tunstall Healthcare, will take place during Dementia Action Week, which is 17–23 May (see p6). Make your nominations before 5 March – visit alzheimers.org.uk/ dementiaheroawards

4 Sport United Against Dementia

Directions hat a busy start to the New Year! Adapting to WCOVID-19 has meant we’ve learnt so much about supporting people in new ways. Companion Calls have been a roaring success. Many people tell us they’ve found online groups more accessible, and they love that we’ve been able to offer more specialised groups for more people. During 2021, we’re keen to look at how we can blend these permanently alongside our face to face, telephone and online support. We’re also relaunching Dementia Action Week in May, and we will be running a very critical eye over all our activities to check they are suitable, accessible and welcoming to all communities. Dementia does not discriminate, so it is vital we don’t. We hope to finish the financial year in sound shape due to your fantastic ongoing support, but also due to radical changes we have made to some of our expenditure. For the first time in many years, we want to invest in our IT systems so that people using our services and supporting us have a seamless experience, which has been Sport United Against Dementia is our new campaign harnessing the so vital over the pandemic. We will positive power of sport to spearhead change for people living with sadly continue to close many of our dementia. The campaign will raise awareness of our support services offices around the country, but don’t and ensure thousands of current and former professionals, managers worry – your local staff will still be and sports fans can receive the support they need. there for you. The campaign launched in November with backing from 1966 World Most importantly, I hope I’ll be able Cup hero Sir Geoff Hurst, and our Ambassador and former footballer to actually get out and meet many Robbie Savage, who lost his dad Colin to frontotemporal dementia. more of you in person for that cuppa In January, a live Q&A event raised funds by featuring legendary and cake I’ve been promised! football figures Sir Alex Ferguson and Sir Kenny Dalglish, alongside

England manager Gareth Southgate OBE and Liverpool manager Kate Lee, Chief Executive Officer Jürgen Klopp. @KateLeeCEO

5 In the press: Dementia Action Record Apathy and FTD Week: Take a stand donation

Recent media reports about a This year’s Dementia Action The insurance industry has donated University of Cambridge study Week, 17–23 May, we’re asking £2.43 million to help us fight the suggested that apathy – a lack of people to take a stand and urge challenges that COVID-19 has interest or motivation – may be an governments to transform the brought people with dementia. early sign of someone developing social care system for the The grant – our biggest ever – frontotemporal dementia (FTD), hundreds of thousands of families came from the Association of British years before diagnosis. facing dementia. Insurers’ COVID-19 Support Fund, The study involved 304 healthy After decades of unfairness thanks to the Insurance United people who have a mutated gene and underinvestment, coronavirus Against Dementia (IUAD) campaign. that causes FTD, along with 296 of has exposed just how much people It will fund Companion Calls for their relatives who don’t have this have been failed by a system that is the next three years and enable us version of the gene. inadequate, hard to access, costly to recruit an additional 20 dementia People with the mutation and unfair. advisers, including two who speak experienced more apathy than We’re calling on governments South Asian languages. their family members without it, to rebuild social care so that every Since the launch of IUAD in and this increased much more person affected by dementia can 2017, the insurance industry has for them over two years. get the support they need to stay committed an incredible £5.5 million Experiencing apathy was linked happy, healthy and independent for to the fight against dementia, with to more problems with thinking as long as possible. an overall target of £10 million. over time. This was more so as Whether you’d like to sign up people approached the age when to the campaign or help spread developing FTD would mean the word among your friends, Making ideas they’d be expected to start workplace or community, we will having symptoms. have tailored resources full of a reality Richard Oakley, our Head of ideas and advice on the simple Our Accelerator Programme Research, said, ‘There are no ways you can take part. helps to get bold and innovative treatments at all for FTD, so it’s Sign up for updates at ideas off the ground, to deal exciting to see this adding a new alzheimers.org.uk/DAW with the challenges of dementia, piece of the FTD puzzle. including the damaging effects ‘As this just looked at the third of lockdown. It offers up to of people who get FTD genetically, Take on Trek26 £100,000 investment and we don’t yet know if apathy could business support. also be an early indicator or predict Join an epic 13 or 26-mile trek this Projects we’re currently progression in the other two-thirds summer in one of five spectacular supporting include a playful, who develop FTD out of the blue. locations across the UK. You’ll trek interactive comforter called HUG, ‘We don’t currently have an with others who know how tough a secure, prepaid debit card called accurate way to identify someone dementia can be and together you’ll Sibstar and a simple system for at risk of FTD, so we’re hoping this get us closer to a cure. making video calls through a can work with our own research All our treks are COVID-19 secure television called Kraydel. on spotting early brain changes and include all the latest social COVID-19 has had a big occurring in genetic FTD to take distancing measures. Each has a impact on our ability to support us a step closer. We need more fully supported route with regular amazing projects like these in dementia research funding to rest stops, refreshments and toilets. the future, so we urgently need get us there faster and give hope You’ll also get a medal and glass of donations to keep up this vital work. to people at risk.’ bubbly on finishing the route! Please give what you can today. Read about our research at Sign up today at alzheimers.org.uk/research alzheimers.org.uk/trek26

6 Wales care homes campaign People affected by dementia have been sharing their stories with the Welsh Parliament to urge action over care home visits during the pandemic. The Senedd’s Cross-Party Group on Dementia, chaired by MS Lynne Neagle and managed by Alzheimer’s Society Cymru, heard stories from three supporters with family members in care homes. They Open webinars: Join in included Kevin Jones in Wrexham, The 3 Nations Dementia Working Group (3NDWG) has been successfully who featured in December/ delivering webinars throughout the pandemic every other Tuesday, January’s magazine. He spoke of and these continue for anyone affected by dementia or interested in the difficulties of not being able to the condition. visit his partner Jean. The 3NDWG is made up of people living with dementia in Northern Two Welsh Government Ireland, England and Wales. The webinars are organised and hosted by ministers, with responsibility people with dementia, with professionals also included on panels. for dementia and social care, Topics covered by previous webinars – which are also available commented on how moving the online – include COVID-19, leaving lockdown, dementia activism in Black, stories were. They have committed Asian and minority ethnic communities, and social prescribing. to working with greater urgency to For webinars and more about the 3NDWG, visit www.3ndwg.org enable meaningful visits for people with dementia in care homes.

Create change A festive with DCAN ‘thank you’ Don’t miss... Michael, who has posterior cortical Join the Dementia Change Action Last year’s Elf Day has raised over atrophy, says lockdown has Network (DCAN) and help address £400,000 and counting, while our changed him. See p12. challenges facing people affected Carols at Christmas event was by dementia, including COVID-19. our most successful ever, raising Jeanne has been running more The network is supported nearly £64,000! A huge thank you Dementia Friends sessions online while by the Society and the NHS to everyone who supported these caring for her mother-in-law. See p14. in England. It involves people events – we hope that taking part affected by dementia and others helped you end a challenging year Meet Martin, working on campaigns in to help understand how NHS plans on the right note. Northern Ireland, and Stephen, Chair of to personalise care and support our Board of Trustees. See p19 and p21. can improve people’s lives. Membership is free and Dementia researchers are doing all there’s a role for everyone. You they can to keep their vital work going can feed back on plans, join during the pandemic. See p26. focus groups or take part in more in-depth enquiries. The fight continues for people in care To join DCAN or find out more homes to have meaningful visits from visit www.dcan.org.uk family and friends. See p28.

77 Life as it comes Anne is grateful for the support she’s had to adapt to living with a dementia diagnosis. Gareth Bracken meets a woman who’s adjusting to life in a different lane.

’ve had vast experience of life, problems and the coronavirus for one minute did I think I might moving in the fast lane,’ says pandemic, Anne is more than have dementia, because I was ‘IAnne, a former nurse who held happy to share her experiences. coping with life. I thought they’d senior positions within hospital ‘Dementia does get me down got it wrong,’ she says. A&E departments for many years. sometimes, but I’ve got nothing to Anne was diagnosed as ‘I was multiskilled – I had to be.’ hide – just like I’ve never hidden any being in the early stages of Anne, who is 80 and lives in of my other disabilities,’ she says. dementia, and memory problems Aberystwyth on the west coast of continue to present challenges Wales, was diagnosed with mixed Open-air life in her daily life. dementia in early 2020. Anne grew up in Wolverhampton ‘I’ll go upstairs for something ‘Now I find if I try to do too in the West Midlands as the oldest and think, “What the hell have I much, I can’t. I can’t do the things of three children. Her father died come up here for?”’ she says. I used to and I can’t forward plan, when she was nine. ‘I have to write down more my brain doesn’t go there,’ she says. ‘My early upbringing wasn’t than I used to. I never needed to Despite facing the challenges without its problems,’ she says. make a shopping list, because I of dementia, her other health ‘My mother had a pretty rough time. knew exactly what I wanted, but It was a hell of a job to bring three now I do. Dates I put down on a children up.’ big calendar. Anne applied for student ‘I also put my disabled driving Quick read nursing and worked in hospitals permit somewhere safe and Anne, who lives in all her life before retiring in 2000. haven’t seen it since!’ Aberystwyth in west Wales, She has two sons who both live Anne has diabetes, had her has received excellent in England. colon removed several years ago support from Alzheimer’s Anne enjoyed the ‘open-air life’, and uses a mobility scooter to Society since her mixed going on camping holidays with get around. She doesn’t walk dementia diagnosis. friends in a touring caravan. well following surgery for a torn She also travelled internationally tendon in her knee. Anne, 80, faces challenges and recalls trips to Russia and ‘I wasn’t a well person before with her short-term countries in Africa. She is very fond dementia, I’ve got several medical memory, and coronavirus of Wales, where she eventually problems,’ she says. ‘Dementia is restrictions have also settled with her late husband. now affecting me physically as affected her mental ‘I love Wales – the Welsh are well as mentally.’ wellbeing. lovely people,’ she says. Biggest drawback Anne is full of praise for Medical problems Anne is a very independent the Society staff and Following a car accident in 2019 person and was badly affected volunteers who call her to in which she was hit on the head, by the news that she is no longer provide advice, support Anne had an MRI scan. This led to allowed to drive. and conversation. a diagnosis of mixed dementia, ‘That hurt me more than of Alzheimer’s disease and anything, and still does,’ she says. Anne says that dementia vascular dementia, by a memory ‘I used to be a keen birdwatcher is nothing to be ashamed assessment service early last year. in the countryside and could of and should be accepted ‘I was getting depressed I have driven to the most beautiful the same as other medical suppose, because my short-term woodlands, but I need a bus or conditions. memory wasn’t so good. But not train to get out of town now.

8 Photographs: Keith Freeburn Keith Photographs:

Hear our stories Listen to people with dementia speak in their own words at alzheimers.org.uk/podcast

99 ‘I still do my own shopping – I Anne to Care and Repair Cymru, manage it in several trips on my who helped make her home safer. scooter. Or my dog sits on the She also supported Anne in getting platform and we go to the park. So a lifeline alarm, which Anne used it keeps me mobile, but losing the after a fall in her garden. car is the biggest drawback.’ ‘Rhiannon has helped me with Aside from a lodger in the top my physical and mental condition, floor of her house, Anne lives alone. she’s been very good,’ says Anne. She had been keen to move into a ‘She always knows the answers flat in supported accommodation, and the right thing to say. She but it turned out that the building shows empathy and always reacts couldn’t accommodate her mobility if I need anything. scooter, much to her frustration. ‘I know she is always there if I want her. My son has rung her too, Very careful when he’s been concerned.’ Anne feels that her moods have got Anne has also benefited from worse as a result of dementia, while regular phone contact from our her mental wellbeing has also been volunteers, including Companion affected by lockdown restrictions. Calls, which have been supporting She has been limiting her time people during the pandemic. spent outside and around other ‘The calls have been excellent, people, including friends and family. they really have, particularly with ‘I only go into town when I think what’s going on at the moment,’ it’s going to be quiet, and I’m very says Anne. ‘They listen to me careful,’ she says. and always seem to know the ‘I haven’t got the company right thing to say. They’re good I used to, and I can’t get out or at conversation and understand function as I’d want to. The isolation where I’m coming from. frightens me more than dementia, ‘We talk about all sorts of things because I know what it can do. – the volunteers are very worldly ‘It’s not been very good – I can’t and you can hold a discussion with wait to get back out.’ them. They’re very interesting to As of early January, Anne was talk to and I haven’t been bored still waiting for news about having with their company at all! They’re a the coronavirus vaccine. big help.’ ‘I’m as aware as anybody about the virus, because of my nursing Unfair stigma background,’ she says. ‘I want Anne feels that there is unfair the vaccine and I’ve phoned my and unnecessary stigma around surgery, but I don’t know when it conditions like dementia. will happen.’ ‘Dementia is an illness. I think people try to hide it, but it’s nothing Always there to be ashamed of,’ she says. ‘It Anne receives good support from should be accepted the same way friends and her sons, who have as cancer or diabetes or heart What can you do to help? continued to be there for her since failure. What’s the difference?’ You can help ensure that all her dementia diagnosis. And although things aren’t people with dementia She’s also grateful for Alzheimer’s easy right now, Anne continues to Society, with regular phone calls maintain her independence with receive the same support from Dementia Support Worker the support of those around her. from Alzheimer’s Society Rhiannon Smith. As well as providing ‘I’m getting forgetful but I’m still that Anne’s had. Please give information and advice about functioning, I can cope,’ she says. ‘I what you can. dementia, Rhiannon also referred just live life as it comes.’

10 Rhiannon and Anne.

Use our Dementia Directory to find dementia services near you – see For coronavirus advice and support alzheimers.org.uk/dementiadirectory for people affected by dementia visit alzheimers.org.uk/coronavirus 1111 Lockdown: ‘I’ve changed’

Michael Andrews in Bradford, originally from Northern Ireland, is 61. He tells us about life with posterior cortical atrophy (PCA), a type of dementia, during lockdown.

I knew the only way to get through it was to start making routines for in the house. Pick a room, totally clean the whole room. One day I’ll do downstairs, the next day I’ll do upstairs.

Switch away When I started to get busier again, although it was all through Zoom, it was bringing my speech back. I enjoy the Face it Together support group, but doing it virtually isn’t the same as actually meeting the people. That said, I don’t think I’m going to be able to mix with people inside when lockdown lifts – I’ve changed. It now feels claustrophobic and I get sort of nervous. There’s so much noise, too many distractions. I’m currently having cancer treatment and I actually think t’s hard to describe PCA. People but it’s impossible for me to work it’s affecting the dementia think I’m daft when I try to out two metres distance, I just symptoms. I have the treatment Iexplain that I can see something can’t. If somebody is on the same on a Tuesday, and until Thursday but at the same time I can’t see it. pavement as me, I’ve got to cross night I’m out like a light. It’s like Things all join together if there’s the road – that way I know I’ve got having a really bad dose of flu. a clutter of stuff. On supermarket my two metres. I start to get confused a lot shelves, all the tins merge together I live on my own and, before easier and it makes me sleep and it looks like one big blob. I’ve the pandemic, I would meet a a terrible lot. basically got to come out, give it 10 few people in town for tea An Alzheimer’s Society or 15 minutes, then go back in and try and coffee. And I had hospital Companion Call volunteer it again. I also have issues with black appointments, the occupational phones me up once a week. holes – a rubber mat or a puddle therapist coming out, and It’s a friendly conversation, looks like a hole as I get up to it. face-to-face groups for people a basic chit chat, which is useful. with dementia. I’ve always played the flute Couldn’t cope Once we went into the first and accordion, but I can’t read I was one of those people who lockdown, they were all took off me. music now, so another routine couldn’t stay indoors, I always had I’ll be honest, at the very start I is to listen to CDs and see if I to be out. But at the start of the didn’t think I was going to get can play the songs. It actually pandemic, I was sent a letter saying through it. I just couldn’t cope. It switches me away from that I had to shield. They later told was actually affecting my speech dementia, I seem to forget me that I could go out to the shops, – I was forgetting how to talk. about it when I start playing.

12 Try something new

Win £10,000!

Trek26: A brilliant day Start 2021 on a high by winning one Bea McCarty, in Cardiff, shares how taking on Trek26 last of the 362 prizes in The Big Win New year helped honour her late father-in-law’s memory. Year Super Draw, with a whopping £10,000 top prize. Our amazing raised just shy of £2,000 doing Trek26 Stonehenge last September. players raised over £500,000 by Although there had been changes because of the pandemic, people playing last year, money that went I had already pledged money and I thought, ‘Let’s just get it done!’ to fund vital support services and I did it for my father-in-law Ken, who was amazing – a special man to me. research. Entry is only £1 per ticket He died in May 2017, and it’s the best way to honour him and his memory, – good luck! as he liked walking too. Enter at alzheimers.org.uk/raffle I can’t run because of dodgy knees, but I love walking. A few years ago I did the 13-mile route in the Brecon Beacons, which I enjoyed. So I thought I would make it more of a challenge and do the full 26 miles. I got a friend to do it with me, whose mum also had Alzheimer’s. Tune into Deepness Someone to call Deepness Dementia Radio is The very day we got Ken’s Alzheimer’s diagnosis, we’d been negotiating produced by Deepness Dementia to buy a house and we’d talked about him and my mother-in-law moving Media – a community of people closer to us. affected by the condition. The I called the Society and was on the phone for about an hour with the schedule features everything adviser, who talked me through everything. She was so supportive. We from jazz and classical to rock decided to move to Cardiff instead to be closer to them. and world music, as well as talk My mother-in-law and I did a carer’s course. Without that, we could have radio, storytelling and Dementia fallen into the trap of thinking that Alzheimer’s was just about forgetting Island Discs. people you know. Listen live and find out more at Alzheimer’s Society were so supportive and caring – there was always www.deepnessdementiamedia.com someone to call. They helped us with things to put in place, like power of attorney. They grounded us with practical things, so we didn’t panic. Without them we’d have been lost for sure. Have a Unexpected emotion The day of the trek was brilliant, it was a really beautiful walk. Mile markers tell good laugh you what you’re achieving and what the money raised is going towards. Join us for Joke’s on You, It was sad that family couldn’t be there to see us cross the finish line Dementia! – a hilarious evening because of the pandemic. However, although I didn’t expect this one to be on 11 March at 7pm. Society so emotional, it still was because of what we’d achieved. Ambassador Jo Brand will headline I would absolutely recommend it. The trek was well organised and felt an online event hosted by actor safe. You don’t need experience, and you get training plans and lots of and comedian Hugh Dennis, other information. joined by a stellar comedy line Fundraising helps me to celebrate Ken and also to help the Society’s vital work. up. Tickets are free with optional Something needs to be done and Alzheimer’s Society is doing it. donation, and you only need one per household. Take part in a 13 or 26-mile trek in one of five breathtaking locations Book your ticket at alzheimers.org.uk/ – sign up today at alzheimers.org.uk/trek26 jokes-on-you-dementia

13 Finding a way

Jeanne Pring, a Dementia Friends Champion in north London, tells us about supporting her mother-in-law and running information sessions through lockdown.

y mother-in-law Connie, Change and responsibility which has an impact on my who I call Mum, is 83 and Prior to the pandemic, I would physical, emotional and mental Mhas mixed dementia – regularly take Mum out for wellbeing. I miss being able to go vascular dementia, Alzheimer’s cognitive stimulation, light exercise out and get some respite, or to disease and frontotemporal and social interaction. COVID-19 meet up with friends. dementia. She was officially put a stop to this, which has not The responsibility of keeping diagnosed early 2018, but had been of benefit to Mum. Her the household safe and running been living with the symptoms for dementia has certainly progressed smoothly is stressful, especially several years prior. I have been significantly, and she is physically having to play different roles – caring for her since 2015. more fragile. the happy face for Mum and the I started off knowing very little Looking after Mum was even concerned face for when she is of this condition and discovered more challenging at first, when not looking. that the people around me were there were so many unknowns – not any wiser. I was very lost until having to think of ways to keep Change for others I discovered Alzheimer’s Society. her stimulated at home, sourcing I became a Dementia Friends Whether I need information, essential supplies and of course Champion in October 2019. I was support, training or a place to vent, keeping her safe. only able to arrange four in-person the Society is there for me. Thankfully, we have been able sessions, but since last May I I’m now a Dementia Friends to participate in a number of virtual have delivered about 40 online Champion, an active member of activities, which have been useful. sessions and made nearly 400 the Islington Dementia Friendly Of course, these do not compare Dementia Friends. Communities steering group and with the level of interaction and I have limited available time, I volunteer in many other ways. stimulation provided by an outing. especially while caring full time, I want to help create a more Our routine has settled down but online sessions are easy to supportive community for Mum and things are now much better. organise and allow me to reach a and others living with dementia as However, supporting Mum also wider demographic. well as their carers. means being shielded with her, I hope to help people who otherwise may be lost as I was, especially with the pandemic where family members may find themselves having to care for their loved ones with little or no physical outside assistance.

Become a Dementia Friend by taking part in an online session Jeanne and Connie. or by watching our online videos. Visit dementiafriends.org.uk to get involved. 14 Meet the researcher: Sana Suri

Alzheimer’s Society Research Fellow, Head of Heart and Brain Group at the University of Oxford.

of our heart and our body’s large blood vessels affect the brain and memory as we grow older. I combine different kinds of scans to obtain a complete picture of how our lifestyle can influence changes in the brain’s volume, connectivity and blood supply. The long-term goal is to help pinpoint how and when in our lifespan we can modify our lifestyle, and especially our heart health, in order to delay dementia.

What difference do you hope this will make? Dementia can have a lasting societal impact, and it is particularly meaningful to be leading research into how to prevent or delay its onset. In 2020, I had the exciting Favourite things? age-related disorders. This is what opportunity to present expert Book – This is going to hurt first drew me towards dementia testimony at the House of Lords by Adam Kay is one of my research, and it has since fuelled my inquiry into the government’s favourites, especially in the decade-long passion for dementia healthy ageing policy. It was current times. outreach, policy and public especially fulfilling to draw on my Way to spend time – Board engagement. own research to help develop games, puzzles or evidence-based policies, and I countryside walks. How has Alzheimer’s Society hope to keep engaging with Memory – Any large family supported your work? policymakers on that front. gathering, they’re always a The Society has given me an source of laughter, dramatics invaluable stepping stone to In what direction would you and happy chaos! becoming an independent dementia like to take your research in research leader. It’s through my future? Why dementia research? fellowship that I have been able My long-term vision is for our During my postgraduate studies, to lead a large-scale dementia work to guide clinical and policy I learned that a lot of biomedical neuroimaging study and establish decisions on dementia prevention. research has focused on extending my own research group. I am interested in the prospect our lifespan without an equal of lifestyle-based preventative emphasis on maintaining quality of What are you currently interventions that are personalised life in older ages. working on? and involve a range of approaches – In our ageing society, one of We know that ‘what’s good for the for example, exercise as well as the biggest challenges will be to heart is good for the brain’, but we diet and mental stimulation – and understand why some people go on still don’t fully understand why. My I hope to build towards a large to lead relatively long and healthy research examines this heart-brain clinical trial in that field. lives, while others are vulnerable to link, investigating how the health

15 How I enjoy the outdoors

We ask people about how they keep active and well, whether they have dementia or not. This issue, we hear about getting in touch with nature.

George Gallimore, 62 in June Lim Bhatty, 59 in Alison Anyon, 61 in Shropshire Greater Manchester Leicester I love gardening and walking. We Walking in rural settings and Walking more, exploring the have redesigned our garden to rediscovering my old hobby of wonderful countryside and stately make it more manageable. We birdwatching. Usually out for three homes. I have taken up running too. have two raised beds so that I don’t to four hours enjoying the sights I surprised myself with achieving have to kneel down as much. I am and sounds of nature, and the odd 5km – my first in 40 years after trying to put in lots of perennial egg butty. The exercise element leaving school. I was influenced by a and herbaceous plants with lots of cannot be understated for us both story I read about a group of ladies colour, so we can enjoy the garden – me to provide a diversion from with cancer doing a sponsored run all year round. the anticipatory grief I find myself around a park. My family are super I can’t do as much walking encountering, and my wife to keep active, and my youngest is my as a few years ago due to my her in the best of health for as long personal trainer with my running! fibromyalgia, but I still like to get as possible. Couch potato expertise out and about, even if it’s only into is no good for anyone, particularly in town and back. However, I do need the dementia world. to have a stop and sit down in town before coming back. Relaxation, fresh air, sunshine, listening to the birds sing, watching our cat in the garden, collecting leaves in the autumn, berry picking – these are all benefits from being outdoors. Rebecca Morris, 34 in Conwy Steven Litchfield, 69 with I like to go for a really long walk Alzheimer’s in Nottingham with my husband and two dogs, (facilitator of Friends for Life at least two hours to tire the dogs DEEP ‘Ay’e-Up Mi Duck’) and ourselves out. I like smelling the We did virtual walks on video for different flowers, picking wild garlic those who were still in isolation and blackberries and trying to spot Stay well and delivered bedding plants to birds and different animals. Your age and genes affect your improve their gardens. We are also I’ve lost weight with all the extra risk of developing dementia, but involved with In at the DEEP end, walking. Any tensions or stresses I you can’t change them. Things a dementia group for swimmers – feel before the walk are aired. If I’m you can change include keeping they switched to weekly short walks feeling under the weather or tired, your mind and body active, due to unavailability of pools. We try then the fresh air makes me feel enjoying healthier food, not to share the load with others, who better and the endorphins released smoking, drinking less alcohol, are willing but not always able, as keep me smiling for a long time after. staying in touch with people, and we know dementia means change dealing with any health problems. without warnings. If you already have dementia, the same things can help you to stay well. Visit www.nhs.uk/livewell for health and wellbeing advice for everyone.

16 Q&A: Jitendra Kaumar Gupta

Jitendra Kaumar Gupta in Bradford, aged 73 with dementia.

people in the same scenario and then I find I’m not the only person suffering with this. We can talk to each other about what we’re doing and how we’re feeling. Judith from Alzheimer’s Society keeps calling me every week to ask about my welfare and see if I need help with anything. She’s very sympathetic. It gives me more confidence that somebody is behind me and with me if I need to deal with something.

What song or tune sums up your life so far? I usually like Indian music, old Indian music. Classical music and film music from the 70s, 80s and 90s. I can’t pick one song though!

What single thing would improve your quality of life? When you have dementia, you need a good, close friend with you, whether it’s a wife or someone else. You need somebody to talk to and share your feelings with, someone you have a good relationship with. I’m lucky I already have that – I can only think of the life that I have. What’s changed most since What would you take to your diagnosis? your desert island? What is your most treasured Some people are very friendly, I wouldn’t take a CD or book at all. possession? very good, but some have been I’d rather take a good friend with My confidence. If you have got very different – their attitude me. I’m not interested in CDs or confidence in yourself then you has been completely different, books – if my wife or a friend is can achieve anything, you can talk they see me in a very different with me then I’ll be alright. with people, meet with people. I’ve way. Probably they don’t seen people in the same age group, understand what I’m going How has Alzheimer’s they’ve done so much in life, but through, and sometimes I feel Society helped you? they still don’t have confidence. more depressed. People should The Society has helped in giving Confidence is the most treasured be more friendly. me confidence. I meet other possession, that’s what I feel.

If you have dementia and would like to answer our questions for a future column, email [email protected]

17 We are here for you Phone support Our dementia advisers are available on the phone seven days a week, providing information, advice and emotional support to anyone affected by dementia. Online support ‘No matter what Find a wide range of information on our website to help you understand and live with dementia. Visit our online you’re going through, community Talking Point to connect with others in a there is someone who similar situation and search for local support services on our dementia directory. understands. I don’t Face to face support feel alone now.’ Face to face support services are not currently running Person living with dementia due to coronavirus. When it’s safe, our dementia advisers will connect you to the relevant support in your area, from one-to-one services to local support groups. Contact us today 0333 150 3456 alzheimers.org.uk/getsupport 18 Registered charity No. 296645 19594SD Beyond stalemate and crisis Martin Reilly, Public Affairs and Campaigning Officer, looks back on a pivotal year in Northern Ireland.

Significant change It’s clear that the ongoing reform of adult social care across Northern Ireland needs to produce a significant change for the most vulnerable people. Their rights and wishes on how social care is delivered must be put at the centre and the voices of people living with dementia need to be listened to. While our current focus is to ensure government does all it can to help keep people safe, we’re also working to make dementia a standalone priority for the health service as it ‘builds back better’ from the pandemic. We are here for you he restoration of devolution Inspiring action Phone support to the Northern Ireland I heard from families who couldn’t Our dementia advisers are available on the phone TAssembly back in January visit a parent in their care home on seven days a week, providing information, advice and 2020 marked an end to three a milestone birthday, saw people in emotional support to anyone affected by dementia. years of political stalemate. I, tears as they recalled losing a loved along with so many others, looked one without having the chance Online support ‘No matter what forward to finally seeing our MLAs to say goodbye, and signposted Find a wide range of information on our website to help getting back to work. My role had families to much needed emotional you understand and live with dementia. Visit our online you’re going through, just commenced and it was an and wellbeing support. We drew on these hugely community Talking Point to connect with others in a opportune time to be pressing there is someone who MLAs, who were keen to show that emotional stories to inspire action, similar situation and search for local support services devolution mattered. so that the government would on our dementia directory. understands. I don’t However, within a few short fully implement the ‘care partners’ feel alone now.’ weeks, Northern Ireland’s new model in care homes. This means Face to face support ministers found themselves amid using testing and PPE so that Face to face support services are not currently running Person living with dementia a global pandemic. Our health designated visitors can continue due to coronavirus. When it’s safe, our dementia and social care system had to help support a relative or friend advisers will connect you to the relevant support in your struggled without a government, living in a care home. Add your voice to our area, from one-to-one services to local support groups. and it was now under intense, Sharing real-life stories is the campaigns in Northern Ireland, creaking pressure. best way to effect change, and I Wales and England – visit Unfortunately, just as people know from personal experience alzheimers.org.uk/campaign living with dementia bore the worst that people who have an illness to find out more. Contact us today of the coronavirus pandemic in often want to shape things in a England and Wales, Northern more positive way for those who 0333 150 3456 Ireland was no different. come next. alzheimers.org.uk/getsupport 19 Registered charity No. 296645 19594SD In your area

Knitting champs Alderman Fielding and his wife A north London knitting group is Phyllis showing their support. providing vital stimulation for Two homes people with dementia by donating twiddle muffs to Alzheimer’s Mayor’s choice for just £3 Society and others. Alzheimer’s Society has been You still have a chance to win a The Hornsey Charity Knitting chosen as the official charity of stunning property in Snowdonia Group, started by Ching Smith, is the Mayor of Causeway Coast while raising funds for the Society affiliated to the Alexandra Women’s and Glens Borough Council in by entering a prize draw by Institute. Members knit twiddle Northern Ireland. Valentine’s Day. Tickets are only muffs along with cannula sleeves, Alderman Mark Fielding decided £3 each or four for £10. lap blankets and shawls, gifting to support us in this way after Capel Jerusalem, near Tywyn them for local hospitals and care seeing how dementia affected his on Cardigan Bay, is a chapel that’s homes as well as people supported father in later life. been lovingly converted into two by the Society. Twiddle muffs He said, ‘I saw at first-hand how luxury homes by Martin and Sue come with beads, buttons and someone close to me was affected Stephenson, with seven en-suite contrasting textures to help keep by the condition as my father had bedrooms and a sauna, hot tub a person’s hands busy with dementia in the last two years of and baby grand piano. After living interesting sensations. his life. For most of that time he in one home and letting the other The group was determined was cared for in a very professional out, the couple are moving back to continue despite not being able manner in a nursing home. to Yorkshire and wanted to help to meet up due to coronavirus ‘I am thankful he had a long life fight dementia. restrictions. and developed dementia at a later ‘We have sadly lost two relatives One member, Kathleen, said, stage. However, there are some to this terrible disease,’ said Martin, ‘When I’m knitting and embellishing families whose loved ones live with ‘and my dad was diagnosed with the twiddle muffs, I think of my mum dementia for a considerably longer dementia a couple of years ago. and how much she would have time and often they are cared for ‘The aim is to sell enough tickets enjoyed them. And wish I had known in their own home by husbands, to be able to donate £100,000 to about them when she needed one.’ wives, partners or children which Alzheimer’s Society, to help them Siobhan Cronin, Dementia brings its own challenges and in the important research and Navigator at the Society, said, difficulties for everyone.’ support services that they offer.’ ‘They have been doing such good Aoife McMaster, Dementia Tickets are on sale until supportive work for years, and they Support Worker, said, ‘We’re so 14 February and the winner, who’ll really do make a difference. We have grateful to the Mayor for get the keys to the property if many isolated, low income families choosing us as his charity of enough tickets are sold and a really struggling with advanced the year. The pandemic has cash prize if not, will be drawn on dementia needs. These items are had a significant impact on our 1 March. so useful, bringing comfort and fundraising, so this support will Visit www.winadreamproperty.co.uk stimulation to people in the later make a huge difference.’ to buy tickets before 14 February. stages of the condition.’

20 Spotlight:

Stephen Hill, Chair of our Board of Trustees Why dementia, why on several occasions and it is a Most important thing the Society? powerful motivator. learned from a person Several family members have with dementia? had dementia, including my Worst advice you’ve Many things, but perhaps among grandmother and more recently been given? the most important is how reaching my late father. It seems to me that One of my tutors at university (a out to people (they won’t always dementia still lives in the shadows long, long time ago) advised me to ask for help) and letting them and although much progress has give up his subject and called me a know they are not alone is been made, it is still an ‘underdog’ moron, which I thought was pretty incredibly comforting. Many when set against, say, cancer. harsh. Fortunately, I ignored him and people can, perhaps with our ended up doing OK! help, continue to live independently How to fill an unexpected for years in their own home. day off? Biggest priority for Knowing this can ease their fear My triathlon coach would like me to coming months? of losing control. get out and do extra training, but I’d Definitely helping and encouraging be tempted to settle in and watch the senior leadership team to Most looking forward to? Netflix, especially on a winter’s day! develop the Society’s strategy. The I am looking forward to getting current health crisis has shown that back, probably gradually, to a Proudest moment? we are all going to have to work in normal life, and getting vaccinated. The best part of being a leader of different ways and has highlighted I miss not being able to travel to an organisation is when you see real problems with social care – the see my family, and more selfishly, people flourish and go on to do Society’s role has never been more I miss not being able to get out great things and know that you important. Our strategy needs to and race my triathlons! played some small part in that. I’ve answer how best to deliver what is been fortunate enough to see that really needed.

Stephen at the World Championship Triathlon in Chicago in 2015.

2121 Keeping it all together Yvonne Ducasse is doing all she can to keep her mum safe during the pandemic. Gareth Bracken meets a daughter who’s staying strong for her family.

Quick read Yvonne Ducasse is striving to keep her mum Joyce, who has dementia, safe and well during the pandemic.

It has been an extremely difficult time for Yvonne, who previously moved from London to Buckinghamshire to live with Joyce.

Having cancelled Joyce’s carers, Yvonne is single-handedly supporting her mum and young family, while also working.

Despite the challenges, Yvonne wouldn’t want Joyce to be supported by anyone other than her family.

22 t’s been a really tough time couldn’t get hold of her. Eventually, With Yvonne working in all round and I’m feeling the I went into town and found her London to support her family, in a ‘Ipressure, but I can’t crack and sitting on a bench. She said she demanding human resources role go down as everything would fall was waiting for a taxi, but I for a financial company, carers apart,’ says Yvonne Ducasse. checked her phone and she would come in to support Joyce. She’s been working four days hadn’t called one.’ Although things were far from a week while single-handedly easy, the arrangement provided supporting her mother and young Daily battles consistency and security for Joyce. family through the pandemic. Deciding that something had However, everything changed with ‘I can’t tell you how stressful it to change, Yvonne moved from the arrival of COVID-19. is to balance work, my children’s London to Buckinghamshire, to ‘I was wary of the virus very wellbeing and Mum’s safety. I feel a house that was also suitable early on, so I stopped Mum’s carers like a hamster on a wheel as I try for Joyce. and our cleaners, to minimise the to be everything to everybody,’ she says. ‘But if Mum died of the virus I’d feel like I’d failed her, I’d never forgive myself.’

Core values Yvonne lives in Buckinghamshire with her two children, age four and 12, and mum Joyce, who’s 80. Joyce was diagnosed with Alzheimer’s disease in 2017, while still living alone, after Yvonne became concerned about changes in her Mum’s behaviour. ‘Her washing was piling up, she wasn’t cooking properly and she was slowly going downhill. I took her to the GP who referred her to the memory clinic,’ she says. Joyce is a former nurse who has always been a very caring person. ‘She was quite dynamic, good at forward planning, very kind and generous, shrewd, smart and well put together,’ says Yvonne. ‘The dementia hasn’t affected her core values – she still asks if there is anything she can do for the children.’ Following her diagnosis, Joyce’s memory problems continued to present challenges. ‘She was frequently losing her keys and wasn’t doing her shopping as she used to. She’d forget how to turn the TV on and would just sit in front of it,’ says Yvonne. ‘The thing that really stood out for me was when she disappeared from home one Sunday and I

2323 risk,’ says Yvonne, who also took ‘She’ll also swear blind she’s Yvonne strongly believes that her children out of school. done things that she hasn’t. I have Joyce is better off living at home. ‘I was home schooling, working, to have a conversation with myself, ‘I know there are some great cooking and cleaning, and having to let her be.’ care homes out there, but God battles with Mum every single day knows if Mum would have survived,’ about her hygiene or getting out Best place she says. ‘I feel like Mum is in the of bed. I’ve taken away all the Joyce has chronic obstructive best place here.’ support systems that were there pulmonary disease and bronchitis, To make matters worse, to make my life easier, to my own and has been shielding throughout Yvonne is also in an ongoing battle detriment. It’s been very tough, as the pandemic. She only leaves the with the council over social care the responsibility has been 10- house for medical appointments. support for Joyce. fold since COVID, but if anything ‘If I tell her about the virus, ‘When Mum was living on her happened to Mum, I’d have to live she’ll understand it in the moment, own and having to pay rent, she with that.’ but she doesn’t understand got free social care. But when we the dangers and risks, so I can’t moved here they started charging Even more alone be complacent about it,’ says her, because even though she’s Yvonne found the early months of Yvonne, who has been encouraging contributing to the mortgage, the virus difficult, but life became Joyce to do chair exercises to she isn’t legally liable to do so. I’m even worse later in the year. stay active. challenging it, because I think it’s Although her employer is very awful and really unfair,’ says Yvonne. understanding and provides flexible working arrangements, Yvonne still Very precious finds herself working until midnight Yvonne says that Joyce’s on some occasions. She’s even appreciation helps to keep taken over the care of Joyce’s her going. African grey parrot, without which “ ‘Sometimes I feel like I don’t she worries her mum might decline I know there are have the capacity or energy, but even further. when Mum says, “You’re a really ‘At least the adrenalin kept some great care good daughter to me,” that you going the first time round, resets me,’ she says. but this time I’m just tired,’ she homes out there, Yvonne also doesn’t want says. ‘The struggles have anyone to feel sorry for her. morphed into daily life for me. but God knows ‘The responsibility is on my I don’t see family or colleagues shoulders and I’ve got to keep the and life has almost been on hold. if Mum would have plates spinning, but it’s my choice It’s really isolating. and I’m not unhappy,’ she says. ‘People say they understand, survived,’ she says. She also considers whether but I don’t think they really do. But others in a similar situation might I also don’t want to complain about ‘I feel like Mum relate to her experiences. things too much, because it just ‘I’ve got nothing to be ashamed becomes diluted.’ is in the best of, and it may help people to Joyce’s memory problems can know that they aren’t alone, and also be challenging. place here. that it’s OK to feel how they feel,’ ‘Mum gets fixated on stuff she says. that she hasn’t got control over And despite the major anymore, always asking me the challenges she faces, Yvonne same questions over again,’ says wouldn’t have things any other way. Yvonne, who feels that Joyce has ‘Mum feels secure with her deteriorated slightly during the ” family and is around people who pandemic. ‘I don’t want to appear love her. She is very precious, and rude or ignore her, but how do you we know what she has done for us deal with that every five seconds? in our lives,’ she says.

24 What can you do to help? You can help support Connect with other people who are caring people affected by for a relative or dementia through our friend with dementia. online community, For coronavirus advice Please give what Talking Point – see and support for people you can today. alzheimers.org.uk/ affected by dementia, visit talkingpoint alzheimers.org.uk/coronavirus

2525 No stone unturned Dementia research has been badly affected by the pandemic. Gareth Bracken hears how Society-funded researchers are doing everything they can to keep their vital work going.

s with so much else, ‘Unfortunately, PREVENT has coronavirus has had a been significantly impacted by Asignificant impact on the pandemic,’ says Katie Wells, dementia research. Many projects the programme’s National were delayed or put on hold as Research Co-ordinator. researchers found themselves ‘During the first lockdown, locked out of labs or their we were unable to continue with participants unable to travel to in-person research and there was study sites. Some researchers had very little of the assessments to drop everything and help the that we could complete remotely. Quick read NHS’s response to COVID-19. Our researchers used this time to Researchers have been analyse data already collected. Dementia research, adjusting and readjusting to each ‘It was then a slow but thorough including work funded by change, picking up the pieces, process to restart the study visits Alzheimer’s Society, has restarting experiments and safely in person.’ been badly affected by the making up for lost time. However, The reopened centres have coronavirus pandemic. strict social distancing has meant social distancing measures in less time in labs and new daily place, with staff using PPE and The PREVENT programme, challenges. The consequences of participants wearing face masks. which studies dementia recently announced lockdowns During England’s second lockdown, risk, lost months across the UK remain unclear. the research was classed as following the first national essential and so the study was lockdown, and still hasn’t Reopening sites able to continue. fully returned. Before the pandemic, participants in One participant said, ‘I was the PREVENT dementia programme proud to volunteer for such a Another study, Continuing visited universities in London, Oxford, worthy programme and delighted Compassion in Care, is Cambridge, Edinburgh and Dublin that it was up and running again facing severe delays for memory and thinking tests, after the first lockdown. I had every because COVID-19 studies brain scans and to give samples. faith that the PREVENT team have been prioritised PREVENT, part-funded by would have all the necessary for approval. Alzheimer’s Society, is finding precautions in place to keep out what increases the risk of me safe.’ The pandemic has also dementia for people decades Professor Craig Ritchie, hit dementia research before any symptoms start. who leads PREVENT from funding, and we’ve The visits were all suspended the University of Edinburgh, joined with others to call from mid-March until October, remains excited about the for urgent support from and even then only two of the five programme’s prospects. the government. sites reopened. Recruitment for ‘The energy and determination the study is likely to be completed around PREVENT has never nearly a year later than planned. diminished, and we are very well

26 set to generate the knowledge and Nuriye also used knowledge deliver the impact for improving gained from earlier phases of her brain health and dementia study to help colleagues develop prevention,’ he says. a guide to support carers in making difficult decisions during Maintaining compassion the pandemic. Continuing Compassion in Care is another Society-funded study that Urgent funding has had to adapt. The research The pandemic has also hit is developing a way to measure dementia research funding. how people provide or experience Alzheimer’s Society is currently compassion when caring for a funding 183 projects with a relative with dementia. It’s also combined value of £37 million. To exploring how to help carers protect our investment in them, manage their emotions during we couldn’t award any new difficult or stressful times. research grants in 2020. Initial face-to-face interviews Earlier this year, we joined with carers in south-east forces with Alzheimer’s Research England were delayed by the UK and the dementia research pandemic, though they were community to call on the eventually completed. government to urgently support A large survey, which will be used dementia research. to test the new measurement ‘Before the pandemic, dementia tool, has been severely delayed researchers were making a as it requires approval from an discovery a day. Momentum was ethics committee that’s currently building and decades of hard prioritising COVID-related studies. work was beginning to pay off,’ To make use of the additional says Hannah Churchill, Research time, Nuriye Kupeli, a Senior Communications Manager at the Research Fellow at UCL (University Society. ‘Without urgent additional College London), has added funding, the trail of discoveries questions to the survey that will go cold and the prospect of relate to carers’ experiences a dementia-free future will slip during the pandemic. further away. ‘Although I developed a tool ‘Research is the only way to to measure compassion before beat dementia and it must not be COVID, I will now be assessing an afterthought as we emerge What can you do to compassion following a pandemic,’ from the pandemic.’ help? she says. ‘It will provide an You can help get vital insight into how compassion research back up and was experienced and how carers managed their emotions during a running to improve the particularly difficult time.’ lives of people with dementia, now and in the future. Please give what you can today. Our Research Network For more about our members use their research programme, experiences of dementia visit alzheimers.org.uk/ to drive our research – research find out more at alzheimers.org.uk/ researchnetwork 2727 We’ve been campaigning for people with dementia Meaningful in care homes to be able to see family and visits friends safely. Gareth Bracken hears from relatives desperate for close contact.

ince last April, Alzheimer’s Society has campaigned Sfor people with dementia in care homes to have meaningful visits from relatives or friends who provide vital support. Window visits, excessive use of PPE and perspex screens aren’t practical for so many people living with dementia, who need to hug and hold hands with visitors. We joined other organisations as One Dementia Voice to call for family carers to get key worker status, with COVID-19 testing and visiting rights. Our supporters – people like you – contacted your national and local elected representatives tens of thousands Quick read of times to share real-life experiences and concerns. Our supporters have helped call for safe care home visits While guidance for safe visits for people with dementia, though the latest lockdowns in Northern Ireland and Wales had have meant more restrictions. been announced, we secured a debate at Westminster in Having just seen her mum for the first time in nine November to discuss just how months, Sarah-Jane Whitfield was devastated when important family and friends are in visits were stopped again. the care of people with dementia. The government agreed to Talking Point member Stefan expressed his devastation at pilot a care visitor scheme in 20 being kept away from his partner for the past 10 months. care homes in south-west England, and we recommended how visits With other organisations in One Dementia Voice, we’re would work best. In early December, continuing to campaign for meaningful visits for people updated guidance set out how care with dementia in care homes. home residents in England could be reunited with their loved ones.

Urge the government to do more for people affected by dementia at alzheimers.org.uk/campaign 2828 Grieving again ‘She is my best friend and we ‘Maybe we’ve been gutsy, but Before many people were able did everything together, but now to us the risk of malnutrition, to take advantage of new visiting we’ve been forcibly separated dehydration, isolation and guidance, stricter measures were for 10 months,’ he says. ‘I still loneliness outweighs the COVID reintroduced, ending in a return have no idea when I will be able risk,’ says Adam. ‘If a visit is to lockdowns across the UK by to see her again properly – it’s an person-centred, it can boost a early January. endless nightmare. resident’s mental health. Sarah-Jane Whitfield, whose ‘The longer this endures, the ‘It’s been fantastic to show mum has Alzheimer’s, managed more harm is being done, not just what’s achievable and what can just one close-contact visit at to the imprisoned care home be done.’ Crossways care home in Sutton, residents but also to those who Adam will keep on campaigning south London before restrictions love them. Not only is there no for people to stay connected. tightened again. perspective on the risk versus ‘I’m proud to be championing ‘I cannot begin to tell you how actual harm being done, but there a way back to normality in emotional and amazing it was to is no evidence of any empathy, care homes,’ he says. ‘Visiting see my mum after nine months,’ understanding or common sense should be the right of every she says. ‘She doesn’t recognise in those who have the power to family carer, period.’ her grandchildren or friends change the situation. The fight continues to make anymore, just me. I was able to ‘Mine is just one small story sure people living with dementia hug her and sit with her, and I have among so many about the myriad in care homes have meaningful been able to paint her nails and do and devastating emotional visits, and for guidance to be some colouring with her. impacts of this continuing, implemented properly. ‘Now the government states inhumane visitor lockout.’ Fiona Carragher, our Director I cannot visit even though I was of Research and Influencing, having a COVID test. I have grieved Keeping connected says, ‘The government must do the loss of my mum even though Adam Purnell is Care Lead at everything it can to keep people she is alive, and now I am grieving Kepplegate, a care home in in care homes safe from the virus, all over again. I’m devastated. My Preesall, Lancashire. He’s also an but must act with compassion mum may forget who I am. I feel I ambassador for John’s Campaign to prioritise meaningful visits have abandoned her.’ – part of One Dementia Voice continuing in a safe way, allowing – and a Rights for Residents residents to have the one thing Risk versus actual harm campaigner. that matters most.’ Some relatives haven’t even been Kepplegate offered indoor, able to enjoy a single face-to-face socially distanced visits for visit. Sharing his experiences on relatives as early as June, and has our online community, Talking Point been facilitating close-contact member Stefan has described his visits since December, using COVID devastation at being apart from testing. These continued in mid- his partner of 35 years. He’s only January after relatives approved been allowed window and garden the home’s latest safety measures. visits, which haven’t been very appropriate.

What can you do to help? With your support, we can continue campaigning for people with dementia in care homes, ensuring they can have Call our Dementia Connect support meaningful visits from relatives or friends. line on 0333 150 3456, or for Welsh Please give what you can today. speakers call 03300 947 400. 29 Letters To:

Your letters, emails, social media posts and messages on our online community.

‘Please do not bring me to shame’ My uncle Ivan is in his early 80s, questions to those that my mother Barbara says that she began living alone in Ireland. My cousin’s had to answer, here in England, to cry and I was very moved, too, widow, Barbara, lives nearby and when she was at the beginning of when she told me about it. My she has become responsible her illness. brother Mark and I were very lucky. for Ivan as his behaviour has Ivan told the nurse that a picture Mum’s ‘ladies’ – her carers – always increasingly shown him to have of a lion was a dog, the camel was treated her with so much love and some kind of dementia. This has a horse, a hippo was a cow and respect. Ivan is able to articulate been exacerbated by the social he was unable to carry out other his need and he obviously thought restrictions the pandemic has tasks in the test. At the end of the it as well to do so. brought to bear on him. meeting the nurse gave Ivan some Dawn Butler Recently, Ivan’s doctor asked paper and a pen and asked him to for him to be assessed by a write her a sentence, anything he Congratulations to our letter of the specialist nurse. A very friendly lady wished. Ivan wrote, ‘Please do not month writer, who will receive a Letter of the month visited Ivan and asked him similar bring me to shame.’ bouquet of flowers.

Money over need? My 92-year old mother, who had I am not prepared to let the period you believe someone dementia, sadly passed away matter go, if only for the sake was entitled to CHC. However, late last year. I believe there were of other people going through a doing this for your late mother’s serious mistakes made, based similar situation. care may be no easy task. purely on money and not on my Steve Catterall, Lancashire Of course, the details of mother’s health needs. each person’s situation can I imagine most people will not Society response make a big difference – call our have heard of NHS continuing Getting the support you’re entitled Dementia Connect support line healthcare (CHC), and neither to, including CHC, is far too on 0333 150 3456 to speak to a would I if a friend had not told me difficult for far too many people dementia adviser. about it. The NHS has an obligation affected by dementia. It’s horrible Beacon, a social enterprise, to ensure that, before anyone is to be left feeling that you haven’t can provide up to 90 minutes of asked to pay for their care home even been offered the help you free specialist advice on CHC fees, they are given the chance to should have had. issues – call 0345 548 0300 or be assessed for CHC. Unfortunately, there are a visit www.beaconchc.co.uk A full assessment for CHC number of situations where a for my mother should have been CHC assessment isn’t required. To add your name to our done before leaving hospital or If you’re assessed for CHC and campaigns for better care and immediately after discharge, but refused, then there’s an appeals support for everyone affected I firmly believe that this was not process. In England, if there’s by dementia, please see done to avoid having to pay for been no assessment, you alzheimers.org.uk/campaign her care, which they would have could ask the CCG (clinical to do if she was found to be in commissioning group) to carry need of CHC. out an assessment covering the

30 Seen elsewhere…

Through her Pontio’r Cenedlaethau Twitter account, promoting intergenerational work in Gwynedd, Dementia Friends Champion Mirain Roberts celebrated another session with further education students at Coleg Meirion-Dwyfor:

Presenting my second online @DementiaFriends session to @meiriondwyfor students this morning. It’s great that we can still offer the sessions online and teach other about @AlzSocCymru @alzheimerssoc 5 main messages!

On Facebook, when we said how heartbroken we were to learn that Dame Barbara Windsor had died, many of you shared your own wishes and experiences of loss, including Claire Peacock in Staffordshire:

RIP Dame Barbara a true legend. My condolences to her family and friends. My dad passed 14 years ago from this awful disease. Fly high Dame Barbara ♥︎ much love to everyone who is fighting this and their families ♥︎

After losing her husband to dementia, Talking Point member Amethyst59 shared her deep appreciation for our online community:

I just could not have made the long journey I did without the support I got from this forum, the friends I have made through it. What a wonderful resource it is. If you are home alone caring, there is always someone to contact. If you need advice, someone has travelled the road before you. Thanks to Talking Point, I was able to ensure that I really made the right decisions, and that we made the best of the life that we had together.

Your turn Switching to email is easy! Just enter your name, postcode and email address at Tell us what you think – email alzheimers.org.uk/switch to get the magazine by email [email protected] instead of in the post. The more who switch, the more we Letters for the April/May can focus on producing the print magazine for people who issue need to arrive by especially benefit from getting it through their letterbox 3 March. Views expressed (and if that’s you, then please don’t worry – you don’t need are not necessarily those of to do anything to continue receiving the magazine this way). Alzheimer’s Society. Letters To switch today, visit alzheimers.org.uk/switch may be edited.

3131 Consumer panel People affected by dementia try out a range of products that are designed to be helpful at home and easy to use.

Help at home Our West Sussex consumer panel Gordon added that it’s ‘very Jan and Ian loved the design met again over Zoom to say much five-star, impressive’. of this lamp, however. what they thought of three lights, A second product, the 3-in-1 ‘I just want to hug it, it’s very three remote controls and a portable daylight lamp, can be tactile,’ said Jan. ‘I can’t tell you device that speaks the time. used as a torch, desk lamp or anything bad about it.’ phone charger and holder. Ian said, ‘It’s nice and bright, LED lighting Chris said, ‘Mick really liked the and you can point it to where The ‘Get up in the night’ sensor lamp, he’s been using it since we you want.’ light can be placed anywhere and got it. It’s got good instructions The sensor light has been shines for 30 seconds if it senses on the front, and he liked using popular in our online shop for a movement in the dark. it as a mobile phone holder as while, and based on this feedback Lindy said, ‘It was very easy well. It’s good for reading at night, we’ll also be stocking the 3-in-1 to set up and brilliant – really, especially as you can dim the light.’ lamp and the desk lamp. really effective.’ Stan said, ‘I was able to charge ‘We had it sitting outside the it using my mobile phone charger – Remote controls bedroom,’ said Peter, ‘and every that was after charging my mobile Panel members tried three remote time the cat walked past it came phone from the torch.’ controls that have large, clear buttons, on like a light show!’ ‘It’s easy to hold, a nice but struggled to set them up. John said, ‘It’s a well-made product,’ said Jim. The Easy TV-5 and Easy TV- product. We’re using it in the The Daylight touch desk lamp 10 operate your TV when linked hallway at the bottom of the stairs, is adjustable to a wide range of through the existing remote control. so it comes on when I come down positions and sliding your finger John and Joyce gave up after in the night to use the loo.’ over a scale on its base changes trying to link the Easy TV-5. Alison said, ‘You could put it its brightness. ‘I think it’s the sequence of in a cupboard to come on when ‘It worked easily and well,’ buttons,’ said Joyce, ‘If you don’t you open the door. We had it on a said Pat, ‘though it’s not a style get them right in time, then it skirting board.’ I would choose.’ doesn’t link up.’

3232 Roger said, ‘I tried it first on my Talking time pal Prices: ‘Get up in the night’ sensor smart TV and had some success, The Talking time pal announces light £16.62, 3-in-1 portable but the buttons didn’t do what the time and date when you press daylight lamp £39.99, Daylight they were supposed to. I tried it on a button, and it can be carried in a touch desk lamp £75, Easy TV-5 an older TV and got it all working, pocket or attached to a key chain and Easy TV-10 remote controls and now it does work on the smart or lanyard. £10.99, HandleEasy universal TV too. It is mind-bending to get Although Stan found it tricky remote control £24.98, Talking time right!’ to remove the battery cover and pal £13.86. The HandleEasy universal needed help setting the time and remote control is designed to work date, he said, ‘Once set up, it was a Visit shop.alzheimers.org.uk for with most devices, though setting doddle.’ products to help people affected it up was again a challenge. Joan said, ‘It’s very easy to use by dementia to live well at home. Lindy said, ‘I gave up on the first and uses a very clear voice.’ You don’t have to pay VAT on some day, but the next day I looked it up Lindy said it wasn’t the right products if they’re for use by a on YouTube and it was easy after product for Peter, as she kept needing person with dementia or other that.’ The only thing she hadn’t to reset it after he inadvertently condition – tick the box stating been able to get it to do was turn changed the time while fiddling with it. that you’re eligible for VAT relief the TV on or off. John wore it around his neck, at checkout. We feed these comments back adding that it’s safer giving someone to suppliers so they can continue the time on the street without risking to improve their products. your phone or watch being stolen.

Win LED lighting See p39 for a chance to win a sensor light, 3-in-1 lamp or desk lamp.

3333 Book group

We read Shobna Gulati's memoir of caring for her mother, who had dementia.

Remember me? ‘The book touches on so dementia in Hindi or Punjabi that many different topics apart from doesn't feel stigmatising, and the dementia – culture, religion, dignity, role of ‘sharam’ – shame – in her family life, psychology, racism, pride, community. problem-solving, emotions, and so ‘However, being able to express much more.’ her cultural identity is also key to ‘Shobna has had an incredible Asha living well with dementia,’ says life,’ says Andrew Rodwell in London. Addy. ‘For example, the taste and ‘From stardom in Coronation Street smell of dishes that she used to to living in her car in London.’ cook bring positive memories and Addy says, ‘Despite her fame, emotions for her, even in the later Shobna’s successful career is stages of her condition.’ reduced to a mere backdrop in her memoir. She takes us into her Art of caring real world, in an incredibly honest, ‘Another powerful message in the vulnerable and down-to-earth book is Shobna’s insight into the way with warmth, personality and “art of caring”,’ says Addy. ‘She humour. It’s as though she was explains how she had to overcome sitting with you on the sofa, cup of her idea of what she thought a hobna Gulati, so familiar tea in hand.’ carer should be – “nurse-like… on TV through Coronation organised… detached.” SStreet and Dinnerladies, Vivid and tender ‘Instead, she learned to accept wrote Remember me? in response Asha, Shobna’s mother, was that is was OK to do things your to her mother’s dementia and diagnosed with mixed dementia own way and “bring your own the experience of being a carer. in 2017. Addy describes Shobna's unique skills and personality” to the However, Addy Olutunmogun, in our portrayal of her as ‘vivid, tender yet role. For Shobna, this meant using Publishing team, says it’s about unflinchingly honest’. her natural empathy to identify much more than this. ‘We see how dementia takes her mother’s needs, and using ‘It is a powerful and relatable away elements of Asha’s identity her creativity and imagination to story about the complexities of in heartbreaking ways,’ she says, resolve difficult situations.’ a mother-daughter relationship,’ ‘but also how it reveals different Tracy agrees, ‘It portrays she says. ‘It is a reflection on how aspects of who she is, “like an Shobna’s own journey from empathy dementia changed this relationship, onion… we were peeling back a to creativity, how she learnt to go bringing gains as well as causing whole new layer and finding out the extra mile and find the inner losses. It’s also an account of so much more about her in the strength to cope and remain upbeat the history, culture and values of process.”’ as she and her family care for their a British-North Indian family in Andrew says, ‘Her relationship mother as dementia takes its grip Oldham, and how their cultural with her mother seemed quite on her life. I loved it.’ heritage affected their experiences love-hate, with difficult moments of dementia.’ about broaching the subject that Remember me?: Discovering my Tracy King in Sheffield says, she must give up driving when it mother as she lost her memory ‘This is a very honest, bitter-sweet became erratic and dangerous.’ by Shobna Gulati (Octopus account of a family held together The impact of Asha’s language 2020), 256 pages, £16.99, ISBN: by their mother. It’s very well written and culture is a key theme, 9781788402477. Also available as and quite captivating. including the lack of a term for an ebook.

34 Sense and sensibility Book Talking sense A practical book about the impact of giveaway dementia on vision, hearing and other senses is now available in audio. The audiobook of Talking sense: Living with sensory changes and dementia, by Agnes Houston and Julie Christie, can be downloaded in full or as individual chapters. You need to provide your name and email address to access the audiobook or the PDF, but both are free. Visit www.dementiacentre.com/resources and search ‘talking sense’.

Deafness and dementia A new resource to help in supporting a deaf friend or relative who has dementia can be We have five copies of Bringing downloaded for free. As above, you only the inside out to give away – email need to provide your name and email [email protected] to access Deafness and dementia: An by 15 February quoting ‘Inside’ information booklet for family and friends. for a chance to win one (see p39 Visit www.dementiacentre.com/resources for terms and conditions). and search ‘deafness and dementia’.

Falling Viggo Mortensen directs and stars in Your turn this film about a gay man’s relationship For the next issue, we invite with his headstrong and homophobic you to read Bringing the inside father, whose dementia means he needs out: The words of people living his children’s support as his life changes. in, working in and visiting care Released at the end of 2020, available and nursing homes across the to watch online on BFI Player and elsewhere – UK during the COVID pandemic see www.modernfilms.com/falling by Living Words (Living Words 2020), 234 pages, £8.99, ISBN: 9781527280601. Update: Supernova The release of Supernova, featuring Tell us what you think about Stanley Tucci as a man with dementia this collection of people’s and Colin Firth as his partner, which experiences of challenging times. we’ve highlighted previously, has been Email [email protected] moved to early March. by 4 March so we can share it in our next issue.

35 Ask an expert

‘How can I help my ex-wife, who has dementia, ease out of coronavirus restrictions as these change?’

Easing restrictions easures to control the pandemic – from This may mean that your ex-wife isn’t able individual shielding and areas moving between to get fully back to doing the same things that she Mtiers to full lockdown – have been affecting used to. However, adaptations can be made to people with dementia in many different ways. help people to live as well as possible with the The more common effects include depression or skills they do have. anxiety, loss of confidence or withdrawal due to lack of social interaction, and disorientation with changes Getting help in routine. If your ex-wife is depressed or anxious, talking therapies such as counselling could allow her to Old routines talk freely about how she feels with a professional For many people, the process of coming out of and find useful ways forward. The effectiveness restrictions will involve reconnecting with the world of talking therapies will depend on how progressed and getting back to some form of normality. her dementia is. It might be helpful to look at what your ex-wife’s With any changes in behaviour or skills, the daily routine used to be, and then slowly trying to most effective way to support your ex-wife will depend reintroduce the things she used to do. on the type of her dementia, how far it’s progressed You may need to adapt things slightly for her and how it’s affecting her. It will also depend on too. For example, going to a day centre for short her individual personality and life history. There periods and building up to the length of time she is could be a lot of trial and error. You can discuss the comfortable with, or going out for a walk a few times specifics of the situation with an adviser on our before going into any shops. Dementia Connect support line, and with others who’ve faced similar challenges on our online A new normal community, Talking Point. Bear in mind that some of your ex-wife’s difficulties Difficulties won’t always need coronavirus- may be due to the progression of her dementia, which specific answers. For example, our online and sadly can’t be reversed. Similarly, someone who has printed information about depression and anxiety lost skills during the pandemic might not always be should give you enough to know more about talking able to relearn them. therapies and how to find a counsellor.

Further information Call our Dementia Connect support line on 0333 150 3456, and for Welsh-speaking support call 03300 947 400.

Talking Point, our online community, is open 24/7 – see alzheimers.org.uk/talkingpoint

Visit alzheimers.org.uk/get-support for dementia information and to find support near you. Photograph: Peter Kindersley/Centre for Ageing Better Ageing for Kindersley/Centre Peter Photograph:

363636 •

Activity ideas

Help with activities ven without coronavirus restrictions, it can be as the National Trust, Park Run and Royal Horticultural a challenge to find the activities that a person Society can also provide inspiration for enjoying the Ewith dementia will enjoy doing as their condition outdoors as seasons change. changes over time. There are more specially designed products than One of our latest publications is here for you – The ever before that provide activity and sensory stimulation activities handbook: Supporting someone with dementia for people with dementia. Many of these are available to stay active and involved. This is full of information and from our online shop – visit shop.alzheimers.org.uk ideas to help you do just that, including useful things to or call 0300 124 0900. keep in mind and where to get further support. Other Of course, other people who’ve been in similar idea-packed books include The memory activity book by situations are often the best sources of information Helen Lambert (DK, 2018) and Chocolate rain by Sarah and support. Thousands of people affected by Zoutewelle-Morris (Hawker, 2011). dementia share their experiences and ideas A wide range of websites share activity ideas and useful through our online community, Talking Point – resources. For example, try www.arts4dementia.org.uk alzheimers.org.uk/talkingpoint for artistic stimulation, www.playlistforlife.org.uk to tap into the power of personal music selections, Visit alzheimers.org.uk/publications or call www.britishgymnasticsfoundation.org/lovetomove for 0300 303 5933 for our new free publication, fun seated exercises or www.actodementia.com to find The activities handbook: Supporting someone with recommended touchscreen apps. Organisations such dementia to stay active and involved (77AC).

Driving When you are diagnosed with dementia, you may still be able to drive safely for some time. However, you have to contact certain organisations and tell them about your dementia. To order your free copy, Photograph: Peter Kindersley/Centre for Ageing Better Ageing for Kindersley/Centre Peter Photograph: call 0300 303 5933 or email Our booklet explains the law around dementia [email protected] and driving. It has guidance on managing quoting code 1504. • decisions and feelings about driving including when you have to give it up. 37

Your answers

Talking Point members’ advice for people with dementia and carers about coping with colder weather.

Coping with the cold ‘If you don’t move much you can feel cold even with ‘I’d say dementia-proof the central heating if your blankets and the heating on so it’s worth having a walk person with dementia lives alone. My dad was round regularly to get the old circulation going. always turning his thermostat right down and then ‘I swear by hot water bottles, with a furry cover complaining his heating wasn’t working. for safety. I sometimes sit with my feet on one whilst ‘On one memorable occasion, my daughter and I working on my computer – very cosy.’ Jaded’n’faded got to his bungalow to find Dad trying to dismantle his gas boiler. After that we had a tamperproof thermostat ‘My advice is ‘just pay’! It’s Bali in the bathroom here. fitted and, as he was nice and warm, he didn’t feel I work out care home bill = £1,200, bill for waste £200 the need to “mend” the central heating all the time.’ (however hot) = £1,000 profit for staying at home.’ Bunpoots Weasell ‘As a carer, rule number one is to take particular care of ‘Know what benefits you can claim and about the my own mental and physical health to help ensure I am winter fuel allowance. See if your supplier does the capable, for as long as possible, to be her carer. money back warm home discount, which some ‘For me, this means either a daily walk of about suppliers do and others don’t. Works £140 back in an hour and if possible a round of golf once per your electric meter, so we put it all on the gas instead week, but dreading the day that further care is of splitting it. Our house is very cold as it is made of needed to support me in supporting Pauline, as this precast concrete and we pay more as we pay in key may not allow the flexibility needed for me to look after and card meters. We keep all the doors shut so keeps myself.’ Agzy heat in.’ jennifer1967 Visit alzheimers.org.uk/talkingpoint to read more and join our online community.

Next issue What advice do you have for someone who’s helping a person with dementia prepare to move into a care home? Email [email protected]

3838 Photograph: FreeImages.com/Tomasz A. Poszwa FreeImages.com/Tomasz Photograph: LED lighting Running tops We have a ‘Get up in the night’ sensor light, a 3-in-1 We have Alzheimer’s Society running tops for three portable daylight lamp (pictured) or a Daylight touch winners drawn from correct entries received by 3 March. desk lamp for three lucky winners, plus Talking time pals for three runners-up drawn from correct entries Q: You can raise funds running while social received by 10 March. distancing through Run for Dementia – see alzheimers.org.uk/run-dementia – which Q: In lighting, ‘LED’ stands for: challenges you to:

A. Lots of electronic devices. A. Run 50 or 100 miles in an hour. B. Semiconductor light source. B. Run 50 or 100 miles in 30 days. C. Light-emitting diode. C. Swim 30 miles in 50 or 100 days.

Send us your answers with your name and address – email [email protected]

Terms and conditions for competitions and giveaways Competitions are free to enter and open to residents, aged 16 and over, of the UK, Republic of Ireland, Isle of Man and Channel Islands. Winners will be drawn randomly from entries received by midnight on the end date and results Memory Calendar are final. Winners will be notified soon after and announced in the competition following issue. Prizes are subject to availability, and will be sent by Alzheimer’s Society or our supplier. O Rowse in Warwickshire, A Cowan in Rutland and P Lovesey in Lincolnshire Book giveaway each won a Memory Calendar, while E Bernstein in Greater See p35 for a chance to EZYrig for EZYscan London, M Pinheiro in win a copy of Bringing the competition Northamptonshire and inside out by Living Words. KM Curran in Lancashire each won Cotswolds playing cards. J Bunnage in Hampshire won an Answer: The year 2021 will be EZYrig kit. Answer: You can use a common year with 365 days. EZYscan with the EZYrig to scan photos, negatives and 35mm slides Book giveaway of treasured memories. The five readers who each won a copy of Remember me? by Shobna Gulati were L Ridgway in Buckinghamshire, A Rodwell and J Shah in Greater London, T King in South Yorkshire and F David in County Antrim.

December/January winners and answers 3939 Photograph: FreeImages.com/Tomasz A. Poszwa FreeImages.com/Tomasz Photograph: Make Dementia dementia Action care fair Week

Show you care about Stand up care for your loved ones Dementia Action Week

Dementia Action Week needs you Monday 17 – Sunday 23 May 2021

Coronavirus has exposed the fact that families facing dementia have been failed by the social care system they rely on. The time has come for governments to set right decades of unfairness and underinvestment and to build a social care system we can all be proud of. This Dementia Action Week, Alzheimer’s Society is asking the public to urge governments to transform the social care system – for the hundreds of thousands of families facing dementia today, and for generations to come. 34.5 million of us know someone living with dementia in the UK. Together we can bring about change.

Sign up to hear more alzheimers.org.uk/DAW

40Alzheimer’s Society operates in England, Wales and Northern Ireland. Registered charity No 296645.