Understanding dementia

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Understanding Dementia Carers UK, Heléna Herklots CBE

On celebrating the contribution carers have on those with dementia P6

Alzheimer’s Research UK On how the UK’s research into dementia is progressing ONLINE

David Baddiel:

“Memory, after all, is where we store our personality… and dementia, surely, is the most terrible, the most complete hacker” P4

PHOTO CREDIT: COURTESY OF DAVID BADDIEL/AVALON

Dementia devastates lives and too many people face it alone.

But together we can change this.

Take action and unite with us at alzheimers.org.uk/DAW

Registered charity no. 296645

Dementia Action Week 21–27 May

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IN THIS ISSUE

Alzheimer’s Society Ambassador

Keith Oliver on actions communities must take to become more dementia-friendly.

P4

Age International case study

Dementia UK

On how to improve family communication and connections after dementia diagnosis.

On how dementia is affecting people on a global scale.

ONLINE

ONLINE

‘The only way we will beat dementia is by uniting in action’

It’s time to face some brutal facts; dementia is the biggest killer in the UK. You or someone you know will be affected by it – yet far too many face dementia alone, without adequate support.

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esearch will beat dementia, but there is, as yet, no cure. There hasn’t been a new drug for dementia in 15 years. This is why the Alzheimer’s Society is focused on pioneering research, last year investing £50 million into the UK’s first dedicated Dementia Research Institute.

Unlike other diseases that are treatable on the NHS, it’s social care that many of the 850,000 people with dementia in the UK rely on.

But decades of squeezed government funding has left people with dementia and carers enduring inadequate care and crippling costs.

Today, we’ve published a report with harrowing testimonies from families up and down the country

battling a broken care system. It starkly illustrates that the social care crisis is a dementia crisis.

While dementia researchers work tirelessly and we continue to campaign for the government to fix the broken care system.

What can society do?

All of society has a role to play in upholding the rights of people with dementia. We must continue to grow the dementia movement. Over 2.4 million Alzheimer’s Society’s Dementia Friends are changing the way the world thinks and acts about dementia.

In every school, train carriage and supermarket in this country, at least one person is already a Dementia Friend, taking action to improve the lives of those affected. But we need everyone on board.

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Jeremy Hughes CEO, Alzheimer’s Society

850,000 people with dementia in the UK rely on the NHS.

And it’s not just individuals – there are over 350 dementia-friendly communities and businesses – from local corner shops and hairdressers to faith groups and banks – uniting to ensure that people with dementia feel understood, valued and able to contribute to their community.

There are many community services also available to support people. Our Side by Side service teams up people with dementia with a volunteer to help keep them doing the things they love – and try new things too.

Twenty years ago, we launched Dementia Awareness Week and we have made great strides in shining the spotlight on dementia to eradicate stigma and better understanding. This year, in our newly-launched Dementia Action Week (21-27 May),

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we’re asking everyone to get involved by uniting and taking actions, however big or small. From supporting our campaign to find a proper solution for social care, to continuing to invite people with dementia out and making sure you listen and include them in conversations, people with dementia and carers have shared actions with us that will make a difference to their lives.

People with dementia – like Keith Oliver, who features later in this edition – tell me day in, day out, that it’s not just about supporting them but about upholding their fundamental human rights to live the life they want and are entitled to. We can’t do this alone – we need everyone to unite with us in creating a world where people with dementia live the lives they choose.

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From the moment you step into Anchor’s Mayflower Court you will feel right at home. This contemporary residential home is set in luxurious grounds and offers personally tailored care and specialist dementia care. Our wide range of activities and facilities, combined with spacious en-suite rooms, allow our residents to live a rich and meaningful life in safe and comfortable surroundings.

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This is Grandma enjoying the beautiful gardens at Mayflower Court.

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Why businesses should be dementia-friendly Businesses that can support customers living with dementia will see improved customer satisfaction and better conversations with people.

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early 300,000 people in Britain areliving alone with dementia, according to Alzheimer’s Society research.

And as many people again live in the community with others, often with partners who have complex health needs of their own.

We know that with the right support and understanding, people with dementia can live active, healthy lives for a long time. Utility companies have a particularly important role to play in ensuring people with dementia stay safe, warm and

Sarwjit Sambhi Managing Director, UK Home, Centrica plc

21,000 of our employees have become dementia friends.

connected, says Sarwjit Sambhi of Centrica, owner of British Gas. “As Britain’s largest energy supply and services business, we recognise that we have a special duty to the 200,000 customers we serve who are living with dementia.

That’s why we decided to become a dementia-friendly business in 2016,” says Sambhi.

Over the past two years more than 21,000 British Gas employees have become Dementia Friends, and the firm has also overhauled many of its processes, like Power of Attorney, to ensure they work for people with dementia and those who care for them.

Dementia-friendly guide The company’s experience (and that of other leading water, telecoms and energy businesses) - underpins a new guide to being dementia-friendly. The guide is aimed

at the utility sector as a whole.

Launched by Alzheimer’s Society Chief Executive Jeremy Hughes and Secretary of State Greg Clark in February, the guide gives practical advice for utility businesses of all sizes to help ensure that customers and employees living with dementia get the support they deserve.

“This advice is just as relevant to self-employed plumbers as it is to the largest companies,” says Sambhi. “We all need to talk to customers, to serve them and to ensure that they understand the advice and guidance we give them.”

Business benefits Most of the measures recommended in the guide are low-cost - Dementia Friends sessions are free of charge, for example - but the business benefits can be very powerful.

“Since we started helping our people to become more aware of

what dementia is and how it affects people, we’ve experienced a host of benefits,” Sambhi says. Among the benefits are better conversations with customers with dementia, which have improved now that agents and engineers understand why a customer may struggle to find the right word to explain what they need; fewer appointments that fail because customers forget to be at home; and fewer repeat visits or calls because agents and engineers are better at explaining how a product or service works.

“All of this is improving customer satisfaction and reducing waste to the business, as well as being the right thing to do,” Sambhi says.

“There is no downside to becoming a dementia-friendly business.”

Read more on alzheimers.org.uk/utilities

Should you be thinking differently about dementia?

Most of us know someone who has been affected by dementia. Until there is a cure, we need ways of living better with this condition.

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t’s important we look at the person and not the disease, value being in the moment with that individual and focus on their perception of reality and not our own.

But do we always consider the importance of connection to the outdoors and the risks of not having regular access to green spaces?

In a dementia household, everyday activities and pastimes can become harder and overwhelming.

Without the right support and opportunities, social interactions diminish, and people become increasingly isolated and spend more time indoors.

Neil Mapes CEO, Dementia Adventure

Yet, research shows that getting outside significantly improves wellbeing and the benefits can include improved sleep patterns, appetite, speech, personal relationships, and reduced stress, anxiety and loneliness.

When someone we care for becomes ill we can become highly protective, wanting to ‘wrap them up in cotton wool’ and keep them safe

Take advantage of the amazing natural resources that we have on our doorstep and create opportunities for people to get outdoors.

inside. While we never put people in harm’s way, an unhealthy perception of risk can mean individuals miss out on the fun and meaningful opportunities that life has to offer.

Getting outside doesn’t have to involve a big excursion. Research shows that as little as five minutes’ contact with nature and the outdoors has significant emotional benefits for us all. Most towns and cities have parks or outside green spaces and incidental encounters with people walking dogs or taking children to school, provide normal social experiences that help us feel connected with our communities.

Many of us have a garden that we can use, but if physical ability or support to access these places is a barrier, we can always bring the outdoors in. Sitting by an open door or a window overlooking a bird table, cut flowers, objects from nature or even looking through a nature book or magazine, can all

bring a sense of connection.

Through our training, consultation and supported dementia holidays, we constantly see the real change that outdoor activity brings into the lives of people with dementia and that of their carers.

I’d encourage us to think differently about dementia, to take advantage of the amazing natural resources that we have on our doorstep and create opportunities for people to get outdoors, connect with themselves, their loved ones, their community, and retain a sense of adventure in their lives.

Read more on dementiaadventure.co.uk Dementia Adventure provide supported dementia holidays, training and consultation to a range of organisations and leads and participates in dementia research.

Please visit dementiaadventure.co.uk for more information on how to live better with dementia.

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How can society help people with dementia?

Keith Oliver Alzheimer’s Society Ambassador, Member of 3 Nations Dementia Working Group

Keith Oliver lives with dementia. He shares his thoughts on what actions society must take to become more dementiafriendly.

My life changed dramatically when, at 55-years of age, I was diagnosed with young-onset Alzheimer’s disease.

Immediately after my diagnosis I needed time to take stock and consider my future. Before it, I had believed that dementia only affected people in their 70s. This is one of the many challenges of dementia – not enough people know about the condition or understand how it affects people’s lives.

I was mindful of what I had said to my wife on the day of my diagnosis. I remember saying, “One door is closing but another door will open.” I have been fortunate to be able to benefit from campaigning opportunities presented to me by Alzheimer’s Society.

At the time I was working as a head teacher. My time was spent helping children shape and develop skills that would enable them to become active members of society – in communities that would value and respect them.

Now, eight years later, my days are spent ensuring that people with dementia also get access to these same basic rights and opportunities.

People with dementia deserve the right to live the life we want and continue to do the things we enjoy. Yet, sadly, many of us face dementia alone, without adequate support and we end up isolated.

But this can change. There are things we can all do to make a difference.

This Dementia Action Week, (21-27 May), I want to urge everyone to unite and take actions – big or small – that will make a huge difference to people affected by dementia – like me.

I am an ambassador for Alzheimer’s Society. Last year, I was involved in the development of the charity’s Dementia Statements, which set out the fundamental rights of every person with dementia. Whilst I am passionate about all of the statements the two words that stand out for me most are ‘we’ and ‘rights’ - as dementia doesn’t just affect the person with dementia, it affects those closest to them as well. I have these statements glued in my diary, which I take everywhere with me. This way I am reminded every day of where society needs to focus. From helping someone in the street who may look a little lost and in need of help to asking us questions about our condition – make us feel seen, heard and empowered.

My three top tips to anyone who wants to help make a difference: Don’t label me Yes, I have dementia, but it doesn’t define me. Nor should it limit the choices available to me. People with dementia still have a lot to contribute, whether that’s in conversations, carrying on in our jobs where possible or campaigning to improve the lives of people affected by dementia. We still have passions and interests; let us continue to fulfil them.

Support me to support you Remaining independent for as long as possible is something everyone with dementia wants to achieve – but to help us do this our communities need to work with us. There are already over 350 Alzheimer’s Society Dementia-Friendly Communities – including organisations and businesses – making a difference. But more can be done.

If you own a business, listen to me when I tell you that signs aren’t clear enough or that we need more seated areas on a shop floor to help me when I get tired. Making these small changes will enable me to thrive for as long as possible.

Challenge the stigma There are over 2.4 million Alzheimer’s Society’s Dementia Friends taking action to change the way the world thinks and acts about dementia – why not sign up to a session near you so you can find out how to directly help people affected?

To get involved this Dementia Action Week and unite against dementia, visit alzheimers.org.uk/DAW

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Small actions, big change For a while now, I’ve been doing a one-man comedy show about my family. Part of the show is about my father. He has Pick’s Disease, a frontal lobe dementia, the symptoms of which include uncontrolled swearing, inappropriate behaviours, irritation, mood swings, apathy and extreme impatience.

When the neurologist told me that list of symptoms, I said, “Sorry, does he have a disease, or have you just met him?” This is a man, after all, who once, on a family holiday to Devon, farted so badly in an antique shop that we had to leave the shop. When we returned in the afternoon, the shop was shut, because the owner had been taken to hospital.

In a show about how you remember people, my dad’s dementia creates a related issue, which is how much you can remain the person you once were without memory. Memory, after all, is where we store our personality.

We say ‘memory bank’, because it is where we invest ourselves, it contains all our data: and dementia, surely, is the most terrible, the most complete hacker. But actually, my dad has not been stolen from us by dementia.

Certainly, when the disease first hit, entirely the opposite: it turned the volume up on his personality, transforming Colin Baddiel into a kind of spitting image puppet of himself.

When I meet members of the audience afterwards, or they contact me on Twitter, they are keen to tell me their own stories. Ruth Langsford, after an interview on This Morning, told me about her dad, how in the ‘90s, a doctor had asked him, as a dementia test, who the Prime Minister was. “Blair!” said Mr. Langsford, immediately, leading everyone to

David Baddiel Alzheimer’s Society Ambassador

We say ‘memory bank’, because it is where we invest ourselves. think maybe he was fine after all.

“Lionel!” he then added. Dementia is the UK’s biggest killer, yet the fact remains that dementia is a condition surrounded for too long by silence and shame.

All these stories, of which these are only a fraction, are funny – and, as a result, I have started to tell some of them in the show – but they are also, of course, sad and poignant. But this is the liberation, that having a parent who has dementia need not be surrounded in shame and silence; and that there may be a way to break that silence through comedy.

I’m just a comedian and writer. I don’t campaign and I don’t actually do the really hard work of caring or interacting with people with dementia,

beyond my own family. However, last year, Alzheimer’s Society did me the honour of making me an ambassador and through them I met Peter Lyttle.

He is a perfect example of someone with the disease who doesn’t fit the stereotype: he’s chatty, insightful, self-aware and full of stories, including many about what day-to-day life with dementia is like. He told me how he struggled to come to terms with his diagnosis and remembered standing in front of a cash machine trying to work out what it was and why he was there, with people around him tutting impatiently. He felt like that he no longer had a role to play in the community he had lived in most of his life – thoughts which left him feeling like he wanted to end it all.

Too many people with dementia face the same challenges, making them feel alone without adequate support from those around them.

Simple actions, such as including people with dementia in conversations, and asking them if they need help if they seem confused, make a huge difference to their lives.

This Dementia Action Week (21-27 May) have a look online at what actions people with dementia have shared with Alzheimer’s Society. Any action you can take, that engages with the stories and the lives and the still-present personalities of people with dementia is immensely appreciated. May you never get dementia: but if you do, may society by that time recognise that you are still you.

Alzheimer’s Society Ambassador, David Baddiel, is urging people to get involved this Dementia Action Week and unite against dementia by visiting alzheimers.org.uk/DAW

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Small actions.

Big impact.

What will you do?

Take action and unite with us at alzheimers.org.uk/DAW #DAW2018 Alzheimer’s Society registered charity no. 296645

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Dementia Action Week 21–27 May

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Dementia: How to reduce your risk

Lara Crisp Editor, Gransnet While dementia is, to a large extent, determined by genetics, it’s well recognised that positive lifestyle changes can have a significant impact on reducing the risk of developing it later in life. Here are just a few simple changes you can make in order to help avoid the disease.

Stay active According to the Alzheimer’s Research and Prevention Foundation, being active can reduce your chances of getting dementia by up to 50%.

It’s recommended that you do 150 minutes of exercise a week - so 30 minutes, five days a week. Tai chi, yoga, walking and swimming are all good options and it’s a good idea to do a mixture of cardio, strength, balance and coordination exercises.

But, first and foremost, make sure whichever exercise you choose, it’s something you enjoy or you’ll never make it a habit.

Challenge your brain Keeping your body active is one thing, but it’s important to keep the grey matter fit too. Increased blood flow to the brain helps to keep it functioning as normal - it needs regular workouts in the same way that your body does. Learn a new skill, take a language course and chat to new people.

Don’t underestimate the value of word games, memory challenges and Sudoku. Research has shown that staying mentally active can help to ensure that your cognitive behaviour doesn’t diminish, which will lower your risk of developing dementia symptoms.

Be social Loneliness is a killer. It not only affects our mental health but our physical health too. As we age, it’s more important than ever not to become socially isolated and to reinforce relationships with loved ones and perhaps reconnect with old friends.

It’s never too late to make new friends by getting involved in volunteering or joining other social groups in your local area. While nothing can beat face-to-face contact, if your mobility is restricted or there’s another reason you can’t meet in person, these days there are plenty of online options to help you stay in touch, like Skype, Facebook, and online communities, like Gransnet.

Don’t let stress get to you Managing stress and anxiety can go a long way to keeping dementia at bay. Chronic stress can actually damage certain areas of the brain that affect thinking, memory and emotional response so it’s important to monitor how you react to particularly tough situations. Daily relaxation exercises can be a good antidote to stress and stand you in good stead to deal with excessive anxiety should it occur.

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We must protect the health and wellbeing of carers

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aring for a loved one with dementia often means carers put their own health needs to the back of the queue. It’s time to make sure carers and those they support are healthy and connected.

The majority of people with dementia are cared for at home by relatives and friends. Demographic changes and spending pressures on formal health and social care services mean that the numbers of us caring for loved ones is increasing and the number of hours we spend caring is also on the rise.

Supporting carers to be healthy and connected Sometimes, it is difficult to find time to take care of a loved one and your own wellbeing, with carers often putting their own health needs to the back of the queue. Each June, Carers Week aims to raise the profile of carers, celebrate their contribution and highlight the impact of caring. This year, we need to focus on the health and wellbeing of carers.

Carers report high levels of physical and mental poor health. Not being able to get enough sleep, putting off medical appointments, not having the time or financial resources to eat healthily and sustaining injuries while caring for someone are all common issues reported by carers.

The world shrinks Loneliness and isolation are all too common for carers. Eight in ten carers responding to our 2017 State of Caring Survey reported feeling isolated or lonely as a result of their caring role and this can have a negative impact on both physical and mental health. For many carers, the world simply shrinks. Your role can become one of providing and co-ordinating care, taking your loved one to medical appointments, going to the

in their caring role, meaning the NHS and other public services will be forced to step in.

But, the right information, advice and support at the right time can transform families’ lives.

Support from health and care professionals

Heléna Herklots CBE Chief Executive, Carers UK

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carers responding to our survey reported feeling isolated or lonely.

GPs, care workers and hospitals have a key role. By thinking about the needs of the family around the patient they can help carers access support. Support should help them look after their own health and the whole family, too, such as technology that can help people with dementia be more independent – safely – while giving carers peace of mind.

Taking a break Everyone needs a break to recharge the batteries and have some time to themselves. This is even more important for carers. Yet, a third of carers (32%) looking after someone with dementia who responded to our survey have not had a day off from their caring role in more than a year.

Funding and delivery of carers’ breaks needs an urgent review.

Working together to support carers pharmacy, liaising with care workers.

You can feel invisible, as you fade into the background and the needs of the person you are caring for take centre stage. It can be lonely bearing so much of the responsibility of caring for a loved one.

We can’t afford to take carers for granted Unpaid care for someone with dementia is worth an estimated £11.6 billion a year - an indication of the huge contribution that carers make.

If families aren’t supported to care for both themselves and their loved ones, they will be unable to continue

Carers are doing more than ever to support others; they must be supported to stay healthy and connected.

From GPs to employers and from schools to family members, we all have a part to play in encouraging people we know to recognise themselves as carers and access information and practical support.

We hope that a number of key government programmes, specifically the forthcoming Cross Government Carers Action Plan will set out some concrete measures to deliver strengthened practical and financial support for carers, improved recognition for caring and sustainable improvements in health and social care.

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How a care home relieved the anguish of dementia

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Richard Burt was determined to care for his mum when she was diagnosed with Alzheimer’s. But, when it became clear she wasn’t safe living by herself, he was relieved to find a cheerful, quality care home to ease the burden.

Richard recalls – nine years back – the first alarming sign of his mum’s dementia, when she was 85. Frustrated she couldn’t work the smart new vacuum cleaner, she pulled it to pieces to clean it.

His mum, Peggy, a widow, lived alone in the modest family home in North Shropshire.

Richard, who was 55, married with grown-up children and semi-retired, dutifully drove the hour and a half to visit her every few days.

Richard says with pride: “Mum was a tough and determined Scouser who served in the Women’s Army during the war. She was fiercely independent. The family gave her a bicycle for her 80th birthday and she would ride all over the village.

Early signs of dementia “It came as a real shock when she started getting lost. Then she started taking her medical prescriptions to the bank and when she wheeled her bicycle into the doctor’s surgery he contacted me and said ‘It’s time for a talk’.

“They did some tests and told me she had Alzheimer’s. My mum and I are very close.

Neither of us had any idea what that meant – we thought we could manage… but that was blissful ignorance.”

Richard was tearful with the memory of the loss of the capable mother he admired

Richard Burt Son of Peggy, Sanctuary Care Resident

Now, at the grand age of 94, Peggy is enjoying life at a care home in Kings Norton in Birmingham.

and adored. He says the decline was gradual through the stages of early, mid to late onset of the relentless brain disease.

I wanted to care for her all by myself When she was first diagnosed, Richard thought: “If anyone is going to look after mum, it will be me. She looked after me in difficult times in my life and gave me unconditional love and support, which I appreciated. So it was a natural thing for me to care for her.”

However Richard’s varied career as a local

government councillor, running his own business, being in the fire service and stints as a press photographer and teacher didn’t prepare him for the challenging role of primary carer.

“I didn’t realise what would be involved. I didn’t have a clue really, about the journey of dementia. The person fundamentally changes in their mood, mental capacity, their reactions and emotions. Every person living with dementia is affected differently.”

Initially reluctant to place his feisty mum in a care home, he opted instead to move her into a rented cottage in a rural village closer to his home. However, that proved traumatic.

“Everything she knew about managing her home of 20 years was wiped out. She was lost and helpless in her new surroundings and overwhelmed with distress.”

Richard felt helpless himself and reached out for support through home care services and Dementia UK’s Admiral Nurses – for whom he later went on to raise £25,000 by taking part in an enormous cycling challenge.

Why I opted for a care home Peggy remained living independently for five and half years before the crunch came.

Concern for her safety was the catalyst for moving into a care home when she started putting the electric kettle on the stove and the iron on the carpet.

Now, at the grand age of 94, Peggy is enjoying life at a care home in Kings Norton in Birmingham.

“There’s such a sense of relief when you finally give up the reins of being the sole carer and realise there is proper, professional care available 24 hours a day, seven days a week.”

Now, Richard and Peggy couldn’t be happier. “It’s been brilliant since mum moved here. The culture is warm and personable, and the senior carers set a high standard – it’s mum’s home and she’s very content here.”

Richard’s advice for finding a care home Richard advises family members to do their research, starting with reading the Care Quality Commission (CQC) reports, visiting several

care homes and trusting their instincts. “Look for good-quality care with committed, cheerful staff, nice facilities, a stimulating activities programme and additional support services.”

And be sure to have open, friendly communication between the triangle of staff, the resident (your loved one) and the family.

Richard’s positive experience has dispelled all negative preconceptions about care homes.

“You can build a comfortable home and a new family for your loved one and you can be part of it. I’ve adopted a larger family. There are 12 other residents I visit every day and it’s not just for their benefit. I have benefited enormously from seeing them and the supportive team caring for them. I find being upbeat and sociable, having a joke and a laugh and being helpful and concerned comes naturally to me with older people and I get a deep fulfilment out of my visits.

“Mum doesn’t know much anymore but all our little jokes together, along with the kind care home team, make her life pleasant and contented.

“We have real quality time together again, taking part in activities and chatting. I hug her and hold her hand and she loves that. She feels cared for and loved.”

Diane Priestley Life with Sanctuary Care Developing a deep, visceral understanding of residents and who they are as individuals is critical when caring for people living with dementia.

At Sanctuary Care our approach to supporting people looks beyond a person’s dementia and celebrates who they are as an individual now, as well as who they were before moving into one of our homes.

Gaining such a detailed understanding of a person’s emotional needs, as well as their health and wellbeing needs, enables us to support them to live happy and contented lives full of wonderful experiences.

To find out more about how our dedicated and skilled teams, across more than 100 care homes, provide truly person-centred care for Peggy and other people like her visit sanctuary-care.co.uk/support