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Dementia Friends
- 1. Dementia Friends Taking action to support people affected by dementia Presented by Alice Billin Alzheimer’s Society
- 2. Activity What are the first words you think of when you hear the word ‘dementia’?
- 3. Sufferer Confused Epidemic Devastating Burden Wanderer Victim Lost Old Hopeless Plague Suffer Loss Gaga Child-like Misery Dotty You may find that your words are mostly negative, but don’t worry… Perceptions of dementia This is unfortunately how society often views and talks about dementia. DEMENTIA SUFFERERS ROBBED OF £100M NEWS
- 4. Alzheimer’s Society is the UK’s leading dementia support and research charity Dementia Friends, an Alzheimer’s Society programme, is the biggest ever initiative to change people’s perceptions of dementia A Dementia Friend is someone who has learnt key messages and turns their new understanding into action We have chosen to support people affected by dementia by raising awareness through Dementia Friends Over 3 million Dementia Friends in England and Wales Who is Alzheimer’s Society? What is Dementia Friends?
- 5. Foundations and Alzheimer’s Society Two thirds of people with dementia still live in their community 93% of homes lack even basic accessibility features Home adaptations improved the quality of life for 90% of recipients
- 6. Dementia is not a natural part of ______ Dementia is caused by ___________ of the brain Dementia is not just about ____________________ It is possible to _________ with dementia There is ______ to the person than the dementia ageing diseases losing your memory live well more
- 7. 1. 7 Dementia is not a natural part of ageing. First key message
- 8. 8 2. Dementia is caused by diseases of the brain. Second key message
- 9. 3. Dementia is not just about losing your memory. 9 Third key message
- 10. 4. It is possible to live well with dementia. 10 Fourth key message
- 11. 5. There is more to the person than the dementia. 11 Fifth key message
- 12. Bookcase analogy How people are affected
- 13. 13 One more very important key message… Dementia Friends is about turning understanding into action.
- 14. Being a Dementia Friend is about turning your understanding into action 1. Never use the term ‘dementia sufferer’ again – use ‘people living with dementia’ Be patient with someone struggling, in a queue, for example 2. Visit someone you know with dementia 3. 4. Wear your Dementia Friends badge so customers can see you are a Dementia Friend 14 Some examples of actions you could commit to: What next?
- 15. Policies – Carers’ Policy; updating records for people with dementia Your organisations’ action: dementia friendly design and considerations Design – how can you help with colour and layout? Technology – Alarms, sensors and lightsSignage – clarity and appropriateness Roll out Dementia Friends for all staff and planners Adaptability – are you flexible for when needs change? Signpost staff and customers to local services Be supportive and understanding for tenants and customers living with dementia “We deserve to be accepted and included in our communities and not live in isolation or loneliness” Download the Dementia- Friendly Housing Charter for more ideas! alzheimers.org.uk/housing
- 16. Do you want to be a Dementia Friend? To be a Dementia Friend, all you have to do is understand the five key messages and commit to taking an action!
- 17. Five key messages 4. 5. 3. 2. 1. Dementia is not a natural part of ageing Dementia is caused by diseases of the brain Dementia is not just about losing your memory It is possible to live well with dementia There is more to the person than dementia
- 18. Commit to an action Please complete your action card and tell Alzheimer’s Society about your chosen action! 1. 2. 3.
- 19. Further support Alzheimer’s Society Helpline Helpful resources for organisations Carers – need extra support? alzheimers.org.uk 0300 222 1122 alzheimers.org.uk /organisations alzheimers.org.uk/ get-support/ help-dementia-care/ looking-after-yourself
- 20. You have just joined over 3 million Dementia Friends Congratulations!
Editor's Notes
- Welcome everyone. My name is Alice Billin, Programme Partnerships Officer at Alzheimer’s Society Foundations op has been working with Alzheimer’s Society to develop the presentation you are about to see. It aims to help you learn a little more about what dementia is, why we are uniting with Alzheimer’s Society to take action, why it is so important to take action and importantly HOW you can do so to help those affected to live well. Today, as a result of seeing this presentation you will become a Dementia Friend I will be telling you what the Dementia Friends programme is all about in just a moment. Dementia can be a very emotive topic so if you feel like you need to leave the room at any time, please do.
- To start, what is the first word that pops into your head when you hear the word “dementia”? Have a quick think. Would you say the words you’re thinking of are overwhelmingly positive or negative?
- You may have found yourself thinking of some of these words – confused, old, hopeless, sufferer If you’ve used these negative words, don’t worry: you’re not alone This is unfortunately how society often views and talks about dementia. We see ‘suffering with dementia’ or ‘dementia sufferers’ written frequently. This implies ‘woe and misery’ and that it isn’t possible to live well with the condition. Dementia Friends was created by Alzheimer’s Society to help break down this fear, stigma and misunderstanding of the condition. -I’m thrilled that you’re here today to help achieve this by becoming Dementia Friends and learning more about what you can do.
- A bit of further background about why you are here today Alzheimer’s Society is the UK's leading dementia support and research charity for people living with dementia, their families and carers. By 2021, 1 million people in the UK will be living with dementia, a number that is only expected to continue growing Dementia Friends, an Alzheimer’s Society’s programme, aims to increase people’s understanding of dementia and inspire them to take action to support those affected by dementia in the community. It is actually THE biggest ever initiative to change people’s perceptions of dementia and it is transforming the way the nation thinks, acts and talks about dementia. Over 3 million people have already become Dementia Friends and they are helping people affected by dementia to live the life they want and to remain integrated members of the community If you need any information or advice, I will signpost you to available services at the end With that I’d like you to start thinking about the sorts of things you might be able to do to help support customers and indeed colleagues who might be living with or affected by dementia. I’ll come back to that a little later.
- Dementia raises challenges for all aspects of society but raises specific challenges for the housing sector: Two thirds of people with dementia still live in their community 93% of homes lack even basic accessibility features. Home adaptations improved the quality of life for 90% of recipients and can reduce falls by 26%. I am now going to give you information about the Dementia Friends programme – you will learn the five key messages of Dementia Friends and learn about the small actions you can take to become a Dementia Friend.
- **This is an animation so please practise it before delivery*** Read out the sentences below, one by one, but do not read out the missing word. Click to make the word fall into place. You will go through each of the key messages on the next few slides. You are now going to learn about the five key messages of Dementia Friends to help you understand more about dementia. We’re going to play a game together. We will read through the sentences and I want you to shout out which word you think fits with the sentence before I click to show you. We’ll go into further detail about these sentences in a moment once we have completed this activity 1. Dementia is not a natural part of ____________. Ask the group to find the missing word. ANSWER: ageing Click to prompt slide animation. 2. Dementia is caused by _________ of the brain. Ask the group to find the missing word. ANSWER: diseases Click to prompt slide animation. 3. Dementia is not just about ______________. Ask the group to find the missing word. ANSWER: losing your memory Click to prompt slide animation. 4. It is possible to _________ with dementia. Ask the group to find the missing word. ANSWER: live well Click to prompt slide animation. 5. There’s _______ to the person than the dementia. Ask the group to find the missing word. ANSWER: More Click to prompt slide animation.
- [Reading from slide] Dementia is not a natural part of ageing. This is the first key message. Not everyone who grows old will develop dementia and not everyone who develops dementia is old. People in their 20s have been diagnosed with dementia, although this is very rare.
- [Reading from slide] Dementia is caused by diseases of the brain. -This is the second key message. -In the same way that any other organ can be damaged by disease (e.g., kidney disease, liver disease), dementia is caused when diseases physically damage the brain. Imagine that the brain is a collection of thousands of fairy lights, each representing a memory, a skill or a function of the brain. Now imagine that dementia is causing some of those lights to flicker, dim or switch off completely. For each person this will happen in a different order and different "lights" will be affected. -Just like with other diseases, a healthy lifestyle that features regular exercise, a balanced diet and not smoking can help reduce your chance of developing dementia. What’s good for your heart is also good for your head!
- -[Reading from slide] Dementia is not just about losing your memory. -This is the third key message. -Q: Dementia can affect any area of the brain. Other than memory, what functions does the brain control that could be affected by dementia? -A: Possible examples: Communication – forgetting words or using the wrong words e.g. calling a dog a horse. Motor skills – being able to use a knife and fork. Sequencing – difficulties with performing a task e.g. putting on two jumpers but no skirt. Changes in inhibition – e.g. used to be a very quiet shy person, now outgoing. Vision – e.g. judging distances. -As any area of the brain can be affected, other functions of the brain could be affected by dementia too.
- -[Reading from slide] It is possible to live well with dementia. -This is the fourth key message. -People with dementia may still be able to do the same things they did before they were diagnosed. They may still be able to work, drive and have relationships. What they can do and how long they can do it for will depend on their particular circumstances. -Living well will mean different things for different people. We’re not saying that dementia doesn’t bring challenges, but despite these challenges it is still possible to live well with dementia. -Q: What does someone need in order to live well with dementia? -A: Support and understanding.
- -[Reading from slide] There is more to the person than the dementia. -This is the fifth key message. -In the same way that we would look at someone with cancer or diabetes and see a person first, there is more to a person than the dementia.
- I am now going to explain the bookcase analogy Or show the video: https://www.youtube.com/watch?v=WQ9uSR22qkI&t=60s
- -[Reading from slide] And finally, one very important extra message -Dementia Friends is about turning understanding into action. I’d now like you to think about what you can do differently in your day-to-day life that may help people living with dementia.
- - Considering what we’ve covered today, what does “dementia-friendly” now mean to you? Take a few suggestions from the group. - As I mentioned at the start, to be a Dementia Friend, you need to support the five key messages and commit to your own dementia-friendly action. Click 1- There is no action too big or too small. For example, from what we’ve learned today, I’m sure we could all agree that it’s important to show patience and kindness towards people living with dementia. Click 3 - Change the language you use when talking about dementia and never again say “sufferer” because this implies that dementia is entirely about misery and that it is not possible to live well with dementia – instead say “person affected by dementia” Click 4 - Be patient with someone struggling, such as in a queue or counting out their money Click 5 – Wear your Dementia Friends badge
- The many ways that dementia affects people’s cognitive and physical functioning presents challenges to the housing sector. People with dementia may have difficulties recognising familiar places, objects or people, they may leave the house and walk for a long period of time, become disorientated, display behaviour that challenges or be unable to retain info about services. There are a number of ways that housing organisations including private rental organisations can make very small and cheap changes to support people with dementia. For example, you can consider: Policies – do you have an appropriate Carers’ Policy for your staff? Do you have a way of recording on your customers’ accounts the specific needs they might be facing? – for example, maybe some people with dementia should only be contact by letters rather than by phone so they can read it back afterwards Design of the property – how can you help with colour and layout? For example, red light switches are easier for a person with dementia to see Continue to roll out Dementia Friends for all staff and contractors, for example putting Dementia Friends as part of the induction of new staff Consider signage in people’s houses and also within your offices – make sure they are clear and appropriate such as signs to the toilet Be supportive and understanding for tenants and other customers living with dementia Adaptability – are you flexible for when your customers’ needs change? Signpost your staff and customers to local services such as Dementia Connect and Alzheimer’s Society’s Helpline Technology – consider technologies such as alarms, sensors and lights to help people with dementia feel safer in their own homes. -I’m now going to hand out an action card that provides some other actions you could take that were suggested by people who are affected by dementia. After handing out to the group Q: Would anyone from the group like to share their chosen action? Take a few suggestions from the group. Everyone else, if you’d like, you can choose a new action or tick a suggested action already listed.
- Q: Now for the big question, do you want to be a Dementia Friend? – Remember to be a Dementia Friend all you need to do is understand the key messages that we’ve been through and commit to taking an action. Let’s just quickly recap the 5 key messages.
- 0 - Dementia is not a natural part of ageing Click 1 - Dementia is caused by diseases of the brain Click 2 - Dementia is not just about losing your memory Click 3 - It is possible to live well with dementia Click 4 - There is more to the person than dementia
- Everyone that has understood the key messages and committed to an action can be a Dementia Friend. There is a badge and an action card for everybody on your tables. Please wear the badge on your uniforms so that customers can see that you are a Dementia Friend You can find the messages on the back of your action cards -Alzheimer’s Society would love to know what actions you are taking so please do fill in the action card. WE HAVE BOX -If you would prefer not to give your full address that’s fine, just please fill out the first two letters of the postcode so that they can track which actions have come from which areas of the country. Then simply seal it up and pop it in the post. - Additionally, if you have any questions, want more information or would like advice, you can find where to look on the action card, including the National Dementia Helpline.
- You’ll see some of this on your action card For further support, or information from Alzheimer’s Society please visit www.alzheimers.org.uk or call our Helpline on 0300 222 1122 Why not take a look at some helpful resources for organisations here: alzheimers.org.uk/organisations Are you a carer? Do you need extra support? Alzheimers.org.uk/get-support/help-dementia-care/looking-after-yourself
- I hope that you found the Session interesting and informative Thank you all so much for becoming Dementia Friends.