Respect for Dementia

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Slide 1: 

Suffolk Mental Health Partnership NHS Trust ~ Helping people make the most of their lives Thank you to everyone who helped us to develop ‘respect for dementia’. They explained dementia that never affects one person. It affects a couple, a family, their friends ... whole lives. But never just one individual.

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Suffolk is a wonderful place to live and work. We have low crime, good health, strong communities – and the growing wisdom of an ageing population.

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We’re hearing more about dementia. We hear about the statistics, yet each statistic is a person. Someone in Suffolk you know. Someone like you. Felixstowe beach

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Suffolk is rich in older people who have helped make Britain great. 2008 – 9842 people with dementia in Suffolk. By 2025 – sixteen thousand, three hundred and fifty.... ...two. People like us. Dusk at Needham Market

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At last... dementia is on the agenda. ‘Living well with dementia’ has now been published by NHS Suffolk and Suffolk County Council. Both the national and local strategies stress the importance of improved understanding. Orwell bridge

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Last autumn we spoke to over 50 people living with dementia in Suffolk. They told us candidly that theirs is not ‘a wonderful world’. They talked about the hurt caused by the reactions of other people. People like us. Aldeburgh beach

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At first we thought that the campaign might be called ‘hope for dementia’. We thought we would be able to learn more about ways that that people use to cope. Southwold beach huts

Slide 8: 

‘Hope for dementia’? No. ‘Respect for dementia’. Yes. ‘Tell it how it is’. Suffolk landscape

Slide 9: 

“People who used to speak - now cross the road to avoid us. They don’t know what to say.” ‘Our family have stopped calling, it breaks my heart.’ ‘As a carer you’re on call 24/7. I do want to care. I just need a break. Thank goodness for Crossroads.’ Flatford

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‘But we’ve lost a lot of “friends”. ‘We’ve found a lot of real friends’. ‘There is a lot of support out there’. ‘Where to start?’. Southwold pier

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“We didn’t know where to start.” Bury St Edmunds

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Suffolk Mental Health Partnership NHS Trust ~ Helping people make the most of their lives

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We took the experiences of people living with dementia and tried to distil down the main themes that came through their stories. We then worked with the design team to find images that conveyed the right messages We then took the campaign images back to the people living with dementia to see what they thought. They told us what rang true... and what did not.

Slide 14: 

Each picture conveys one of the messages that the people we spoke to thought was important. Actually – it isn’t all negative. There were many good times. Staying active is fun – and therapeutic. We all prefer a routine. Each poster carries three messages. It poses a challenge. It offers some information. It ends on a positive call to action. The journey is hard but we can all make it easier.

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Many families are incredibly supportive...but not all. People spoke very positively about Suffolk Family Carers... Suffolk Age Concern is also a great source of support, help and advice... Suffolk Mental Health Partnership NHS Trust... Suffolk Alzheimer’s Society, and the National Alzheimer’s Society. Wonderful sources of support. We’re fortunate in Suffolk to have such great people. But we need to get the good news out.

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Towards the end of the journey, dementia can be debilitating. But for most people, for most of the time, there is quality of life to be enjoyed. Supporting that quality of life depends on friends, family, and community. It depends on people like us. People think that dementia happens to someone else. But we can be certain that it will happen to many of us sitting in this room. Let’s all play our part in promoting Respect for Dementia

Slide 17: 

If we lose our memories, we do not lose our humanity. So long as we stand up for the dignity of people when they are vulnerable, then we will create a community in Suffolk that we can be proud of. There are lots of ways in which we can include people living with dementia – and we can help get the message out. Neither hope nor pity, but ‘Respect for dementia’

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We can help people to over-come their embarrassment. We can help by talking about dementia as a condition that is all around us. ‘Nothing to be ashamed of’. Dementia takes us on a journey that none of us wants to make. But there are many ways to make a journey - and we can all help make that journey easier.

Slide 20: 

We are all here because we care about dementia. Some of us have the condition. Some of us care for someone with the condition. Many of us will develop the condition. Here are extracts from the diaries of ‘Jim and Sally’. Everyone’s experience is different, but everything in the diaries is based on the reality of people living with dementia in Suffolk.

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