People with dementia highlight stigma and isolation, backed up by public survey

Posted On: 
22nd May 2018

A year on from the largest ever survey of people with dementia ‘Turning up the Volume’, to gather a full picture of living with dementia today, Alzheimer’s Society talked to more than 500 people affected by dementia and those working with them - and it’s clear the same problems persist, as the first ever Dementia Action Week (21-27 May) launches. Alarmingly, people reported the loss of their friends and social life post diagnosis, facing isolation caused by public stigma, fear and misunderstandings of dementia, and of how to interact with people living with the condition. 

Dementia is the biggest health and social challenge we face. With one person diagnosed with dementia every three minutes in the UK, almost everyone knows someone affected but too many people face the condition alone, without adequate support. While much progress has been made to becoming a dementia friendly UK, including 2.4 million Alzheimer’s Society Dementia Friends trained globally and over 350 dementia friendly communities across the UK, people with dementia tell us that more urgently needs to be done. That’s why this Dementia Action Week Alzheimer’s Society, the UK’s leading dementia charity, is calling on everyone across the UK to play their part. 

People affected by dementia highlighted the small actions that would have a big impact on their lives and enabling them to live the lives they choose, such as continuing to invite people with dementia out and making sure you listen and include them in conversations.

Alzheimer’s Society is asking everyone to take these this week:

  • Talk to me. Don’t be worried about talking to me. I’m still me.
  • Listen to me. Take time to listen and involve me in the conversation. I can still teach you a thing or two.
  • Include me. Keep on inviting me out. Friends still mean the world to me.
  • Ask if I need help. If I seem confused, ask if I need help. These little things help me stay independent.
  • Be patient. Be patient with me and I’ll show you how I can still do things. It just might take me longer than it used to.
  • Ask me about my dementia. Don’t be afraid to ask me questions. When you take the time to understand my dementia, I know there’s someone on my side.
  • Help my carer too. Support my partner and others who care for me. My dementia affects them too.

Pamela Roberts, who lives with dementia and features in the Dementia Action Week campaign, says: “There is a big stigma. I think there’s a fear of how do I talk to that person? But I’m still me, I can still hold a conversation, I can still recognise people and even when I can’t, I still want to be talked to the same.”  

Alzheimer’s Society support Shelagh Robinson, also living with dementia, says: “Understand I’m still the person I always was, but now I have memory and cognitive problems. My diagnosis of dementia doesn’t and shouldn’t define me. Nor should I be ashamed of what is beyond my control. I am still me. Realise I have value, skills, knowledge and experience.”

Pamela and Shelagh’s comments echo the findings of a separate new survey of over 2,300 UK adults which highlights the stigma and misunderstandings around the condition that contribute towards the isolation so many people affected by dementia feel.

  • 50% reported not feeling confident even visiting someone with dementia in a care home or inviting them to a meal at home
  • Over two-thirds (69%) said they wouldn’t feel confident in knowing how to help someone with dementia if they saw them struggling in a public place. 
  • Over half of people (51%) saying they didn’t know enough about dementia.
  • Nearly half (47%) thought people with dementia shouldn’t be left on their own, 39% that they need constant supervision.3

The social isolation people with dementia feel is echoed in the public’s worries. Over half (55%) say dementia is their greatest concern for old age, ahead of being lonely/going into a care home/not having enough pension, and 55% felt their life would be over if diagnosed; over two-fifths (42%) worry that people would treat them like a child and over a quarter (26%) of people polled said they would be concerned their friends wouldn’t want to see them any more if they were diagnosed, with 24% having the same concerns about family members.  This is no doubt partly because over two-thirds (67%) are concerned about being a burden to others if diagnosed, mirroring the concerns of people with dementia in the Turning up the Volume report which revealed 48% were worried themselves about becoming a burden. 

However, despite the public’s fears about dementia and lack of understanding, the UK public would seem to support the campaign, with 84% of people polled expressing that everyone should be aware of dementia and the small ways they can support people, 84% saying they could easily be more patient to help a person with dementia and nearly four-fifths (79%) saying it would be easy for them to invite a person with dementia out. There’s also strong support for community change, with 86% saying that activities should be made accessible for people with dementia, 79% saying that all transport should be made more accessible, over three-quarters (76%) agreeing that shop staff should be trained to help support customers with dementia.

The new 2017 Dementia Statements set out the rights of people with dementia to be treated the same as others, including ‘the right to be accepted and included in our communities and not live in isolation or loneliness’. They are behind the renaming of Dementia Awareness Week to Dementia Action Week this year in recognition that it is action that is urgently needed to help people with dementia and their carers feel included and not abandoned in their community. From continuing to invite people with dementia out, to making sure you listen and include them in conversations, people affected by dementia have told us what will make the biggest difference – and Alzheimer’s Society is asking everyone to take these this week.

Commenting on the findings, Jeremy Hughes, Chief Executive of Alzheimer’s Society, said:

“A year from the launch of the new Dementia Statements, setting out the rights for people with dementia to live the lives they want and be included in society, it is saddening to see that there is still so much fear and stigma surrounding dementia. There is no denying that living with dementia is enormously challenging and so it is vital that we all unite to tackle the biggest health and social care issue of our day. 

“We have already taken great strides forwards to improve the experiences of people with dementia across the UK. Over 2.4million people have already become Dementia Friends and there are already over 350 communities working to become dementia friendly but collectively we need to do more.  It doesn’t have to be complicated, committing to simple actions like being more patient or including a person with dementia in the conversation will all help to do this.

“We are urging everyone to get involved this Dementia Action Week and pledge their support by visiting alzheimers.org.uk/DAW.”

Scott Mitchell, the husband of iconic actress Dame Barbara Windsor, who revealed earlier this month she had been privately living with Alzheimer’s disease for four years, said:  

“I know first-hand just how difficult a dementia diagnosis can be not only for the person affected but everyone close to them. When Barbara and I decided to share the news of her diagnosis, we were both overwhelmed not only by the outpouring of support but also by the number of people who seem to be in very similar situations themselves. For me personally, being able to talk openly about Barbara’s dementia has been invaluable and a huge sense of relief. It is so important that we address the stigma surrounding dementia and all make small changes in our communities to help people like Barbara to continue to go out and live the life that they want. This is why we are supporting Alzheimer’s Society’s Dementia Action Week and hope of lots of people across the country also get involved.”

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