A lonely future: 120,000 people with dementia living alone, set to double in the next 20 years

Six in ten people with dementia say they experience loneliness and isolation. Alzheimer’s Society’s #AskUsAnything launches Dementia Action Week 20-26 May, calling on people to start talking and include people living with dementia

Each year, 6,000 more people with dementia are predicted to be living by themselves, according to leading dementia charity Alzheimer’s Society. The figures were released to mark the launch of the charity’s #AskUsAnything campaign, which runs throughout Dementia Action Week (20-26 May). The campaign aims to end the awkwardness and create a more inclusive society for people affected by dementia.

Currently, there is up to an estimated 120,000 1 people living alone with dementia in the UK. This number is predicted to double to around 240,000 by 2039 2.

Most people aren’t aware of the proximity of people with dementia in their everyday life, even though two fifths of the UK population know a family member or close friend living with dementia.  A new YouGov poll revealed that  people are also unaware of the scale of the problem – in Wales a third (33%) 5 underestimated how many people will be living with dementia in the UK by 2051 by at least half a million.

Even with this underestimation, around seven in ten people in Wales (77%) feel that society is unprepared for the growing number of people with dementia.

New findings from an Alzheimer’s Society survey of over 350 people 6 with dementia reveal that over half experience loneliness (58%) and isolation (56%), and are losing touch with people since being diagnosed (56%).

The prevalence of isolation and loneliness experienced by people with dementia could partly be explained by long-standing feelings of awkwardness and nervousness among the general public. In Wales a third (33%) of people said they wouldn’t feel confident about communicating with someone with dementia and a fifth (20%) said they would feel nervous approaching someone with dementia.

Alzheimer’s Society’s Dementia Action Week aims to break down these barriers and ensure people with dementia are included in society. As part of the campaign, the charity created a film of children asking people affected by dementia thought-provoking and funny questions, as a way of busting myths and showing that people with dementia are still the same people. The film will appear in cinemas across the UK throughout Dementia Action Week.

Dementia Action Week encourages you to help a person with dementia feel included and involved in society, whether it’s calling a relative, visiting a neighbour or becoming a Dementia Friend. People can also volunteer for the charity’s Side-by-Side service, which matches people with dementia with dedicated volunteers enabling them to keep doing the things they love.

Events are taking place across Wales, you can visit alzheimers.org.uk/DAW to find an event near you.

Dementia Action Week builds on the work of the biggest ever social action movement in dementia – Alzheimer’s Society’s Dementia Friends. 2.9 million members strong, the initiative aims to transform the way the nation thinks, acts and talks about the condition, tackling the lack of understanding that is resulting in such high rates of loneliness and social exclusion.  There are also over 400 Dementia Friendly Communities – inspiring businesses, individuals and groups to change the way they act and support people affected by dementia.

Further findings from the survey of people with dementia:

• One in six (15%) admit that they don’t do certain things because they feel they won’t be welcomed or accepted.
• Around two fifths (37%) of  our respondents confess their neighbours don’t even know they have dementia.
• A quarter (24%) say that some of their friends are in the dark about their diagnosis.
• 33% said they had become emotionally distant from their friends.

Ernie Malt, 72, was diagnosed with vascular dementia and frontal temporal lobe shrinkage in 2014. Since his diagnosis, Ernie, who lives alone, has set up a dementia café and sensory garden in his local Church and Grounds to help others with the condition. Ernie said:

“People with dementia have been left right at the end of the list of medical conditions and I wanted to do something to improve access for people with dementia in my village. But one of my motivating factors for setting up the dementia café in my village was also to help myself by supporting others rather than feeling sorry for myself.

“I do get lonely – I have family but they’re not nearby and it’s not very often that people come to see me at home. When you live alone, it’s the little things that cause you problems, like walking into the kitchen and not knowing why you’re there, or trying to do something on the computer but not having a clue what your password is. What I’d like to see is dementia being considered on a similar level to other long term illnesses. If more people understand the condition, it will make such a difference.”

Commenting on the findings, Jeremy Hughes, Chief Executive at Alzheimer’s Society, said: “The frightening isolation of so many people with dementia is a wakeup call for all of us. Reaching out and starting conversations can make a big difference, so people with dementia feel much more included in society.  Misconceptions and feelings of awkwardness around saying the wrong thing are prevalent. We can change that by talking more about dementia and taking time to talk to people with dementia.

“Dementia isn’t going away – two fifths of us know someone with dementia and two million people will be living with it by 2051. Too many people face a future alone with dementia and without adequate support. Dementia shouldn’t mean becoming a prisoner in your own home. It shouldn’t mean that everyday activities, like going to the local shop, fill you with anxiety and dread. And it most certainly shouldn’t mean people feel abandoned and isolated with nowhere to turn. Dementia Action Week is a rallying cry to businesses, communities and individuals across the UK to unite with us and help people with dementia live better lives.”

Throughout Alzheimer’s Society’s Dementia Action Week (20-26 May), everyone is encouraged to play their part and commit to a simple action. It’s as simple as being patient if someone is struggling in a queue, eating at a participating Dining4Dementia restaurant or being willing to help if someone looks confused.

This Dementia Action Week, it’s time to start talking. Find tips on how to start a conversation with someone living with dementia at alzheimers.org.uk/DAW