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

Each year, 6,000 more people with dementia are predicted to be living by themselves in towns and cities across the UK, 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 people living alone with dementia in the UK. This number is predicted to double to around 240,000 by 2039. We also estimate that, by 2025, there are likely to be 700,000 people with dementia living in their local community, outside of those living in care homes, escalating to almost 1.3 million people by 2051, similar to the population in Birmingham. 

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 the majority of people (85%) believe they are most likely to meet someone with dementia in a care home, when in fact two-thirds of people with dementia live in the community. People are also unaware of the scale of the problem – two fifths (39%) 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 eight in ten (81%) 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 with dementia about their experiences of living in the community reveal that over half experience loneliness (58%) and isolation (56%), and are losing touch with people since being diagnosed (56%). Around a third said they felt unable to spend time with friends now they have dementia (29%) and around a quarter (27%) feel they are not part of their community and have disclosed that they feel people avoid them (23%). 

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. Two fifths (40%) said they wouldn’t feel confident about communicating with someone with dementia and a quarter (26%) said they would feel nervous approaching someone with dementia. 

Alzheimer’s Society’s Dementia Action Week aims to break down these barriers and start conversations across the UK, so 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. Using the hashtag #AskUsAnything, everyone is urged to share the film and start talking to people with dementia and about dementia. The film will appear on Alzheimer’s Society’s Facebook, Twitter and Instagram as well as in cinemas across the UK throughout Dementia Action Week.

Dementia Action Week encourages the UK to unite with Alzheimer’s Society in undertaking  small acts of kindness that make a huge difference to people with dementia, helping them feel included and involved in society, whether it’s calling a relative with dementia, visiting a neighbour or becoming a Dementia Friend. Starting a conversation is just the beginning to making sure everyone with dementia is included in society.  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 England, Wales and Northern Ireland to raise awareness of dementia and provide answers to questions people don’t feel comfortable asking. These include:

• Alzheimer’s Society’s innovative new campaign Dining4Dementia, inspired by Channel 4’s upcoming series ‘The Restaurant That Makes Mistakes’, which sees leading restaurants such as TGI Fridays and Pieminister unite with Alzheimer’s Society to raise awareness that with the right support and small adjustments many people with dementia can be included in society and lead the lives they choose. People with dementia will be buddying up with restaurant staff and volunteering front of house 18-19 May, giving customers a dementia-friendly experience and showing employers that it’s possible for people with dementia to still contribute to the workplace, even in fast-paced environments.
• Alzheimer’s Society’s Annual Conference (21-22 May), focusing on isolation and how cross-sector solutions can be found to create an inclusive society, providing optimism for people living with dementia.
• An #AskUsAnything social media takeover by people with dementia, allowing anyone to ask them questions on Facebook, Twitter and Instagram.

Dementia Action Week builds on the work of the biggest ever social action movement in dementia – Alzheimer’s Society’s Dementia Friends. Now 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 initiatives, which are 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 that 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.

The UK public also underestimate the capabilities of people with dementia and the contribution they can still make to society:

• A quarter of people (25%) believe people with dementia must have regular supervision from a carer to go about their daily lives.
• A third (33%) would be surprised if they were served by someone with dementia in a supermarket.
• Two thirds (65%) think people with dementia should stop driving.
• Around a third (30%) assume people with dementia have to stop working.

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