“We don’t have back-up brains”

At one of our recent stakeholder events, people living alone with dementia and without informal support emphasised why there needs to be awareness of and input for people in this situation. “We don’t have back-up brains;” there isn’t someone, who can help with the day-to-day thinking and processing that keeps things ticking along.

Whilst many services are set up on the assumption that people living with dementia will have some family of friends to help them out, this is not always the case. “There are lots of us,” people with lived experience told us, and “this group is different.”

The stakeholder events were an opportunity to share initial messages from the research about what people with dementia need to keep living alone successfully:

  • The support they require is individual and it isn’t always obvious where to go to get this.
  • Groups need to be set up in ways that work for people living alone.
  • Emotional support really matters and there needs to be a way to access this.
  • Building networks can be hard and networks can be fragile; help is required to create and maintain them.

When we discussed these messages at the events, participants – people living with dementia, commissioners, practitioners and providers – talked about the importance of everyone being aware that this group exists. That includes people living with dementia themselves, GPs, memory clinics, adult social care, neighbours and communities, and voluntary sector organisations.

Participants living with dementia created a list of what these audiences need to know:

  • Sit down with me first
  • We know when something’s not right, take it seriously
  • If there is something for carers, there should be something equivalent for people with dementia
  • Don’t have a pathway, have crazy paving – we are all different and need our own way through this, make it obvious where to get information
  • Please be proactive, don’t assume
  • The little things make a big difference
  • Peer groups work
  • Opportunities for creative self-expression are important
  • Give us more chances to find the right stuff
  • Human libraries – people with dementia know stuff
  • Emotional support is the hardest thing to do on your own.

The conversations at the events started the process of co-creating resources to get these messages out.

These co-created resources aim to ensure that our research helps to improve the experiences of people living alone with dementia and without a carer.

As one participant said “we need to get Living Alone seen as a different thing; it’s got a whole different set of priorities.”

To find out more please contact us.

Notes from people with lived experience at our Stakeholder event






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