“I don’t know what I don’t know”

At our recent webinar for social care providers, two of our project advisors, Michael and Wayne, shared their experiences of living alone with dementia and managing without informal support.

They highlighted the importance of having ‘someone to contact’ when things weren’t working as they expected, for example when Michael suddenly couldn’t work out how to use a tin opener. This was about having back-up for the day-to-day things that could throw them off track.

Wayne talked about the need for organisations to be proactive. Providers and others need to make sure that people have the information that they need. As he put it ‘I don’t know what I don’t know.’

At the webinar, the Living Alone with Dementia research team shared the main findings from the project. They had spoken to 22 people who were managing on their own and without informal support.  People talked about the importance of building a network that suited them, of emotional support and of services that are geared up for people to attend alone.

People faced barriers such as lack of transport, awkward times for services, groups not accepting people without a relative or friend, changes in provision or simply loss of any contact when one agency finished its input and no ongoing check-in was planned.

Image from the Centre for Ageing Better’s Age-positive Image Library

Key themes for providers were:

  • Pathways of communication help people find services
  • Inequities exist, for example, access and transport
  • Emotional support matters alongside practical support
  • Services are precarious, as are networks
  • Services can be proactive in building wider networks.

Participants commented that the findings resonated with them and chance plays too big a part in what happens.

The providers shared experiences of trying to connect people with services and finding that the service no longer existed or had a long waiting list. Encouragingly, some providers had experience of offering ongoing tailored support to people on their own, and of building services that enable people to attend alone.

Participants emphasised the importance of different kinds of support and practical help to connect with services. They wanted commissioners to recognise this group and set up a pathway for ongoing contact. They agreed that setting things up for people living alone and without informal support has benefits for people with carers and family too.

All of these comments and experiences will feed into our final resources.

Thank you so much I have found this so beneficial and can relate. I am looking forward to feeding back to my team. (Participant feedback)






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