Living with Dementia during Covid-19

South East Sheffield Community Dementia Advice Service used our #SpeakUp grant funding to understand what it's been like for people with dementia, and those who care for them, during the pandemic. What additional support do they need?
Older couple on the bus

Extra challenges - caring for someone with dementia during Covid-19

We heard from people living with dementia, as well as their family carers, as part of this project.

What came out strongly was that the pandemic had made some people's challenges even harder. Some people, especially those whose relative was in a care home, said separation had been difficult and had a negative effect on dementia symptoms:

"I am not sleeping because I am worried about my wife whose dementia has got worse. She is in a home and probably won’t recognise me. I am scared of going to see her"

People also told us that the health and social care system was difficult to navigate - this was made even worse when people couldn't get through to the services they were trying to contact. Instead of caring for their relatives and getting the right support for them, people were chasing organisations which they said were supposed to help:

"We should not have to spend so much time ringing telephone numbers that are never answered"

How can we learn from this and make things better?

Covid-19 exposed some of the gaps in support for those living with dementia and their families, and made some existing issues worse. The people we spoke to had lots of ideas for how support could be improved to help them live their life in the way they choose. These are some of the things they want to see:

Navigating the system:

  • A one-stop shop where providers have been “vetted so you feel comfortable with the choices on offer”
  • Offering more support for families
  • Involving the family at an early stage

Communication and information:

  • Being able to see professionals face-to-face
  • Being given information at an early stage
  • Having “someone to explain ‘this is what you do if...’ would be better than reading loads of booklets”
  • Improving communication with families

What's next?

Based on people's experiences, and the things they told us they'd like to see improve, we've made several recommendations to local health and social care commissioners. We would like to see improved support for people living with dementia, and those who care from them, and we hope that hearing directly from those impacted will have a positive influence on how support is designed and delivered in future.

Find out more

To read about people's experiences in more detail, as well as the recommendations we've made for improvement, read the full report:

Cover photo credit: Ageing Better

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