Living with Dementia in Lincolnshire – your experience
What we set out to achieve
NHS Lincolnshire ICB sought feedback to find out what’s working well and what could be improved for people living with dementia and their carers in Lincolnshire.
The engagement asked about peoples experience with dementia care in Lincolnshire – from diagnosis and support, to prevention, community resources, and overall wellbeing. The feedback received is helping to improve services and support for people living with dementia and their carers.
What we did
The survey was available to complete between 22 December – 9 February and received 136 responses.
To ensure widespread awareness and participation, the engagement was actively promoted across multiple channels:
• 7 Facebook posts, reaching 10,052 people and generating 201 engagements
• 169 people visited the webpage – Dementia Carer and lived experiences survey –
• Featured in 3 fortnightly NHS Lincolnshire ICB engagement bulletins and 2 Primary care bulletins.
• 4 posts on the Nextdoor online forum – the total reach of the NHS Lincolnshire ICB Nextdoor account is 110,269 members spanning across 471 ‘neighbourhoods’ enabling us to reach a variety of communities, villages and towns across Lincolnshire.
• Providers’ member databases and staff networks.
What you told us
• Diagnosis is hard and often slow: only 37% found it easy; 34% waited 6–12 months and 8% waited 2+ years.
• Communication and coordination issues in the diagnostic pathway (delays, unclear next steps, services not joined-up).
• Information at diagnosis is inconsistent: 26% didn’t receive information; people want clear explanations, “what to do next”, support/entitlements, carer-focused info, and emotional support.
• Post-diagnosis support is missing for many: 48% received professional support, 44% did not; biggest asks are regular follow-up and a single point of contact.
• Most don’t feel supported overall: 69% said they do not feel supported in Lincolnshire; key needs include follow-up, signposting, SPOC, respite/day support, and more face-to-face help.
• Community offer feels limited: only 35% found their community supportive; people value cafés/groups but report gaps in respite, professional input, and meaningful activities.
• Prevention/risk reduction isn’t reaching people: 57% not offered risk-reduction info; many say they never/rarely have opportunities locally
The difference it’s made
• Feedback has been reported into the Dementia Programme Board (held quarterly) and helped inform the Dementia 100 survey.
• The engagement has supported us to identify gaps and provisions both locally at place level and system wide. This has helped us align with the 5-year plan and set future priorities for Lincolnshire.