Living with dementia in Leicester, Leicestershire and Rutland

Healthwatch Leicester, Healthwatch Leicestershire and Healthwatch Rutland undertook research to represent the public voice in the development of the 2024 Dementia Strategy for LLR at a time when the incidence of dementia is forecast to increase. They used mixed methods, including background research, engagement with service providers, surveys, focus groups and interviews with people living with dementia and carers. Altogether they spoke to 514 people.

Key findings:

• There are inconsistencies across the area with variations in the speed and types of diagnostic pathways.
• Despite multiple channels of information, there are inconsistencies in people’s experiences of access to and appropriateness of it.
• There is an inconsistent provision of and access to support services with many different barriers to be addressed.
• There is poor recognition of the needs of those with early onset dementia.
• There were suggestions supporting the need for a single point of access, such as a hub, to improve information and access to services.
• People living with dementia and their carers who had access to services provided by Admiral Nurses, Age UK, Voluntary Action South Leicestershire (VASL) and the Alzheimer’s Society highly value the support and information they receive.
• Access to primary care is often difficult with suggestions that ongoing needs, including annual reviews, are either overlooked or not adequately addressed.
• Access to specialist mental health services is difficult.
• Adult Social Care is difficult to access and slow to respond and requests for much-needed support are sometimes declined.
• Carers need support to plan and cope with times when they can no longer care due to their own health concerns or because the person with dementia is admitted to a care home.
• The COVID-19 pandemic restrictions have had a negative impact on people living with dementia in terms of social isolation, deteriorating health and hospital admissions.
• Transport to groups and support services is problematic – especially in rural areas.

The report contains five recommendations about the need for a system-wide review, access to information, listening to people with dementia and their carers, improving access to health and social care and a review of mandatory training for all staff involved in the planning and delivery of dementia services.