Hear our voice: improving dementia and memory loss services and support in Cornwall through carer experience

Healthwatch Cornwall undertook research with Cornwall Memory Cafe Network and colleagues to hear from carers of people living with memory loss and dementia in Cornwall.  They spoke to 184 people in total.

Carers described positive experiences of accessing care and support, particularly from dementia-specific roles and where regular, planned reviews were in place. Having a professional who was accessible – especially when concerned or during a crisis, provided much-needed reassurance and support. The voluntary sector and local support groups and services were a valued source of information and advice. They provide meaningful activities, training, and advocacy (whether formally or informally) in local communities. Connecting with other carers was important to people, and carers welcomed continuity of staff when connecting with health and care professionals.

Despite this, many carers also described negative experiences of feeling lonely and isolated. Some told us they felt abandoned or that access to services and support was patchy or inconsistent. Navigating the health and social care system to access a range of services and support was often a struggle: information, advice, assessments and financial support were not always volunteered proactively, routinely, or when needed most. Services were not always connected.

Carers wanted practical information and advice that was relevant to them as individuals and their caring circumstances. Access to meaningful activities enhanced the well-being of both the carer and the cared for. There is a variety of great services providing this in Cornwall, most often through the voluntary sector. However, not all carers were made aware of these services or information proactively or were able to access them for reasons including, transport, online/digital access, juggling work and caring, and being able to leave those they cared for.

Having access to respite services to support carers to take a break from their caring role when needed is vital to maintaining carer health and well-being and preventing a crisis. However, this was one of the things carers told us they most wanted to see improved. While the number of respondents caring for people with early onset dementia (those diagnosed under the age of 65) was small, there was a clear gap in service provision for those with this diagnosis and their carers.

The report contains recommendations about timely access to diagnosis and accessible support.