New research shows people in Cornwall living with dementia and their carers often struggle to access the care and support they need
Carers described services and support across the county as patchy or inconsistent. Navigating the health and social care system was often a challenge. Many carers struggled to access regular reviews, respite and support leaving them feeling lonely and isolated. Information, advice, assessments and financial support were not always volunteered proactively, routinely, or when needed most. Experiences varied across areas of Cornwall, between carers – such as those caring for a spouse/partner, parents, working carers etc.
Carers particularly appreciated regular reviews and support from dementia-trained staff although, staffing and caseload pressures led to poorer access and experiences for some. Having access to meaningful activities, support groups and advice was highly valued. This was most often provided by voluntary organisations. However, this support wasn’t accessible to all, or available in all areas of the county.
The comment that I am sure will haunt me from my mum…'it feels like nobody really cares and I have been left to die.’ I watch as she continues to decline weekly and feel sad that even as a person who understands the health sector, I am not able to get her access to services that would mean mum and her family that care for her have the quality of life they deserve.
There are currently over 5000 people in Cornwall diagnosed with dementia out of a possible 9,460. In the UK, the number of people diagnosed is predicted to grow by 80% by 2040. Carers currently provide around two-fifths of the UK’s total health and care costs for dementia. While dementia isn’t a normal part of ageing, prevalence increases with age and Cornwall has a higher-than-average older population. Dementia care presents a significant challenge locally and nationally. Cornwall’s new Integrated Care System (ICS) has named dementia a key priority.
The research found less than 1 in 2 carers (43%) can access a GP when they need to and even harder for those juggling caring and work (33%). Carers are often slow to recognise themselves as such. Under half (49%) said they were recognised by their GP as a carer, yet caring so often impacts upon a carer’s own health and wellbeing. Just over a third (38%) had a formal Carer’s Assessment to assess how caring impacts upon their life and any support they may need.
Cornwall’s Memory Cafe Network often hears about challenges carers face in accessing help and support and the desperation this causes, from the volunteers who organise and run the independent Memory Cafes. Dr Allison Hibbert, ICS Lead for Dementia, along with the Memory Cafe Network, approached Healthwatch Cornwall to carry out this research.
Among the findings, carers ranked the things they would most like to see improved as:
- respite – having opportunities to take a break from their caring role
- more opportunities to access meaningful activities
- to have easier access to help or advice, and a phone number to call for help – particularly during a crisis
- to see health and care staff face-to-face
- easier access to an appointment with a GP
The report outlines a comprehensive set of 40 recommendations for developing a clear pathway of dementia services and support that is accessible and local to people. Healthwatch Cornwall will monitor the System’s action plan in response to the research, which it hopes will outline more education for staff and public awareness raising, along with addressing the gaps identified.
The Network will now wait with anticipation that decision-makers in our new, integrated health and social care system will respond to this report with compassion and action that brings about system change - placing the person living with memory loss and their care partners at the centre of service provision enabling the most appropriate support in its many forms.
The ICS Dementia Programme Board confirmed it aims to address all the recommendations during 2023/24 as part of the dementia improvement programme and will incorporate them within the draft strategy. Monitoring and reporting against the recommendations will be included in the monthly dementia programme board meeting and highlight reports.
You will see from the report’s recommendations we need to address a wide variety of areas to improve services, including to access useful information, recognition of carers, social care, health services for older adults living with dementia but also for those with young onset dementia. I would like to thank all who have supported this project, especially carers and people living with dementia, the team at Healthwatch Cornwall, Cornwall Memory Cafe Network and carer group volunteers.
Read the report
If you require the following documents in a different format, please email enquiries@healthwatchcornwall.couk
