Today we have published a report on the experiences of individuals with dementia interacting with health and social care services in England, and how these services are responding.
Based on direct engagement with people living with dementia and their loved ones, as well as analysis of a range of information we hold, the report found that:
- people did not always feel there was ongoing care for people living with dementia and that they had to seek out community charity support groups themselves
- health and social care staff do not always understand the specific, personal care needs of people with dementia and how care environments, like hospital wards and care homes, sometimes do not support people's wellbeing.
However, the report also found:
- how good care for people living with dementia is provided in considered environments by well-trained, compassionate professionals who understand the person and how best to relate to them
- that people who had good support from their primary care services during their dementia diagnosis and ongoing support described the positive effect this had on their wellbeing
- that when a GP provides support and understanding of concerns during an assessment, it can help improve the person’s experience and lead to a more timely diagnosis.
We engaged with over 50 stakeholders with interest and expertise in the care and treatment of people with dementia, and analysed feedback, surveys and other data to inform this report. The aim was to inform the development of our dementia strategy and understand from their point of view what the key issues are facing people living with dementia, their carers, and health and care services.
The publication of this report coincides with Alzheimer’s Society’s Dementia Action Week.
James Bullion, Interim Chief Inspector of Adult Social Care, Care Quality Commission said:
Dementia can have a significant and sometimes devastating effect on so many people’s lives. This report shines a light on the challenges that people with dementia and those who care for them face when accessing and using health and social care services. It also highlights the practice that some services are taking to improve people’s lives and those who care for them. We will use the findings from this report to develop, alongside people with lived experience, providers and other stakeholders, a definition of what good, joined-up dementia care looks like so that we can apply it to all areas of our regulatory activity.
Jen Keen, Alzheimer’s Society’s Associate Director of Evidence, Policy and Influencing, said:
Around one million people are living with dementia in the UK, making them one of the biggest groups relying on health and social care, so we welcome this new report and CQC’s commitment to developing a dementia strategy.
“We know that dementia care needs an urgent overhaul in the UK. This report paints a stark picture of long-standing issues which cannot be ignored including staffing challenges, a lack of dementia-specific training, and pressure on unpaid carers. It also highlights some shocking findings notably a concerning disparity in the rates of abuse notifications in care homes where the majority of people were living with dementia.
“It’s vital that the findings from this work help to drive real improvements to dementia diagnosis and care, including a statutory duty for dementia-specific training for all care providers registered with the CQC, as well as a long-term social care workforce strategy. We want to ensure people living with dementia can access safe, affordable, high-quality care delivered by a well-trained and fairly paid workforce.
We will use the findings in this report, alongside working closely with people with lived experience, charities and support organisations and wide-ranging stakeholders with dementia expertise to develop our dementia strategy. This work will include producing guidance for providers in how to best care for people with dementia throughout health and social care.
Read the report: Health and social care support for people with dementia