CQC shines a light on the challenges that people with dementia face

The Care Quality Commission (CQC) has today published a report on the experiences of individuals with dementia interacting with health and social care services, 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 CQC holds 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; and 

• 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; and  

• 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.   

CQC 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 CQC's 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. 

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.” 

The publication of this report coincides with Alzheimer's Society's Dementia Action Week. 

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.” 

CQC 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 its dementia strategy. This work will include producing guidance for providers in how to best care for people with dementia throughout health and social care. 

Notes to editors

• To identify common themes and examples of what good quality care for people with dementia looks like, CQC analysed: 

• a sample of 16 inspection reports from care homes that had been rated as outstanding in 2023/2024 where most of the people supported were living with dementia; 

• 6 Mental Health Act reviewer reports about wards for people with dementia – these reports were shared with CQC because they included examples of good practice

Findings from 2 focus groups with inspectors; 

• 100 responses to 4 questions from PIRs of residential and community services that care for people with dementia and who had referenced dementia care in their responses. The PIRs were submitted between April 2023 and September 2023; and 

• a sample of 200 Learning from Patient Safety Events  reported between June and December 2023 where people had referenced dementia. These events took place across the health and care system, from hospital to care in people's homes.   

• CQC also analysed 14 local authority assurance reports and interviewed assessors to understand how local authorities were supporting carers and people with dementia in their areas.  

• People share their experience of health and care services with CQC through its online Give feedback on care service, and in the free text responses to its National Patient Survey Programme.  

• CQC carried out a thematic analysis of a sample of 207 Give feedback on care comments relating to dementia between November 2022 to November 2023. The sample included comments from people using care homes, homecare and GP services. It did not include responses from people working in services. 

• CQC analysed over 300 comments from people identified as having dementia or Alzheimer's disease and who had discussed dementia in the 2022 NHS Adult inpatient survey, 2023 NHS Urgent and emergency care survey, and the 2023 NHS Community mental health survey.