Health and social care support for people with dementia

In this report, we use evidence from our inspection activities with other information and personal experiences, including from people who use services, their families and carers, to inform our view of the quality of care for people with dementia.

We have collected bespoke qualitative evidence to understand the experiences of people with dementia. We have gathered views from our inspection and assessment teams, key stakeholders, subject matter experts and people with dementia and their family and carers to understand what it is like to access and experience health and social care while living with dementia. 

We have also reviewed reports published by our stakeholders and analysed publicly available datasets to supplement our understanding of the challenges facing people with dementia and their carers. 

People's experiences

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

• We 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.
• We 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.

When people share their experiences through our Give feedback on care service they are consenting to giving us their feedback. We tend to receive more negative comments than positive comments from the public. People often include more detail in their negative feedback to us, which means we can say more about these experiences.

We also commissioned PPL, a management consultancy, to gather the experiences and case studies of people with dementia and their family and carers, from diagnosis through to end of life. 

We analysed of 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.  

A view of providers

To identify common themes and examples of what good quality care for people with dementia looks like, we 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 us because they included examples of good practice
• findings from 2 focus groups with inspectors.

We 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. 

We ask adult social care providers to submit a provider information return (PIR) form every year. As well as helping to monitor the quality of care, this asks the provider about any changes that have been made in the past 12 months and how they are ensuring their service is safe, effective, caring, responsive and well-led. We carried out qualitative analysis of 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.

We have also included experimental quantitative analysis using our PIR and statutory notifications data. The PIRs used here were between April 2021 and March 2024 (13,725 in total), to enable us to review a larger sample and take the most recent available submission from providers:

• we used quantitative data from PIRs to estimate the number of people with dementia in each registered care home, the age of people living in the care home and the total number of occupied beds
• we looked at various staffing measures from the PIR including vacancy level, staff turnover, percentage of staff with a care certificate, average number of staff qualified at level 2+ and the average percentage of staff with a named supervisor and compared this with the proportion of people living with dementia in each care home
• we used the reporting of statutory notifications – particularly abuse or allegation of abuse and serious injury in care homes and PIR data on the use of restraint and restriction and compared this with the proportion of people living with dementia in each care home.

PIRs are collected through an online self-completion questionnaire and, while we have applied cleaning rules as part of our analysis, the returns are not validated and may be subject to data quality issues. These cleaning rules also mean that some PIRs are not able to be included in the analysis.

We also consulted widely with stakeholders to inform our report. We engaged with over 50 stakeholders with interests and expertise in the care and treatment of people with dementia between March and June 2024. The aim was to discuss CQC’s dementia strategy and understand from their point of view what the key issues are facing dementia services, people living with dementia and their carers.