Health and social care support for people with dementia

What is dementia and how can it be prevented and supported?

Dementia is caused by different diseases, including Alzheimer’s disease and vascular dementia, which affect memory, thinking and the ability to perform daily tasks.

Misconceptions about dementia include that it is a ‘natural’ part of ageing. However, it also affects people under 65 and research suggests that almost half of dementia cases could be prevented, for example by keeping active and managing hearing and sight loss. 

Focusing on preventing sickness to help people stay healthy and independent for longer is 1 of the 3 big shifts to the way health and care services work in the proposals for the government’s 10 Year Health Plan.

Care and support for people with dementia can be complex because of the high numbers of people living with dementia, and the variation in the symptoms each patient experiences.

The NHS and local authorities have statutory obligations to provide care for people with dementia, and support for unpaid carers, under the NHS Constitution, the Health and Care act 2022, the Care Act 2014 and the Carer’s Leave Act 2023. There are also many voluntary, community and social enterprise organisations that provide services for people with dementia, their families, and carers. As outlined in the NHS Long Term Plan, collaboration between the NHS and the third sector is key for improving outcomes for people with dementia and their carers.

The term ‘dementia friendly’ is used in this report, which has been defined as “a place or culture in which people with dementia and their carers are empowered, supported and included in society, understand their rights and recognise their full potential”. We will continue to explore language used in this area, as part of our Dementia Strategy.

How prevalent is dementia?

The number of people being diagnosed with dementia in England is increasing. NHS England figures show that in February 2025, nearly half a million people in England (496,471) had a diagnosis. But the estimated actual number of people living with dementia is much higher (figures from the Department of Health and Social Care estimate this to be over 700,000). 

Dementia was identified in Office for National Statistics figures as the leading cause of death in England and Wales in 2023, accounting for 11.5% of all deaths, with women being more affected than men. 

A 2023 dementia in the UK study found that:

• the likelihood of developing dementia in a lifetime is 36.2% (around 1 in 3)
• the likelihood of becoming an informal carer for a person with dementia in a lifetime is 30.4% (around 1 in 3)
• the likelihood of developing dementia, becoming an informal carer or both in a lifetime is 55% (around 1 in 2).

The study also reported that the number of people with dementia is forecast to grow over the coming years, largely due to population growth and an ageing population. It  estimated that 1.2 million people are expected to be living with dementia in the UK by 2040 (with some estimates even higher). This is a 30% increase from 2022.

The impact of dementia

The impact of dementia for people and their families can be profound. Around 40% of people with dementia experience mental health problems, like anxiety or depression according to a 2021 study. In 2024, the Alzheimer's Society published a survey that found that 75% of people who care or who have cared for a person with dementia reported experiencing at least one negative impact, with over half stating their mental and physical health had been negatively affected. 

The economic cost of dementia for society is also stark. A 2024 report commissioned by Alzheimer’s Society estimated the cost of dementia to the UK at £42 billion in 2024, and is forecast to rise to £90 billion by 2040. A high percentage of these costs (around 63%) are borne by people with dementia and their families. Health and social care costs amounted to around £24 billion last year.

But dementia can have a greater impact on some groups of people than others. The Major conditions strategy: case for change and our strategic framework, published by the previous government, highlighted the inequalities linked with dementia and acknowledges that more needs to be done to understand them:

We know that there are disparities in dementia. Some groups are more at risk of potentially preventable dementia than others and there are disparities in dementia diagnostic rates across the country. More research is needed into dementia risk factors, including disparities such as those that exist between different ethnic groups, by gender and by deprivation.

Findings from our analysis of provider information returns

We reviewed the most recently available provider information returns (information that care homes are asked to send us annually) from active care homes that carry out the same regulated activity (providing accommodation for persons who require nursing or personal care), submitted between April 2021 and March 2024 (13,725 in total). Two-thirds of care homes (9,319) told us that they supported at least 1 person with dementia, and 1 in 3 (5,362) reported that more than half of the people they care for have dementia.

The provider information returns also indicated that care homes that support people with dementia tend to be larger than those that do not. While 83% of care homes that do not support anyone with dementia are small (supporting 10 or fewer people), only 3% of care homes where most people have dementia were this size. In contrast, 23% of care homes where most people have dementia are large (supporting 50 or more people).

To safely and effectively support people with dementia, care home staff need knowledge and skills, and providers need to ensure their staff have enough support and capacity. Failure to meet these needs may expose people with dementia to increased risks to their safety and human rights.

Despite this, our analysis of provider information returns found that care homes where more people had dementia were more likely to report staffing issues, which can prevent high-quality care. In the care homes we looked at, as the proportion of people with dementia increases, staff-to-person ratios decrease, staff turnover increases, there are fewer qualified staff, and fewer staff have named supervisors. For example, there are 20% more staff per person in care homes where fewer than half of people have dementia than in those where most have dementia.

Our analysis of provider information returns also suggests that care homes with a higher proportion of people with dementia may also be responding to staffing pressures through a greater use of restrictive practices.

We found that care homes where more than half of the people have dementia included restraint or restrictions in 37% of people’s care plans, compared with 28% in homes where people with dementia are a minority.

Where restraint and restriction are not used as a last resort, this means that people’s human rights are likely to be compromised.

Many people with dementia may also be deprived of their liberty in a care home and be subject to a Deprivation of Liberty Safeguards authorisation. As part of the National Preventive Mechanism we must take an approach as a regulator where we are preventing inhuman or degrading treatment for these people.

Findings from our provider notifications

Given these findings from provider information returns, we wanted to explore whether care homes that support more people with dementia have a higher rate of adverse events. 

Registered providers must notify us about certain changes, events and incidents that affect their service or the people who use it. We encourage providers to submit notifications, as it demonstrates a culture of transparency and learning and is linked with good care.

We analysed a year of notifications up to September 2023 to investigate patterns in care homes supporting people with dementia. We found that:

• compared with care homes that do not support people with dementia, care homes where the majority of people have dementia submitted more than twice the number of notifications of serious injuries per person
• among care homes where everyone is aged 65 or over, care homes where the majority of people have dementia submitted 75% more notifications of abuse or allegations of abuse per person than care homes where people with dementia are in the minority.

Further analysis showed that large care homes supporting people with dementia are associated with a larger number of notifications per person. For example: among care homes where more than half the people have dementia, large care homes (supporting 50 or more people) reported 54% more notifications of serious injuries per person (as many as 1 for every 5 people) than small care homes (supporting 10 or fewer people). 

The rest of this report details further challenges faced by people with dementia and their family and carers and what good support can look like.