Health and social care support for people with dementia

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.

The number of people being diagnosed with dementia is increasing. In February 2025, nearly half a million people in England had a dementia diagnosis.

The likelihood of developing dementia, becoming an informal carer or both in a lifetime in the UK is 55% (around 1 in 2).

The number of people with dementia is forecast to grow over the coming years, largely due to population growth and an ageing population, with estimates that 1.2 million people are expected to be living with dementia in the UK by 2040 (with some estimates even higher).

For this report we looked at what people were telling us, through surveys and feedback, about their experiences of living with dementia when using health and adult social care services, including the experiences of families and carers. We have set out the main themes that influence whether an experience is good or poor, and what health and care services are doing to improve these experiences.

We will use the findings in this report to help shape our work to define what good care looks like for people with dementia and inform the next phase of CQC’s Dementia Strategy.

The impact of dementia

As described in this report, dementia is life changing for people living with it and those who care for them.

The economic cost is also stark. In 2024, the cost of dementia to the UK was estimated at £42 billion, and is forecast to rise to £90 billion by 2040. A high percentage of these costs are borne by people living with dementia, and their families and carers.

Dementia also has a significant impact on the provision of health and social care. For example, around two-thirds of care homes support at least 1 person with dementia, and in around a third of care homes, the majority of people supported have dementia.

Through our analysis, we found that care homes where more people had dementia were more likely to report staffing issues, which can prevent people from receiving 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.

We encourage providers to submit notifications, as it demonstrates a culture of transparency and learning, and is linked with good care. However, our analysis of notifications found that care homes that support more people with dementia have a higher rate of adverse events:

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

Access to health and care support

Although nearly half a million people in England had a recorded dementia diagnosis last year, the 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).

Diagnosis rates vary by region by nearly 10 percentage points – in the South West, 61.2% of people aged over 65 estimated to have dementia had a recorded diagnosis, compared with 70.1% in the North West.

People are waiting longer for their diagnosis. The average waiting time from referral to diagnosis increased from 124 days in 2021 to 151 days in 2023. Waiting times were affected by increased numbers of people being admitted to relevant services, while average staffing levels have not increased in accordance.

Through our surveys, people have also told us that they were having to wait too long for a diagnosis, and about a lack of ongoing care and support for dementia in the community.

There does not seem to be ongoing care for people living with Alzheimer's disease, or their carers. I have had to seek out community charity support groups. We have not seen a doctor, consultant or nurse on an individual basis for over a year.

However, people who had good support from their primary care services during their dementia diagnosis described the positive effect this had on their wellbeing.

My GP has been an amazing facilitator and advocate for me while undergoing my assessments leading to my early onset dementia diagnosis. She has been supportive and understanding of my concerns and I know my diagnosis would not have been as timely without her.

Through our engagement with adult social care providers, we have heard some good examples of how they are consulting and working closely with a variety of dementia support services and partners to share knowledge and provide specialist care to people with dementia.

To support people with dementia to get the best outcomes, it is important that local authorities and integrated care systems work with providers to consider the needs of people with dementia in their areas, and provide joined-up care.

Person-centred care

Understanding people’s care needs

People commenting in the 2022 Adult inpatient survey said that acute hospital staff do not always understand the specific care needs of people with dementia. The busy, often frenetic nature of the acute environment can lead to the needs of dementia patients being overlooked.

Similarly, our analysis of feedback about adult social care shows that often staff were not adequately attending to people’s day-to-day care needs. This included support with nutrition and hydration.

Dad was not encouraged to eat in the dining room which isolated him. Staff didn't encourage him to eat or drink. A water bottle had been in his room for two days, so his fluid intake was not monitored.

On the other hand, people also told us how important a person-centred approach is for good care and support of people with dementia.

The main difference is that in hospital Mother was under 24-hour observation but with very little human interaction from the staff. Last week I visited Mother in the home and she was in the lounge quietly singing Christmas carols while one of the carers was giving her a head massage – who wouldn't thrive in an environment such as this?

Adult social care services that support people with dementia recognise that everyone has a life story. Staff support people to maintain their routines and engage in the everyday activities that characterised their lives. They also recognise that dementia is a journey and people change medically and personally, so adapt their care and support over time.

Communication

Respondents to NHS hospital surveys often indicated that communication between staff and patients was poor, and family members and carers felt they were not consulted on their loved ones’ care and treatment. They also spoke of poor communication between services in discharge arrangements.

The lady was listed for hospital admission but because there were no beds was sent home by ambulance. She lives alone. The ambulance service did not put the heating on. The carers did not come for 12 hours post discharge and were unaware of changes to medication.

The NHS hospital surveys also described positive experiences, where communication was tailored to meet people’s needs and that their dementia was ‘seen’ and adjustments were made. People described the way in which staff communicated with them as ‘patient’ and ‘kind’, and staff ‘respected’ people with dementia.

Some adult social care providers are exploring how they can improve communication with people with dementia using physical and digital tools. This includes technology to help assess pain for people who may not be able to verbalise it.

Our inspections also highlight steps to promote social interaction and understanding between visiting families and carers and people with dementia:

When you walked in, there was a corner where there were bags with lots of different games and activities for relatives to engage with their family member. And there was a poem on the wall that said, ‘I may not be able to remember what’s been said, but I'll always remember how you made me feel’.

Environment

People with dementia often need a stable, familiar environment with people they know around them to reduce stress and support their wellbeing. This can be challenging in a busy hospital environment.

Mum was moved ward and became very confused and frightened. She volunteered to be moved but I don't think her dementia was taken into account.

People also told us that their family members’ care homes did not support their overall wellbeing. For example, people’s bedrooms did not contain familiar objects or there was a lack of access to outside space.

Other care homes are adapting their environments to make them more ‘dementia friendly’ – helping people with dementia to be empowered, supported and included. For example, they have provided homely and calm spaces to support people with dementia. This included indoor and outdoor dementia-friendly garden spaces, dining rooms that encourage people to eat together, and spaces that stimulate the senses, like sound and lighting to enhance the natural cycle of day and night.

We have also seen the steps that some NHS hospitals are taking to improve the environment for people with dementia, including providing quiet waiting areas for people with dementia.

Keeping active

Keeping active and mentally stimulated is an important part of living well with dementia.

Responses to the Adult inpatient survey suggest that this can be difficult to achieve in a hospital setting. For example, one person said they were told mainly to stay in bed, while another was given a colouring book and left to “get on with it”.

We received similar comments about some adult social care services, with several people saying their loved ones were confined to their rooms with little or no contact with other people.

Dad was left to his own devices in his room alone. The staff either sat in the TV room on their phones, or in the dining room out the way. In 2.5 months I never saw any classes or therapy to help residents.

Not engaging or interacting properly with people with dementia can lead to a deterioration in their overall health and wellbeing. It can also be the trigger for distressed behaviours that require additional staffing support.

Care services gave some positive examples of activities that seek to understand each person, often engaging the local community into the life of the care home.

We have been able to access dementia-friendly viewings at our local theatre which are a more relaxed performance where residents living with dementia can feel more comfortable.

Staffing and training

Staffing

The pressures on the NHS workforce are reflected in what people told us. This includes loved ones being left alone for long periods with no one attending to them and relying on their family carer to have their needs met.

The hospital was clearly overwhelmed but there were things that could have been done better. For example, nobody seemed to check how much fluid patients were drinking nor how much they were eating.

People also told us they were concerned about how low staffing levels could affect the quality and safety of adult social care for them or their loved ones – for example, people leaving their care home unexpectedly without staff knowing and being exposed to risk of harm such as falls, due to a lack of supervision.

Consistency in care staff was another issue that concerned some people. For people with dementia, being familiar with the people that care for them is important so they can build a relationship. It also helps staff understand what their needs and preferences are.

I was promised no more than 3 carers would visit my dad. But over 22 visits there were 15 different carers that visited. My dad would not be able to form a bond with so many 'strangers' as he called them visiting. How could they get to know him to provide adequate care? I didn’t feel the needs of my dad with his dementia were understood.

Comments about adult social care suggest good care for people living with dementia is provided by well-trained, compassionate professionals who understand the person and how best to relate to them.

I recall on one occasion when visiting our mother, [staff member] arriving with a copy of the Racing Post for one lady who he then had a wonderful conversation with about the horses running that day.

Recruitment

Adult social care providers have told us about the challenges they face in recruiting the right staff with the skills and experience required to support people with the care needs that can come with advanced dementia.

One of the ways they are tackling recruitment challenges is through expanding their use of social media, which has also improved occupancy and links with the local community.

Some providers included people with dementia in their recruitment and interview process. As well as being able to directly assess the dementia-specific skills of potential care workers, this can support people with dementia to engage previous life skills and to directly influence their care home.

Training

Data from Skills for Care highlights that only 29% of the care workforce in England have had any kind of dementia training.

Key stakeholders we engaged with for this work have identified a need for a clear baseline understanding of dementia for everyone who works in health and social care, at all levels.

Providers have recognised that staff need to improve their knowledge of effective dementia care. To address this, some adult social care providers have enrolled their staff on specific training.

In the past year we have continued our programme of experiential training (Virtual Dementia Tour). To ensure we embed understanding and empathy across the whole service, we have provided office team members, as well as frontline staff, with this engaging opportunity.

Family and carers

Family and carers play an essential role in supporting people with dementia to remain in their homes, access services and to receive appropriate care and treatment.

Some family and carers felt there was an over-reliance on them for intervention and advocacy when their loved ones were using health and care services.

I am my husband’s carer and spent every day for at least 10 hours a day in the hospital. If I had not taken my husband to the bathroom and washed and cleaned him, he would have been in an awful state.

Over time, the pressure of caring for someone with dementia, on top of other commitments, can take its toll on family and carers. Health staff describe situations where carers were reaching a tipping point.

His mum is the only carer, and she is becoming increasingly overwhelmed with caring for both her son and husband with young age dementia. His mum also has her own mental health issues.

Family and carers told us that communication with staff and management could be poor, with calls and requests for meetings being ignored, or concerns not being addressed.

However, good dementia care ensures that carers are listened to and included in all appropriate care discussions.

For example, when a person with dementia goes into a care home, this can be at crisis point for families, so services that appreciate this and provide good dementia-aware care are vital.

The team have allowed us to be his family again. His wife is able to continue being his wife and his daughters able to be his daughters again, rather than his carers. So, we are able to appreciate and concentrate on the special moments we have left together.

We also note adult social care services that provide space for carers to step back from their caring responsibilities and socialise with people with shared experiences.

We noticed there were quite a few family members that were really struggling… We set up a small group in a quiet lounge where we would give them afternoon tea once a month. Often the chat was nothing about dementia or their loved ones… went from introductions to actually, what was good on TV last night.

Inequalities

Key stakeholders told us inequality was a root cause of issues facing people living with dementia. Persistent misunderstandings and stigma associated with dementia can also lead to inequalities in how care is delivered and commissioned. Inequalities are present from prevention through to people’s experience of living with the condition.

This is reflected in the Adult inpatient survey 2023, which found that people with dementia reported poorer experiences for almost all questions, including:

• being more likely to feel they were not treated with sufficient respect and dignity
• feeling less involved in their care
• being less likely to feel hospital staff took their individual needs into account.

When a person has dementia and also has needs related to another protected characteristic under the Equality Act 2010, such as other disabilities, ethnicity and sexual orientation, health and care providers and staff should be aware of a number of considerations that ‘intersect’ or have a combined impact with each other. For example, previous negative experiences of stereotyping or discrimination may be re-lived, or people may be confused about their gender identity.

However, we have seen limited consideration for the combined impact of dementia and other protected characteristics in the analysis for this report. Exceptions to this included:

• respecting the culture and preferences of a person with dementia to support them to eat well
• speaking to someone in their preferred or first language
• continuing to respect people’s religious beliefs, despite dementia impairing the ability of a person to always remember or practice their faith
• using toolkits and training to support people with dementia from ethnic minority groups and LGBT+ communities.