Health and social care support for people with dementia

What is the impact of issues in access to dementia diagnosis and support?

Diagnosis

In 2023, the Major conditions strategy described how a formal dementia diagnosis, as part of a dementia pathway, is important to help both people with dementia, and those supporting them, to access to care and support, empower them to manage their condition and plan for the future.

This is supported by the results of the 2024 Alzheimer's Society survey of people who are close to someone with dementia or living with symptoms, which found that almost everyone sees a benefit to receiving a dementia diagnosis: for 7 in 10 the benefit is being able to receive the right care, and for 6 in 10 it was about being able to plan for the future. Only 1% saw no benefit.

However, as highlighted by the strategy, “not enough people have access to an accurate and timely dementia diagnosis – with significant variation across the country.”

According to NHS England data, at the end of February 2025, 65.4% of patients aged 65 or over who are estimated to have dementia had a recorded diagnosis of dementia. This rate has gradually increased from 62.6% since October 2022. The previous dementia diagnosis rate target of 66.7% has been removed from the NHS Operational Planning Guidance for 2025/26. 

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

Respondents to the 2023 NHS Community mental health survey said that they were having to wait too long between a referral and an assessment or diagnosis for dementia. This was supported by the 2023/2024 National Audit of Dementia, which found people are waiting longer for their diagnosis. In 2023, the average waiting time from referral to diagnosis increased to 151 days from 124 days in 2021. Factors affecting waiting times include increased numbers of people being admitted to relevant services, while average staffing levels have not increased in accordance.

The audit also flagged variations in diagnosis rates in memory assessment services. The proportion of patients in each memory assessment service who received a diagnosis of any type of dementia varies from 36% up to 100%, but for Alzheimer’s disease (the most common subtype of dementia), this ranged from 6% to 90%. 

Post-diagnosis support

Dementia care and support

The National Institute for Health and Care Excellence guidance on Dementia: assessment, management and support for people living with dementia and their carers covers person-centred care and support, tailored to the specific needs of each person with dementia. 

It recommends that cognitive stimulation therapy (usually group activities and discussions aimed at improving cognitive and social functioning) should be offered to people living with mild to moderate dementia. However, the National Audit of Dementia found that, while 76% of memory assessment services could offer this therapy, only 31% of patients with a dementia diagnosis were actually offered it.

As with diagnosis, respondents to the 2023 NHS Community mental health survey told us that they were having difficulties accessing ongoing dementia care, support and advice, particularly in a crisis. 

I have vascular dementia, which is slowly getting worse. I am 85 years old, live alone and need help.

Some people described having to seek out alternative care because of the lack of follow-up or ongoing care.

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.

By contrast, some survey respondents were positive about the support they had received, having not faced delays to their diagnosis or follow-up.

It was very efficient from the first meeting. Testing was quick and the results were followed up with discussions and a follow-on plan. Following the initial discussions, I had an interview with a doctor who carried out further tests, discussed the results which were very encouraging and arranged a follow-up meeting in 6 months’ time.

People also described facing a lack of help and support from their GP in comments from our Give feedback on care service. People described trying to get appointments, advice, a referral to a memory clinic and medication reviews and were finding this challenging. One person described feeling ‘abandoned’ by their GP practice and another spoke of a “lack of support during my mother’s dementia progression”. 

I have been offered no lifestyle advice or treatment except the medication prescribed by the hospital, which is reviewed once a year. I feel like if there was things that I could do to improve my health someone should have told me.

At a system level, we have identified gaps in dementia care provision in most of the initial assessments from our local authority assurance work. 

We found that specific support and care services available to people with dementia varied across the authorities and there was no evidence of a consistent pathway of care and support. This lack of a dementia pathway was also highlighted as a gap in our conversations with stakeholders.

A lack of appropriate care placements for people with dementia had led some councils to place people out of area, which could make visits from family and carers more challenging. One area linked this to the high cost of care for people with dementia and increasing demand.

Extract from a local authority assessment report:

…there was a lack of services for people requiring complex dementia care. The demand for these types of services was increasing as people aged. This issue was compounded because the cost of care was high. Decisions about care placements were based on value for money, quality of care and people’s choice. However, staff told us often cost was a driver and, where people had complex needs, this often resulted in out of area placements.

Other health and care services

Some respondents to our Give feedback on care service said they struggled to get appointments with their GP surgery. People with dementia may not be capable of directly contacting their GP and rely on family members to make appointments and interact with the GP on their behalf. People said that navigating the various systems when trying to get an appointment for a family member was not only difficult but also took up a lot of their time or didn’t fit with their other commitments.

I have to work full-time and am caring for my mum with dementia. It is so frustrating that you cannot complete an e-consult until after 9am and before 5pm. They should not be allowed to set time constraints on when patients can fill these in. If they don't want a huge amount of e-consults they should see patients or answer the phone.

Adult social care services also told us through their provider information returns about the challenges they faced accessing services for people with dementia, including GPs, mental health services and dentistry, with assessments generally subject to long delays. They also talked about the impact this can have on people using their service.

Adult social care provider information return:

Trying to find a dental service is a barrier to good care. We struggle to find a dentist that will see a resident with dementia and being able to find a dentist that is available to come to the home is very difficult. We have recently taken a resident to the emergency dental service. This was a distressing experience for the resident and the dentist was unable to carry out any examinations.

Our 2019 report, Smiling matters, describes the challenges people living in care homes face in accessing dental care. It highlighted how oral healthcare support can be an issue for people with dementia more generally; for example, care homes that cared for people with dementia were less likely to have an oral health section within care plans.

How are providers and systems tackling issues in access to health and care support?

As noted in the King’s Fund report, The role of integrated care systems in improving dementia diagnosis, getting a good dementia diagnosis requires many different parts of the health and social care system to work together effectively. The report identifies key enablers of improvement, including strengthening relationships between primary care, memory clinics and other services; public awareness-raising activities; and the introduction of new extended roles for GPs (for example, to improve diagnosis in care homes).

Comments in Give feedback on care illustrated the important role primary care can have in supporting people through their diagnosis of dementia.

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.

This is supported by CQC’s professional advisors who told us they had seen good examples of GPs offering proactive support to connect people with dementia to activities, groups, and services in their community to meet the practical, social and emotional needs. They also described seeing surgeries that are more flexible in their appointment and home visit arrangements for carers and patients with dementia.

Adult social care providers used their provider information return to share how they consult and work closely with a variety of dementia support services and partners to share knowledge and provide specialist care to people with dementia. For example, they consult NHS healthcare services to assist care home staff, including mental health teams, memory clinics, community psychiatric nurses, district nurses, dentists, and opticians.

Adult social care provider information return:

[We have] an optician who visits for regular eye tests, or more often if required. They provide a dementia-friendly service and offer insight into different visual impairments to help us to gain further understanding of how this impacts on a person daily.

Providers also reported making referrals to specialist dementia services, including dementia outreach, dementia care home teams, dementia crisis teams, dementia specialist nurses, and dementia hubs. Several care homes also reported engaging with dementia care and research charities, including Alzheimer’s Society for specialist support and guidance. 

Adult social care provider information return:

He requires support from several multidisciplinaries, including the Dementia Team, Parkinson’s Nurses, Macmillan Nurses, the Diabetic Nurse and the GP. Having an established relationship with the above allows us to access specialist care and advice as required.

Being able to directly refer to these services was highlighted as being vital to address care needs efficiently, as the condition can change quickly. 

Adult social care provider information return:

We work with the memory clinic and refer patients if there has been a cognitive decline, or their dementia is affecting their mood, behaviour or physical health. We recognise that dementia is a progressive condition, therefore it is important to ensure patients are on the correct medication and seen in a timely manner to adjust their treatments and care plans.

Adult social care providers also told us how partnership working with other local services helped to ensure that people with dementia are supported to be safe. 

Adult social care provider information return:

We have a client who has advanced dementia. She was often found wandering outside her home unsure as to where she was. We worked closely with the police and her social worker to put measures in place to keep her safe, such as fitting door alarms which alert the care line when she leaves her home.

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. We see through our discussions with system partners where local initiatives such as the ones below, often with the voluntary and community sector, can bring benefits to people, as well as efficiencies.