Dementia

There has been a national focus on increasing of the proportion of people (estimated to be) living with dementia receiving a dementia diagnosis in recent years. National research carried out by Alzheimer’s Society has identified a range of system barriers to accessing a timely dementia diagnosis, including workforce capacity, health inequalities, a lack of peri-diagnostic support and funding arrangements (Alzheimer’s Society, 2022).

Dementia diagnosis is only one aspect of the improving post-diagnostic support for people living with dementia and their families (National Collaborating Centre for Mental Health, 2018). The full dementia care pathway includes people meeting with a named coordinator of care, agreeing to a plan of NICE-recommended care and receiving regular reviews of their care plan. Locally, there is no specific pathway in place for people with alcohol-related dementia/brain damage.

Figure 16: The dementia care pathway. Image source: National Collaborating Centre for Mental Health

Current and future prevalence

One way of looking at the needs of people with dementia is using the primary care dementia register. Although this is a useful source of information, it is important to note that this data source is incomplete and does not capture everyone in our local area who has dementia.

In January 2024, there were 4,919 older people in Cambridgeshire, and 1,363 older people in Peterborough, on the dementia register. This means that 3.8% of older adults in Cambridgeshire and Peterborough had a dementia diagnosis. Within this group, there is a wide range of symptoms and care needs. 1.2% of older adults were diagnosed as having mild cognitive impairment. In January 2024, almost three quarters (72%) of older adults with a dementia diagnosis in Cambridgeshire and Peterborough were recorded as having co-morbidities; and 15% were receiving palliative care.

Figure 17: Recorded dementia and mild cognitive impairment prevalence, older adults, Cambridgeshire and Peterborough ICB, April 2023 – January 2024. Data source: Primary Care Dementia Data, January 2024 – NHS Digital

In Cambridgeshire and Peterborough, the number of people predicted to have developed dementia shows a substantial increase in people aged 80+ from 2023 to 2040. The overall older adult population predicted to be living with dementia will increase of 41% in Cambridgeshire and 47% in Peterborough between 2025 and 2040.

Figure 18: Older adults predicted to have dementia, Cambridgeshire and Peterborough, 2023 – 2040. Image source: Projecting Older People Population Information System (poppi.org.uk)

Referrals to memory clinics

In Cambridgeshire and Peterborough, there are four memory clinics, which are known as memory assessment services. These aim to provide high quality assessment of memory problems, to ensure that accurate diagnoses are provided in a timely manner and at an earlier stage of illness, allowing patients to make decisions about their current and future care plans (CPFT, 2023). Cambridge University Hospital (CUH) also has a memory clinic, however the numbers from this service are not included in this report.

Between April 2023 and February 2024 there were 449 patients who received memory assessment services in Cambridgeshire and Peterborough. 13.5% of primary care assessments for dementia resulted in referrals to memory services, a statistically similar proportion to the national average (13.2%) but significantly lower than the East of England rate (18.3%).

Figure 19: % of primary care assessments for dementia resulting in a memory service referral, all ages, England, East of England and Cambridgeshire and Peterborough ICB, cumulative from April 2023 – February 2024. Image source: OHID

Diagnosis rate

In January 2024, an estimated 10,700 older people in Cambridgeshire and Peterborough had dementia, out of which 6,424 (59%) were on the dementia register.
Similar to other areas, this is significantly below the national target that that two-thirds (67%) of people who are estimated to live with dementia have a dementia diagnosis.

Figure 20: Estimated dementia diagnosis rate per 100 older people estimated to have dementia, England, East of England and Cambridgeshire and Peterborough ICB, April 2023 – January 2024. Image source: OHID. Note: Estimated dementia diagnosis rates (EDDR) are calculated as the number of people with a formal diagnosis of dementia recorded in their primary care notes; divided by the number of older people in the area who are estimated to have dementia (using CFAS II prevalence rates).

The COVID-19 pandemic impacted dementia diagnosis rates nationally and locally. Before March 2020, the diagnosis rate within Cambridgeshire and Peterborough ICB was statistically similar to the national target rate (67%). The diagnosis rate then fell significantly below the target rate, and whilst it is now increasing at a rapid rate, it had not returned to pre-pandemic levels by the start of 2024.

Figure 21: Dementia diagnosis rate, Cambridgeshire and Peterborough ICB, 2017 – 2024. Image source: Dementia Diagnosis Rate Dashboard – Mental Health, Learning Disability and Autism Resource Hub – FutureNHS Collaboration Platform

The length of time taken to reach a diagnosis varies by individuals’ needs and hence clinicians may need over 6 weeks to make a diagnosis (National Collaborating Centre for Mental Health, 2018). Service capacity issues can also impact waiting times. In mid-March 2024, there were 1,525 people waiting to access a memory assessment service. There has been a substantial decline in the waiting list over the past 12 months.

Figure 22: Total waiting for Memory Assessment Service per week, 17^th March 2023 – 17^th March 2024. Data source: CPFT

People’s postcode or ethnicity should not impact their ability to access a timely and accurate dementia diagnosis. However, there are inequalities in dementia risk factors and access to care. For example, there are higher rates of undiagnosed dementia in more deprived areas (All-Party Parliamentary Group on Dementia, 2023).

Diagnosis rate by ethnicity

National studies suggest that people from Black and South Asian ethnic groups have a younger age of dementia diagnosis (Mukadam et al., 2023). However, some research also suggests that people from ethnic minority backgrounds access assessment services at a later stage than people from White British people, when their dementia has progressed further (Arblaster, 2021).

Around half of local diagnoses do not have ethnicity recorded, so it not currently possible to determine if there are inequalities in dementia diagnosis rates by ethnicity in Cambridgeshire and Peterborough.

Diagnosis rate by local authority

In January 2024, there were 6,282 older adults living with diagnosed dementia in Cambridgeshire and Peterborough. Based on the numbers we would expect to see in our local population, this means that there are around 4,400 older adults who have dementia but are currently undiagnosed. In January 2024, the diagnosis rate was highest in Peterborough and lowest in South Cambridgeshire.

Figure 23: Proportion of older adults with dementia who have received a dementia diagnosis, Cambridgeshire and Peterborough, January 2024. Data source: Primary Care Dementia Data, January 2023

It is also important to note that on average Cambridgeshire is less deprived than other areas of the UK, hence these estimates may overestimate the rate of dementia.

Service use by people with dementia

Understanding where people with dementia present in the mental health system is useful for workforce and training planning. For example:

In Cambridgeshire and Peterborough, around 3 in 10 (29.4%) patients registered with the Older People Mental Health Service between January 2021 – December 2023 had a primary diagnosis of dementia.
Research by Alzheimer’s Society has estimated that 25% of hospital beds in England are occupied by people with dementia (NHS England, 2017).

Emergency hospital admissions

In 2022/23, there were 121 emergency hospital admissions for older people with any dementia in Cambridgeshire and Peterborough ICB.

The rate of admissions in Cambridgeshire and Peterborough has been statistically similar to the national rates since 2020/21. In recent years, there has been a declining trend in the rate of admissions in Cambridgeshire and Peterborough, which reflects trends in the East of England and nationally.

Table 9: Emergency hospital admissions for older adults with dementia and Alzheimer’s disease, Cambridgeshire and Peterborough ICB, 2019/20 – 2022/23. Data source: Healthcare Evaluation Data (HED)

Note: DASR is the directly age-standardised rate of admissions, and the upper and lower limit show the 95% confidence intervals

Service use compared to general population

A 2017 report by the Strategy Unit compared healthcare utilisation by people who used mental health services in Cambridgeshire and Peterborough to utilisation by the general population. This analysis found that people who had a ‘cognitive impairment including dementia’ (The Strategy Unit, 2017):

Made up 1% of the total population but utilised 3% of Accident and Emergency attendances and 9% of emergency admissions.
After adjusting for the age and sex of this population, people with ‘cognitive impairment including dementia’ were 2.7 times more likely to attend Accident and Emergency and 5.4 times more likely to have an emergency admission.
Had a substantially higher average cost per Accident and Emergency attendance and admission, compared to people who did not have a cognitive impairment or mental health need.

Additional resources

References

Full list of references is included at the end of this chapter.