Dementia

This topic area covers statistics and information relating to dementia in Hull including local strategic need and service provision.

This page contains information from the Office for Health Improvement & Disparities’ Fingertips. Information is taken ‘live’ from the site so uses the latest available data from Fingertips and displays it on this page. As a result, some comments on this page may relate to an earlier period of time until this page is next updated (see review dates at the end of this page).

In July 2022, Clinical Commissioning Groups (CCGs) ceased to exist and were replaced by the Integrated Care System. The sub Integrated Care Board areas which include Hull are within the Humber and North Yorkshire Integrated Care Board. In Fingertips, the sub-ICB area referenced by 03F relates to Hull (see Integrated Care Board for the codes relating to the other local sub-ICB areas). For some indicators on Fingertips, the data is still being presented at CCG level (and for Humber, Coast and Vale) and has not yet been updated for sub-ICBs. However, for Hull the geographical area for the CCG and the sub-ICB area (03F) are the same so the information can still be examined and compared to understand the health needs within Hull.

Headlines

• Dementia is a syndrome (a group of related symptoms) associated with an ongoing decline of the brain resulting in global impairment. The changes associated with dementia eventually lead to dramatic decline in an individual’s level of functioning. The prevalence increases with age, and the projected numbers are anticipated to increase due to the ageing population.
• Nationally, Alzheimer’s disease has the sixth highest disability adjusted life years (DALYs) and thus has a substantial impact on the quality of people’s lives as well as substantially affecting the lives of carers.
• In 2019/20, there were 2,293 patients registered with Hull GPs who had been diagnosed with dementia representing 0.8%, but this fell to 1,990 (0.7%) for 2020/21 presumably due to the high mortality rate from COVID-19. The prevalence further reduced in 2021/22. There were 1,915 patients registered with Hull GPs who had been diagnosed with dementia in 2021/22 representing 0.62% of all registered patients which was lower than England (0.72%).
• NHS England have assigned a national target and ambitions for the dementia diagnosis rate. This has resulted in an increase in the percentage diagnosed out of the estimated number with dementia (estimated by applying age-specific prevalence estimates to the Hull’s population structure). However, with the high mortality rate from COVID-19 in 2020 and 2021 among people with diagnosed dementia, the model has not been adjusted and the percentage diagnosed has fallen relatively sharply from 78.4% in 2020 to 65.1% in 2022. It is likely that the true percentage remains around 78% but that the model is no longer adequately estimating the number of people with dementia, although the increased mortality rate alone does not account for the reduction in the diagnosis rate. It is possible that fewer new cases of dementia were diagnosed during 2020 and 2021 perhaps due to people being less willing or able to attend medical appointments during the COVID-19 pandemic.
• Nationally, three-quarters of people with dementia also have other diseases or medical conditions. Diagnosing other conditions becomes more difficult as the severity of the dementia increases, which can result in other health needs remaining unmet. Persistent stigma against the dementia label can also be a contributing factor for this.
• Mortality rates from dementia are high with around one in ten deaths having dementia as the primary cause of death. The mortality rate from COVID-19 was high among people with dementia. From local analyses, one-fifth of people who died of COVID-19 in Hull during 2020 and 2021 had dementia listed as a secondary cause of death on their death certificate. Given the association between dementia prevalence and age, and between COVID-19 mortality and age, then it is perhaps not surprising that mortality rates were relatively high. It is estimated that an additional 40 people with dementia died during 2020 and 2021. It is possible that people with dementia were more adversely affected compared to similarly-aged people because it was more difficult for them to social distance.
• Due to the ageing population, it is projected that the numbers of people with dementia will increase substantially in Hull over the next 15-20 years.

The Population Affected – Why Is It Important?

Dementia is a common condition and Alzheimer’s Society in 2019 estimated that about 850,000 people were affected in the UK. In 2021/22, from Quality and Outcomes Framework data, 443,902 patients registered with GPs in England had been diagnosed with dementia representing 0.72% of the entire population. There will be additional people with dementia but will not have been diagnosed with dementia. The risk of developing dementia increases with age, and usually occurs in people aged 65+ years. Dementia is a syndrome (a group of related symptoms) associated with an ongoing global decline of the brain and its abilities. This includes problems with memory loss, thinking speed, mental agility, language, understanding and judgement. People with dementia can become apathetic or uninterested in their usual activities, and have problems controlling their emotions. They may also find social situations challenging, lose interest in socialising, and aspects of their personality may change. They may lose empathy (understanding and compassion), may have hallucinations (see or hear things that other people do not), or may make false claims or statements. As dementia affects a person’s mental abilities, they may find planning and organising difficult. Maintaining their independence may also become a problem. A person with dementia will therefore usually need help from friends or relatives, including help with decision making. Most types of dementia can’t be cured, but if it is detected early there are ways to slow it down and maintain mental function.

With the ageing population, the numbers of people with dementia will increase. It is predicted that the numbers of people aged 65+ years with dementia in England will increase from an estimated 679,000 in 2015 to 1,073,500 by 2030, an increase of 58%.

Nationally, Alzheimer’s disease has the sixth highest disability adjusted life years and thus has a substantial impact on the quality of people’s lives as well as substantially affecting the lives of carers.

The diagnosed prevalence of dementia can be examined from data collected as part of the Quality and Outcomes Framework within primary care. Quality of care indicators are also included, and it means that high percentage of the patients diagnosed with dementia have an annual review which gives medical staff the opportunity to provide information, assess their patients and help improve their patients health and wellbeing. Local analysis of the QOF data has been completed with prevalence calculated for each GP practice and Primary Care Network group.

The Hull Picture

Prevalence

The Office for Health Improvement & Disparities’ Fingertips gives the percentage of patients registered with Hull GPs who are diagnosed with dementia. In 2019/20, there were 2,293 patients registered with Hull GPs who had been diagnosed with dementia representing 0.8% of all the registered population, but this fell to 1,990 patients (0.7%) for 2020/21 and fell further to 1,915 (0.6%) for 2021/22. A high number of deaths from COVID-19 mentioned dementia on the death certificates and this is likely to be the main – but likely not sole – reason for the reduced number of patients with dementia registered with Hull GPs particularly for 2020/21. From a local analysis of mortality rates for 2020 and 2021 (within Causes of Death), it is estimated that around 40 more people with dementia died during 2020 and 2021 than a ‘normal’ or ‘average’ year.

For 2021/22, the prevalence of diagnosed dementia among patients registered with Hull GPs was the lowest across the Humber and North Yorkshire Integrated Care Board at 0.6%, and slightly below England (0.7%).

The prevalence of dementia among patients registered with Hull GPs has increased quite sharply in Hull as it has in England. An increase would be expected over time given the ageing population, but it is likely that an increase is attributed to NHS England assigning a national target and ambitions for the dementia diagnosis rate.

The prevalence rate decreased in 2020/21 likely associated – at least in part – with an increased mortality rate from COVID-19 among patients with dementia. However, in Hull, a decrease also occurred in 2021/22 which was in contrast to England and the Humber and North Yorkshire Integrated Care Board.

From a local analysis using the diagnosed prevalence in 2021/22, there was no association between the prevalence of dementia and either the average age of registered patients or the average deprivation score of registered patients (based on the Index of Multiple Deprivation 2019).

Fingertips also presents the data for single years for those aged 65+ years although the information is given for 2020 only and relates to Hull Clinical Commissioning Group. The estimated prevalence of dementia in Hull for 2020 was 4.2% which was slightly higher than England (4.0%).

In 2020, the prevalence of dementia decreased in Hull as it did in England, although to a lesser extent in England (14% versus 9%). As the 2020 file was taken from the December 2020 data extract, it is likely that the mortality rate from COVID-19 was an influential factor in the reduction in prevalence.

Age gender specific prevalence estimates for dementia have been estimated given the characteristics of the population in the Cognitive Function and Ageing Study II among people aged 65+ years. These estimates have been applied to the age gender structure of the populations of each geographical area authority to estimate the number of people with diagnosed and undiagnosed dementia.

This estimated number of people with dementia has been then compared with the number diagnosed on the GP disease registers. For 2022, it was estimated that 65.1% of people with diagnosed and undiagnosed dementia among patients registered with Hull GPs.

In 2020, it was estimated that 2,207 out of 2,815 people (78.4%) with dementia had been diagnosed, but in 2021, it was estimated that 1,920 out of 2,783 (69.0%) were diagnosed and in 2022 that 2,838 people out of 2,823 (65.1%) were diagnosed.

The estimated number of people with dementia (diagnosed and undiagnosed) using the modelled estimate remained relatively unchanged for 2020 (2,815 people), 2021 (2,783 people) and 2022 (2,823 people), yet we know that the mortality rate was much higher among patients with dementia in 2020 (and perhaps 2021) due to COVID-19. Between 2019/20 and 2021/22, there was a reduction of 16% in the number of people with diagnosed dementia on the Quality and Outcomes Framework GP disease registers (2,293 to 1,915), yet the model estimates remained relatively unchanged.

The percentage diagnosed can increase a great deal in a short period of time if there are high levels of patients undiagnosed and a case-finding exercise is undertaken, but the same argument does not apply for a decrease in the percentage. There is no plausible reason why the percentage diagnosed would fall by a large amount unless there is a substantial change to the nursing or care homes within the area or a change to geographical boundaries (e.g. a care home specialising in dementia patients moves to another local authority). Yet the percentage has fallen from 78% to 65% in two years.

Thus, it is likely that the percentage diagnosed remains around 78%, but that the model has not taken into account the high COVID-19 mortality rate among patients with dementia and is producing an artificially high estimate of the number of people with diagnosed and undiagnosed dementia. However, it is estimated that around 40 additional people with dementia died during 2020 and 2021, so this does not account fully for the sharp decrease in the percentage diagnosed. It is possible that there were fewer new cases of dementia diagnosed during 2020 and 2021 due to the COVID-19 pandemic, for instance, people – particularly frail and vulnerable people – with symptoms may have been less likely to visit their GP during this time and thus less likely to be diagnosed with dementia.

Hospital Admissions

The directly standardised hospital admission rate for emergency admissions for dementia for people aged 65+ years is almost 25% higher than England. The rate is given as the number of emergency admissions per 100,000 population (in the European Standard Population). There were 4,351 emergency admissions relating to dementia among patients registered with Hull GPs who were aged 65+ years in 2019/20.

There were over 4,800 emergency admissions per 100,000 population after adjusting for Hull’s age population in 2016/17 and 2017/18, but this fell to 4,242 admissions per 100,000 population in 2018/19, and then increased to 4,351 admissions per 100,000 population in 2019/20. Over the same four years, there were around 3,400 admissions per 100,000 population for England.

Deaths

The directly standardised mortality rate for dementia for people aged 65+ years is around 40% higher than England. The rate is given as the number of emergency deaths per 100,000 population (in the European Standard Population). There were 435 deaths from dementia among people aged 65+ years in Hull in 2019.

The mortality rate for dementia for people aged 65+ years has increased in Hull between 2016 and 2019.

In 2019, more people with dementia died in hospital rather than their usual residence in Hull.

Using the local mortality data file, there were 12,754 deaths in total over the five years 2015 to 2019, with 1,257 having the primary cause of death as dementia on the death certificate representing 9.9% of all deaths. An additional 667 (5.2%) deaths had dementia listed as a secondary cause of death on the death certificate.

Over this five year period, there was an average of 251 deaths per year where dementia was the primary cause of death with relatively small levels of year-on-year variability ranging from 243 to 262 per year over the five year period. On average, there were 133 deaths per year on average where dementia was listed as a secondary cause of death, and again variability as relatively low with the numbers ranging from 127 to 140 per year).

COVID-19 Deaths Among People With Dementia

During the two year period 2018-19, there were 495 deaths that had an underlying cause of dementia representing 9.8% of all deaths. However, during 2020-21, there were fewer deaths with an underlying cause of dementia with 429 deaths in total representing 7.7% of all deaths. Out of the 713 deaths from COVID-19 during 2020-21, 149 (21%) had dementia listed on the death certificate as a secondary / contributing cause of death, and a further 228 people died (but not of COVID-19) and had dementia listed as a secondary cause of death (4.7% of all deaths). Over the two year period 2018-19, 5.3% of all deaths had dementia as a secondary cause of death (267 deaths in total).

Thus, during the two year period 2018-19, there were 762 deaths (15.1% of all deaths) where dementia was the underlying cause of death or a secondary cause of death compared to 806 deaths (14.5% of all deaths) in 2020-21.

Thus it is estimated that around 40 more deaths among people with dementia occurred during 2020 and 2021 compared to 2018 and 2019.

Projected Numbers with Dementia

The Projecting Adult Needs and Service Information (PANSI) and the Projecting Older People Population Information Service (POPPI) provide current estimates and future projections at local authority level of the number of people with different health needs for those aged 16-64 and 65+ years respectively.

They use estimates for the estimated prevalence from different surveys and research which have generally been derived at a national level (generally different prevalence estimates for different age groups for men and women separately). They then apply these prevalence figures to Hull’s population. For instance, if the prevalence among males in England in a specific age group is 5% and there are an estimated 500 men living in Hull in that age groups, they would estimate there were 25 men in that age group living in Hull with that condition. For many conditions, there is an increased prevalence in populations with higher levels of deprivation, and in most cases, deprivation is not taken into consideration. Thus in many cases, these estimates for Hull are likely to underestimate the numbers in Hull due to the high levels of deprivation in Hull.

Further definitions are available from www.pansi.org.uk and www.poppi.org.uk.

They estimate that over 60 people in Hull aged 18-64 years have early-onset dementia.

Gender	Age	2020	2025	2030	2035	2040
Males	30-39	2	2	1	1	1
Males	40-49	3	3	3	3	3
Males	50-59	20	18	17	16	17
Males	60-64	14	15	14	13	12
Males	Total 18-64	38	38	36	33	33
Females	30-39	2	2	2	2	2
Females	40-49	3	3	4	4	4
Females	50-59	12	11	10	10	11
Females	60-64	8	9	8	8	7
Females	Total 18-64	26	26	24	23	22

They estimate that there are almost 2,600 residents of Hull aged 65+ years who have dementia. Note that this is the number of Hull residents and includes people with undiagnosed dementia. It will also differ from the figures mentioned above as these relate to patients registered with Hull GPs (there are around 300,000 patients registered with Hull GPs but the Office for National Statistics estimates that there are around 260,000 residents of Hull). They estimate that the numbers with dementia aged 65+ years will increase to around 3,500 people by 2040.

Age	2020	2025	2030	2035	2040
65-69	193	210	233	220	202
70-74	332	314	341	387	366
75-79	420	551	521	582	653
80-84	598	587	785	751	852
85-89	565	595	595	807	772
90+	472	436	460	519	672
Total 65+	2,581	2,693	2,935	3,265	3,516

Co-Morbidity

Currently it is not possible to determine the exact numbers of people in Hull with dementia and other conditions. However national estimates from the Office for Health Improvement & Disparities (formerly Public Health England) identified the following:

• A total of 77% of patients with dementia had at least one of the specific health conditions considered within their study. This compared to 68% in the ‘all patient’ group for the same list of health conditions (excluding dementia).
• For patients with dementia, 44% had a diagnosis of hypertension, between 17% and 20% had a diagnosis of diabetes, stroke or transient ischaemic attack (mini stroke), coronary heart disease or depression, while between 9% and 11% had a diagnosis of Parkinsonism, chronic obstructive pulmonary disease or asthma.
• The prevalence rate for eight of the 10 specific health conditions is higher for patients with dementia when compared to the all patient group. The prevalence rates for hypertension and asthma are lower than the all patient group.
• Patients with dementia are more likely to have multiple health conditions. A total of 22% with three or more comorbidities and 8% with four or more comorbidities, compared to 11% and 3% respectively in the all patient group.
• The proportion of patients aged 85 years and older with two or more other health conditions recorded in the primary care notes is lower than the proportion in age groups under 85 years. Diagnosing comorbidities in patients with dementia can be more difficult to achieve as the severity of dementia increases. However, it can lead to comorbid conditions being under-diagnosed and thus health needs of patients remaining unmet.

Strategic Need and Service Provision

Many of the disabling effects of dementia can be combated using the social model of disability, and Hull is seeking to become a Dementia Friendly City by providing advice and training to people. Universal services will be adapted to be dementia-friendly to enable people with dementia to independently access banks, shops, and other community hubs. This will enable them to feel more empowered and confident which in turn will increase wellbeing whilst reducing their reliance on carers and on paid support.  They can also choose to participate and contribute to meaningful activities which will improve their self-esteem.

It is also important that a person with dementia has other medical conditions and diseases diagnosed and treated appropriately to lessen the burden on the individuals, carers and overall health care system.

There is a need to work with partners to ensure that there is a shared understanding of people’s needs and that services are integrated, high quality and accessible in ways that offer people appropriate choices such as care organised around care hubs. There is a need to work together to promote self-care, reablement or mutual support in community settings so this is viewed as the norm and reduce reliance on residential or home care. The most vulnerable citizens should be identified so their specific needs are addressed in the way they wish. The Care Act 2014 focuses around meeting needs and promoting wellbeing rather than simply the provision of services and on preventing, reducing or delaying the development of need, so individual needs should be assessed holistically within the context of their support network and each individual’s circumstances considered to provide the most appropriate care, help and support for that individual. These individual needs will need to consider the caring arrangements, and how carers need to be supported in their role, and that their health needs do not suffer.

People (supported by their carers where necessary) should be encouraged to attend their NHS Health Check if they are eligible, and people already diagnosed with dementia should attend their annual reviews (generally within primary care) so that they get the best on-going treatment for their condition.

Resources

NHS Digital. Quality and Outcomes Framework. https://qof.digital.nhs.uk/

The Office for Health Improvement & Disparities’ Fingertips. https://fingertips.phe.org.uk/

Projecting Older People Population Information Service – POPPI. www.poppi.org.uk

Projecting Older People Population Information Service – PANSI. www.pansi.org.uk

NHS. Dementia guide.  www.nhs.uk. 2013, NHS: London.

Newton, J.N., et al., Changes in health in England, with analysis by English regions and areas of deprivation, 1990-2013: a systematic analysis for the Global Burden of Disease Study 2013. The Lancet, 2015. 386(10010): p. 2257-2274.

Updates

This page was last updated / checked on 26 May 2023.

This page is due to be updated / checked in September 2023.