When we get ill: dementia

Page last updated: September 2021

Five key points

  1. In 2020 there were around 13,000 people with dementia living in Suffolk. By 2040 it is likely to be around 21,000. Nearly half the people living with dementia in Suffolk are undiagnosed.(What is the local picture)
  2. Dementia is more common in women and in people of Black and South Asian ethnicity. (Inequalities)
  3. Many people with dementia have complex needs because they also have other health conditions.  (Why is dementia important?)
  4. Dementia and Alzheimer’s disease is the leading cause of death in England and in Suffolk. (Mortality)
  5. Some dementia is preventable. Risk factors include hypertension, hearing impairment, smoking, obesity, depression, physical inactivity, diabetes, infrequent social contact, excessive alcohol consumption, traumatic brain injury and air pollution. (Preventing dementia)

What is dementia?

‘Dementia’ describes a set of symptoms that include loss of concentration and memory problems, mood and behaviour changes, and problems with communicating and reasoning. These symptoms can occur when the brain is damaged by certain diseases (such as Alzheimer’s disease), by a series of small strokes, or by other neurological conditions such as Parkinson’s Disease.

Around 60% people with dementia have Alzheimer’s disease, which is the most common type of dementia, around 20% have vascular dementia, which results from problems with the blood supply to the brain, and many people have a mixture of the two (NHS About dementia; WHO Dementia).

Dementia is a progressive condition, which means that the symptoms become more severe over time.

Why is dementia important in Suffolk?  

Age is the biggest risk factor for dementia. The number of older people in Suffolk will continue to increase over the coming decades. In 2018, 23.2% (176,000) of the population of Suffolk was aged 65 or over; this will rise to 30.7% (76,187) by 2041. The number of people aged 85 or over will almost double in the same time period (to 47,760). These longer lives are a success story, but as people live longer, many more people will develop dementia and will need support.

Dementia affects the quality of life of those living with the condition and their family and friends. It is a complex condition that can cause physical, psychological, emotional, and financial stress to the person living with dementia, their family carers, and the wider community.

Although a diagnosis of dementia can be devastating, it is important to get an early diagnosis. An early diagnosis ensures people get the information and support they need and allows individuals and families to plan and make decisions about their future care, legal and financial matters. 

Many people with dementia have complex needs because they also have other health conditions. 77% of patients with dementia have at least one of the following health conditions (compared to only 68% of people without dementia): hypertension, CHD, diabetes, depression, stroke or TIA, other neurological conditions (Parkinsonism, epilepsy), severe mental illness, asthma, or chronic obstructive pulmonary disease (COPD). Hypertension is the most common comorbidity of patients with dementia. Rates for the following conditions were more than double in patients with dementia than patients without dementia: stroke and Transient Ischaemic Attack (TIA) (18% versus 8%), Parkinsonism (11% versus 5%), epilepsy (5% versus 1%), Severe Mental Illness (4% versus 1%) and depression (17% versus 8%). 

Dementia and Alzheimer’s disease is the leading cause of deaths in England and Suffolk (12.5% of all deaths registered), although in 2019 deaths in England due to dementia and Alzheimer’s disease decreased for the first time since 2009. Dementia and Alzheimer’s disease is the cause of death in 16.1% of all female deaths, while ischaemic heart disease was the leading cause of death for males (13.1%).

Costs

The Alzheimer’s Society estimate the annual cost of dementia to society in the UK at £26.3 billion: 

  • £4.5 billion state social care,
  • £11.6 billion unpaid care,
  • £4.3 billion health care,
  • £5.8 billion individual social care, and
  • £100 million other costs.

By reducing people’s risk of dementia, local authorities and the NHS can:

What is the local picture?       

Some data is given by Clinical Commissioning Group (CCG). Suffolk is covered by three :

  • West Suffolk
  • Ipswich and East Suffolk
  • Norfolk and Waveney, which includes the whole of the county of Norfolk, as well as parts of north-east Suffolk (Lowestoft and areas south to Southwold and Halesworth).

The true number of people with dementia in Suffolk is unknown, as some people have not been formally diagnosed.

In Suffolk in 2019/2020 (Figure 1):

  • 7,836 people of all ages and registered with a GP were recorded as having dementia: 1.0% of the population, significantly higher than England (0.8%).
  • 7,200 people aged 65 and over were recorded as having dementia: 3.84%, significantly lower than England (3.97%).
  • 176 people aged under 65 were recorded as having dementia: 2.4% of people with dementia, significantly lower than England (3.05%)
  • The crude recorded prevalence of dementia in people aged under 65 in 2020 was 176 (2.85 per 100,000), similar to England as a whole (3.05 per 100,000).(Public Health England Dementia Profile)

Figure 1: People with dementia in Suffolk

 

Prevalence and incidence of dementia in Suffolk comparison with England

Source: Public Health England Fingertips Dementia Profile 

As shown in Figure 1, the rate of new diagnoses (incidence) in Suffolk in 2018/19 (11.9 per thousand, n=2,173) was similar to England (11.4).

The number of people registered with a GP recorded as having dementia (QOF prevalence) is increasing. This could reflect ongoing work to improve diagnosis of dementia in primary care.

Projected prevalence of dementia in Suffolk

This estimate is published through POPPI, and calculated by applying national prevalence estimates from the Alzheimer's Society Dementia UK Report to Office of National Statistics population projections. The number of individuals with dementia increases with age. A higher percentage of women aged 75 and over have dementia than men (Figure 2). Prevalence estimates are particularly high among those aged 90 and over.

Figure 2: Rates for men and women with dementia by age band (aged 65 and over), Suffolk, 2020

chart of dementia rates by sex and age band in Suffolk

Source: POPPI 

In 2020 there were around 13,000 people with dementia living in Suffolk. It is estimated that by 2040 there will be around 21,000 individuals living with dementia in Suffolk, most living in East Suffolk. The increase is driven by the ageing population (Figure 3).

Figure 3: Total population aged 65 and over predicted to have dementia, Suffolk by lower tier local authority, 2020 - 2040

Source: POPPI

Gap between expected and actual dementia diagnoses

Not everyone with dementia has a formal diagnosis. The difference between the number of people thought to have dementia and the number of people diagnosed with dementia is known as the “dementia gap”. The nationally set target is for at least two thirds (66.7%) of people with dementia to be diagnosed.

The estimated number of people with dementia varies by district, based on the age and gender of the population (Figure 4). The highest estimated number of individuals with dementia live in East Suffolk (4,428). It is estimated that 5,090 individuals living in Suffolk have undiagnosed dementia.

Dementia diagnosis rates are calculated by comparing the number of GP registered patients with a diagnosis of dementia and the number of people expected to have dementia. In May 2021, the dementia diagnosis rate among people aged 65 and over in Suffolk was 58.4%, significantly below the national target. Ipswich had the highest dementia diagnosis rate (64.6%), in line with the national target; diagnosis rates were significantly lower than the national target in the other four Suffolk lower tier local authorities. Mid Suffolk had the lowest rate (53.9%) (Figure 4).

Figure 4: Number of individuals aged 65 and over diagnosed with dementia, number estimated to be undiagnosed and diagnosis rate, lower tier local authorities, Suffolk, May 2021

Figure 4: Number of individuals diagnosed with dementia, number estimated to be undiagnosed and diagnosis rate, districts and boroughs, Suffolk

Source: NHS Digital. Recorded dementia diagnoses

Hospital admissions

At any one time, 1 in 4 hospital beds are occupied by people living with dementia. People with dementia often experience longer hospital stays, delays in leaving hospital and reduced independent living. Hospital admission can trigger distress, contributing to a decline in functioning and a reduced ability to return home to independent living.

The direct standardised hospital admission rates enable comparisons between areas of the number of people admitted to hospital with dementia, whether or not that's the primary reason for admission - most people with dementia are admitted to hospital for another, physical health, reason.

In the tables below, dementia has been separated into Alzheimer’s disease, vascular and unspecified dementia.

No CCG had admission rates significantly higher than the England rates. The direct standardised rates of inpatient admissions for vascular dementia were significantly lower than England for all CCGs covering Suffolk (Table 1). The direct standardised rates of inpatient admissions for unspecified dementia were significantly lower than England for Norfolk and Waveney CCG. West Suffolk CCG and Norfolk and Waveney CCG also had significantly lower direct standardised inpatient admissions for patients with Alzheimer’s disease.

Table 1: Direct standardised rate of inpatient admissions (aged 65 years and over) by type of dementia recorded and responsible CCG (2019/20), rates per 100,000

Area Alzheimer's disease rate Vascular dementia rate Unspecified dementia rate
NHS Ipswich & East Suffolk CCG 745 464 1,219
NHS West Suffolk CCG 525 459 1,142
NHS Norfolk & Waveney CCG 592 394 997
England 762 523 1,182

 

 

 

Note: Figures in bold are significantly lower than England

Source: Public Health England Fingertips Dementia Profile

A hospital admission can cause distress and confusion to someone who has dementia, which sometimes means they cannot go back to live in their own home, as their care needs are too great. NICE (the National Institute for Clinical Excellence) recommends work to reduce hospital admissions for people with dementia, for example, higher than expected numbers of short stays in hospital for people with dementia may suggest that community care and dementia services should be reviewed.

National trends in hospital admissions for people with dementia have been increasing, but the three CCG that cover Suffolk have rates similar to, or better than, England (table 2).

Table 2: dementia emergency admissions (and percentage that are short stay), people aged 65 and over, by Suffolk CCG of responsibility, 2019/20

Indicator England NHS Ipswich & East Suffolk CCG NHS Norfolk & Waveney CCG NHS West Suffolk CCG
Direct standardised rate of emergency admissions 3,517 3,419 2,657 3,096
Percentage that are short stay (one night or less) 31.4% 27.7% 25.3% 32.6%

Note: Figures in bold are significantly lower than England

Source: Public Health England Fingertips Dementia Profile

Mortality

The age-standardised mortality rate (ASMR) for deaths registered due to dementia and Alzheimer's disease has been increasing in Suffolk and in England since 2013. It is the only “top five” underlying cause in Suffolk – and in England – where the ASMR has increased since 2013. The rate has decreased for the other four main causes: cancer (malignant neoplasms), cerebrovascular diseases, chronic lower respiratory diseases, ischaemic heart diseases. The ASMR for dementia and Alzheimer diseases (sic) was 108.4 in Suffolk in 2020, and 120.5 in England.

Possible reasons for the increase include:

  • dementia and Alzheimer's disease are more likely to occur at older ages: as more people live longer and survive other illnesses there will be more deaths related to ageing,
  • there is a better understanding of dementia, and improved diagnosis,
  • the coding framework for cause of death was updated in 2011 and 2014 increasing the number of deaths with an underlying cause of dementia.

In 2019, the direct standardised mortality rate from dementia in people aged 65 and over was significantly better in Suffolk (796 per 100,000) than England as a whole (849 per 100,000) (Figure 5). The rate was also significantly better in Ipswich and East Suffolk CCG (779 per 100,000, Table 3). The rates for the two other CCGs that cover Suffolk (West Suffolk and Norfolk and Waveney) were not significantly different from the England rate (Table 3).(Public Health England Fingertips Dementia Profile)

Figure 5: Direct standardised rate of mortality: People with dementia (aged 65 years and over) per 100,000, Suffolk compared to England, 2016 - 2019 

Source: Public Health England Fingertips Dementia Profile

Table 3: Direct standardised rate of mortality: People with dementia (aged 65 years and over), Suffolk CCGs and England, 2019 - 2019

Indicator 2016 2017 2018 2019
NHS Ipswich And East Suffolk CCG 721 806 837 779
NHS West Suffolk CCG 828 832 771 832
NHS Norfolk & Waveney CCG not available 886 907 834
England 866 901 904 849

Note: Figures in bold are significantly lower than England

Source: Public Health England Fingertips Dementia Profile

Impact of COVID-19 on dementia

People with dementia are particularly vulnerable to COVID-19 because of their age, multimorbidity, and difficulties in maintaining physical distancing. Severity and mortality of COVID-19 increase with age, and with pre-existing illnesses such as hypertension and diabetes, so people with dementia are at particular risk.

COVID-19, dementia, and mortality

Dementia and Alzheimer’s disease was the most common pre-existing condition found among deaths involving COVID-19 and was involved in 12,869 deaths (25.6% of all deaths involving COVID-19) in March to June 2020. Office for National Statistics analysis of trends in non-COVID-19 deaths (2 May 2020 to 10 July 2020) compared to the five-year average showed a large rise in excess deaths not attributed to COVID-19 during the first wave of the pandemic, alongside the spike in COVID-19 deaths. These deaths were largely in older age groups and there was a large spike in deaths due to dementia and Alzheimer’s disease during the period from March to May.

Undiagnosed COVID-19 cases could help explain this rise, while the slow decline may indicate deaths due to dementia and Alzheimer’s disease are linked to longer-term changes, such as changes to practice in care homes to combat COVID-19. Deaths involving dementia and Alzheimer’s disease occurred above five-year average levels for adults aged under 65, however deaths involving dementia and Alzheimer’s disease in people aged 65 years and over were not above five-year average levels for the same period.

People with dementia may be at increased risk of infection if they receive support for personal care. Care homes have been particularly affected by COVID-19 and lockdown measures (changes to routines or group activities, mask-wearing, restrictions on family visits) may cause distress in people with dementia. Dementia and Alzheimer’s disease was listed in over half of COVID-19 deaths in care home residents in wave one (deaths registered week ending 20 March 2020 to 12 September 2020) and just under half of COVID-19 deaths in wave two (deaths registered week ending 12 September 2020 to 2 April 2021).

The most common pre-existing conditions in COVID-19 deaths in non-care home residents during both waves were diabetes (males) and hypertensive diseases (females, 22.6%).

COVID-19, dementia, and mental health

COVID-19 and control measures affected some people with dementia and their carers, for example, stress from dealing with COVID-19 rules, anxiety caused by social isolation, lack of respite care and fear of catching COVID-19. A survey of 1,800 carers and people living with dementia by the Alzheimer’s Society found 41% of people who received a care and support package had had this reduced or stopped since lockdown began. 46% of people with dementia said lockdown had a negative impact on their mental health, and 95% of carers reported a negative impact on their own mental or physical health.

It has been suggested the impact of COVID-19 might lead to increased neuropsychiatric symptoms and use of psychotropic medication. The three CCGs that cover Suffolk had worse (higher) rates of people with dementia prescribed anti-psychotic medication in the six weeks up to the end of October 2020 (Table 4) compared to England.

Table 4: Dementia: Proportion of people with dementia prescribed anti-psychotic medication in the last six weeks, October 2020, Persons, All ages

Indicator Value (%) Count Compared to England
NHS Ipswich And East Suffolk CCG 11.8% 440 worse
NHS West Suffolk CCG 12.5% 295 worse
NHS Norfolk & Waveney CCG 13.8% 1,396 worse
England 10.1% 44,457 does not apply

Source: Public Health England Fingertips Dementia Profile

COVID-19 impact on diagnoses and service provision

COVID-19 and the measures put in place to reduce transmission have affected services supporting people with dementia, and collection of data used in reports like this. For example, data submissions for dementia assessment and referral were suspended for April 2020, and no data collection has been required for months up to and including July 2021 (date of this report).

A timely diagnosis of dementia relies on business as usual occurring in the health system, in particular access to a GP, as well as specialist services. Since March 2020,  the COVID19 pandemic has reduced business as usual health services in England, which “will have a significant impact on the quality of life for people living with dementia and their carers along with overall health outcomes”. For example, although Public Health England state “it is not possible to quantify the impact at this time”, data on the Estimated Dementia Diagnosis Rate in people aged 65 and over (EDDR) up to and including May 2021 shows:

  • The EDDRs for May 2021 for Ipswich and East Suffolk CCG (59.2%), and West Suffolk CCG (59.5%) are similar to the England rate, but the EDDR for Norfolk and Waveney CCG (55.4%) is significantly lower.
  • Ipswich and East Suffolk CCG and Norfolk and Waveney CCG have rates significantly lower than May 2019, although the West Suffolk CCG rate is 59.5%, similar to May 2019.
  • The decrease in EDDR since May 2019 was greater than the England decrease (9.6%) in Ipswich and East Suffolk CCG (12.2%) and Norfolk and Waveney CCG (13.1%). The decrease in West Suffolk CCG was less (6.1%).

The proportion of people aged 65 and over with a formal diagnosis of dementia (prevalence) has decreased significantly in each of the three CCGs compared to May 2019 (3.9% Ipswich and East Suffolk CCG, 3.8% West Suffolk CCG, 3.6% Norfolk and Waveney CCG). The decrease in Ipswich and East Suffolk (12%) and Norfolk and Waveney (13%) is greater than the England decrease of 9.9%.

Most formal diagnoses of dementia are provided by specialist clinicians at memory assessment services (memory clinics). To receive a referral to a memory assessment service from primary care, an individual should be assessed by a general practitioner.  Comparing cumulative counts of referrals to a memory clinic over the past three years shows (Figure 6):

  • In May 2021, the number of people referred to a memory clinic aged 65 and over was higher in all the CCGs that cover Suffolk than May 2018: Ipswich and East Suffolk CCG (181), West Suffolk CCG (87), NHS Norfolk and Waveney CCG (255)
  • The greatest increase in referrals since May 2018 was 277.1% in Ipswich and East Suffolk CCG, (52.6% West Suffolk CCG, 116.1% Norfolk and Waveney CCG, 3.8% England)

Figure 6: Dementia and Alzheimer’s disease cumulative count of referrals to a memory clinic, England and Suffolk CCGs, October 2018 to May 2021

Note: The year starting October 2017 and ending in August 2018 has been used as a baseline as opposed to more recent years due to poor data quality. The 2017/18 baseline data is missing a point for September.

Source: Fingertips dementia profile report Wider impact of Covid19 on health – dementia surveillance factsheet (May 2021)

Preventing dementia 

Although age is the biggest risk factor for dementia, dementia is not an inevitable part of getting older. Genetics only cause dementia in a small proportion of cases. In most people, lifestyle factors play a role in determining how likely they are to develop the condition. The risk of dementia is lower in people who:

  • have higher levels of education
  • work in more “mentally demanding” occupations
  • have cognitive stimulation (reading, doing puzzles, learning a second language)
  • are socially active (e.g. socialising, volunteering)

The National Institute for Health and Care Excellence (NICE) recommends reducing the risk of or delaying the onset of disability, dementia and frailty by helping people to:

  • stop smoking (prevalence of smoking in Suffolk is similar to England, Figure 8)
  • be more active (percentage of physically inactive adults in Suffolk is similar to England, Figure 8)
  • reduce their alcohol consumption
  • improve their diet
  • lose weight if necessary and maintain a healthy weight

NHS health checks, for adults aged 40 – 74, measure cholesterol, blood glucose and blood pressure, so are a useful opportunity to identify potential risks as well as advise patients on healthier lifestyle. In the period 2016/17 – 2020/21, 44.1% of Suffolk’s eligible population received an NHS health check, significantly better than England as a whole (33.4%).

Risk factors for dementia

Around 40% of dementia cases worldwide might be attributable to 12 potentially modifiable risk factors (Figure 7):

  1. less education (under 20)
  2. hypertension
  3. hearing impairment
  4. smoking
  5. obesity
  6. depression
  7. physical inactivity
  8. diabetes
  9. infrequent social contact
  10. excessive alcohol consumption
  11. traumatic brain injury
  12. air pollution

Some of these risks can be reduced even in older age, for example stopping smoking, or using hearing aids to address hearing loss.

Figure 7: Population attributable fraction of potentially modifiable risk factors for dementia

Source: Livingston, G. et al. Dementia prevention, intervention, and care: 2020 report of the Lancet Commission

In summary (see also Figure 8), and compared to England, Suffolk has:

  1. Similar percentage of 16-17 year olds not in education, employment or training. A lower percentage of the population educated to NVQ4 and above (34.6% compared to England’s 42.8%
  2. Higher rates of hypertension (and increasing)
  3. Similar rates of self-reported hearing loss for Ipswich and East Suffolk and West Suffolk CCGs, but higher for Norfolk and Waveney CCG.
  4. Similar smoking prevalence.
  5. Similar percentage of adults (18 and over) classified as overweight or obese according to survey data, although the percentage of adults recorded on GP registers as overweight or obese is higher than England (11.4% compared to 10.5%).
  6. Higher recorded prevalence of depression (and increasing).
  7. A lower percentage of physically inactive adults (20.2% compared to 22.9%).
  8. Prevalence of diabetes similar to England (increasing). 
  9. Pre-pandemic, there was a similar percentage of adult social care users (in the 18 years and over age group and in the aged 65 and over age group) who had as much social contact as they would like. During the pandemic (14/10/2020 to 22/2/2021) Suffolk had a similar percentage of people who “often or always” felt lonely. Note that these measures are not ideal for measuring infrequent social contact; the Office for National Statistics emphasise “it is important not to confuse loneliness and social isolation. They are different concepts requiring different approaches to measurement”, mainly because one is subjective (loneliness), while the amount of social contact can be objectively measured.
  10. A lower percentage of adults in Suffolk abstain from alcohol (12.5% compared to 16.2%), although the percentage of adults binge drinking is also lower, and the percentage of adults drinking over 24 units of alcohol per week is  similar to England (all measures 2015-2018 data).
  11. Headway (the brain injury association) has calculated the number of admissions in England for non-superficial head injuries have increased by 30% since the start of the century (to 2016/17). Headway’s calculated rates per 100,000 population for the CCGs covering Suffolk: 156 (Great Yarmouth and Waveney CCG), 186 (Ipswich and East Suffolk, 249 (West Suffolk). These compare to a rate of 240 for England.
  12. 5.3% mortality is attributable to particulate air pollution in the population aged 30 and over (England 5.1%).

Figure 8: Suffolk County dementia profile: dementia prevention

Medical conditions

Pre-existing medical conditions that can increase the risk of dementia include:

  • Parkinson’s disease,
  • Stroke (Suffolk has higher prevalence than England as a whole, Figure 8)
  • type 2 diabetes,
  • high blood pressure or hypertension (Suffolk has higher prevalence than England as a whole, Figure 8)

Higher recorded prevalence (e.g. hypertension) may be due to increased diagnosis, enabling better management:

  • 2019/20 data show management of hypertension (measured as the proportion of people with hypertension with “satisfactory blood pressure control”) varies by Suffolk CCG: Norfolk and Waveney has a significantly lower percentage than England, West Suffolk similar, and Ipswich and East Suffolk higher (Figure 9).
  • In 2018/19, West Suffolk CCG and Ipswich and East Suffolk CCG had a higher (better) percentage of people with type 2 diabetes who met treatment targets for glucose control, blood pressure and cholesterol, but Great Yarmouth and Waveney CCG was significantly worse than England (figure 10).

Figure 9: satisfactory control of hypertension by age and Suffolk CCG, 2019/20

Source: Public Health England, Fingertips National General Practice Profiles 

Figure 10: support for people with type 2 diabetes by Suffolk CCG, 2018/19

Source: Public Health England, Fingertips Diabetes Profile 

Inequalities

There is greater prevalence of dementia among black and South Asian ethnic groups.

In the UK, 62% of people with dementia are female and 38% are male. This is likely to be because women live longer than men and age is the biggest known risk factor for the condition (although it is not an inevitable part of ageing). Dementia is the leading cause of death among women in the UK. Women are more likely to care for someone with dementia, and those who act as dementia carers feel less supported than their male counterparts. Many carers feel isolated and depressed, which are risk factors for dementia.

What policies affect dementia?       

National

The Prime Minister’s challenge on dementia 2020 was set up in 2015. The current Government has recommitted to the Challenge. By 2020, the Challenge aimed for England to become:

  • the best country in the world for dementia care and support and for people with dementia, their carers and families to live; and
  • the best place in the world to undertake research into dementia and other neurodegenerative diseases.

In February 2019, the Government published phase 1 of its review of the implementation of the Challenge on Dementia 2020, stating it is “largely on track” to meet its commitments to improve the lives of those living with dementia, and their families and carers, including: “over 2.8 million people becoming Dementia Friends and 365 areas in England committing to being Dementia Friendly Communities…[and] the £250 million Dementia Discovery Fund”. The UK Dementia Research Institute was set up in 2016, and the spending target was reached in 2019.

The NHS Long Term Plan (2019) built on the Five Year Forward View (2014) to:

  • support people to age well,
  • extend independence,
  • give carers greater recognition and support,
  • improve hospital and home care provided to people with dementia,
  • double research investment (including £300m government support),
  • support the voluntary sector (including the Alzheimer’s Society Dementia Connect programme), and
  • prevent cases of dementia. 

The National Institute of Health and Care Excellence (NICE) published guidelines covering mid-life approaches to delay or prevent the onset of dementia in later life, and diagnosis and management of dementia.

The 2014 Care Act gave carers the right to a needs assessment and associated Carer’s Support Plan, and entitles carers to support if they meet the eligibility criteria. The Carers Action Plan 2018–20 “set out a cross-government programme of work to improve support for carers over the next two years” is due to be evaluated in 2021. Although “the Government is ‘committed to improving the adult social care system and will bring forward proposals in 2021. It is not clear what form the proposals will take when published, or if they will include informal carers.” 

Local

In March 2021, the Suffolk Health and Wellbeing Board voted to sign up to a shared vision (set out by the Suffolk Dementia Forum) of how dementia-friendly communities would be supported and extended in Suffolk: “People living with dementia and their carers in Suffolk will have the best opportunities to be safe and well and continue to live an active life of their choosing, within an informed community that supports, includes and values them”. This built on the Board’s 2015 commitment to create a dementia-friendly County, and one of its four priorities: “older people in Suffolk have a good quality of life” (reviewed in 2019) ().  The Suffolk Dementia Partnership Board has subsequently been established to galvanise and co-ordinate action across the system to achieve the board’s vision.

Public Health Suffolk has supported 24 local projects through the dementia-friendly communities fund, and there are several Dementia Action Alliances, as well as independent initiatives such as the long-standing Debenham Project. “Dementia-friendly communities are those in which both those with dementia and those who are caring for them, have the best possible opportunities to live beyond the diagnosis”.

Further information

There are several charities whose focus is on dementia or Alzheimer’s disease, including Dementia UK, Alzheimer’s Research UK and Alzheimer’s Society. The organisations all provide information about dementia and support to sufferers. Alzheimer’s Research UK is a good source of quantitative data about dementia.

Dementia Action Alliance are an alliance for organisations across England to connect, share best practice and take action on dementia. The alliance’s aim is to bring together leading organisations across England committed to transforming health and social care outcomes for people affected by dementia.

Dementia Together is a service that provides practical information and support for people who are curious, concerned or living with dementia, their carers and healthcare professionals. It is available to anyone living in Suffolk and Waveney.

References and further reading

Alzheimer’s Society. (2009). Counting the cost Caring for people with dementia on hospital wards.

Alzheimer’s Society. (2014). Dementia UK: update

Alzheimer’s Society, & Evans, S. (2020). Worst hit: dementia during coronavirus.

Baker, C., Jarrett, T., & Powell, T. (2021). Dementia: policy, services and statistics overview

Dementia UK. (n.d.). The Carer’s Assessment.

Department of Health. (2015). Prime Minister’s challenge on dementia 2020

Department of Health & Social Care. (2014). Care Act factsheets

GOV.UK. (2018). What qualification levels mean: England, Wales and Northern Ireland. 

Headway. (2018). Acquired brain injury statistics (2016-17).

Health and Wellbeing Board. (2021, March 11). Meeting Documents - 11 March 2021.

House of Commons Library. (2021). Informal carers research briefing (07756)

Institute of Public Care. (n.d.). POPPI - Projecting Older People Population Information

Kulakiewicz, A., Baker, C., Foster, D., & Parkin, E. (2021). Dementia Action Week Research Briefing

Kulakiewicz, A., Baker, C., Foster, D., Parkin, E., Loft, P., & Powell, T. (2020). The effect of the covid-19 outbreak on people affected by dementia

Livingston, G., et al. (2020). Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. In The Lancet (Vol. 396, Issue 10248, pp. 413–446). 

National Institute for Health and Care Excellence. (2015). Dementia, disability and frailty in later life – mid-life approaches to delay or prevent onset

National Institute for Health and Care Excellence. (2018). Dementia: assessment, management and support for people living with dementia and their carers

National Institute for Health and Care Excellence. (n.d.). Hospital care: dementia.

NHS digital. (2020). Dementia diagnosis rate and prescription of antipsychotic medication to people with dementia. 

NHS Digital. (2021). Recorded Dementia Diagnoses.

The NHS Long Term Plan. (2019).

NHS England. (n.d.). Delivering the Forward View: NHS planning guidance

NHS England. (n.d.). Dementia Assessment and Referral Statistics.  

NHS England. (2020, June 25). About dementia - NHS.

Nomis - Official Labour Market Statistics. (n.d.). Labour Market Profile (2021).  

Nomis, & Office for National Statistics. (2020, March 24). Population projections - local authority based by single year of age.

Office for National Statistics. (2018, December 5). Measuring loneliness: guidance for use of the national indicators on surveys.

Office for National Statistics. (2020, July 1). Deaths registered in England and Wales.

Office for National Statistics. (2020, July 17). Deaths involving COVID-19, England and Wales.

Office for National Statistics. (2020, September 2). Analysis of death registrations not involving coronavirus (COVID-19), England and Wales, 28 December 2019 to 10 July 2020.

Office for National Statistics. (2020, December 2). Dementia and Alzheimer’s disease deaths including comorbidities, England and Wales.

Office for National Statistics. (2021). Mapping loneliness during the coronavirus pandemic

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