JSNA Age Well

1.1 Demographics

For latest demographic information please go to the population explorer on DataWand.

1.2 Life Expectancy at Age 65

Life expectancy at age 65 is an estimate of the average number of years at age 65 a person would survive if he or she experienced the age-specific mortality rates for that area and time period throughout his or her life after that age. Healthy life expectancy at age 65 shows the years a person can expect to live in good health beyond 65 years, rather than with a disability or in poor health.

1.3 Healthy Life Expectancy at Age 65

1.4 Inequalities in Life Expectancy at Age 65

1.5 Ward-level Life Expectancy at Age 65

The latest (2010–14) Ward-level life expectancy at age 65 and percentage change in life expectancy since 2002–06 (the figure below) Life expectancy at age 65 was the highest in three wards in the least deprived quintile, the same Wards had the highest life expectancy at birth. The relationship between deprivation and life expectancy at age 65 in other deprivation quintiles is less clear, with the most deprived wards having either average or low life expectancy (LE) at age 65. There was a substantial variation in relative gains in life expectancy at age 65 at a Ward-level. Bedford was the only Ward with percentage decrease in life expectancy at age 65 between 2002–06 and 2010–14 (4.6% reduction in LE at age 65). The highest gains in life expectancy at age 65 of over 20% were recorded in Northcote, Earlsfield and Latchmere.

Ward-level Life Expectancy at Age 65 in 2010–14 with Percentage Increases Since 2002–06 by Ward Deprivation Quintile

Source: London DataStore: Life Expectancy at Birth and Age 65 by Ward and London Wards Indices of Deprivation

2.1 Morbidity in Older Adults

The GBD also provides modelled estimates of the burden that can be attributed to a number of risk factors. It uses years lived with disability (YLD) to attribute the burden of morbidity. YLD is a measure of morbidity that combines the prevalence of each disease with a rating of the severity of its symptoms (excluding death itself), to give an overall measure of the loss of quality of life.

Low back pain, age related hearing loss, Chronic Obstructive Pulmonary Disease (COPD) , followed by lower back pain and falls were the most common causes of YLD in both Wandsworth and London males. For females, the top four causes are the same for Wandsworth and London: lower back pain, diabetes, hearing loss and falls. COPD was the 5th most frequent cause in London, whereas for Wandsworth’s females, it was Osteoarthritis (table below).

Conditions Linked to the Highest Number of Years of Life Lived with Disability (Ranked) in Wandsworth and London, 2019

Source: Global Burden of Disease. 2019

2.2 Mortality in Older Adults

In 2019, ischaemic heart disease was the leading cause of death in males aged over 70 years, followed by COPD and lower respiratory infections. Top 5 causes of death in London were the same; the main difference was in mortality rate from heart disease: Wandsworth’s rate was 14% lower than the London average rate (785 per 100,000 vs. 912 per 100,000 population).

In females aged over 70 years, ischaemic heart disease, lower respiratory infections and Alzheimer’s disease were the leading causes of death in Wandsworth and in London (table below).

Cause of Mortality Ranked in Males and Females Aged 70 and over in Wandsworth, 2019

Source: Global Burden of Disease. 2019

Mortality Risk Factors

Causes of death in the population are influenced by a broad range of factors. Using the Global Burden of Disease, certain risk factors for disease can be ranked based on the proportion of deaths they are associated with. Risk factors are divided into 3 main groups: behavioural, metabolic and environmental.

The risk factors accounting for the highest proportion of deaths among those aged over 70 years was tobacco, high blood pressure, high fasting plasma glucose and dietary risks. Smoking accounted for deaths from five major causes: neoplasms, chronic respiratory diseases, cardiovascular diseases, respiratory diseases and respiratory infections (figure below).

High blood pressure accounted for deaths from two main causes, cardiovascular diseases (heart disease and stroke) and diabetes and kidney diseases. High blood sugar level contributed to cardiovascular, cancer, diabetes and kidney diseases. Dietary risks in this age group contributed to deaths predominantly from cardiovascular disease.

Attribution of Deaths to Risk Factors Broken Down by Broad Cause of Death in Over 70-Year-Olds in Wandsworth, 2019

Source: Global Burden of Disease. 2019

2.3 Common Mental Disorders

The estimated prevalence of common mental disorders (CMD) in older people provides a valuable resource in the planning of preventative mental health interventions, such as psychological therapies. The indicator is designed to estimate local prevalence of CMD using national survey estimates for specific population cohorts and applying them to local demography.

Estimated prevalence of common mental disorders: % of population aged 65 & over: In 2017, Wandsworth’s rate was 11.4% (n=3474), which was the 16th lowest in London, 11.2% higher than the England average and 1.0% higher than the London average. Time series data were not available for this indicator.

Source: OHID: Public Health Profiles

3.1 Falls

A fall is defined as an event which causes a person to, unintentionally, rest on the ground or lower level, and is not a result of a major intrinsic event or overwhelming hazard ⁷.

The human cost of falling includes distress, pain, injury, loss of confidence, loss of independence and mortality. Falling also affects the family members and carers of people who fall.

Financially, unaddressed fall hazards in the home are estimated to cost the NHS in England £435 million. The total annual cost of fragility fractures to the UK has been estimated at £4.4 billion which includes £1.1 billion for social care; hip fractures account for around £2 billion of this sum. Short and long-term outlooks for patients are poor following a hip fracture, with an increased one-year mortality risk of between 18% and 33% and negative effects on daily living activities such as shopping and walking ⁸.

As people get older, they are more likely to fall over. falls can become recurrent and result in injuries including head injuries and hip fractures.

Falls and fall-related injuries are a common and serious problem for older people. People aged 65 and older have the highest risk of falling, with 30% of people older than 65, and 50% of people older than 80 falling at least once a year ⁹.
Amongst older people living in the community, 5% of those who fall in a given year will end up with fractures and hospitalisation. One in two women and one in five men in the UK will experience a fracture after the age of 50 ¹⁰.

The causes of having a fall are often multifactorial and occur due to the presence of risk factors. Risk factors for falls include, but are not limited to, having a history of falls, muscle weakness, poor balance, visual impairment, polypharmacy, environmental hazards and a number of specific conditions ^{URL: https://www.gov.uk/government/publications/falls-applying-all-our-health/falls-applying-all-our-health].

3.2 Hospital Admissions due to a Fall

Falls are the largest cause of emergency hospital admissions for people aged 65+, and impact on long term health outcomes of older adults; often resulting in people moving from their own home to long-term nursing or residential care.

Emergency hospital admissions due to falls in people aged 65 and over: In 2022/23, Wandsworth’s rate was 2187.4 per 100,000 (n=705), which was the 10th highest in London, 13.2% higher than the England average and 5.6% higher than the London average. The latest Borough figure for 2022/23 was also 12.0% lower than in 2010/11, in comparison with 9.1% decrease in England’s rate in the equivalent time period.

Source: OHID: Public Health Profiles

Source: OHID: Public Health Profiles

Emergency hospital admissions due to falls in people aged 65 to 79: In 2022/23, Wandsworth’s rate was 1197.7 per 100,000 (n=280), which was the 6th highest in London, 29.0% higher than the England average and 12.6% higher than the London average. The latest Borough figure for 2022/23 was also 10.4% lower than in 2010/11, in comparison with 10.5% decrease in England’s rate in the equivalent time period.

Source: OHID: Public Health Profiles

Source: OHID: Public Health Profiles

3.3 Hip Fractures

Hip fracture, in many cases a result of a fall, affects mobility of older people–only around 30% of the affected people return to the levels of independence prior to the fracture and one in three ends up leaving their own home and moving to long-term care ¹¹.

Hip fractures in people aged 65 and over: In 2022/23, Wandsworth’s rate was 507.8 per 100,000 (n=165), which was the 14th highest in London, 9.0% lower than the England average and 1.1% higher than the London average. The latest Borough figure for 2022/23 was also 11.7% lower than in 2010/11, in comparison with 9.3% decrease in England’s rate in the equivalent time period.

Source: OHID: Public Health Profiles

Source: OHID: Public Health Profiles

3.4 Falls Services in Wandsworth

The Wandsworth Integrated Falls and Bone Health Service (IFBHS) was commissioned in 2012/13 needs. The IFBHS offered a holistic and preventative approach to falls which replaced the post-hoc falls management approach taken by prior services.

IFBHS is provided by St George’s NHS Foundation Trust and has the following aims:

• Reduction in the number of unscheduled admissions for people who have experienced a hip or other fragility fracture, due to falls
• Increase in the number of appropriate individuals people receiving a falls and bone health risk assessment
• Increase in the number of people in target groups undergoing an individually tailored community or home-based therapeutic exercise programme
• Increase in the number of people who are on appropriate medication and are adhering to medication advice.
• Reduction in the rate recurrent fragility fractures in the longer term
• Improved quality of life for people at risk of falls
• Reduction in the fear of falling
• Improved physical measures.

The service includes clinical staff (physiotherapists and occupational therapists) and group-based activities (e.g., Otago Falls prevention, Bone BOOST) delivered in the hospital or community settings.

3.5 Evidence Based Interventions in Falls Prevention

NICE and Public Health England lead on providing evidence-based guidance with regards to falls prevention, outlining approaches to interventions and activities helping to prevent falls and fractures in older people.

NICE guideline ¹² recommends strength and balance training as part of an individualised multifactorial intervention. Those most likely to benefit are older people living in the community with a history of recurrent falls and/or balance and gait deficit. A muscle-strengthening and balance programme should be individually prescribed and monitored by an appropriately trained professional.

The National Falls Prevention Coordination Group’s Falls and fracture consensus statement (2017) advocates a collaborative and whole system approach to prevention, response and treatment ¹³. This includes:

• Promoting healthy ageing across the life-course
• Evidence-based case finding and risk assessment
• Evidence-based strength and balance exercise programmes and opportunities for those at low to moderate risk of falls
• Ensuring safe homes
• Demonstrating actions to reduce risk in high-risk health and care environments
• Fracture liaison services
• Evidence-based collaborative care for falls-related severe injury.

Interventions for older people living in the community with a low to moderate risk of falling should include strength and balance exercise programmes. These programmes are effective for primary and secondary falls and non-vertebral fractures in older people, but more effective for those who have a history of recurrent falls or who have a balance or gait deficit ¹⁴.

While there is evidence that walking has numerous health benefits for older people in general, it should not be included in programmes for participants considered at high risk of falling as this may result in further falls.

In order to be effective, programmes must:

• be continued over a duration of at least 50 hours
• be carried out two to three times a week
• challenge balance and improve strength through resistance training and exercise in a standing position
• be sufficiently progressive
• be tailored to the individual; pitched at the right level, taking falls history and medical conditions into account
• be delivered by specially trained Instructors.

At the end of the programme, older people should be assessed and offered a range of follow-on classes. These should suit their needs and abilities, include strength, balance, and support their progression.

Falls prevention requires a collaborative and comprehensive approach (figure below) by the possible model of a falls prevention care pathway published by Age UK.

Falls Prevention - Collaborative Model

Source: Age UK

Age UK advise that services should offer a choice of and referral to an evidence-based exercise programme such as the Otago Exercise Programme or Postural Stability. For those who have not had a fall, effective exercise programmes can also include tai chi, dancing and other general exercise classes that include components of strength and balance ¹⁵.

There is evidence of cost-effectiveness for certain falls prevention interventions including:

• Falls Management Exercise (FaME) Group Programme
• Otago Home Exercise
• Tai Chi Group Exercise
• Home Assessment and Modification (HAM)–in which relevant professional risk assess a person’s usual place of residence to identify environmental hazards and carries out actions to reduce these.

A tool, commissioned by PHE, was developed to assess the return on investment (ROI) for these 4 programmes. The findings from this analysis indicate that all 4 interventions could be considered cost-effective when compared with usual care (i.e., no falls prevention service) in an English setting. It was noted that 1 out of the 4 interventions (home assessment and modification) should produce a positive financial return. For the remaining 3 interventions (Otago, FaME and Tai Chi) it was noted that, whilst not providing a positive financial ROI, there would be a positive societal return (i.e., improved quality of life) on the initial investment ^{16 17}.

An internal falls prevention exercise evidence review (2019), carried out by Richmond and Wandsworth Public Health team, found literature to support Otago and Tai Chi. Evidence was found to support Tai Chi for reducing falls, or risk of falls, among elderly people, although, not for those who are frail. There was also evidence to suggest that alternative models of Otago in the community could be effective; although it was noted that further studies would be required to confirm and develop these findings.

Group-based exercise has been shown to be effective; however, this should be targeted group exercise that had been individually prescribed. Evidence also showed that home-based exercise could reduce the rate of falls the risk of falls, which could benefit those unable or reluctant to attend group classes.

Overall, the optimum approach for older people living in the community at risk of falling should include strength and balance exercise. Evidence-based exercise programmes recommended are FaME, Otago, and Tai Chi, and should be prioritised for consideration for local falls prevention exercise programmes. Other interventions reviewed provide benefits for strength and/or balance, such as dance, Pilates, yoga and Nordic Walking, but more research is needed to confirm their effectiveness in preventing falls among older people.

Falls prevention requires a multi-disciplinary, collaborative and whole-systems approach, with priority towards recognising individuals at risk and adopting a personalised yet multi-faceted approach to falls prevention.

5.1. Reablement Services

The proportion of older people aged 65 and over offered reablement services following discharge from hospital captures the volume of reablement offered locally ^{19 20}. When combined with the measure determining whether an individual remains living at home 91 days following discharge–it helps to quantify the success of the reablement service offered within Wandsworth and compare it to other Local Authorities in London. Ideally, the number of reablement services offered to residents aged 65+ is high while the proportion of successful reablement services preventing residents from leaving their homes is also high.

Percentage of people aged 65 and over offered reablement services following discharge from hospital.: In 2021/22, Wandsworth’s rate was 3.3% (n=156), which was the 16th lowest in London, 17.9% higher than the England average and 23.3% lower than the London average. The latest Borough figure for 2021/22 was also 36.8% lower than in 2010/11, in comparison with 5.7% decrease in England’s rate in the equivalent time period.

Source: OHID: Public Health Profiles

Source: OHID: Public Health Profiles

Percentage of people aged 65 and over who were still at home 91 days after discharge from hospital into reablement services: In 2021/22, Wandsworth’s rate was 96.2% (n=150), which was the 3rd highest in London, 17.6% higher than the England average and 13.0% higher than the London average. The latest Borough figure for 2021/22 was also 9.6% higher than in 2010/11, in comparison with 0.2% decrease in England’s rate in the equivalent time period.

Source: OHID: Public Health Profiles

Source: OHID: Public Health Profiles

5.2 Social Isolation

6.1 Seasonal Flu Vaccine

Population vaccination coverage: Flu (aged 65 and over): In 2022/23, Wandsworth’s rate was 66.2% (n=24881), which was the 15th lowest in London, 17.1% lower than the England average and 3.1% lower than the London average. The latest Borough figure for 2022/23 was also 5.6% lower than in 2010/11, in comparison with 9.6% increase in England’s rate in the equivalent time period.

Source: OHID: Public Health Profiles

Source: OHID: Public Health Profiles

6.2. Pneumococcal Polysaccharide Vaccine

Population vaccination coverage: PPV: In 2022/23, Wandsworth’s rate was 63.8% (n=22345), which was the 10th lowest in London, 11.2% lower than the England average and 5.0% lower than the London average. The latest Borough figure for 2022/23 was also 7.4% higher than in 2010/11, in comparison with 1.9% increase in England’s rate in the equivalent time period.

Source: OHID: Public Health Profiles

Source: OHID: Public Health Profiles

6.3 Shingles Vaccine

Population vaccination coverage: Shingles vaccination coverage (71 years): In 2022/23, Wandsworth’s rate was 45.9% (n=829), which was the 8th highest in London, 5.0% lower than the England average and 12.6% higher than the London average. The latest Borough figure for 2022/23 was also 4.5% higher than in 2018/19, in comparison with 1.6% decrease in England’s rate in the equivalent time period.

Source: OHID: Public Health Profiles

Source: OHID: Public Health Profiles

7.1 Definition of Dementia

Dementia is an umbrella term used to describe a range of progressive neurological disorders (conditions that affect the brain). Although there are many subtypes of Dementia, the five most common are: Alzheimer’s Disease, Vascular Dementia, Dementia with Lewy Bodies, Frontotemporal Dementia, and Mixed Dementia. Some people may have a combination of different types of Dementia, and these are commonly called mixed Dementia ²¹.

Although often thought of as a disease of older people, around 5% of people with Alzheimer’s Disease are under 65. This is called early-onset or young-onset Alzheimer’s and usually affects people in their 40s, 50s and early 60s, with around 5% of people with Alzheimer’s Disease under 65 ²². Early onset Dementia is caused by generally similar diseases to Dementia in older people (known as ‘late-onset Dementia’), but there are differences to note. There is a wider range of diseases that cause Young-onset Dementia, and a younger person is much more likely to have a rarer form of Dementia. Alzheimer’s is the most common cause of early-onset Dementia. However, there are other causes in younger people, such as Frontotemporal Dementia (FTD) and much rarer causes such as Huntington’s Disease and Creutzfeldt-Jakob Disease (CJD) ²³. A person with Young-onset Dementia may experience different symptoms from the memory loss usually associated with Dementia in older people. They could have, for example, problems with behaviour, vision, or language.

There is no cure for Dementia and the progressive deterioration that it causes results in high morbidity and, invariably, an earlier death for those afflicted with it.

7.2 Causes of Dementia

Dementia is not a single disease but is a term used to describe the symptoms that occur when there is a decline in brain function ²⁴. As mentioned above, several different diseases can cause dementia (the figure below). Many of these diseases, such as in Alzheimer’s, are associated with an abnormal build-up of proteins in the brain. This build-up causes nerve cells to function less well and ultimately die. As the nerve cells die, different areas of the brain shrink. In vascular dementia, If the oxygen supply to the brain is reduced because of narrowing or blockage of blood vessels, some brain cells become damaged or die. In Dementia with Lewy Bodies tiny abnormal structures (Lewy Bodies) form inside brain cells. They disrupt the chemistry of the brain and lead to the death of brain cells ²⁵.

Source: Dementia - NICE CKS

7.3 Dementia in the UK

Dementia is associated with complex needs and, in the later stages of the condition, with high levels of dependency and morbidity and therefore is one of the major causes of disability and dependency among older people worldwide. This is the case not only for the people who have the condition, but also challenges for their carers and families.

In England and Wales, dementia accounts for every 1 in 8 deaths ²⁶ making it the leading cause of death nationally. In 2018 it was estimated that there were around 850,000 people living with dementia, with this number expected to rise to over 1.6 million by 2040 ²⁷. Dementia therefore represents a significant current and, even greater, future challenge for all aspects of our society, with its effects being felt throughout not only the health and social care system, but also within communities, families and by individuals and their carers.

A national study ²⁸ suggested that almost 7 in 10 people with dementia also have one or more other health condition. It reports that patients with dementia are more likely to have multiple health conditions. A total of 22% live with 3 or more comorbidities and 8% live with 4 or more comorbidities, compared to 11% and 3% respectively in the all-patient group.

The impact of dementia on health and wellbeing is significant and is progressively negative. The Alzheimer’s Society have reported that people fear Dementia more than any other disease ²⁹. The loss of cognitive functions leads directly to reduced quality of life, increasing ill-health and early death for those living with the condition. A Dementia diagnosis, however, does not only impact the affected individual, but it also impacts their family, friends, work-colleagues, and the community; this impact can be physical, emotional, and financial.

Family and friends are often impacted through the need for provision of additional care and support for individuals with dementia, many take on the role of informal carers, carers that are not paid for their services. This results in additional personal strain for them but also loss of earning as they often must remain at home to care for their loved ones. Alzheimer Society estimates that the percentage of carers caring for more than 100 hours per week has increased from 40% to 50% since March 2020 ³⁰. In a wider context, Carers UK’s estimates that the average carer is now spending 65 hours a week on caring responsibilities 6[Behind Closed Doors, Carers UK (October 2020)].

The scale of the challenge that dementia poses to communities, local councils and national governments therefore is not to be underestimated, and it is for this reason that it has been identified as being the greatest global challenge for health and social care in the 21st Century ³¹.

7.4 Dementia Prevalence in Wandsworth

Dementia: Recorded prevalence (aged 65 years and over): In 2020, Wandsworth’s rate was 4.7% (n=1693), which was the 4th highest in London, 18.7% higher than the England average and 13.0% higher than the London average. The latest Borough figure for 2020 was also 4.5% higher than in 2017, in comparison with 8.3% decrease in England’s rate in the equivalent time period.

Source: OHID: Public Health Profiles

Source: OHID: Public Health Profiles

Estimated dementia diagnosis rate (aged 65 and older): In 2023, Wandsworth’s rate was 73.6 per 100 (n=1598), which was the 3rd highest in London, 16.8% higher than the England average and 12.2% higher than the London average. The latest Borough figure for 2023 was also 2.5% higher than in 2017, in comparison with 7.2% decrease in England’s rate in the equivalent time period.

Source: OHID: Public Health Profiles

Source: OHID: Public Health Profiles

7.5 Emergency Admissions Linked to Dementia

Dementia: Direct standardised rate of emergency admissions (aged 65 years and over): In 2019/20, Wandsworth’s rate was 4820.4 per 100,000 (n=1515), which was the 7th highest in London, 37.0% higher than the England average and 20.1% higher than the London average. The latest Borough figure for 2019/20 was also 13.9% higher than in 2016/17, in comparison with 4.5% increase in England’s rate in the equivalent time period.

Source: OHID: Public Health Profiles

Source: OHID: Public Health Profiles

7.6 Dementia Related Mortality

Direct standardised rate of mortality: People with dementia (aged 65 years and over): In 2019, Wandsworth’s rate was 847.6 per 100,000 (n=265), which was the 6th highest in London, 0.2% lower than the England average and 17.3% higher than the London average. The latest Borough figure for 2019 was also 5.5% higher than in 2016, in comparison with 1.9% decrease in England’s rate in the equivalent time period.

Source: OHID: Public Health Profiles

Source: OHID: Public Health Profiles

Deaths in Usual Place of Residence: People with dementia (aged 65 years and over): In 2019, Wandsworth’s rate was 65.8% (n=171), which was the 8th highest in London, 6.4% lower than the England average and 0.0% higher than the London average. The latest Borough figure for 2019 was also 1.1% lower than in 2016, in comparison with 3.2% increase in England’s rate in the equivalent time period.

Source: OHID: Public Health Profiles

Source: OHID: Public Health Profiles

7.7 National Policy Context for Dementia

Dementia is a national priority ³². There are many policy drivers for transforming dementia care, with a long-standing commitment in England to address dementia across all aspects of a dementia pathway; from pre-diagnosis to end of life care.

The first strategy of its kind, The National Dementia Strategy, ‘Living Well with Dementia’ (Department of Health, 2009) ³³ was backed up by the Five Year Forward View, published in October 2014 ³⁴ which recognised dementia as a priority area. This further highlighted an aim to improve earlier diagnosis of dementia to slow the progression of the disease with treatment. To achieve this, the NHS Five Year Forward View focused on why there was a need for provision of a consistent standard of care for patients, improved support to clinicians and advisors and focus on proper care plans developed in partnership with patients and their families.

Following the publication of the Five Year Forward View, NHS England along with national partners launched a New Models of Care programme in 2015 ³⁵. The programme encouraged a more integrated care approach, which would present an opportunity to transform dementia care and support. Furthermore, the Next Steps NHS Five Year Forward update plan in 2017 ³⁶ focused on specifying what this integrated care model for dementia would look like within the established sub-regional Sustainability and Transformation Partnerships, as a mechanism to delivering the Five Year Forward Plan.

Building on the ambitions of both the National Dementia Strategy and the Five Year Forward View, the Department of Health’s Prime Minister’s Challenge on Dementia 2020, further highlighted the importance of good dementia care, describing the need to improve recognition and quality of care for people with dementia and support for their carers. This included challenges to improve public awareness of dementia, ensuring health and social care staff receive appropriate training for their role, ensuring continuity of care and that any care package is ‘meaningful’ after diagnosis, as well as improving public awareness and understanding of dementia. Emphasis was particularly made on the role of communities in the form of “Dementia Friendly Communities” and on Local Authorities’ engagement with Dementia Action Alliances. Prime Minister’s Challenge was further supported by a call to action across all aspects of dementia diagnosis, care, and support from Department of Health’s publication, ’Dementia: A State of The Nation Report on Dementia Care and Support in England ³⁷.

The Prime Minister’s Challenge also highlighted the continued need to expand the evidence base investigating dementia treatment and prevention through increasing capacity for ahigh-quality research into these topics.

In 2014 the Care Quality Commission published their themed review of care for people with dementia, Cracks in the Pathway ³⁸, as they move between care homes and hospitals. They highlighted that quality of care for people living with dementia varies greatly across England and raised a need for reducing such variability, ensuring that the personalised approach, knowledgeable staff, for people living with dementia is available throughout England’s health and care system.

NICE have also provided a range of guidance on dementia, including Quality Standards for Supporting People to Live Well with Dementia ³⁹, guidance with recommendations for the identification, treatment, and care of people with dementia. NICE emphasized the principles of a person-centred approach ⁴⁰; it also published a guidance covering mid-life approaches to delay or prevent the onset of dementia, disability, and frailty in later life, to increase the amount of time that people can be independent, healthy and active in late life ⁴¹.

There have been many other policies and guidelines in place to improve health and promote healthy behaviours within the population; however, it has not often been clearly stated that by improving individual’s health reduces the risk of dementia, disability, and frailty. Therefore, the role of Local Authorities was further highlighted by Public Health England (PHE) in 2018 which emphasised their critical role in reducing dementia risk as well as the overall societal impact through the promotion of healthy lifestyles, age and dementia friendly built environment approaches, maximising signposting opportunities and promoting opportunities to improve cardiovascular health through the “what’s good for your heart is good for your brain” campaign.

The NHS Long Term Plan ⁴² published in 2019, commits to further improving the care for people with dementia, with the aim to improve the care provision to people with dementia, whether in hospital or within the home setting. It re-emphasised the focus on dementia by including it in its “biggest killers and disablers of our population” list, with promotion of an increased focus on community multidisciplinary teams (MDTs) to provide care in the community to retain independence of people living with dementia.

7.8 Local Policy Context for Dementia

Although, there is no strategy specifically designed to address dementia needs in Wandsworth, there are multiple plans or policies in which Dementia and Dementia-related care are considered in the table below. Overall, the policy context in Wandsworth describes a recognition of people with dementia and their unpaid carers; in addition to acknowledging the need for improved service accessibility in the Borough, whether that be access to medical care, housing, or social activities.

7.9 The Economic Impact of Dementia in the UK

Annually, the direct healthcare cost of dementia in the UK is estimated to be approximately £26 billion, the equivalent of £32,250 per person per year. As expected, social care costs account for a significant portion with £5.8 billion being private funded by individuals (23% of total cost) and the rest, £4.5 billion by the state (the figure below). More than half of these costs, however, come from unpaid care, which is valued at £11.6 billion; however, this may well increase in future, as more people leave employment to undertake care activities. The cost of this early loss of employment is estimated to be around £3 billion by 2030 ⁴³.

Approximately 25% of hospital beds are occupied by people living with dementia. Their length of stay is often longer than of people without dementia; the delays in supporting people with dementia to leave hospital are also more frequent ⁴⁴.

Financial Cost of Dementia to the UK

Source: Public Health England Guidance: Health matters: midlife approaches to reduce Dementia risk, 2016 ⁴⁵

7.10 Risk Factors for Dementia

The risk of developing dementia is associated with a mixture of factors–some which can be avoided (modifiable risk factors) and others that are virtually impossible to control (non-modifiable risk factors).

The risk of developing dementia can be affected by lifestyle, by genetics, vascular reasons or drug and medicine related ⁴⁶. It is estimated that more than a quarter 28% of the British public cannot identify potential modifiable risk factors for dementia and only 2% could identify any of the following risk factors: heavy drinking, smoking, high blood pressure, depression, and diabetes as well as the protective factor of taking regular exercise. This is despite that 59% of people know someone with dementia ⁴⁷.

Non-modifiable Risk Factors for Dementia

These are risk factors that as the name implies, cannot be changed as they are inherent in each person.

• Age: Age remains as the single biggest and non-modifiable risk factor for dementia with a person’s risk doubling approximately every 5 years ⁴⁸ above the age of 65. In Wandsworth there are currently estimated to be 30,744 residents ≥65, accounting for 9.7% of the total Borough population. It is estimated that this number is to increase by 87% to 57,622 residents by 2050 (the figure below - up to 2035 only)
• Gender: Alzheimer’s disease is more common in women than men, even after accounting for the greater life expectancy in women. This association is not seen for other dementia types (e.g., vascular, LBD or FTD). This is reflected in Wandsworth where 62.6% (1,318) of dementia patients ≥65 are women, even though women make up 56% (17,500) of the total ≥65 population. In terms of a wider impact, women are far more likely than men to end up as carers of those with dementia. Women are also more likely to reduce their hours or stop working to care for someone with dementia, and some feel penalised at work for taking on care responsibilities
• Ethnicity: The Social Care Institute for Excellence (SCIE) have estimated that more than 25,000 older black and minority ethnic (BME) people live with dementia in the UK. Further research suggests that South Asian, African, or Afro-Caribbean ethnic groups have higher rates of dementia than other ethnicities ⁴⁹ due to an increased rate is thought to be due to the higher prevalence of high blood pressure, diabetes, and strokes within these ethnic groups. This is particularly relevant in Wandsworth where 25.26% of the population identify as black, Asian and mixed ethnicity (BAME), based on the 2011 Census. In 2016, 40.7% of people, who died in Wandsworth with dementia being identified as the underlying cause, were born outside of the UK ⁵⁰
• Other: Learning disabilities, particularly Down’s Syndrome, significantly increase the risk of developing dementia and earlier onset dementia. In 2016/17 there were 1,205 people, known to their GP, affected by learning disability in Wandsworth. People with Down’s Syndrome are most likely to develop dementia linked to Alzheimer’s disease. However, there is a growing awareness that people with Down’s Syndrome can also develop other forms of dementia ⁵¹

Predicted Age Distribution Amongst People Aged ≥65 in Wandsworth (2018–2035)

Source: Wandsworth Dementia Health Needs Assessment, 2019

Although there is no evidence to suggest that sexual orientation is a risk factor, the experiences of living with dementia in the lesbian ,gay, bisexual and transgender (LGBT) community need to be taken into consideration. LGBT communities are affected by dementia both as patients but also as unpaid carers. Using national prevalence rates for dementia it is estimated that 5–7% of the population is LGBT, thus over 34,000 LBGT people living with dementia nationally. The Alzheimer’s Society estimates that between 35,000 and 70,000 LGBT people care for a person with dementia in the UK. Therefore, people from this community face additional challenges in terms of getting appropriate support and understanding. This may be finding appropriate residential care in later stages of the disease or accessing Support Groups in early stages where other older people are comfortable discussing same sex partnerships. Estimates of the prevalence and incidence of gender dysphoria and transsexualism are difficult to quantify due to the lack of robust national data. It is accepted that gender dysphoria, if not treated, can severely affect a person’s quality of life and health status. High levels of depression are reported within trans communities, therefore indicate that this population group may require greater access to support. The Alzheimer’s Society consider that as dementia progresses a person may not recall their current gender and they may see themselves being pre-transition and be surprised at the physical changes to their bodies. It is therefore important that the specific needs of transgender Dementia patients are addressed appropriately. The Alzheimer’s Society provide advice on dealing with the impact of dementia on disclosure. Patients may have to make decisions on a day-to-day basis about whether to disclose their sexual orientation or gender identity–whether to be ‘out’. As dementia progresses, patients may lose their ability to make this decision. They may also be unable to stop themselves disclosing their orientation or gender identity by mistake.

Modifiable Risk Factors for Dementia

There are also modifiable risk factors (the table below) of treatable medical conditions and lifestyle choices that play a role in developing dementia. These risk factors are partially in control of the individual, family, or community and, therefore, are the focus of many interventions. Recent studies have determined that improvements to lifestyle habits and management of comorbidities may lead to a lower risk of dementia. Management of cardiovascular risk factors (such as diabetes, obesity, smoking, and hypertension) and participation in regular physical activity, can reduce the risk of cognitive decline and may reduce the risk of dementia.

Health inequalities are exacerbated by the circumstances and environment in which we live, and often these health inequalities tend to persist into old age. There is a growing evidence that many of the modifiable risk factors for dementia are indirectly associated with socio-economic disparities in mortality and morbidity. For example, there is a strong link between cigarette smoking and socio-economic group ⁵². Smoking is one of the biggest modifiable risk factors for dementia doubling the risk of developing the condition. There is also evidence that low socio-economic position can result in lack of physical activity, another risk factor for developing dementia ⁵³. The socio-economic circumstances can have a major effect on physical and mental health and can create or close off the opportunities to make healthy choices ⁵⁴.

Common Modifiable Risk Factors for Dementia and the Prevalence of these Risk Factors Within Wandsworth Compared to London

7.11 Evidence Based Interventions in Dementia

Dementia is currently incurable and the number of symptomatic treatments available are limited. However, dementia research is a key element of the Prime Minister’s challenge on dementia. PHE Dementia Intelligence Network is tasked with collating new and existing data on dementia enabling public health agencies to have a better understanding of prevalence and how it affects the population. Significant improvements were made over the recent decades in making more readily available treatment options; this as well as widespread dementia screening in routine assessments will result in a more ‘dementia-friendly’ clinical culture and society.

Both secondary and tertiary prevention strategies have benefits to those living with dementia, by slowing progression and improving quality of life; therefore, maintaining an individual’s independence for longer ⁵⁵. The WHO published guidelines for the risk reduction of cognitive decline and dementia, whereby most of the recommendations align with current guidelines for the treatment of pre-existing health conditions and dependencies in the UK. For example, for cognitive outcomes in healthy adults, WHO identified physical activity interventions to have a positive effect on cognition and interventions for tobacco cessation may reduce the risk of cognitive decline and dementia, in addition to other health benefits. The report also recommends a healthy, balanced diet. However, much is still unknown about the long-term effect of treatment of older people and prevention through risk factor reduction ⁵⁶.

Further evidence of good practice can be drawn from a Good Practice Compendium (2011) ⁵⁷, which demonstrates how local delivery of the National Dementia Strategy can be supported, to improve outcomes for people with dementia and their carers. Similar content can be found in recent Alzheimer’s Society report published October 2020 ⁵⁸. Some of the evidence-based recommendations are included below, across the whole dementia journey.

7.12 Preventing Dementia

NICE recommends that national organisations and any local government department that influence public health, should develop and support initiatives to reduce the risk of dementia. Prevention and slowing of progress remain the mainstay of dementia management. A range of interventions have been suggested to be useful in supporting people with dementia to slow the progression of the disease and maintain their independence for longer ⁵⁹ through promoting healthy lifestyles. These include encouraging healthy behaviours (reducing smoking, increasing physical activity, reduce alcohol intake), achieving and maintaining a healthy weight and adopting a healthy diet.

Prevention is better than cure and in dementia more so than in other disorders does this ring true. Although, we cannot influence the most significant risk factor (age), key interventions aimed at influencing and reducing cardiovascular risk, improving physical and mental health, addressing social isolation and loneliness ⁶⁰ and combating drug and alcohol abuse are important avenues in dementia prevention. The Blackfriars consensus published in 2014 ⁶¹ acknowledged that sufficient evidence exists, with which people can be empowered to reduce their risk of dementia through reduction of cardiovascular disease risk and improving brain health. In addition, there is evidence that stimulating cognitive functions throughout the life cycle is associated with reduced risk of dementia ⁶². Cognitive stimulation therapy (CST) is a brief treatment for people with mild to moderate dementia involves taking part in group activities and exercises designed to improve memory and problem-solving skills.

7.13 Diagnosing Dementia

Referral to dementia specialist diagnostic services ensures that a diagnosis is both timely and accurate. Different types of dementia can be identified quickly to ensure targeted and tailored support is in place in a timely manner. Memory Assessment Services (MAS) are recommended by NICE guidance43 as a single point of referral for early diagnosis of dementia. They can be provided in several different settings, including a psychiatric or general hospital, as part of community mental health services or in primary care. This single point of access can then act as a lever for further investigation of dementia sub-types.

7.14 Ensuring Quality of Life with Dementia

There is a wealth of evidence of good practices in provision of support and care for people with dementia and their carers to maintain independence for as long as possible. The following are examples of interventions to promote cognition, independence, and wellbeing:

Dementia Friendly Communities and Organisations

Dementia Friendly Communities (DFC) and Dementia Friendly Organisations (DFO) have become widely accepted in local and national policy as playing an important role in improving the lives of people with dementia. In 2014 Public Health England (PHE) and Alzheimer’s Society launched a major campaign promoting Dementia Friends [URL: www.gov.uk/government/news/new-Dementia-campaign-launches-as-research-reveals-the-true-cost-to-business-of-Dementia].

The Alzheimer’s Society defines a DFC as: “a city, town or village where people with dementia are understood, respected and supported, and confident they can contribute to community life. In a dementia friendly community people will be aware of and understand dementia, and people with dementia will feel included and involved, and have choice and control over their day-to-day lives” ⁶⁹.

Both the LGA ⁷⁰ and The Alzheimer’s Society have also published criteria and guidance on what should constitute a Dementia Friendly Community or Dementia Friendly Organisation and best practice. Criteria include good access to community services, such as befriending and engagement services and adjusting the practicalities of daily life, such as housing, travel, and local businesses to be dementia aware, responsive, and respectful.

The Kings Fund, as part of their Enhancing the Healing Environment series, have published self-assessment tools in 2014 and updated in 2020 for housing, care-homes, health centres and hospitals (the figure below). The tool assesses 7 domains, providing a score, which reflects the “friendliness” of the setting to those with dementia. The care home assessment tool ⁷¹ is particularly relevant to Wandsworth, as CQC findings report that nearly half of care homes in Wandsworth require improvements ⁷².

Is Your Care Home Dementia Friendly?

Source: The Kings Fund ‘Is your care home Dementia friendly?’: EHE Environmental Assessment Tool Domains. 2020 (redesigned)

7.15 End of Life Care and Dementia

People with dementia have the same right to a good death as people with other health conditions. The Department of Health (2008) indicates that a good death would involve being treated as an individual, with dignity and respect, without pain and other symptoms, in familiar surroundings and in the company of close family and friends. However, it has been reported that often, people with dementia do not receive this level of dignified care and treatment, resulting in people with dementia not being referred for specialist end of life care, receive inappropriate treatment and, in some cases, ending their lives in pain ⁷⁷.

There are quality standards that cover the clinical care of adults (aged 18 and over) who are dying, both during the last 12 months of their life ⁷⁸, and during the last 2 to 3 days of life ⁷⁹, which are supported by The Alzheimer’s Society that advocate a need for advance planning for end of life care, with improvements needed in the co-ordination of a good death, ensuring that health and social care professionals are trained in providing high-quality, person-centred care to improve dignity and quality of life, even when communication has declined.

The digital care planning service ‘Coordinate My Care’ (CMC), facilitates electronic sharing of urgent care plans between healthcare providers, including the London Ambulance Service (LAS) to enable sharing of core information such as preferred place of death, cardiopulmonary resuscitation status, advice regarding ceilings of care and other patient preferences.

7.16 Community and Stakeholder Views on Dementia

On a national level, the Dementia Attitudes Survey carried out by Ipsos MORI for Alzheimer’s Society ⁸⁰ shows that, despite public awareness of dementia being relatively high, the range of symptoms of dementia are not as fully understood by the public, which has also very limited knowledge of the breadth of people, who are affected by dementia. There is a general misconception of dementia being a condition of old age rather than a cause of death, as well as a low level of understanding of risk factors that affect dementia. This contributes to a reduced recognition of ‘physical contributors to dementia risk compared to factors like less mental activity, loneliness, depression and stress’. The survey also identifies that the public want to know more about their brain health, especially within the younger and mid-life generation, to plan for future support and care.

There is public support for research into cure and prevention more so than research on improving quality of life for those affected with dementia, which demonstrates an appetite for increased knowledge on preventative action. The Dementia Attitudes Survey ⁸¹ also highlighted the importance of culturally sensitive messaging and support in future campaigns that should be informed by input from BAME communities.

7.17 Prioritising Dementia in Wandsworth

The 2019 Dementia Needs Assessment found that five years ago, the dementia prevalence in Wandsworth was lower than both regional and national averages. However, due to a high local incidence rate, prevalence in the Borough is increasing faster than elsewhere.

There are 12.6 new diagnoses of dementia per 1,000 people aged >65 per year in Wandsworth each year, a significantly higher rate than the London (10.3 per 1,000) and England (11.1 per 1,000) average ⁸².

As of January 2019, 1,719 people aged over 65 on Wandsworth GP registers had a diagnosis of dementia, accounting for 5.4% of the total Wandsworth ≥65’s population. This figure climbs to 2,158 (6.8% of the ≥65’s population) if estimates of those living with undiagnosed dementia are added. There was a total of 1,774 patients (including under 65) with a diagnosis of dementia ⁸³.

Based on these prevalence figures and 2012/13 average dementia care cost prices, the total cost of dementia in 2019 for Wandsworth is estimated as £70.4m, of which £27.3m is attributable to social care and £11.6m to healthcare costs. Importantly, given that there is expected to be a 47% increase in the number of people aged ≥65yrs affected by dementia by 2035, the costs associated with care for this cohort of patients is likely rise more steeply. There is also a wider system pressure on activity and finances; for example, Wandsworth has a falls history recorded for 42% of patients of the memory clinic, indicating an additional pressure on health and care resource, time, and expertise across the wider system.

One of the reasons that Wandsworth Borough Council considers dementia a priority is because the rate of increase can be decreased with effective reductions in dementia risk factors; with current evidence suggesting that up to 30% of the most common forms of dementia can be prevented or delayed simply by addressing these risk factors. A delay of 2 years in dementia onset can result in a 22% reduction in costs by 2050 with a 5-year delay resulting in a 36% reduction in costs ⁸⁴.

Additionally, slowing dementia progression also reduces the severity of disease for patients. Compared to baseline (normal progression) a delay in dementia progression by 25% would reduce the number of severe dementia cases in 2050 by approximately 43%, whereas a 50% slower rate of disease progression would reduce this by approximately 86%.

Geographic Variation

Due to differences in population size and case finding practices between GP’s, obtaining accurate data regarding the geographic prevalence of dementia diagnoses is difficult. Nevertheless, some over-arching themes have been identified through triangulation of data from Primary Care, Adult Social Care (ASC) Services and ward demographic profiles.

Generally, dementia prevalence is higher in southern and western wards of the Borough, reflecting the higher proportion of ≥65 residents who live in those areas. Wards such as Nightingale and Furzedown in the South, and West Putney and Roehampton and Putney Heath in the west all having relatively high prevalence rates. Of note, is that Nightingale has the highest prevalence of dementia out of all London wards at 1.5%, which is linked to having a number of care homes located in the area (the figure below). The size of this intra-borough variation, in both disease prevalence and risk factor prevalence, highlights the importance of considering geographic location when allocating resources related to dementia.

Dementia Prevalence Geographic Variation Data

Emergency Admissions

Although not usually a primary reason for admission, dementia is often a secondary or contributing factor in unplanned hospital admissions amongst the elderly. The increasing numbers of people with dementia living longer has resulted in a significantly higher likelihood that they will require care in acute hospitals.

In 2016/17, Wandsworth’s standard annual rate of emergency admissions to hospital for those ≥65 with dementia was 4,299 per 100,000 people, significantly higher than both London (4,052 per 100,000) and England (3,482 per 100,000) figures.

The number of admissions has also been steadily increasing since 2013/14 (the figure below). Across the whole of South London, Wandsworth has the highest ratio of London Ambulance Service (LAS) call-out to conveyance rates (i.e., the proportion of ambulance call outs that result in a hospital transfer) relative to the number of care beds. Of these admissions, 30.5% last less than 1 day, similar to the London average (28.9%), suggesting that the extent of illness is similar on presentation.

Number of Emergency Hospital Presentations Citing Dementia in Diagnostic Coding Amongst Wandsworth Residents Between 2013/14 and 2017/18

Source: Wandsworth HNA 2019

The Wandsworth Dementia HNA reported that there are many possible underlying causes which may be responsible for the increasing trend in dementia related emergency admissions, including increased dementia prevalence, reduced quality of formal dementia care and/or reduced informal care capacity, amongst others. One finding, suggested inadequate care quality may be responsible for this trend, given the highest LAS call out to conveyance rates relative to the number of care beds mentioned above. This is consistent with CQC findings that nearly half of care homes in Wandsworth require improvements ⁸⁷.

One of the aims of the NHS Long Term Plan was to help prevent unnecessary hospital admissions by providing great healthcare closer to home and this highlights a potential need to focus on improving the care provision at home/place of residence. One way that Wandsworth has tackled this is to provide a care home in-reach team who are able to target care homes with high call-out rates and who maintains a strong visual presence by attending regular GP rounds at the care homes as well as providing a rapid response function.

7.18 Limitations to the Dementia Data/Information

The data on many metrics for dementia care, particularly those related to equity of access, are limited. Consequently, it is not possible to achieve any conclusive insights into service equity in the Borough. Consideration of actions to resolve this are included in the Dementia HNA recommendations.

We currently do not have robust data on the actual number of dementia patients in Wandsworth with a disability, which is a substantial gap when considering planning services and their accessibility for people living with dementia.

Whilst there is comprehensive data available for older people, several data sets are unclear/ missing from current data provision. The HNA highlighted that the collection of data on sexual orientation and gender amongst Adult Social Care users is not sufficient to understand how needs related to sexual orientation and gender are distributed in the Borough in relation to dementia. Estimates of the prevalence and incidence of gender dysphoria and transsexualism are difficult to quantify due to the lack of robust national data. Estimates of the prevalence and incidence of gender dysphoria and transsexualism are difficult to quantify due to the lack of robust national data.

7.19 Dementia Services in Wandsworth

There is evidence of successfully implemented dementia care pathways, such as in Richmond and Lewisham, where both Local Authorities follow the life course of person-centred approach to dementia outlining the dementia services on offer. These priority phases include prevention, diagnosis, and care of dementia across a Dementia Pathway. They are described as preventing dementia, diagnosing dementia, supporting after a diagnosis of dementia, enabling a fulfilling life with dementia, and ensuring dignity and comfort for those dying with dementia, and it is with these phases that we can begin to map what is already happening in Wandsworth.

Ensuring Dignity and Comfort for Those Dying with Dementia

There is a Wandsworth End of Life Care Co-ordination service, which organises the delivery of end-of-life care from various health and social care providers, facilitates communications between the various agencies involved and is also able to create a care plan to guide the out of hours services.

Most of the palliative care in Wandsworth is provided by Royal Trinity Hospice (RTH). The RTH community team, consists of three registered nurses who visit people in their place of residence. Within the hospice building, there is a dementia friendly bay and staff are trained as dementia friends. From 2200-0700 hours, Marie Curie Nurses and Healthcare Assistants are available to care for patients with end-of-life care needs and provide vital support for their carer and families.

A nationwide tool to improve end of life care is Coordinate My Care (CMC). This is an IT resource on which the needs and wishes of people with various medical conditions are logged. 91% of those who have a CMC record in Wandsworth have their preferences related to death recorded (i.e., preferred place of death). Data taken from the CMC database of care plans created between April 2018 and March 2019 for care home residents in South West London, showed that for every 100 residents there were 20 CMC care plans created. Wandsworth had the highest rate of records created, with 33 to every 100 residents ⁹³.

The table below lists main local services that can be accessed to reduce the risk of dementia.

Examples of Local Services Supporting Dementia Risk Reduction and Support in Wandsworth

The following table lists services currently available to dementia patients and their carers.

Example of Services Currently Available to Dementia Patients and their Carers

7.20 Improvement Opportunities in Dementia Prevention and Care

The management and reduction of dementia risk factors with population-level initiatives, particularly targeted at mid-life age groups, is recommended by NICE clinical guidance (NG16) and the subsequent improvements opportunities in Wandsworth are outlined in the table below.

NICE guidance 16 Recommendations, Actions and Service Gaps Relevant to Local Authority Activity Aimed at Preventing Dementia

The improvements with regards to patients already with Dementia and for carers of people with Dementia were also assessed against NICE guideline 97 and framed around the principles of person-centred care in the context of Dementia, as described in the table below.

NICE guideline 97 Recommendations, Actions and Service Gaps in Relation to Local Authority Activity

8.1 Understanding End of Life Care

Death is inevitable and a guaranteed part of life. It affects not only the individual concerned, but also the person’s family, friends, and their community. In the context of an expected death, as result of aging or disease when, and where someone dies can be influenced, in line with the national and local policies and practices. Optimising the clinical and social care offer is part of the policy drivers. It must be noted that service improvement and transformation can facilitate a more peaceful, or perhaps more positive, experience for an individual and their loved ones. End of Life Care as a theme needs to be recognised and celebrated in a similar manner to when a baby is born.

Around 500,000 people die in England every year with approximately 1,500 being Wandsworth residents . More than 50% of these deaths are caused by cancers, circulatory and respiratory diseases, with circulatory disease in particular playing a larger role in Wandsworth than nationally. The majority of these deaths, both nationally and locally, occur in hospital, although national data shows that most patients would prefer to die at home ⁹⁴.

National evidence suggests that those with long-term conditions and older people are more likely to experience lower quality of care, and that the presence of comorbidities also increases the complexity of care needs at the end of their life. Due to the increasing numbers of people requiring this care, in part due to the ageing population from the ‘baby boomer era’ after the Second World War, thinking about health and care needs of the ageing population has become a national priority. The focus has also moved towards equipping local communities and voluntary sector organisations with resources to support this process.

It should be noted that death is not only a feature of ageing or illness, as it can happen at any point in the human life-course. Often death happens without notice, referred to as a ‘sudden and unexpected’ death, where an investigation by the police and/or a coroner may be required to establish causes, especially if a medical doctor is unable to issue a Medical Certificate of the Cause of Death ⁹⁵.

Some elements of death in relation to drugs and alcohol, suicide and infectious diseases are covered in their respective chapters. Overlaps within other parts of the JSNA are also referenced herein, such as the terminal illnesses usually leading to plannable deaths e.g., dementia, cancer, circulatory disease, respiratory disease, community voice, amongst others.

This Wandsworth JSNA subsection refers to people with imminent deaths as a result of disease or ageing, which can be planned for, where End of Life Care as treatment and/or care can be put in place to support the person. Sudden and expected deaths, where there is an inability to plan for them, are not included.

8.2 Definitions and Scope of End-of-Life Care

End of Life Care is defined by Marie Curie specifically as the “treatment, care and support for people nearing the end of their life” ⁹⁶, and is provided for those who are expected to be living in their last year, although this not always predictable and may only be provided in last weeks or days of someone’s life (ibid).

The General Medical Council (GMC) clarifies patients needing End of Life Care as being those with one or more of the following:

• advanced, progressive, incurable conditions
• general frailty and co-existing conditions that mean they are expected to die within 12 months
• existing conditions if they are at risk of dying from a sudden acute crisis in their condition
• life-threatening acute conditions caused by sudden catastrophic events” ⁹⁷.

End of Life Care supports a patient, their family and friends from a terminal diagnosis, through to bereavement and may include medical, psychological, social, spiritual and practical support. Types of support include:

• Managing a patient’s physical symptoms, including pain management
• Providing emotional support for the patient and their friends and family
• Discussing and agreeing on a patient’s expectations, wants and wishes
• Providing practical support to make a Will or gaining financial support
• Enabling the last few days, months or year(s) to be as comfortable as possible
• Ensuring where necessary, care is increased closer to death (ibid).

There are a range of professionals involved in End-of-Life Care, who work collaboratively to provide the necessary support a patient needs, given this may vary from case to case. These professionals can include nurse specialists, counsellors, physiotherapists, dieticians, social workers, occupational therapists and doctors. They may be employed by a range of agencies including voluntary sector (e.g., Macmillan Cancer Support), Local Authority Adult Social Care and NHS organisations within hospital trusts and community-level providers. End of Life Care can range from a patient permanently moving to a care home for around the clock support and care, regular visits by social workers to their place of residence or making plans to die in their own home, surrounded by loved ones.

Palliative Care is defined by Marie Curie, the UK’s leading charity that provides support to people with terminal illness as the “treatment, care and support for people with a life-limiting illness and their family and friends”. Life-limiting illnesses are those that are incurable and likely to cause death. Dementia and advanced cancer are examples of these illnesses (ibid). In some instances, there is no movement between the two definitions, particularly around emotional support with coping with a diagnosis. Palliative Care is therefore related to terminal illness diagnoses, rather than the fact death is forthcoming.

8.3 National Policy Context for End-of-Life Care

There has been no national End of Life Care strategy or policy produced since the publication of the End-of-Life Care Strategy by the Department of Health in 2008 ⁹⁸. Since then, two key quality standards have been published by the National Institute of Health and Care Excellence (NICE), including QS13: End of Life Care for Adults ⁹⁹ and QS144 Care of Dying Adults in the Last Days of Life ¹⁰⁰ that support providers and commissioners to improve the quality of End-of-Life Care. They provide guidance on identifying gaps and areas of improvement, measuring quality of care, understanding how to improve care, demonstrating quality care is being provided and commissioning high-quality services.

In recent years, the national policy focus has been on the importance of facilitating patient choice and providing a person-centred approach. Enabling individuals to achieve their preferred place of death and ensuring equity of access have also been vital elements of these developments.

In 2015, an independent review was undertaken by The Choice in End-of-Life Care Programme Board ¹⁰¹, which highlighted that around 5% of End-of-Life Care patients would have complex needs, requiring specialist input and 30% would require a targeted offer, the remainder would be supported by universal provision. Targeted support could include patients with repeat hospital admissions (many of which are within 90 days of their death).

This review supported the development of a national framework for NHS England, which moved from a population health perspective towards a more individualistic approach to enable patients to move freely between categories as their care needs changed. NHS England published The End-of-Life Care Programme ¹⁰², which includes guidance and also provides the Comprehensive Personalised Care Model, with 6 evidence-based components, that aims to involve patients at all stages, in ways which meet their individual needs:

• Shared decision making
• Personalised care and support planning
• Enabling choice, including legal rights to choose
• Social prescribing and community-based support
• Patient activation and supported self-management
• Personal health budgets and integrated personal budgets ¹⁰³.

At the start of 2019, The NHS Long Term Plan ¹⁰⁴ was issued by NHS England, outlining the needs for the NHS operate in a cost-efficient and targeted manner, fit for modern society, including investments in technological developments and greater joined-up working to support this. In the context of End-of-Life Care, this document specified a need for differentiated support, providing personalised budgets for individuals to act as purchasers for their care and training for clinicians and social care staff to support these shifts proactively, to improve outcomes for End-of-Life Care patients. It listed reducing emergency admissions and enabling more people to choose where they die as its prime outcomes. It also outlined an opportunity of match-funding proposals for CCGs to support the increase in funding available for Children’s Hospices.

Whilst there continues to be no formalised strategic national guidance or official expectations for local areas to implement End of Life Care strategies, the most effective driver for local areas remains the outcomes of the local JSNA alongside the focus of the NHS Long Term Plan (ibid).

8.4 Local Policy Context for End-of-Life Care

There is currently no Wandsworth End of Life Care Strategy, although there have been plans to undertake this exercise, to provide strategic approach to delivery of this work, delays have likely been born out of the pandemic. There is a recently established End of Life Care Programme for South West London Health and Care Partnership, following the creation of this 6-Borough alliance in April 2020. The emergency of the COVID-19 pandemic has delayed some developments of this work.

8.5 Prioritising End of Life Care in Wandsworth

As Wandsworth’s thriving population both grows and ages, the number of people aged 65 or over is projected to increase by 44% across 20 years (from 29,300 in 2015 to 42,200 in 2035) ¹⁰⁵. As a result, there will be a growing pressure on services for older people and those with terminal diagnoses across the life course. This is likely to particularly affect those services supporting the frailer and older population as they approach the end of their lives. This increasing population of older people is also likely to increase the prevalence of dementia and multimorbidity, potentially straining the local health and social care economy. Wandsworth has relatively high levels of recurrent emergency hospital admissions for patients in the last 90 days of life.

End of Life Care also has a role to play in managing resources and supporting people’s quality of life in their last days. Having an effective strategy and ensuring it is widely used, could provide unnecessary hospital deaths and increasing the percentage of residents in south-west London who die in their care home (rather than in hospital) by 1% would lead to savings of approximately £65,000 per year ¹⁰⁶, saving money and also supporting people to ‘die better’.

8.6 Tackling Inequalities in End-of-Life Care

In 2015, Marie Curie commissioned an Independent Review covering literature and national data which solidified some policy makers, commissioners, care givers and clinicians concerns around fairness of accessibility and options in End-of-Life Care nationally. The review highlighted the inequities in palliative care across services, ethnic groups, ages, diagnoses and locations. The review also highlighted that any additional costs to improving reach of palliative care to those underserved, were likely to be “offset by savings associated with reduced need for acute care and fewer hospital death” ¹⁰⁸.

The Care Quality Commission (CQC) has also explored inequalities in provision, through analysis of numerous data sources including from commissioners and staff. Further factors were found to be influential in the types of End-of-Life Care received, in addition to those outlined above, the CQC revealed background, sexual orientation, gender identity, disability and social circumstance were also factors impacting on the End-of-Life Care received. The CQC identified 10 groups of adults who often received inequitable End of Life Care, most of whom are covered by The Equality Act (2010) ¹⁰⁹:

• People with conditions other than cancer
• Older people
• People with dementia
• People from BAME groups
• LGBT people
• People with a learning disability
• People with a mental health condition
• People who are homeless
• People who are in secure or detained setting
• Gypsy and Travelling Communities.

As a result of the above, the CQC requested that commissioners to improve access to End-of-Life Care ¹¹⁰, noting that this is a vital need nationally, given the volume of people within the general population who will fit into at least one of these categories. People living in Wandsworth who feature in one or more of these groups are therefore more likely to be at risk of inequitable End of Life Care provision. Wandsworth CCG chose to focus on the first 8 categories for a local strategy. The needs of those in secure or detained settings both have complex needs and those residing in Wandsworth Prison fall into the responsibility of St George’s Hospital and gypsy and travelling communities are the responsibility of NHS-England. Wandsworth CCG were keen to focus on people from BME groups and those who are homeless as both are disproportionately large within the local population by comparison to the England average and targeting work towards this group is expected to have profound impacts on outcomes.

The 2015, the National Survey of Bereaved People (VOICES) noted some significant discrepancies:

• Overall quality of care for females was rated significantly higher than males, with 44% of female respondents rating the care as outstanding or excellent compared with 39% for males
• 7 out of 10 people (69%) rated hospital care as outstanding, excellent or good which is significantly lower compared with care homes (82%), hospice care (79%) or care at home (79%)
• Ratings of fair or poor quality of care are significantly higher for those living in the most deprived areas (29%) compared with the least deprived areas (22%) ¹¹¹.

Similarly, the CQC has also found that while 90% of hospices inspected are rated as outstanding, hospital care is less equitable with 42% of End-of-Life Care Services in acute hospitals considered inadequate and require improvements. This finding is supported by MacMillan’ ¹¹² highlights that deprivation increases an individual’s risk of emergency admissions and dying in hospital.

8.7 Factors Influencing the Population Need for End-of-Life Care

8.8 Services Available for End-of-Life Care

Wandsworth has a range of service providers offering End of Life Care to residents in their last 12-months of life. They range from district nurses, who have specialist equipment on offer to support people at home, to bereavement services.

These services include ¹¹⁷:

• Residential and nursing homes in Wandsworth, providing specific residential support on site (33)
• Medicines can be accessed out of hours from many of the 60 community pharmacies open in the Borough
• St George’s University Hospitals NHS Foundation Trust based in Tooting provides a number of community services for older people and patients with terminal illnesses. Nearby Chelsea and Westminster and Kingston Hospitals are also used by Wandsworth residents
• GP surgeries for medication, support and advice, referral and bereavement support (42)
• A thriving voluntary and community sector working in partnership with the Council and CCG to deliver key services, with 35% of adult residents involved in volunteering. Specific organisations working in End-of-Life Care include Marie Curie, the Carers Centre and Shooting Stars who provide children’s palliative care
• Social prescribing offer
• Royal Trinity Hospice and its coordination centre provide palliative care via a team of community.

8.9 Determining the Unmet Need for End-of-Life Care

8.10 Specific Groups and End of Life Care Health Inequalities

8.11 Evidence Based Interventions

The UK policy makers are currently heavily focussed on a number of key strands of End-of-Life Care; namely, to ensure provision of care is appropriate and taking individual differences into account both have a positive impact on a patient’s quality of life in their last years, months and days of life.

In 2016, the National Palliative and End of Life Care Partnership published a national framework for action, with 6 key ambitions to support people in their last months ¹²⁹. These are outlined in (the figure below) and reflect an increased focus on empowering and enabling local communities to contribute to End-of-Life Care services and seeing each person as an individual.

The Six Ambitions for Palliative and End of Life Care

Source: Ambitions for Palliative & End of Life Care ’A national framework for local action 2015–2020

The figure clearly shows the expectations of high quality and appropriate End of Life Care, to meet the needs of all patients in their last years, months and days of life.

Firstly, that each person needs to be seen as an individual, which marks a stark change to focusing on planning population-wide interventions of previous decades. Each person has a completely different life experience, and as such, is highly likely to have a different experience of dying and death.

Considering the cultural context, including language and specific social and religious practices in advance and not just at the time of death and in the bereavement stages is very important. Communicating in a manner to which is understood by the patient, their friends and family is vital. This would apply for all vulnerable groups, particularly those from BAME and LGBQTI group, given the cultural and identity components which when excluded can have a huge detrimental impact on quality of life in its final stages.

Secondly, all patients need to be provided with access to care; it is interesting to note that those who are more affluent often receive better quality of care.

Thirdly, wellbeing and comfort are addressed as core elements of care, involving reduction in distress in order for the end of life to be as comfortable for patients as possible.

Fourthly, coordination of care, including data sharing and communication between medical, social and voluntary sector staff alongside the friends and family of the patient is critical. This would reduce any gaps or duplication in gathering information and increase the likelihood of a person’s wishes regarding where and how they die to be widely known and honoured.

Fifthly, all staff involved in End of Life Care are fully competent, ensuring they are equipped with the necessary personal skills enabling then to provide compassionate.

Finally, that communities should be involved in the support and care, that people are confident in having conversations about dying and death and practical support is provided.

Dementia

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House of Commons (2017) Dementia: policy, services and statistics BRIEFING PAPER Number 07007, 21 June 2019

National Collaborating Centre for Mental Health. The Dementia Care Pathway. Full implementation guidance. London: National Collaborating Centre for Mental Health; 2018.

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PHE (2013) Improving Health and Lives. (2013). Making Reasonable Adjustments to Dementia Services for People with Learning Disabilities: Public Health England.

WHO–(2018) Risk reduction of cognitive decline and Dementia, WHO Guideline Essentials.

End of Life Care

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