This JSNA chapter provides a high-level summary on the older population of Richmond, and some of the factors affecting their health, wellbeing, and social care needs. Meeting the needs of an ageing population has considerable consequences for planning health and social care services and therefore this JSNA will be used to agree key priorities to improve the health and wellbeing of our older people, balancing the challenge of increasing need and the increasing cost of meeting that need within current budget levels.
For the purpose of this JSNA chapter, the term ‘older people’ has been defined as those over the age of 65 years. In some sections, data relating to a lower group has been included, for example, such as reference to early onset dementia. The report is organised under the following broad theme headings: Falls and Frailty, Safeguarding in the Elderly, End of Life Care and Dementia, and draws upon evidence from a range of sources. Wherever possible the data has been split further by age as the ‘older’ (aged over 75 years or 85 years+), will have more pressing and complex needs than the younger cohort.
The population is ageing with a large cohort of people now reaching their later years. This increased demand is set to continue as the population is living longer, yet many of these years are lived in poorer health, which may lead to difficulties with mobility and completing activities and daily living (ADL). Without capacity building, systems may be unable to meet the demand for high quality care services, both in the community and in accommodation settings. Nonetheless, adopting preventative approaches and supporting health and wellbeing at a younger age may reduce, delay or prevent the need for costly social care provisions. The national prevention agenda can provide residents with the tools required to live healthily and independently in the community for as long as possible. Ultimately by tackling wellbeing earlier in the life course, the outcomes for older people can be significantly improved and the most vulnerable people in society will continue to have access to high quality services.
For latest Demographic information please go to the population explorer on DataRich. In Richmond in 2021 16.2% (n=32,403) of the total population is 65 years +old. The proportion of older adults in the borough is higher than the London average (12.3%) with all 65+ age groups making up a larger population proportion than in London
In Richmond in 2024, 16.8% (n=33,933) of the total population were 65 years old and over. The proportion of people aged 65+ in the borough is 36.1% higher than the London average of 12.3%.
In line with the national picture, the number of older people in Richmond is increasing, many of whom will live with age-related needs that will make them more vulnerable to experiencing difficulties with mobility and personal care. The population of residents aged 65+ is projected to increase between 2023 and 2041 by 58.7% (from 32,468 in 2023 to 51,617 in 2041).
Source: © GLA 2021-based demographic projections. Housing-led population projections. Past Delivery 10-year migration, 2023
In Richmond in 2024, 9.5% (n=3,284) of the total population aged under 18 were from BAME ethnic groups. The proportion of residents aged 65+ from BAME ethnic groups in the borough is 69.6% lower than the London average of 31.3%.
Source: © GLA 2016-based Demographic Projections, 2017
The current use of social care support highlights the prevalence and complexity of need within the population. With an ageing population, demand on social care services is expected to increase as people are more likely to require health and care support later in life. While life expectancy is higher than the national average, the healthy life expectancy remains lower than actual life expectancy in Richmond. This means that demand on services is expected to rise as more people are living longer in poorer health.
The current use of social care support also reveals the prevalence and complexity of need within the population. In Richmond, 1,784 people received support from Adult Social Care Services within the community or accommodation-based services in 2018-19 (refer to level of need section for more detail). This included 328.1 per 100,000 permanent admissions to care homes of people aged 65 years and over in 2018/19, indicating the demand for more intensive support for people with the highest level of need. The loss of independence due to difficulties with mobility and personal care, can be life-altering and damaging to the physical and mental wellbeing of older people and therefore is a key priority within Richmond.
Older people are more susceptible to dramatic decline after a minor incident or illness. Of A&E attendances and ‘long lengths of stay’ in hospital, a large proportion are attributable to older people.
In Richmond, there were 18,425 non-elective admissions to hospital in 2018-19 (all ages) 1. Any hospital stays, unexpected or planned, can have a significant impact on the individual. This is particularly true for older people who are more susceptible to hospital acquired infections, mental decline, increased frailty, loss of independence and muscle deterioration. For example, for a person aged 80 years and over, every ten days in hospital is equivalent to ten years of muscle deterioration 2. A study also found that 30% to 60% of older people experience functional decline following discharge from hospital, which increases the risk of readmission, social care support and mortality 3. In order to keep older people in good health for as long as possible, preventative services are essential for the avoidance of hospital admissions, costly both for the person and overall system.
Social isolation, common amongst older people, can have a negative impact on both physical and mental health. The National Institute of Ageing research shows that social isolation is an associated risk factor for heart disease, cognitive decline and high blood pressure ^[‘Social Isolation, loneliness in older people pose health risks’. It is also thought that common mental health conditions, including depression and anxiety, are also caused by social isolation 4. Sadly, older people are especially susceptible to becoming isolated due to the death of people with whom they have close relationships, a loss of income, or difficulties with mobility. Ultimately, isolation amongst older people gradually worsens as their confidence lessens. Age UK estimates that at least 1.4 million older people in the UK are chronically lonely 5. 3.6 million older people consider that the television is their main form of company 6 and 1 in 3 people aged 75 years and over say that their loneliness is out of control 7.
In South West London, it is estimated that 39% of older people say that they are sometimes lonely (12,384 individuals) and 9% are chronically lonely (2,858) 8, 9 . Within Richmond, the areas that have the highest risk of loneliness in people aged 65 years and over are Hampton, Ham, areas around Twickenham and South Richmond 10. By using data from the 2011 census, it is estimated that 12% of households in Richmond are pensioners living alone 11. Although living alone does entail that someone is socially isolated, it can lead to a greater vulnerability, particularly if they are living alone due to the death of a spouse or relationship breakdown.
From respondents to the Adult Social Care Outcomes Framework, only 47.9% of social care users aged 65 years and older in Richmond reported having as much social contact as they would have like. However, this is higher than both the London average for all ages and the national average for people aged 65 years and over 12. Overall, the data highlights the issue of social isolation in Richmond as despite generally better outcomes than inner London boroughs, many older people in Richmond suffer from isolation.
Life expectancy at 65 is an estimate of the average number of years at age 65 years 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.
Life expectancy at 65: In 2020 - 22, Richmond’s rate was 20.3 years, which was the highest in London, 10.2% higher than the England average and 10.7% higher than the London average. The latest Borough figure for 2020 - 22 was also 17.4% higher than in 2001 - 03, in comparison with 12.9% increase in England’s rate in the equivalent time period.
Source: OHID: Public Health Profiles
Life expectancy at 65: In 2020 - 22, Richmond’s rate was 22.9 years, which was the 2nd highest in London, 9.3% higher than the England average and 7.3% higher than the London average. The latest Borough figure for 2020 - 22 was also 14.9% higher than in 2001 - 03, in comparison with 8.7% increase in England’s rate in the equivalent time period.
Healthy life expectancy at 65: In 2018 - 20, Richmond’s rate was 13.3 years, which was the 4th highest in London, 26.3% higher than the England average and 28.7% higher than the London average. The latest Borough figure for 2018 - 20 was also 14.3% higher than in 2009 - 11, in comparison with 5.8% increase in England’s rate in the equivalent time period.
Healthy life expectancy at 65: In 2018 - 20, Richmond’s rate was 11.0 years, which was the 16th lowest in London, 3.0% lower than the England average and 1.3% lower than the London average. The latest Borough figure for 2018 - 20 was also 12.0% lower than in 2009 - 11, in comparison with 6.6% increase in England’s rate in the equivalent time period.
Inequality in life expectancy at 65: In 2018 - 20, Richmond’s rate was 2.8 years, which was the 3rd lowest in London, 46.2% lower than the England average and 41.7% lower than the London average. The latest Borough figure for 2018 - 20 was also 24.3% lower than in 2010 - 12, in comparison with 13.0% increase in England’s rate in the equivalent time period.
Inequality in life expectancy at 65: In 2018 - 20, Richmond’s rate was 0.1 years, which was the lowest in London, 97.9% lower than the England average and 97.2% lower than the London average. The latest Borough figure for 2018 - 20 was also 95.2% lower than in 2010 - 12, in comparison with 20.0% increase in England’s rate in the equivalent time period.
The latest (2010-14) Ward-level life expectancy at 65 years and percentage increases in life expectancy since baseline of 2002-06 are presented in the figure below. Life expectancy was the highest in two Wards from the least deprived quintile (East Sheen and St Margarets). However, the relationship between deprivation and life expectancy at Ward-level is not too obvious, with the most deprived Wards having, typically, average life expectancy. Interestingly, there was a substantial variation in relative gains in life expectancy at Ward-level. Hampton was the only Ward with a slight decrease in life expectancy from baseline (-0.1%: from 82.2 in 2002-06 to 82.1 9 in 2010-14). The highest gains in life expectancy of over 6% were recorded in Kew and Richmond Riverside.
Source: London DataStore: Life Expectancy at Birth and Age 65 by Ward and London Wards Indices of Deprivation
The Global Burden of Disease (GBD) 13 provides modelled estimates of the burden of poor health and disability. The burden of disease analysis is a way to compare the impact of different diseases, conditions or injuries in a population and break it down by age group. The only age group for older adults that is available in the GBD toolkits is 70 and over. The impact of disease on Richmond older adults can be divided into morbidity (living with a disease) and mortality (dying from a disease).
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.
Age related hearing loss, diabetes, chronic obstructive pulmonary disorder (COPD), followed by lower back pain and vision loss were the most common causes of YLD in Richmond. These five conditions were responsible for 37% of all years of life in disability in residents aged 70+. For London males diabetes was causing the most YLD.
For females aged 70+ the top five causes for Richmond were hearing loss, lower back pain, diabetes, followed by vision loss and COPD: all responsible for 36% of all YLD. The top causes for London females were different: the order of top causes is different to Richmond, with lower back pain causing the largest number of YLD and falls replacing vision loss in the list of top 5 causes of disability (table below).
Source: Global Burden of Disease. 2019
In 2019, ischaemic heart disease was the leading cause of death in males aged over 70 years, followed by lower respiratory infections and COPD. Lung cancer was 5th most common cause in London, in Richmond, it was prostate cancer (6.8% of all deaths).
In females aged over 70 years, ischaemic heart disease, Alzheimer’s disease and lower respiratory infections were the leading causes of death in Richmond and in London. However, Alzheimer’s disease was the 2nd most frequent cause of deaths in Richmond, for London it was the 3rd most common cause of mortality (table below).
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 fasting plasma glucose, high body-mass index and blood pressure. Smoking accounted for deaths from five major causes: neoplasms, chronic respiratory diseases, cardiovascular diseases, respiratory diseases, and respiratory infections (the figure below.
High fasting plasma glucose accounted for deaths from two main causes, cardiovascular diseases (heart disease and stroke), and diabetes and kidney diseases. High body mass index contributed to cardiovascular, cancer, diabetes and kidney diseases. Dietary risks in this age group contributed to deaths predominantly from cardiovascular disease.
Mortality rate from all cardiovascular diseases, ages 65+ years: In 2021, Richmond’s rate was 778.4 per 100,000 65+ (n=250), which was the lowest in London, 23.8% lower than the England average and 23.4% lower than the London average. Time series data were not available for this indicator.
Mortality rate from respiratory disease, ages 65+ years: In 2021, Richmond’s rate was 305.3 per 100,000 65+ (n=98), which was the lowest in London, 30.7% lower than the England average and 26.3% lower than the London average. Time series data were not available for this indicator.
Mortality rate from cancer, ages 65+ years: In 2021, Richmond’s rate was 943.5 per 100,000 65+ (n=301), which was the 15th lowest in London, 8.5% lower than the England average and 0.8% lower than the London average. Time series data were not available for this indicator.
The number of excess winter deaths is linked to the outside temperature and the underlying level of disease in the population as well as other factors, such as how well-equipped people, and their environments, are to cope with the drop in temperature.
Winter mortality index (age 85 plus): In Aug 2021 - Jul 2022, Richmond’s rate was -2.9% (n=-10), which was the 2nd lowest in London, 125.7% lower than the England average and 120.7% lower than the London average. The latest Borough figure for Aug 2021 - Jul 2022 was also 116.5% lower than in Aug 2001 - Jul 2002, in comparison with 55.2% decrease in England’s rate in the equivalent time period.
Ageing, as a ‘slowing down’ process 14, can turn simple activities into barriers that prevent a person from living healthily and safely in the community. As people age, it is likely that they will experience some degree of difficulty with activities of daily living (ADL) including:
Due to the sequence of escalation, some older people may struggle to cope with domestic tasks yet are still able to be independent with their personal care. However, all the above can be exacerbated by issues with frailty.
The ageing process presents a variety of challenges for older people from frailty, illnesses and age-related conditions, such as Dementia. As a result, some older people may have needs that require support from social care service, as they are unable to cope with basic self-care tasks.
Frailty is a state of low energy, slower walking speeds and poor strength17. It is not an inevitable consequence of the ageing process, however, prevalence rates for frailty do increase with age (figure below). Women are also more likely to be affected by frailty in comparison to men. The severity of frailty has also been found to increase dramatically in the year prior to death 18.
The impact of ageing and loss of independence may not only have a detrimental impact on a person’s life but also places strain on the overall health and social care system due to the need for costly and intensive support services. These services are underpinned by the statutory obligations outlined in the Care Act 2014. The Act places a duty on Local Authorities to promote person-centred care that acknowledges the physical, mental and emotional well-being of the person. The aim is to achieve this through strengths-based and preventative care and support services. This is because many age-related conditions that exacerbate mobility and personal care issues can be reduced, delayed or prevented by early lifestyle adjustments and interventions.
Older people may also lose confidence in their ability to complete activities of daily living (ADL) or may become fearful of leaving their home due to decline in their physical or mental health. Identifying issues with mobility and personal care generally occurs after a sudden incident, where a person presents to health and social care services in crisis. The likelihood of experiencing issues with mobility, personal care and frailty increase with age, with the greatest prevalence amongst people aged 85 years and over. They are also most likely to experience rapid decline in their independence. There are several causes of mobility and personal care issues, including:
Examining the number of people living with these related conditions adds to the overall picture of need and the possible future demand on services. However, issues with mobility and personal care are multifaceted, whereby they are both the result of and cause of other age-related conditions. Any condition that has a significant impact can be referred to as life limiting. Currently 40% of older people in Richmond are estimated to live with a life limiting condition that affects their daily life either a little or a lot 23. From the 2011 census data, it has been predicted that the proportion of older people is predicted to increase with the largest increase in those aged 85 years and over.
Figures from the table below indicate:
Source: Projecting Older People Population Information System
The figure below illustrates the increasing level of need in the population of people aged 65 years and over.
The figure below illustrates recent demand for residential and nursing care, which has marginally declined over the past four years. This may be linked to the Council’s focus on community-based interventions to help people remain at home for as long as possible.
Source: Richmond Adult Social Care
In 2018-19, there were there were 1,784 services users, of whom 833 people received community-based services including homecare, day care, and services received via a direct payment, and 605 people who received accommodation-based care as indicated in the table below.
*-Community based services as shown above exclude respite provision, outreach and equipment Source: Richmond Adult Social Care
The estimated increases by 2030 are based upon the estimated population increase in older people with high enough needs that they require social care support (data taken prior to the Covid-19 pandemic). In line with this, the number of service users across all services is predicted to increase over the next ten years.
The numbers demonstrate that as far as possible people will be supported to live independently in the community for as long as possible. Home Care is a favoured support option for older people, as they can remain living in their own home and supports the building of resilience. To help recovery following hospital admission, some people will be offered a reablement package of care. A person will receive a short-term care package that focuses on regaining the person’s independence through a goal centred approach. In 2018-19, 92% of people were still at home 91 days after discharge from hospital into rehabilitation services. This is similar to the rest of London and England . Direct Payments are another method that allows the service user greater choices and control. Service users are given a budget from which they can arrange their own services. For example, they may employ their own personal assistant or arrange day activities or homecare.
In terms of accommodation-based services, there is likely to be an increase across most accommodation care categories with a shift towards independent living options such as extra care which is being promoted as an alternative to residential care. Needs analysis and demand modelling based on a combination of population projections and service use reveals the need to develop:
The table below shows the estimated population size of different ethnicities in the over 65 population in Richmond and the number of people utilising council provided services by ethnicity. In Richmond, the three largest ethnic groups within the over 65 years population are White at 92%, followed by 6% Asian or Asian British, and 1% Other Ethnic Group. By comparing attendance in services with the overall population percentage it can be identified that there is a lower number of Asian or Asian British people living in accommodation-based services. One possible explanation could relate to differences in culture, whereby Asian families are more likely to look after older family members in their own homes. However, the reasons behind this should be explored further given the diversity within the Borough. Age UK has also found that services for older people can fail to engage older people from a Black, Asian, Minority Ethnic background 25. For example, some older people may not be proficient in the English language and can only converse in their first language. This presents a barrier to attending services that are designed for English speakers and only have English speaking staff. From the data above we cannot currently discern the reasons for or between the active choice not to engage with services and services that are inaccessible to all, particularly for minority groups.
However, it is critical to note that the data is on Council provided services only, which reflects a different demographic of need in comparison to the wider older population. Other older people may organise their own support and services, more likely to be affluent White populations, which is not reflected in the table.
*-Percentage of the overall 65 plus population. **-Percentage of the ethnic group attending community or accommodation services
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 26.
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 27.
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 28. 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 29.
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].
As people get older, they are more likely to fall. Furthermore, 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 years and older have the highest risk of falling, with 30% of people older than 65 years, and 50% of people older than 80 years falling at least once a year 30.
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 31.
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, a history of falls, muscle weakness, poor balance, visual impairment, polypharmacy, environmental hazards, and a number of specific conditions 32.
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, Richmond’s rate was 2444.4 per 100,000 (n=805), which was the 6th highest in London, 26.5% higher than the England average and 18.1% higher than the London average. The latest Borough figure for 2022/23 was also 29.2% higher than in 2010/11, in comparison with 9.1% decrease in England’s rate in the equivalent time period.
Emergency hospital admissions due to falls in people aged 65 to 79: In 2022/23, Richmond’s rate was 1079.0 per 100,000 (n=265), which was the 12th highest in London, 16.2% higher than the England average and 1.4% higher than the London average. The latest Borough figure for 2022/23 was also 14.7% higher than in 2010/11, in comparison with 10.5% decrease in England’s rate in the equivalent time period.
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.
Hip fractures in people aged 65 and over: In 2022/23, Richmond’s rate was 510.4 per 100,000 (n=170), which was the 11th highest in London, 8.5% lower than the England average and 1.6% higher than the London average. The latest Borough figure for 2022/23 was also 15.3% lower than in 2010/11, in comparison with 9.3% decrease in England’s rate in the equivalent time period.
In Richmond, there is an Integrated Falls and Bone Health Service which aims to reduce the rate and risk of falls and fragility fractures amongst Richmond adults, and to improve the health and mobility of older people and sustain their independence. The service targets people who have had recurrent or occasional falls, those who feel at risk or afraid of falling and those aged 50+ for bone health management .
Additionally, several voluntary and community organisations provide strength and balance exercises as listed below:
Of note, key stakeholders from Kingston and Richmond, led by the CCG, are currently in the process of improving the current falls pathway in order to create a more integrated and streamlined approach to falls prevention.
NICE and Office for Health Improvement and Disparities 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 33 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 34. This includes:
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:
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.
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 36.
There is evidence of cost-effectiveness for certain falls prevention interventions including:
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 37 38.
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.
Estimated prevalence of common mental disorders (CMD) in elderly provides a valuable support in 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. Mental health problems have detrimental impact on mobility of older adults 39.
Estimated prevalence of common mental disorders: % of population aged 65 & over: In 2017, Richmond’s rate was 8.3% (n=2514), which was the lowest in London, 18.7% lower than the England average and 26.2% lower than the London average. Time series data were not available for this indicator.
When an older person finds themselves requiring care and support, they can arrange their care privately or through the Local Authority. The Local Authority will financially support people eligible needs and who are under the financial threshold. Care and support can either be provided in the community or in accommodation-based settings. Richmond Council will first explore the opportunities with community-based care as they enable the person to live independently in their own home. In turn, this helps the individual to build resilience and have more choice and control. Whether a person can receive care in the community, depends on their level of need. These services for older people include:
An older person may require help with preparing food, cleaning, or personal care; therefore, an appropriate service would be delivered meals or a support worker to provide help at set times throughout the day. Additional support can also be provided through simple aids and equipment, such as walking frames, handles and washing aids, which can assist people to live independently in their own home to prevent accidents and personal neglect. This may also include the use of assistive technologies and Telecare. More complex needs can be supported through the Disabled Facilities Grant (DFG) which funds housing renovations to accommodate changing needs, such as ramps, stairlifts and door widening. All these services help people to complete practical daily tasks, however, other day services are focused on wider wellbeing of the person.
Older people are encouraged to participate in the community through day centre provisions located across the Borough. Depending on the scope of the service, they can socialise, learn new skills and can access hot meals. Some of the community services are run by the voluntary sector, such as the successful partnership with Age UK Richmond. Examples of their services include providing a befriending service to tackle the issue of social isolation; a shopping service to ensure that older people can remain safely in their own home and a handyperson service for ad-hoc tasks that may be difficult to complete as an older person 40. As Richmond Council works to align its services towards a prevention agenda, the role of the voluntary sector will continue to be of critical importance.
Community-based support is not safe or appropriate for all older people. Individuals with higher levels of need may receive more intensive accommodation-based services, which fall into three main types of services:
Specialist services for older people with learning disabilities and sensory impairments are also available in both community and accommodation settings. In Richmond, there are 34 commissioned care homes, 2 commissioned day services for older people and 2 commissioned extra care services. Please note that this does not include services that local authority does not commission. (the figure below).
The services above for older people are either available for all older people or means tested depending on the type of service. For someone to receive accommodation-based and home care services they must meet the conditions set out in the Care Act and have less than £23,250 in capital/and or savings, to receive council funded care and support services. However, the challenge to meet demand will continue to grow alongside the estimated growth in the population of older people, including those aged 85 years and over who tend to have the highest care and support needs. Therefore, there will be a future unmet need in services for older people if service capacity remains at present levels.
Furthermore, Covid-19 has significantly impacted older people, the extent of which is not yet fully understood. For example, Covid-19 may impact on population predictions due to the higher death rates in 2020 of people aged 65 years and over. Many older people may be living with the symptoms of long-term Covid-19. Furthermore, many older people may experience cognitive decline or mental health issues from having to live in isolation from other people. At this stage, it is unknown how far-reaching the impact of Covid-19 has been on older people, but it is expected to be significant. Richmond Council will need to continue to support people by ensuring the aspirations of the Care Act 2014 are embedded into the care system and commissioning of services.
The Care Act 2014 lays out the responsibility for local authorities to ‘prevent, reduce and delay’ the development of needs for care and support 41. Richmond Council is developing preventative and community interventions to promote independence and self-care such as use of assistive technology, equipment and adaptations, reducing reliance on more intensive health and social care support. It has adopted a strengths-based approach to social work practice and services. This is a holistic and multidisciplinary approach to harness an individual’s abilities, strengths and interests as the focus of interventions. By building up positive aspects in a person’s life it is hoped that they will develop resilience and independence to cope better with challenges. For example, slowing the onset of frailty has a positive impact on a person’s quality of life and ability to live independently. A strengths-based approach is achieved in close collaboration with family, friends and the community. Prevention is also at the centre of the strengths-based approach. By improving the health and wellbeing of individuals throughout their life will also reduce their risk of developing life-limiting conditions that can have a detrimental impact on their independence. Ultimately, prevention will reduce the number of people who will require health and social care support later in life.
Social connections also have wide reaching benefits for older people as studies have found that frequent social contact with close family and friends are beneficial for lessening the impact of frailty 42.
Ultimately, it is important that professionals recognise and address the wider determinants of health because early interventions effectively promote health and wellbeing. Furthermore, in the future, there will be an increasing focus on assistive technology, which has a strong evidence base demonstrating its ability to increase well-being, maintain people’s independence for longer, and prevent the need for more intensive and costly health and care interventions. Assistive technology is an umbrella term covering devices, online and behavioural approaches, and apps that can help deliver health and care more efficiently, whilst maintaining or improving an individual’s independence.
Within the chapter most of the data was taken from:
The Adult Social Care Outcomes Framework (ASCOF) measures how well care and support services achieve the outcomes relevant to the service users and their carers. The ASCOF is used both locally and nationally to set priorities for care and support and measure progress against a set of social care indicators . This section reports Richmond’s performance on ASCOF indicators, including the latest ASC survey results, for service users and carers aged 65 and over.
The proportion of older people aged 65 and over offered reablement services following discharge from hospital captures the volume of reablement offered locally 43 44. 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 Richmond 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, Richmond’s rate was 4.9% (n=219), which was the 10th highest in London, 75.0% higher than the England average and 14.0% higher than the London average. The latest Borough figure for 2021/22 was also 221.9% higher than in 2010/11, in comparison with 5.7% decrease in England’s rate in the equivalent time period.
Percentage of people aged 65 and over who were still at home 91 days after discharge from hospital into reablement services: In 2021/22, Richmond’s rate was 92.2% (n=202), which was the 6th highest in London, 12.7% higher than the England average and 8.3% higher than the London average. The latest Borough figure for 2021/22 was also 2.4% higher than in 2010/11, in comparison with 0.2% decrease in England’s rate in the equivalent time period.
There is a well-established link between loneliness and poor mental and physical health. Richmond’s proportion of adult social care users aged 65+ who have as much social contact as they would like is presented below.
Social Isolation: percentage of adult social care users who have as much social contact as they would like: In 2022/23, Richmond’s rate was 44.9% (n=385), which was the highest in London, 8.2% higher than the England average and 25.8% higher than the London average. The latest Borough figure for 2022/23 was also 16.3% higher than in 2014/15, in comparison with 3.0% decrease in England’s rate in the equivalent time period.
Social Isolation: percentage of adult carers who have as much social contact as they would like: In 2021/22, Richmond’s rate was 30.5% (n=35), which was the 13th highest in London, 5.9% higher than the England average and 10.1% higher than the London average. The latest Borough figure for 2021/22 was also 3.0% higher than in 2014/15, in comparison with 28.0% decrease in England’s rate in the equivalent time period.
Vaccination coverage is the best indicator of the level of protection a population will have against vaccine preventable communicable diseases. There are three vaccinations routinely offered to people aged 65 and over: seasonal flu vaccine, pneumococcal polysaccharide vaccine (PPV) and shingles vaccine.
Population vaccination coverage: Flu (aged 65 and over): In 2022/23, Richmond’s rate was 76.5% (n=24733), which was the 2nd highest in London, 4.2% lower than the England average and 12.0% higher than the London average. The latest Borough figure for 2022/23 was also 0.3% lower than in 2010/11, in comparison with 9.6% increase in England’s rate in the equivalent time period.
Population vaccination coverage: PPV: In 2022/23, Richmond’s rate was 68.3% (n=22093), which was the 14th highest in London, 4.8% lower than the England average and 1.7% higher than the London average. The latest Borough figure for 2022/23 was also 8.4% lower than in 2010/11, in comparison with 1.9% increase in England’s rate in the equivalent time period.
Population vaccination coverage: Shingles vaccination coverage (71 years): In 2022/23, Richmond’s rate was 47.8% (n=789), which was the 3rd highest in London, 1.0% lower than the England average and 17.3% higher than the London average. The latest Borough figure for 2022/23 was also 2.6% lower than in 2018/19, in comparison with 1.6% decrease in England’s rate in the equivalent time period.
This Dementia section builds on the 2019 Dementia Health Needs Assessment and provides a common view of health and care needs for local Dementia residents and their carers. It documents current service provision, identifies gaps in health and care services, identifies unmet needs, and details evidence of effectiveness for different health and care interventions. Furthermore, it draws on a wide range of quantitative and qualitative data to bring together information from different sources and partners to create a shared evidence base, which supports health and social care service planning, decision-making, and delivery. It can also utilise by other organisations, including the voluntary and community sector, to plan services that meet the needs of the local population.
Dementia is a progressive disease often associated with complex health and social care needs; these needs are expected to increase in Richmond, as a result of expected increases in numbers of older adults living in the Borough. There are several gaps and opportunities that should be addressed to improve the Dementia offer across Richmond. Therefore, enacting a comprehensive Dementia prevention and care support offer for residents affected by and living with Dementia remains a key focus for Richmond council alongside partners across the health and social care arena.
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 45.
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 46. 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) 47. 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.
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 48. 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 49.
Source: Dementia - NICE CKS
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 50 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 51. 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 52 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 53. 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 54. In a wider context, Carers UK’s estimates that the average carer is now spending 65 hours a week on caring responsibilities 55.
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 56.
Dementia: Recorded prevalence (aged 65 years and over): In 2020, Richmond’s rate was 4.0% (n=1412), which was the 14th lowest in London, 1.0% higher than the England average and 3.9% lower than the London average. The latest Borough figure for 2020 was also 6.6% lower than in 2017, in comparison with 8.3% decrease in England’s rate in the equivalent time period.
Estimated dementia diagnosis rate (aged 65 and older): In 2023, Richmond’s rate was 68.7 per 100 (n=1598), which was the 9th highest in London, 9.0% higher than the England average and 4.7% higher than the London average. The latest Borough figure for 2023 was also 1.0% lower than in 2017, in comparison with 7.2% decrease in England’s rate in the equivalent time period.
Dementia: Direct standardised rate of emergency admissions (aged 65 years and over): In 2019/20, Richmond’s rate was 3253.6 per 100,000 (n=1065), which was the 6th lowest in London, 7.5% lower than the England average and 18.9% lower than the London average. The latest Borough figure for 2019/20 was also 5.7% higher than in 2016/17, in comparison with 4.5% increase in England’s rate in the equivalent time period.
Direct standardised rate of mortality: People with dementia (aged 65 years and over): In 2019, Richmond’s rate was 679.6 per 100,000 (n=227), which was the 10th lowest in London, 20.0% lower than the England average and 5.9% lower than the London average. The latest Borough figure for 2019 was also 9.5% higher than in 2016, in comparison with 1.9% decrease in England’s rate in the equivalent time period.
Deaths in Usual Place of Residence: People with dementia (aged 65 years and over): In 2019, Richmond’s rate was 67.3% (n=150), which was the 5th highest in London, 4.3% lower than the England average and 0.0% higher than the London average. The latest Borough figure for 2019 was also 25.6% higher than in 2016, in comparison with 3.2% increase in England’s rate in the equivalent time period.
Dementia is a national priority 57. 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) 58 was backed up by the Five Year Forward View, published in October 2014 59 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 60. 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 61 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 62.
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 63, 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 64, guidance with recommendations for the identification, treatment, and care of people with dementia. NICE emphasized the principles of a person-centred approach 65; 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 66.
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 67 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.
Although, there is no strategy specifically designed to address dementia needs in Richmond, there are multiple plans or policies in which Dementia and Dementia-related care are considered in the table below. Overall, the policy context in Richmond 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.
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 68.
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 69.
Source: Public Health England Guidance: Health matters: midlife approaches to reduce Dementia risk, 2016 70
There are 9.9 new diagnoses of dementia per 1,000 people aged 65 and over per year in Richmond, like the London (10.3 per 1,000) average. Nevertheless, given that approximately 31% of cases with dementia are undiagnosed in the Borough, the true incidence rate and therefore prevalence is likely to be far higher.
In January 2021, 1,145 people aged over 65 years on Richmond GP registers had a recorded diagnosis of dementia, accounting for 3.6% of the total Richmond’s ≥65’s population. This figure climbs to 1,722 (5.48% of the ≥65’s population) if estimates of those living with undiagnosed dementia are added 71. These most up to date data sets must take into consideration of the country’s circumstances from 31st January 2021.
Based on these prevalence figures and 2012/13 average dementia care cost prices, the total cost of dementia in 2019 for Richmond is estimated to be £73m, of which £28.5m 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 65 years and above affected by dementia by 2035, the costs associated with care for this cohort of patients will likely rise more steeply. There is also a wider system pressure on activity and finances, such as the falls agenda, where Richmond have falls history taken in the memory clinic, indicating an additional pressure on resource, time, and expertise across the wider system.
One of the reasons the London Borough of Richmond upon Thames considers dementia a priority is because this rate of increase can be reduced with effective reductions in dementia risk factors. Current evidence suggests 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 two 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.
Additionally, slowing dementia progression also reduce 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% reduced rate of disease progression would reduce this by approximately 86%.
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 72. 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 73.
These are risk factors that as the name implies, cannot be changed as they are inherent in each person.
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 76. 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 77. 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 78.
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 79. 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 80.
Further evidence of good practice can be drawn from a Good Practice Compendium (2011) 81, 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 82. Some of the evidence-based recommendations are included below, across the whole dementia journey.
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 83 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 84 and combating drug and alcohol abuse are important avenues in dementia prevention. The Blackfriars consensus published in 2014 85 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 86. 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.
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.
The Department of Health published guidance on what to expect from health and care services for those who are recently diagnosed with dementia, outlining the different stages of support a person and their carer may require; it is also a good building block for identifying what is good practice 87. NICE guidance indicates that service provision should ensure that people living with dementia have ‘equivalent access to diagnosis, treatment and care services for co-morbidities to people who do not have dementia’. There is associated NICE guidelines on multi morbidity 88 and older people with social care needs and multiple long-term conditions 89.
The use of care plans is recognised by NICE as a method of empowering patients to maintain their own independence following a diagnosis and is particularly relevant in Richmond, given that there is large variation in meeting care planning QOF targets; with performance of GP practices ranging from 66.7% to over 90%. Care plans should be drawn up and reviewed annually in face-to-face meetings with GP’s and should consist of the following core “D.E.M.E.N.T.I.A” components 90:
The NICE guidance on Dementia also addresses the transition from hospital to community settings (be it at home, or a care home setting) for adults with social care needs, which include the quality-of-care people should expect when they are admitted and discharged from hospital. This includes involving people in their own care planning.
An example of good practice within the hospital setting is having a multidisciplinary team that links directly with community services, to avoid unnecessary admissions. This drives a ‘home first’ approach, based on recognising that patients, being in their familiar environment whenever possible, optimises patient recovery and delivers better outcomes. One example of this is the ‘therapy at the front door’ initiative, which is a tactic that brings therapists into Accident and Emergency. Senior therapists identify and assess patients with frailty, who can then be discharged on the same day or may only require a short admission. By carrying out a risk assessment, they can immediately arrange rapid support to keep the patient safely at home.
Adult social care is provided in three main settings: residential care homes, nursing care homes and in the community. Adult social care helps people with dementia to feel supported to live their life as they want to. To ensure good practice, NICE produces quality standard on dementia which states that people with dementia should be given the opportunity to discuss any advance care planning at diagnosis and at each health and social care review including social care. Further quality standards are given on measuring people’s experience of using adult social care services 91. It is recommended as good practice to ensure that people are provided with necessary support to enable their active involvement in decisions about them in relation to their care and support.
Non-pharmacological techniques, such as cognitive stimulation therapy (CST) and cognitive behavioural therapy (CBT) are also offered to dementia patients. CST is recommended by NICE for mild to moderate dementia whereas CBT is often used for those who are also experiencing depression and anxiety.
The mainstay of treatment for dementia is improving quality of life and maintaining independence for as long as possible. For some forms of dementia, pharmacological (medication) is available in the early stages. A range of pharmacological interventions have been linked to support treatment and prevention of cognitive and behavioural conditions related to dementia 92. Dementia treatment options remain limited, with known dementia treatments diminishing in efficacy after the first few years.
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 (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 93.
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” 94.
Both the LGA and The Alzheimer’s Society have also published criteria and guidance on what should constitute a Dementia Friendly Community or Dementia Friendly Organisation 95 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 96.
Source: The Kings Fund ‘Is your care home Dementia friendly?’: EHE Environmental Assessment Tool Domains. 2020 (redesigned)
Championing the dementia cause is needed across a range of settings. Skilling up staff through dementia awareness training on the signs and symptoms of dementia can contribute to staff becoming more responsive to dementia needs, lead them to a better understanding of the issues related to the disease and championing the dementia agenda.
Research shows that people with dementia express is the need to stay connected to their families, friends and communities and be able to engage in activities that they enjoy. Unfortunately, some community groups find it difficult to accommodate people with dementia.
The National Dementia Strategy promotes the establishment and maintenance of local peer support networks for people with dementia and their carers. These types of initiatives 97 are also supported by the Prime Minster challenge37. Furthermore, the Care Act 2014 98 stipulates that improvements are required in delivering early interventions from care and support systems to support individuals to retain or regain both their skills and confidence, and to prevent or delay deterioration wherever possible. Additionally, NICE guidance recommends people are signposted to support groups post-diagnosis and their carers have access to peer support opportunities. The Health Innovation Network produced a resource pack to bring together examples of good practice and evidence-based guidance on peer support, to help groups and organisations better support people with dementia in their communities.
There has been a great deal of promise in how assisted technology, ‘electronic’ or ‘intelligent’ assistive technology, may help address the individual, family and societal challenges presented by dementia, and to support people with dementia to live more independently and, ideally, with improved quality of life in a cost-effective way. The challenge is that there is no real evidence available that can confirm such claims and more robust evaluations helping to understand what works, for whom and how are needed as well as the impact of these technologies in the context of dementia 99 100.
Carers of people with dementia face additional challenges to ensure that their own physical and mental health needs are being recognised and met, both because of the demands of the caring role, but also because of difficulties with accessing support. It is essential that carers have good support to enable them to manage the stresses and demands of their caregiving. NICE guidelines recommend that services make provision for carers to be supported in their roles 101. Informal carers are particularly important, given the significant contribution they make to the people they care for but also to the community. Nevertheless, informal carers are also at risk of personal psychological and psychosocial distress, which must be monitored, identified, and managed promptly. Evidence of good practice in supporting carers include offering education and skills training to carers. Some carers may require their own care plans to address their needs too, which can include, but not be limited to, psychological therapies (e.g., CBT), peer-support groups, training courses and respite care.
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 102.
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 103, and during the last 2 to 3 days of life 104, 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.
On a national level, the Dementia Attitudes Survey carried out by Ipsos MORI for Alzheimer’s Society 105 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 106 also highlighted the importance of culturally sensitive messaging and support in future campaigns that should be informed by input from BAME communities.
Between July and September 2019, local focus groups and engagement sessions with residents living with dementia, carers, friends, and family provided additional insight into the lived experiences related to living with dementia. Residents voiced a need for more day centre resources and support to navigate the system. Importantly, many participants in the engagement sessions were not aware of care-plans and did not recall having constructed one with a healthcare professional. All felt that this would have been useful although no consensus was reached about who should take responsibility.
A recent HealthWatch report for Richmond reported on 75 experiences collected via community outreach from those with dementia, carers, family members as well as professionals who care for those with dementia (unpublished). GPs were reported to be sensitive and understanding towards individual needs, proving suitably reactive in providing urgent care when necessary. There were some reports of those with dementia experiencing difficulties or distress attending GP surgeries, either due to a lack of suitable transport or reluctance on the part of the patient. Delivering services such as the flu jab via community services (e.g., district nursing) could address this need.
Other issues identified in patient experiences included:
Feedback from Clinical Dementia Specialists (via HealthWatch Richmond) also highlighted several areas of unmet need including:
In January 2021, 1,145 people aged over 65 years on Richmond GP registers had a diagnosis of dementia, accounting for 3.6% of the total Richmond over 65 years population This figure climbs to 1,722 (5.48% of the over 65 years population) if estimates of those living with undiagnosed dementia are added.
The rate of mortality for people aged 65 years and over with dementia in Richmond, is 621 per 100,000 population. This is a significantly lower rate than that for London (775 per 100,000) and England (868 per 100,000). 237 Richmond residents with dementia died in 2017/18.
Early onset dementia demands particular attention, as services designed for those with older onset dementia are often unsuitable for people with young-onset dementia. Amongst those aged under 65 years on Richmond practice registers, dementia accounts for 2.3% of dementia cases in the borough. (n=35) 107.
Regarding recorded dementia diagnosis by ethnicity, the data may not be as accurate because many ethnicities have not been defined in reporting. The HNA indicates that South Asian, African, or Afro-Caribbean ethnic groups have higher rates of dementia than other ethnicities. This 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 Richmond given that although only 6% of the over 65 years population identify as Black, Asian and Mixed Ethnicity. This suggests a highly disproportionate representation of people from ethnic minorities amongst those with a diagnosis of dementia in Richmond. However, 90% of people with a diagnosis of dementia in the borough do not have their ethnicity recorded. Consequently, whilst these figures may rationalize further investigation, they should be interpreted with extreme caution. There are increasing indications that the prevalence of dementia and depression in Black African- Caribbean and South Asian UK populations are greater than the white UK population.
Although not related to Richmond specifically, research has indicated that there is parity of access to memory clinics between Caucasian and BME communities in London overall. Research has found that within 13,166 referrals to memory services across London, the percentage of people from Black, Asian, and Minority Ethnic groups was higher than would be expected, indicating that generally people from Black, Asian, Minority Ethnic groups are accessing memory services. Seventy-nine percent of memory services had high uptake among Black, Asian, and Minority Ethnic groups. When there were fewer referrals then expected, the largest difference in percentage for an individual ethnic group was 3.3%.
Referrals for the Memory Assessment Service (MAS) also records ethnicity when agreed or provided by the service user, but again, these figures should be interpreted with caution. The current MAS caseload in May 2020 reported 72.7% as White 23.3% as Asian, 3% as ‘other’ and 0.5% recorded not stated and 0.5% left the answer blank . As data on the borough ethnicity in based on 2011 figures, it is difficult to draw conclusions about any discrepancy between expected and actual referrals for the Black, Asian and Ethnic community to the MAS clinic, as this data would not be relevant to the existing dementia referrals in 2020. With a national census completed in early 2021, it would be advisable to align the upcoming census data with the current MAS caseload data when published.
Rather than being the primary reason for emergency admissions, dementia is most often a secondary or tertiary diagnosis in Richmond, emphasizing dementia’s relationship to comorbidities. There are dementia specialist nurses available in the Borough to support the recognition of mismanaged comorbidities. However, the dementia specialist practitioners will only engage with nursing homes if the GP has made the referral for the patient.
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 (the figure below).
Generally, dementia prevalence is higher in the southwest and north/central areas of the Borough, reflecting the higher proportion of the over 65 year old residents who live in those areas. Wards such as Hampton (19.6%), Hampton North (18.9%) and Teddington (17.2%) in the South West and Ham, Petersham and Richmond Riverside (17.3%) in the centre of the Borough all have relatively high prevalence rates of dementia. ASC usage data similarly shows that patients who access the service and have dementia are generally from the aforementioned areas of the Borough.
In 2016, 129 Richmond residents died, with dementia being considered the underlying cause of death. The four wards with the most residents from this cohort include Twickenham Riverside (18), Hampton (17), Whitton (15) and Barnes (10). 56% of these 129 people died in a care home (72), 35% died in hospital (46) and 9% died in a private residence (11). Most of these Richmond residents who died in West Middlesex Hospital (19) or Kingston Hospital (17).
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.
Having dementia does not mean that people cannot live independently, and Dementia UK estimates that 63.5% of people with late onset dementia live in their own home with variations in age. Local data from 2017/18 showed that 80% of ASC users with a documented dementia diagnosis lived in the community, a reduction from 89% from the previous year. 550 people receiving ASC services in Richmond in 2017/18, 44.4% had a diagnosis of dementia recorded. When including those not accessing ASC services, those with a diagnosis of dementia not recognised by the ASC team and those living with dementia who do not have a diagnosis, the figure is likely to be much larger.
Richmond has a lower proportion of care home beds per 100,000 people aged 65 years and over in South West London (2,800 per 100,000). There are 46 care homes in Richmond, 29 cater for those aged 65 years and older, totaling 845 care home beds for those aged over 65 years. PHE calculate that, for every 100 people with a registered diagnosis of dementia in Richmond, there are 41.5 care beds. This is less than the average ratio of beds available in London (51.3 per 100) and England (69.2 per 100).
Although few, the quality of care beds in Richmond are significantly higher (100% good or outstanding) than the average in London (51.3%) and England (69.2%). We also hear from local carers for people with dementia, who voice a need for more day centre capacity across the Borough.
Most people affected by dementia live in private accommodation. Many of those with mild dementia will live independently in this context. However, for people living in private accommodation who are not independent, their care will come from informal sources, formal home care provision and day-centre services. In Richmond, receiving formal home care is less than is provided on average regionally and nationally, proportional to population size.
At present, there are four centres which provide day care in the Borough. However, the data describes a deficit in the capacity of these services. In 2013/14, 48.1 per 100,000 population (n=220, adults received day care services in Richmond, significantly fewer than average in London and England (268.3 and 301.1 per 100,000 adults respectively).
Estimates based on expected dementia prevalence in these care settings suggests that Richmond residential homes and nursing homes have 89 and 11 residents respectively who are living with dementia, which is either unrecorded for ASC purposes, or undiagnosed. This highlights a need for improved completeness of data collection and improved access to diagnostic services in care homes in the Borough.
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 number of people with dementia living longer has resulted in a significantly higher likelihood that they will require care in acute hospitals.
The NICE Guideline on Dementia 108 includes managing non-cognitive symptoms of dementia such as agitation, aggression, distress, and psychosis. Antipsychotics (except for risperidone and haloperidol in some circumstances) are not routinely licensed in the UK for treating non-cognitive symptoms of dementia. NICE recommends discussing the benefits and harms with the person living with dementia and their family members or carers (as appropriate) before starting antipsychotics. NICE recommends that care providers should provide additional training and mentoring to staff who deliver care and support to people living with dementia including advice on interventions that reduce the need for antipsychotics and allow doses to be safely reduced.
In January 2020, the total dementia population registered for the Richmond area was 1459 (1424 over 65 years) with 120 of those on antipsychotic medication in the six weeks prior, although only 13 people had a diagnosis of psychosis. Data is now produced at a SWL CCG level and is not broken down to Richmond specific data for January 2021 and therefore caution must be made on the availability of data. Although this data cannot be used to directly compare different areas across London or across the country, it does seem to indicate a significantly low level of antipsychotic medication prescribing in January 2020, an indication for further investigation.
A 74% increase in the number of people aged over 65 years living with dementia is predicted in Richmond between 2018 and 2035 (the figure below), with an estimated 1,594 expected to require care home facilities.
Based on the estimated increase in dementia prevalence, it is thought that the cost of dementia care in Richmond in 2035 will be approximately £125.75 million based on 2012/13 prices, with the cost of social care accounting for £49m.
Undeniably, any unpaid caring can therefore have significant costs. Without appropriate support it can affect an unpaid carers emotional and physical health, have detrimental effects on their ability to work, and subsequent long-term finances. Unpaid carers can often be providing substantial levels of care, but carers have been hit particularly hard due to the COVID-19 pandemic. The present challenges include recognising the additional burden upon unpaid carers and to avoid carers neglecting their own health and wellbeing. On a national level, the 2011 Census and the more recent GP patient survey by NHS England have shown that carers were more likely than non-carers to have poor health before the COVID-19 pandemic.
Furthermore, both the Richmond Carers Needs Assessment and resident engagement sessions in 2019 with people with dementia and their carers have highlighted the local needs of unpaid carers. There is a need for clear guidance on what support is available, the need for carers to understand medical planning, psychological support for carers, and the need for more flexible carers respite. It was suggested by some that the impact on families should be included in care planning. Therefore, it is vital that accessing social care and social support services is key to supporting the well-being of unpaid carers looking after people living with dementia.
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 action to resolve this is included in the dementia HNA recommendations.
We currently do not have robust data on the actual number of dementia patients in Richmond with a disability. It is also difficult to be exact with the number of people with a learning disability both nationally and locally because there are a range of complex factors that underlie predictions in numbers of people.
Predicting future population trend on the impact of migration has not been considered. Whilst there is comprehensive data available for older people, several data sets are unclear or missing from current data. These sets include statistics on dementia in relation to gender reassignment, sexual orientation, religion, and marital status. The 2011 census did not have a specific question regarding sexual orientation. Although census data relating to Civil Partnerships shows that 665 people (0.35% of the population in the Borough) responded as being in a registered same sex civil partnership. 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 across 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.
There are 5 priority phases across the 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 Richmond.
There are many different exposures that can increase dementia risk. Consequently, dementia prevention can be considered as any activity which actively reduces these modifiable risks, whether it is explicitly designed with a focus on dementia or not. In terms of our local response, Richmond continues to provide NHS Health Checks which support recognition of the importance for identifying potential modifiable risk factors, in addition to screening for dementia itself. These are free to access for those between 40 -74 years old. For those service users aged 65-74 who have an NHS health Check, they are made aware of the signs and symptoms of dementia and can be signposted to local memory services if appropriate. A separate leaflet is given to these individuals to support the raising awareness of dementia and the services available for people who may be experiencing memory difficulties. It should be noted that the intention of this is to raise awareness only and is not about assessing individuals for memory difficulties at this stage. Awareness of how the risk factors that increase the development of CVD also increase the propensity for dementia are discussed. Service users are encouraged to make healthier lifestyle changes.
In addition to the health checks programme, the Public Health team has several interventions including delivery of dementia awareness and training to SSA staff, and they continue to use resources available within Making Every Contact Count work to increase frontline workforce awareness of dementia and the potential for prevention. Public Health also ensure that smoking cessation and diet improvement resources are widely available, reviewing new licensing applications to reduce alcohol-related risk, and provide advice on risk reduction activities, such as smoking cessation and diet improvement.
The Joint Dementia Strategy 2016 – 2021 additionally considered the Richmond Dementia Action Alliance as a critical vehicle to create a dementia-friendly community in the borough to enable those with dementia, and carers, to maintain and develop their involvement in, and contribution to, their community. Richmond’s Dementia Action Alliance (RDAA) was launched in March 2014 to help local businesses and organisations to become dementia friendly. In April 2017, the Alliance boasted almost 100 members including voluntary organisations and community centres, representation from the public sector, private companies, community interest groups, GP surgeries, hospitals, emergency services, and representation from the arts and heritage sector. This initiative has been recently reenergised for April 2021 and rebranded as Dementia Friendly Richmond.
Through the support of the original Richmond Dementia Action Alliance, the London Borough of Richmond upon Thames is officially recognised by the Alzheimer Society as part of the national Dementia Friendly Communities programme. They previously distributed the “Working to Become Dementia Friendly” logo to its members, to able them to publicise their commitment to creating a dementia friendly Borough.
The Community Dementia Practitioners at Hounslow and Richmond Community Healthcare NHS Trust (HRCH) have produced an accessible online and printable dementia service directory of services available across the dementia pathway, launched in 2020.
In Richmond, there are two memory assessment clinics serving different parts of the Borough, overseen by Consultant Psychiatrists; Teddington memory clinic at the Health and Social Care Centre 18 Queens Road, Teddington, and the Barnes Hospital South Worple Way, both provided by South West London and St Georges Mental Health Trust. This is a specialist diagnostic service for people who are experiencing signs of memory and cognitive impairment. The service provides expertise around dementia investigations, diagnosis, and differential diagnoses. The Memory Assessment Service provides preliminary advice and support for people post diagnosis and refer on to other services if appropriate. Anyone who uses the services is provided with an assessment of their mental health needs and a plan of the care and support they will receive. They will also have one named person who co-ordinates their care and support. This person will be called either a named professional or a care coordinator. If there are complex mental health issues involved, the case is allocated to the older person team where a care coordinator is allocated.
Following a diagnosis of dementia, a person with dementia should have a care plan. This should set out what sort of care the person and people who care for the individual will need. The care plan should include how the person can continue doing the things that are important to them for as long as possible. They will be given information about services that can help and how to access them. Any health conditions the person may will be regularly reviewed. The name of a health or social care person who coordinate the different kinds of support the person may need and this could be from your GP, Care manger, Specialist Dementia nurses, or a care coordinator from the older person service. A person’s care plan should be reviewed at least once a year by the professional who have the most contact with the person and the carer and shared with the GP who holds the responsibility for carrying out a yearly review and updating the care plan. A yearly physical health checks should also be carried out at this review.
The main purpose of memory assessment services (MAS) is to diagnose dementia and initiate treatment. If they are to do this effectively, they need to ensure that people with cognitive problems but without dementia get quick access to the interventions they need. Some patients present with memory complains due to a range of non-dementia causes. The London Dementia Clinical Network have produced a guidance document aimed at commissioners and clinicians within memory services and primary care to ensure that other conditions that are not dementia, such as mild cognitive impairment (MCI) or Functional cognitive disorder (FCD).
The Dementia Practitioner Service provided by HRCH and the Barnes Team, have an overarching aim to case find and deliver highly responsive and personalised emotional and practical support to people with diagnosis of dementia and carers. The objectives of the service are to contribute to the whole multidisciplinary approach to locality-based care delivery. They provide home visits to assess and discuss needs, liaison with other professionals and refer on to appropriate services if required and they promote wellbeing by helping patients and carers make plans and provide crisis planning to avoid/prevent hospital admission.
Services for carers currently are commissioned by Richmond Council and/or Richmond Clinical Commissioning Group through the Better Care Fund include the Richmond Carers Hub Service (a service provides universal and specialist information and advice services, informal individual and group emotional support, a caring café for carers and people they care for living with dementia) and the shared lives carer scheme, which helps carers of people with dementia by providing a Shared Lives Carer to look after the person.
The Alzheimer’s Society has in place a peer support service delivered by to support young people with dementia and carers in community, acute settings, and care homes.
Enabling A Fulfilling Life with Dementia Richmond Council currently offer a range of day opportunities for older people and people with physical and sensory disabilities. The existing Richmond day services widely offer:
Most of the Palliative Care in Richmond is provided through the community provider Hounslow and Richmond Healthcare Trust (HRCH). The hospice provision is provided by Princess Alice Hospice, serviced by 6 palliative clinical nurse specialists, and supported by a small team of carers for emergency situations to provide advice and support symptom control. 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. 93% of those who have a CMC record in Richmond have their preferences related to death recorded (i.e., preferred place of death).
The two tables below display an overview of other local services related to dementia risk reduction and support for Richmond residents. As of the time of writing, some of these services may be halted due to COVID-19 restrictions.
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 Richmond are outlined in the table below. The improvements with regards to patients already with dementia and for carers of people with dementia were also assessed against NICE guideline 97 109 and framed around the principles of person-centred care in the context of dementia, as described in the second table below.
In addition, the impact that COVID-19 has had on people with dementia and their carers cannot be ignored. Health and social care professionals are seeing more challenges for unpaid carers due to the lack of respite care and a reduction in care packages. This reduction has created added stress on unpaid carers who may be struggling themselves, especially with how to deal with new behaviours they are seeing, such as when their loved one goes ‘wandering’ in social distancing times. In addition to physical protection from the virus infection, the psychosocial needs for client and unpaid carers which have increased during the COVID-19 pandemic remains fully unknown, and therefore, unmet.
In Richmond, the existing Joint Dementia Strategy (2015-2021) and the Richmond Dementia Pathway Leadership Group (DPLG), established in November 2019 to better understand dementia care and support by framing all actions, showcases the breadth of work on dementia across Richmond, and is in place to ensure it delivers the overall dementia offer effectively. This collaborative approach to improving outcomes has shown how enacting a comprehensive dementia prevention service, and care support offer for residents remains a key focus for London Borough of Richmond.
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 Richmond 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 Richmond 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 110.
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 111.
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 Richmond 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.
End of Life Care is defined by Marie Curie specifically as the “treatment, care and support for people nearing the end of their life” 112, 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:
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:
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.
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 114. 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 115 and QS144 Care of Dying Adults in the Last Days of Life 116 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 117, 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 118, 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:
At the start of 2019, The NHS Long Term Plan 120 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).
There is currently no Richmond 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 caused by the pandemic. There is an 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.
In the next 20 years the numbers and proportion of older people within the population is predicted to increase substantially, from 32,403 (16.2% of population in 2021) to 45,784 (22.0% of population in 2041) . 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 affect those services supporting the frailer and older population as they approach the end of their lives. The increasing population of older people is likely to increase the prevalence of dementia and multimorbidity, potentially straining the local health and social care economy. Richmond has relatively high levels of recurrent emergency hospital admissions for patients in the last 90 days of life.
End of Life Care 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 by 1% would lead to savings of approximately £65,000 per year , saving money and also supporting people to ‘die better’.
In 2019, 1,231 people died in Richmond, of these 599 males and 632 females with 68.3% aged 75 or older at the time of their death. Due to the projected increases in the older people in Richmond, the number of people reaching the end of life each year will also be increasing.
For more details about the Richmond demography and life expectancy, please see the People chapter.
Social factors can affect a person’s wishes as well as their individual experiences (and that of their family and friends) at the end of their life, such as their ethnic background, language barriers and religion. These factors can impact on the quality and provision of services and as Richmond has a diverse population with hundreds of languages and cultures, need to be included in local planning and policy for 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” 121.
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) 122:
As a result of the above, the CQC requested that commissioners to improve access to End-of-Life Care 123, 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.
The local all ages all causes standardised mortality rate has been decreasing in Richmond since 2001. It remains lower than the London average at 721.3 people per 100,000 population in 2019, compared to 809.1 per 100,000 in London as a whole 124.
The major causes of death in Richmond are listed in the mortality sub-section.
The location of death for Richmond residents varies significantly compared to England’s averages. A greater proportion of residents in Richmond died at home compared to the English average (26.6% compared to 24.4%), It is important to consider the impact of place of death has on someone’s experience towards the end of their life, and is important to recognise when planning, commissioning and delivering services 125.
Percentage of deaths that occur in care homes: In 2022, Richmond’s rate was 28.7% (n=170), which was the 5th highest in London, 17.0% lower than the England average and 20.5% higher than the London average. The latest Borough figure for 2022 was also 7.8% higher than in 2013, in comparison with 5.8% decrease in England’s rate in the equivalent time period.
Percentage of deaths that occur at home: In 2022, Richmond’s rate was 26.9% (n=159), which was the 15th highest in London, 19.3% higher than the England average and 4.2% higher than the London average. The latest Borough figure for 2022 was also 38.6% higher than in 2013, in comparison with 52.5% increase in England’s rate in the equivalent time period.
Despite the rising trend in percentage of people dying in their usual residence (either their home or their care home), still more Richmond’s residents die in hospitals.
However, the proportion of deaths at the usual residence (home or care home) is higher than the percentage of deaths in hospitals among people aged 85 and over (the figure below).
Patients often find emergency hospital admissions to be disruptive and distressing, this is similar for their friends and family. NICE recommends the first stage of advanced care planning to identify options within the community.
The ageing population and the rise of chronic illness amongst the local and general population are likely to increase the need for end-of-life care.
A recent study looked at the mortality statistics for England and Wales from 2006–2014. It suggests that if the age and sex specific mortality rates remained the same as in 2011, the number of people requiring End of Life Care nationally would grow by 25% by 2040, and with the upward trend observed nationally between 2006–2014 this could be in excess of 40% (42.4% by 2040) 126.
Permanent admissions to residential and nursing care homes per 100,000 aged 65+: In 2021/22, Richmond’s rate was 372.1 per 100,000 (n=119), which was the 15th lowest in London, 30.9% lower than the England average and 7.3% lower than the London average. The latest Borough figure for 2021/22 was also 40.7% lower than in 2006/07, in comparison with 32.6% decrease in England’s rate in the equivalent time period.
The shift in social care policy towards providing care at home, rather than in residential care, may explain some of the fall in bed availability. The number of people admitted to residential and nursing care homes has declined in recent years. However, there is no reliable data on the number of people receiving care at home, so it is difficult to measure changes in service provision.
The decrease in bed availability across London and England could also indicate a significant fall in social care provision for older people, which comes at a time of expected growth in demand due to the ageing population. A downward trend in the registration of new care homes, combined with an upward trend in closures, has resulted in a net reduction of the number of beds available 127.
Care home beds per 100 people 75+: In 2021, Richmond’s rate was 6.5 per 100 (n=944), which was the 15th lowest in London, 31.1% lower than the England average and 8.3% lower than the London average. The latest Borough figure for 2021 was also 21.5% lower than in 2011, in comparison with 12.4% decrease in England’s rate in the equivalent time period.
Nursing home beds per 100 people 75+: In 2021, Richmond’s rate was 3.3 per 100 (n=474), which was the 9th lowest in London, 29.2% lower than the England average and 21.4% lower than the London average. The latest Borough figure for 2021 was also 25.7% lower than in 2011, in comparison with 7.4% decrease in England’s rate in the equivalent time period.
In terms of national data on the experiences of people who are close to death, this information can be difficult to gather, particularly when related to symptoms at this time for many including cognitive impairment and fatigue. In addition, gathering data from the patient’s friends and family just before their death or when they are grieving may be even more difficult due to the sensitivities, emotional wellbeing, practical steps they need to put in place regarding the Will, last wishes and funeral arrangements. Local information is also limited regarding the absence of community feedback to HealthWatch, the CCG and the voluntary sector. However, there are a few miscellaneous points of feedback from which to form recommendations for planning, commissioning and providing End of Life Care.
75% of the country’s population would prefer to die at home, whilst only a third actually do . The preference for death at home is likely to be underestimated, as not all patients may have their wishes recorded on health and care data systems.
Ensuring that individuals die in their preferred place of death is a key national aim for good End of Life Care. Comparatively, data from the bereaved family and friends, suggests that they felt hospital was the right place for them to die, with 74% of respondents stating this compared to 3% recognising their relative wanted to die in hospital . This concept is little understood; perhaps individuals are less aware of the practicalities of dying at home, perhaps family and friends are anxious about how they might manage this and feel hospital is more appropriate and supportive.
There is a digital care planning service in place called Coordinate My Care (CMC), which operates across London. It facilitates electronic sharing of urgent care plans between healthcare providers, including the London Ambulance Service (LAS), allowing for the coordination of patient care and improving care outcomes. This service enables sharing of core information, such as preferred place of death, cardiopulmonary resuscitation status, advice regarding ceilings of care and other patient preferences. The gap in awareness of patient preference could increase the proportion of people dying in hospital rather than at home.
A national survey showed that care for Black, Asian and Minority Ethnic groups in their last 3-months of life, compared to White British people, were:
National research indicates that the barriers to accessing care include misunderstandings about what End of Life Care is, a general mistrust of health and care staff (which may already be present within sub-communities) and a lack of cultural awareness by providers 128.
Some of these misunderstandings about care creates a perceived fear about meeting the needs of the patient, especially those with difficulties in communicating in English. The presumption that services cannot meet the cultural needs can often result in self-discharge or in some cases return to the country of origin.
The lack of language interpreters puts friends and family under pressure to translate how the patients are feeling, which poses additional issues around confidentiality and being able to explicitly name their wishes. Expressing the desire for additional support could be an issue in some cultures where a patient may not feel comfortable expressing this to their family member to translate for them. Experiences of spiritual and bereavement services are also mixed, with some families reporting lack of access to appropriate chaplaincy and others reporting no bereavement resources available in their language.
Research has suggested that End of Life Care services are often not suitable for people who are homeless. For those who live in hostels, the environment is often inappropriate for providing such services in cramped, chaotic, noisy, less equipped to support the specific needs. Information sharing can become problematic as hostel staff may not be recognised as next of kin and they may require their own emotional support. People who are homeless may have a greater number of co-morbidities or dual-diagnosis (such as the presence of a substance use and mental health need concurrently), presenting a greater level of specialist need for which specialist services may not exist, and which may exclude the person from meeting the criteria for a residential care home. In addition, they could be younger than the typical age for referral into a residential care home 129.
Quality care for people with dementia can be affected due to the lack of early conversations about planning their end of life care, before a patient deteriorates and therefore has reduced capacity to express their wishes 130.
People from the LGBTQ+ community experience a higher incidence of life-limiting illness than the general population, alongside higher rates of physical and mental ill health and risk behaviours 131. Some of these challenges are considered in more detail in the sexual health section of this JSNA.
Patients from the LGTBQ+ community have expressed their identity as a barrier to accessing End of Life Care services, and often report mixed previous experiences of health and social care, with some feeling that their preferences were assumed based on their sexual orientation, and others feeling excluded in communal establishments, which may be in part due to more prejudicial views of their peers.
Additionally, in some circumstances, the partners of homosexual patients were not as included as the heterosexual partners 132. As a result, patients from these communities may experience fear of disclosing their sexual orientation, and national studies show that many care home residents choose not to reveal this with staff.
People with a learning disability have a lower life expectancy and are more likely to die prematurely or avoidably than the general population. This, coupled with the recognised challenge of identification of deterioration or dying in this population, often leads to late identification with limited opportunity to explore wishes and preferences and to involve family 133.
The CQC report on the experience of those with learning disabilities at the end of life identified the of lack of awareness, communication challenges, and the importance of coordination of care as core themes for this population. Poor understanding of learning disabilities could result in misattribution of cause of symptoms and late diagnosis of illness, impacting on the success of treatment. Additionally, early and continuous involvement of staff who knew the individual, and use of a care coordinator, were thought to be of value in ensuring high quality and coordinated care. Therefore, training and support for early identification of those approaching the end of life in this population was recommended as a focus for commissioners and providers 134.
Mental health is a recognised cause of premature death, in part because people with mental health conditions may have physical needs overlooked and symptoms may be misattributed. Mental health disorders can reduce individual’s motivation and ability to engage in health lifestyle behaviours. As a result, people with serious mental illnesses (excluding dementia) die on average 20 years earlier than the rest of the population. As with those who are homeless or have a learning disability, this early onset of end of life care needs is often missed, leading to late identification resulting in patients not having enough time to plan their End of Life Care appropriately 135.
In Richmond, an estimated 20,430 adults have a common mental health problem, which equates to 13.2% adults. There are overlaps of mental health problems with other vulnerability factors such as sexual orientation, deprivation, and homelessness. Mental health conditions also disproportionately affect people from Black, Asian and Minority Ethnic groups and they are more than twice as likely to experience psychosis and commit suicide.
While child deaths are relatively less common, approximately 2,500 children die annually, as a result of a life-limiting or life-threatening condition. There are an estimated to 49,000 children and young people under 18 years old living with a life-limiting or life-threatening condition in the UK. These numbers are expected to rise due to medical advances in testing, screening and recognition of signs and symptoms, and increasing life expectancy. Children and young people with life-limiting conditions are more likely to need palliative care, that is specialist services long before their death 136.
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 137. 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.
Source: Ambitions for Palliative & End of Life Care ’A national framework for local action 2015–2020
The figure above 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.
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Dementia: applying All Our Health. GOV.UK. URL: https://www.gov.uk/government/publications/Dementia-applying-all-our-health/Dementia-applying-all-our-health↩︎
PHE Dementia Co-morbidities in patient’s data briefing, 2019↩︎
Department of Health % Social Care (2013) Dementia A state of the nation report on Dementia care and support in England. Available at Dementia - A state of the nation report on Dementia care and support in England (publishing.service.gov.uk↩︎
Worst Hit: Dementia During Coronavirus (September 2020↩︎
Behind Closed Doors, Carers UK (October 2020↩︎
Department of Health & Social Care (2015) Prime Minister’s challenge on Dementia 2020↩︎
Prime Minister’s challenge on Dementia.↩︎
The National Dementia Strategy, ‘Living Well with Dementia’ (Department of Health, 2009)↩︎
NHS England, Five Year Forward View, October 2014↩︎
NHS England, New Models of Care Programme, January 2015↩︎
NHS England Next Steps on the NHS Five Year Forward View, March 2017↩︎
Department for Health Dementia (2013). A state of the nation report on Dementia care and support in England↩︎
Care Quality Commission, Cracks in the Pathway (2014)↩︎
NICE Dementia (QS184). Published June 2019.↩︎
Dementia: assessment, management and support for people living with Dementia and their carers NICE guideline Published: 20 June 2018. URL: www.nice.org.uk/guidance/ng97↩︎
Dementia, disability and frailty in later life–mid-life approaches to delay or prevent onset NICE guideline (NG16). URL: https://www.nice.org.uk/guidance/ng16 ↩︎
NHS Long Term Plan.↩︎
Knapp M, Comas-Herrera A, Wittenberg R, Hu B, King D, Rehill A, et al. Scenarios of Dementia care: what are the impacts on cost and quality of life? URL: http://www.pssru.ac.uk/ ↩︎
Dementia Statistics Hub.↩︎
PHE (2016) Public Health England Guidance: Health matters: midlife approaches to reduce Dementia risk, 2016↩︎
Based on projected population over 65as of 2020 in Richmond, GLA.↩︎
Alzheimer’s Society. Risk factors for Dementia - Factsheet 450LP, 2016.↩︎
PHE British Social Attitudes to Dementia Findings from the 2015 British Social Attitudes survey↩︎
URL: https://www.alzheimers.org.uk/about-Dementia/types-Dementia/learning-disabilities-Dementia?documentID=103 ↩︎
Baumgart M., Snyder H. M., Carrillo M. C., Fazio S., Kim H., Johns H. (2015). Summary of the evidence on modifiable risk factors for cognitive decline and Dementia: a population-based perspective. Alzheimer’s Dement. 11, 718–726.↩︎
Farrell, L et all (2014). The socioeconomic gradient in physical inactivity: Evidence from one million adults in England, in Social Science & Medicine Volume 123, December 2014, Pages 55-63↩︎
PHE Strategy 2020-25, Public Health England (2019)↩︎
Lewis F, Schaffer S, Sussex J, O’Neill P, Cockcroft L. The Trajectory of Dementia in the UK–making a Difference. 2014↩︎
WHO Risk reduction of cognitive decline and Dementia: WHO guidelines, 2019↩︎
DH (2011) Living well with Dementia: A National Dementia Strategy Good Practice Compendium - an assets approach↩︎
From diagnosis to end of life: The lived experiences of Dementia care and support.↩︎
Dementia, disability, and frailty in later life–mid-life approaches to delay or prevent onset. NICE guideline (NG16). URL: https://www.nice.org.uk/guidance/ng16 ↩︎
Alzheimer’s Society. (2018) Tacking Loneliness in People Living with Dementia.↩︎
Livingston G, Sommerlad A, Orgeta V, Costafreda SG, Huntley J, Ames D, et al. Dementia prevention, intervention, and care. The Lancet 2017;390(10113):2673–734.↩︎
Ray, S and Davidson, S (2014) Dementia and cognitive decline. A review of the evidence. AGE UK Research↩︎
Department of Health and Social Care. After diagnosis of Dementia: what to expect from health and care services↩︎
Multimorbidity: clinical assessment and management. NICE guideline [NG56] Published date: 21 September 2016↩︎
Older people with social care needs and multiple long-term conditions. NICE guideline (NG22) Published date: 04 November 2015↩︎
NHS England. Dementia: Good Care Planning. 2017↩︎
Dementia Quality standard [QS184] Published date: 28 June 2019↩︎
Managing medicines for adults receiving social care in the community. NICE guideline (NG67) Published date: 30 March 2017↩︎
URL: www.gov.uk/government/news/new-Dementia-campaign-launches-as-research-reveals-the-true-cost-to-business-of-Dementia↩︎
Building Dementia Friendly Communities–a Priority for Everyone. Alzheimer’s Society 2013.↩︎
Dementia-friendly communities. Alzheimer’s Society.↩︎
Is your care home Dementia friendly? EHE Environmental Assessment Tool.↩︎
Dementia Cafes - Halley, E., Boulton, R., McFadzean, D., & Moriarty, J. (2005). The Poppy Cafe: A multiagency approach to developing an Alzheimer cafe. Dementia: The International Journal of Social Research and Practice, 4(4), 592-594↩︎
URL: http://www.legislation.gov.uk/ukpga/2014/23/contents/enacted ↩︎
Ienca M, Fabrice J, Elger B, et al. (2017). Intelligent assistive technology for Alzheimer’s disease and other Dementias: a systematic review. Journal of Alzheimer’s Disease 56(4) 1301-1340. [PubMed abstract]↩︎
Fleming, R., & Sum, S. (2014). Empirical studies on the effectiveness of assistive technology in the care of people with Dementia: a systematic review. Journal of Assistive Technologies, 8(1), 14-34.↩︎
Supporting adult carers. NICE guideline (NG150) Published date: 22 January 2020↩︎
My life until the end. Dying well with Dementia, Alzheimer’s Society, 2012. URL: https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/my_life_until_the_end_dying_well_with_dementia.pdf ↩︎
End of life care for adults. Quality standard [QS13] Published date: 28 November 2011 Last updated: 07 March 2017↩︎
Care of dying adults in the last days of life. Quality standard [QS144] Published date: 02 March 2017↩︎
Alzheimer’s’ Society Dementia Attitudes Monitor Wave 1, 2018↩︎
Public attitudes towards Dementia, Alzheimer’s Research UK and Dementia Statistics Hub. URL: https://www.Dementiastatistics.org/attitudes/ ↩︎
Please note this does not include people diagnosed with YOD who are now aged 65 and over↩︎
Dementia: assessment, management and support for people living with Dementia and their carers. Guidance. NICE. URL: https://www.nice.org.uk/guidance/ng97 ↩︎
Dementia: assessment, management and support for people living with dementia and their carers NICE guideline Published: 20 June 2018↩︎
Public Health England (2019) Atlas of Variation for Palliative and End of Life Care. URL: http://tools.england.nhs.uk/images/EOLCatlas/atlas.html ↩︎
College of Policing Limited (2019) [Internet]. Practice Advice: Dealing with sudden unexpected death. URL: https://www.gov.uk/government/publications/sudden-unexpected-death-medical-investigation/practice-advice-dealing-with-sudden-unexpected-death-accessiblef ↩︎
Marie Curie (2018) [Internet]. What are palliative care and end of life care? URL: https://www.mariecurie.org.uk/help/support/diagnosed/recent-diagnosis/palliative-care-end-of-life-care ↩︎
General Medical Council (GMC) (2010) Treatment and Care towards the end of life: good practice in decision-making. URL: https://www.gmc-uk.org/-/media/documents/treatment-and-care-towards-the-end-of-life---english-1015_pdf-48902105.pdf?la=en&hash=41EF651C76FDBEC141FB674C08261661BDEFD004 ↩︎
Department of Health (DoH) (2008). End of Life Care Strategy: Promoting High Quality Care for All Adults at End of Life. URL: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/136431/End_of_life_strategy.pdf ↩︎
NICE (2011) End of Life Care for Adults Quality Standard QS13. URL: https://www.nice.org.uk/guidance/qs13/resources/end-of-life-care-for-adults-pdf-2098483631557 ↩︎
NICE (2017) Care of Dying Adults in the Last Days of LIFE Quality Standard QS144. URL: https://www.nice.org.uk/guidance/QS144 ↩︎
The Choice in End-of-Life Care Programme Board (2015) [Internet]. What’s Important to Me. A Review of Choice in End-of-Life Care. URL: https://assets.publishing.service.gov.uk/media/5a80025240f0b62305b889ec/CHOICE_REVIEW_FINAL_for_web.pdf ↩︎
NHS England (undated) End of Life Care. URL: https://www.england.nhs.uk/eolc/ ↩︎
NHS England. Personalised End of Life Care. URL: https://www.england.nhs.uk/eolc/personalised-care/ ↩︎
NHS England (2019). The NHS Long Term Plan. URL: https://www.longtermplan.nhs.uk/publication/nhs-long-term-plan/ ↩︎
Personal Social Services Research Unit London School of Economics and Political Science (2015) Equity in the Provision of Palliative Care in the UK: Review of Evidence. URL: https://www.mariecurie.org.uk/globalassets/media/documents/policy/campaigns/equity-palliative-care-uk-report-full-lse.pdf ↩︎
Equality Act (2010). URL: https://www.legislation.gov.uk/ukpga/2010/15/contents ↩︎
The Care Quality Commission (2016) A different ending: End of Life Care Review. URL: https://www.cqc.org.uk/publications/themed-work/different-ending-end-life-care-review ↩︎
NOMIS. Mortality statistics. 2019↩︎
Etkind, Bone et al (2017). ’How many people will need palliative care in 2040? Past trends, future projections, and implications for services. BMC Medicine 2017. 15:102. URL: https://doi.org/10.1186/s12916-017-0860-2 ↩︎
Nuffield Trust: Care home bed availability. 2021. URL: https://www.nuffieldtrust.org.uk/resource/care-home-bed-availability ↩︎
Dixon J, King D, Matosevic T, Clark M and Knapp M (2015) Equity in Palliative Care in the UK, PSSRU, London: London School of Economics/Marie Curie↩︎
St Mungo’s and Marie Curie Palliative Care Research Unit at University College London (2011) Supporting homeless people with advanced liver disease approaching the end of life, May↩︎
People with Dementia. A different ending: Addressing Inequalities in End of Life Care. Care Quality Commission 2017 ↩︎
Almack K, Moss B and Smith T, Research and policy about end of life care for LGBT people: identifying implications for social work services, in Fish J and Karban K, eds, Social Work and Lesbian, Gay, Bisexual and Trans Health Inequalities: International Perspectives. Bristol: Policy Press, 2015, p173-186.↩︎
Care Quality Commission (2017) Lesbian, Bisexual and Transgender People. A different ending: Addressing Inequalities in End of Life Care.↩︎
Heslop P, Blair P, Fleming P, Hoghton M, Marriott A and Russ L, Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD), Final report, 2013↩︎
People with Disabilities. A different ending: Addressing Inequalities in End of Life Care. Care Quality Commission 2017.↩︎
How many children and young people are affected by a life-limiting or life-threatening condition? Together for Short Lives.↩︎
The National Palliative and End of Life Care Partnership. Ambitions for Palliative and End of Life Care: A national framework for local action 2015-2020.↩︎
Up to: Joint Strategic Needs Assessment (JSNA)
Updated: 08 July 2024
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