A long-term condition is conceptualized as a condition that cannot presently be cured but can be managed by medication and other therapies (Department of Health, 2012). The management of long-term conditions can be a challenging task for the NHS workforce. In UK the prevalence of long-term conditions is expected to go up due to the growing aging population. Between 2011 and 2018 the cost strain on healthcare system rising from the management of long-term conditions is presumably add £5 billion to the annual cost. It is estimated that £7 out of every £10 spent on health and social care in England is associated with the treatment and management of the population with one or more long-term conditions. Around 15 million people are currently estimated to be living with one or more long-term condition in England alone and this is expected to rise to around 18 million by 2025 (Department of Health, 2014). The essay aims to evaluate a community profile of The Royal Borough of Kensington and Chelsea and focus on the long-term condition of dementia. A brief account of the condition will be discussed followed by prevalence, care pathways, the impact on carers, local policies and identified gaps in the services will be discussed.
The Royal Borough of Kensington and Chelsea is located in inner London and is one of the smallest boroughs. The royal borough is ranked one of the richest towns with an astonishingly high mean income of £116,000 yearly, much higher than that of some parts of London (London’s Poverty Profile, 2017). The average cost of a property is £2 million. However, there is also evidence of economic and social inequality, particularly in the north of the borough, where the Grenfell Tower was located. The wards in this part of the borough have increased rates of low-income, children living in poverty and homeless people compared to the London’s average. There is evidence of health inequalities, such as life expectancy is 16 years less for men living in the most deprived compared to the least deprived wards of the borough. It is said that the affected households are mostly comprised of recent migrants and refugees. Young people whose parents have never been employed are 38 times more likely to die in a fire compared to those whose parents are professionals. The devastating incident in Grenfell Tower clearly provides evidence of the shocking statistics of deprivation and mortality in some areas of the royal borough. Deaths caused by injuries are strongly linked to high levels of deprivation in particular to deaths caused by fires.
An estimated one-fifth of children in the royal borough under the age of 16 are known to be living in poverty (HM Revenue), compared to 37% of all other children in the rest of London. According to the Public Health Indicator (2014), the borough has the third highest number of deaths in London attributable to air pollution. One of the key finding of London’s Poverty Profile (2017) is that the royal borough council eventually houses 72% of homeless people in temporary accommodation outside of the borough due to housing issues. On a more positive note, it was also found that 70% of disadvantaged children going to state-funded schools attain good grades at GCSE in Maths and English. The Royal Borough of Kensington & Chelsea ranks seventh below Westminster ranked first on the Social Mobility Index (The Social Mobility and Child Poverty Commission, 2016). This means that a child from a disadvantaged background growing up in the borough has better chances of socio-economic advancement. It is noted that a person’s mental health and wellbeing risk factors are shaped by social, economic and physical environments such as family, history, debt, unemployment, isolation, and housing. The World Health Organisation (2012) categories these risk factors into three groups, personal, social and economical factors affecting mental wellbeing. In the royal borough, the proportion of people with severe and long-term mental health problems known to the GP in 2015/16 is the highest in London (JSNA, 2016). However, in 2014/15 the figures were slightly lower, 21% of residents aged from 16-74 were known to have a common mental health disorder.
Dementia is an increasingly common long-term mental health condition affecting the older population. According to the World Health Organisation (1992), dementia is, “a syndrome due to disease of the brain, usually of a chronic or progressive nature, in which there is disturbance of multiple higher cortical functions, including memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgement. Consciousness is not clouded. The impairments of cognitive function are commonly accompanied and occasionally preceded, by deterioration in emotional control, social behaviour, or motivation. This syndrome occurs in Alzheimer’s disease, in cerebrovascular disease, and in other conditions primarily or secondarily affecting the brain.”
The presentation of symptoms can be grouped into different categorises. Cognitive dysfunction is associated with memory loss, language, attention, thinking, orientation, calculation, and problem-solving. Psychiatric and behavioural problems are characterised by personality changes, emotional control, social behaviour, depression, agitation, hallucinations, and delusions. People with dementia can face challenges with a range of daily activities such as driving, shopping, eating, and dressing (NICE, 2016). The most common type of dementia is Alzheimer’s disease followed by vascular dementia. Dementia with Lewy bodies (DLB) and Frontotemporal are however less common. The condition of dementia is also now affecting young people and it is called early onset dementia, it affects people from the age of 65 (Harvey and Rossor, 1995). Early onset dementia is becoming more common with a significant social problem (Sampson, Warren, and Rossor, 2004) and the proportion of people diagnosed with the condition is rising.
According to the Alzheimer’s Society (2009), there are currently 800,000 older people living with dementia in England. This is costing the UK’s economy between £15 and £23 billion annually. The figure is expected to rise to 1 billion by 2021, due to the changing demographics of the population in the UK, i.e, the increasing number of elderly people in proportion to the rest of the population. The society now faced by the most challenging and complex issues of providing good quality care and support for the increasing dementia population. According to JSNA (2015), the cases of people with dementia in the borough are expected to increase by as much as 40% in the next 10 years due to the aging of the baby boom population and enhanced life expectancy. It is estimated that there will be a relatively large increase in older people aged 85 and over in the next 15 years, 95% for Kensington and Chelsea. The figures are higher compared to the nearby boroughs, 65% for Hammersmith and Fulham and 60% for Westminster (GLA Population Projections, 2015). In 2013, there were a recorded 388 new cases of dementia for Kensington and Chelsea, compared to 322 for Hammersmith and 486 for Westminster for the same period. The projections for new cases of dementia in 2023 are 524 for Kensington and Chelsea, 391 for Hammersmith and 597 for Westminster. Additionally, the projections for new cases estimated in 2033 are 718 for Kensington and Chelsea, 506 for Hammersmith and 760 for Westminster. The expected new cases are illustrated in the table below
New cases in 2013 New cases in 2023 New cases in 2033
Hammersmith 322 391 506
Kensington and Chelsea 388 524 718
Westminster 486 597 760
Part of the nurse’s role is to ensure that patients and their carers know steps to take and where to access advice and support right from the beginning. However, support may also be provided by a trained person from the statutory and voluntary sector acting as a companion for the course of the patient’s illness. Research evidence proves that in other BME communities there is limited knowledge of dementia and the services available (Moriarty, Sharif and Robinson, 2011). In the royal borough, there are established contacts with specific cultural community and voluntary groups to support BME people with dementia and their families. People from BME communities are more likely to isolate themselves from mainstream services and some perceive using these services as a source shame (Rauf, 2011). There has been a rise in the proportion of people with dementia from the BME communities in the royal borough
In the royal borough levels of diagnosing dementia have been low but currently improving through more awareness of the condition and referrals to memory clinics (JSNA, 2015). There is evidence that early diagnosis of dementia seems to enhance outcomes for individuals with the disease later on in life. The identified risk factor for dementia in the elderly population is living alone and there is around 61% in the borough. This is the highest proportion in the whole of London. Provision of care for the elderly living with dementia in the borough is among the lowest in England. Published rates of care home bed provision have identified a national rate of 114.1 beds per 1,000 aged 75+. Provision across the three boroughs is less than half of this at 45.5 per 1000, with Kensington & Chelsea having 46.6 per 1000. Surrounding boroughs also have lower provision of beds than the national average; 59.3 for Hammersmith & Fulham and 35.7 in Westminster (the lowest in England). A local audit of those identified as having dementia indicates that 60% are placed outside of their original borough of residence.
The general pathways of care for people with dementia start with a referral for a diagnosis in a memory clinic managed by mental health professionals. In the royal borough memory services are shared with the nearby borough of Westminster. However, the dementia care pathway is not as that simple. The emphasis and guiding principles of providing good quality care complicate the idea of having a care pathway as a unified approach. The dementia pathway developed by NICE (2016) begins with staff training applying principles of care and includes risk factors and prevention. The suggested pathway takes a more holistic approach that can be used by a health professional and it encourages post-diagnostic support that involves promoting choice, maintaining independence and supporting carers.
The royal borough’s plan on forming a new pathway is based on three themes namely, raising awareness and understanding, early diagnosis and support, and living well with dementia. They aim to have a single pathway that will support people to live at home for as long as possible. Understanding and knowledge of dementia amongst professional, the general public, people with dementia themselves and their carers will be improved (JSNA, 2010-2015). According to Clare et al (2014), the trajectory of dementia involves enormous variation starting from when the person is diagnosed to the end of life and living well differs across this trajectory. The proposed trajectory focused on people living in their own home observing whether and how their situation changes, and monitoring the progression of dementia, in order to identify the factors that influence their ability to live well as their dementia progresses. The royal borough together with Westminster they have developed a living well service for on-going care. Living well with dementia as been defined as being able to achieve the best state of health, physically, mentally and socially (Institute of Medicine, 2012). The meaning emphasises the central role of social factors in determining the ability to live well shaped by the physical, social and cultural surroundings, and by the effects of chronic illness not only on the affected individual but also on family members, friends, and carers’.
The responsibility to support people living with dementia to lead safe, independent lives in their own homes and communities for as long as possible lies with the Adult Social Care departments of local authorities. They will conduct an assessment of an individual’s needs and work with that individual to create a person-centered support plan outlining the person’s goals, how they can be realised and who can provide the services to realise these. Service users will be apportioned a personal budget, that can cater for support needs such as assistive technology, home adaptations, rehabilitation and reablement, sheltered housing or residential care where necessary and also information and advice. Adult Social Care also commission services to support carers, such as respite care.
However, when assessing the capacity of the care system in the borough to meet the needs of service users, it is to be noted that there is a strong local emphasis on delaying the transfer of people living into a care home and looking after them at home for as long as is possible. There is a voluntary sector which provides essential support for people living with dementia in the community in areas such as day services and befriending schemes. It is important to ensure that voluntary and professional services, and also families providing home-based care, are not only complimentary but always adequately meet the needs of their service users. It is also important to ensure that, were possible, external placement of patients does not go against their wishes. A needs assessment has collated feedback from local clinicians and service users in the area. Through this assessment, there are several areas in quality, supply, and cohesion of services that have been identified, and recommendations made.
A survey was conducted to gather views of people with dementia and their carers to help in improving dementia care. Alzheimer’s Society (2012) found that a large number of people with dementia feel that they are not being supported and do not feel being part of their community, leaving them with feelings of depression and anxiety. They felt that the Alzheimer’s Society was not equipped to deal with the condition. Another survey by Alzheimer’s Society (2013) suggests that progress is being made a year later, with almost two-thirds (61%) of respondents reporting that they were living well with the condition. The report also found that quality of life is still varied for a significant number of people with dementia. Environment, the presence of depression, social isolation and loneliness are key drivers for quality of life for people with dementia. Cultural background and beliefs affect patients’ choices in the type of care they may wish to receive. Their relationship and ability to engage and communicate with their carers is also an important factor. This is reflected in the royal borough where users and carers have identified that they particularly value respite care, practical (financial and legal) advice, memory cafes and day centers. Areas for improvement that have been identified include staff training, access to and cohesion of services, consistency of support and personal control when choosing services (JSNA, 2015)
People who look after dementia patients play a central role by supporting them. Most carers are often old people themselves and more likely to be women providing a substantial number of hours of support. There is evidence that carers often experience poorer physical and mental health, social isolation, fewer opportunities to employment or education, or having time to themselves or with friends. For young carers, it can often mean life chances are severely limited (JSNA, 2015). Results recorded by the Survey of Adults Carers shows that around a quarter of carers are known to the services in the royal borough for taking care of someone with dementia. Based on the survey’s responders, carers that were providing more than 50 hours a week of unpaid care were above 50%. Almost half of the responders stay with the individual they look after and they have been caring for them for more than 5 years. When informal care given is more than 20 hours weekly, there is evidence that it has a detrimental impact on the carer’s health and wellbeing.
The royal borough has identified some gaps in the services that could possibly hinder the effective management of people with dementia. A significant number of people with dementia are being placed outside the borough away from family and friends due to the provision of care home beds. Although this is a huge challenge in most boroughs in Kensington and Chelsea there are fewer beds than many other areas (JSNA, Dementia, 2015). The local authority and CCG commissioning to address the supply of local residential care homes beds in future for dementia care. They will ensure that the relevant service providers are fully equipped with the essential resources required in meeting this need. Numbers of people with dementia are likely to rise by around 55% in 15 years to come and the borough will ensure that the relevant service providers are fully equipped with the essential resources required in meeting this need. Providing adequate training and support for staff and carers looking after people with dementia. Aiming to scale up current practices and resources to meet the rising needs and ensuring that any innovations or changes brought about apply the evidence-based practice. Emphasised the need to explore joint working with police and other communities that provide safety to support the appropriate and effective use of assistive technology/telecare for patients with dementia.
The Royal Borough of Kensington & Chelsea is fortunate in that it has an informal system of care for service users, consisting of home-based care, which has enabled it to cope with a low provision of beds in institutions. However, an increasingly aging population means that current home-based care will become increasingly inadequate. Action must be taken across services to ensure that they are able to meet the projected rising need.
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