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Leicester Joint Strategic Needs Assessment (JSNA). Health and social care needs associated with dementia, 2016.

Dementia describes a set of symptoms, including memory loss, mood changes, and problems with communication and reasoning. These symptoms are more severe than those experienced in normal ageing. The severity of dementia can be categorised as mild, moderate or severe.

Alzheimer’s disease is the most common type of dementia, accounting for more than 60% of all cases; dementia related to vascular disease is the next most frequent form (17%). A further 10% of cases are related to a combination of the two.

The mean survival period with Alzheimer’s disease is 7.1 years and 3.9 years with vascular dementia.

Who’s at risk and why?

Dementia disproportionately affects people aged 65 and over, however early-onset dementias can affect people under the age of 65. Whilst Alzheimer’s disease accounts for some early onset cases, other causes, including genetic conditions, are also important.

Dementia UK estimates a prevalence of dementia for the population of England of 1.1% (1.1 in 100 people will be affected by dementia at a given time).

The prevalence of both early onset and late onset dementia increases with age, doubling with every five-year increase across the entire age range from 30 to 95. The prevalence of early onset dementia is higher in males than females for those aged 50-65, whilst late onset dementia is marginally more prevalent in females than males.

With regard to deaths which are attributable to dementia, Dementia UK found that mortality attributable to dementia increases from 2% at age 65 to 18% at age 85–89 in males, and from 1% at age 65 to a peak of 23% at age 85–89 in females. Overall, 10% of deaths in men over 65 years, and 15% of deaths in women over 65 years are attributable to dementia.

Although the Leicester population is ethnically diverse, the majority of people aged over 65 years are from White/White British ethnic backgrounds. However, with the ageing population, meeting the needs of Black and Minority Ethnic (BME) elders will become an urgent issue.

The level of need in the population

In Leicester, the number of people estimated to have dementia at a given time, is around 1,835 females and 991 males aged 65 and over; giving a total of 2,826. Dementia in people aged below 65 years affects around 70 people locally.

The NHS is working to a slightly different target prevalence of 2,653. According to Leicester City Clinical Commissioning Group there are 2,340 people on general practice registers in Leicester with a diagnosis of dementia.This number is 88.2% of the NHS target.

Applying national incidence rates (number of new cases) to Leicester’s population, gives an estimated 790 new cases of dementia each year.

1,794 of the total number of people with dementia at a given time, are likely to have Alzheimer’s disease, with a further 492 likely to have vascular dementia and another 289 presumed to have a mix of Alzheimer’s disease and vascular dementia.

The majority of cases are of mild dementia (around 55%), 32% have moderate dementia and 13% severe dementia. When these proportions are applied to the Leicester population, there are 1,551 people with mild dementia, 912 with moderate and over 364 with severe dementia.

Current services in relation to need

Important objectives of dementia care include enabling people with dementia and their carers to know where to go for help, what services they can expect, and how they can be involved in decisions about their care. This requires improved knowing about who has dementia and who cares for them.

Since the implementation of the national strategy, 'Living well with dementia', the rate of diagnosis has increased such that currently 88% of the population estimated to have dementia, according to NHS target prevalence, are recorded on primary care disease registers in Leicester.

A number of services in Leicester exist for people with dementia and their carers. These include memory assessment, secondary care at University Hospitals Leicester and at Leicestershire Partnership Trust, primary and community health and social care services and local nursing and residential homes.

In the past, service provision evolved often as a result of clinical expertise rather than effective commissioning. However, recently health and social care commissioners have focused on patient journey from early diagnosis to end of life care to meet increasing need.

Projected services use and outcomes in 3-5 years and 5-10 years

The projected number of people with early onset dementia is projected to increase slightly over the next 5 to 10 years; from 71 to 76 cases. Most will be male, 45 cases projected for 2025 compared with 31 females.

The total number of people aged over 65 years in Leicester is estimated to rise by around 3.7% or 17,000 by 2030. The largest increases are expected in the 70-74 year olds with an estimated increase of over 4,800.

The number of people over 90 is predicted to be almost double by 2030 at 4,000. In consequence, the total number of cases of dementia in people aged over 65 years is projected to increase from 2,885 in 2015 to 3,165 in 2020 and 4,237 in 2030; a projected increase of 47% between 2015 and 2030.

Unmet needs and service gaps

There are approximately 2,600 people with dementia in Leicester, with about 800 new cases each year. Most people with dementia are aged 65 and over, but there are an additional 70 younger people with dementia. If dementia could be removed from the population, about 250 deaths per year in those aged over 65 years could be averted.

The majority of older people live in the community. In Leicester there are many areas with more than 1,500 residents aged over 65 years. Areas such as Knighton and Rushey Mead have the highest number, whilst Evington and Thurncourt have the largest proportion of residents aged over 65 years.

Although Leicester is a diverse city, there are small numbers of people aged over 65 from black and minority ethnic (BME) backgrounds relative to the general population, but this is projected to increase substantially in future years.

Recommendations for consideration by commissioners

Recommendations for commissioners include a call to note and act on the recommendations of the Joint Specific Needs Assessment on Dementia in Leicester; and implementing the local strategy for commissioning services for people with dementia and their carers.

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