Dementia

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Joint Strategic Needs Assessment (healthysomerset.co.uk/JSNA)

What is dementia?

The term ‘dementia’ describes a set of symptoms which include loss of memory, mood changes and problems with communication and reasoning. The terms ‘Alzheimer’s disease’ and ‘dementia’ are often used interchangeably, however dementia is the overarching umbrella for all types of dementia, Alzheimer’s disease being one of them.

The most common types of dementia are Alzheimer’s disease and vascular dementia, while rarer types include Lewy body dementia, dementia in Parkinson’s disease and fronto-temporal dementia.

The symptoms people experience occur when the brain is damaged by certain diseases, including Alzheimer’s disease and damage caused by a series of small strokes (vascular dementia). It is progressive, which means the symptoms will gradually get worse. The course of the illness and people’s symptoms may appear at different stages and affects individuals in different ways.

Information on how someone receives a diagnosis of dementia is laid out in a Somerset Dementia Diagnostic Pathway  which will be updated in 2018.

Background

• Nationally, dementia costs society an estimated £26 billion a year; more than the costs of cancer, heart disease or stroke (Alzheimer’s Society, 2014).
• There are a number of key risk factors for dementia. These relate to: Ageing; Gender; Genetics; Learning disabilities; Ethnicity.  In addition pre-existing medical conditions such as Parkinson’s disease, stroke, type 2 diabetes and high blood pressure increase the risk of developing dementia.  Work is being done to increase public awareness of risk factors.  
• There is also increasing evidence that both vascular dementia and Alzheimer’s disease might be attributed to potentially modifiable lifestyle factors, for example; smoking doubles the risk of dementia.
• Nationally and in Somerset, dementia is considered the leading cause of death overall and amongst women accounting for 12% of deaths (2016) and is the underlying cause of death for 15% of deaths
• In the UK, 62% of people with dementia are women and 38% are men.
• 1 in 14 people over the age of 65 have dementia, and 1 in 6 people over the age of 80.
• 59% of people know someone with dementia (British Social Attitudes survey 2015)
• It is estimated approximately two thirds of people with dementia live in their own home and one third in care homes. 
• The Prime Minister’s Challenge on Dementia (PMCD 2020) sets a goal that by 2020 there should be a greater focus on independent living with more people being able to live in their homes for as long as it is in their best interests to do so.
• About 69 per cent of care home residents are estimated to have dementia which is backed up by research from the Alzheimer's Society, emphasising the need for competent well-trained staff and dementia-friendly environments.
• People with the condition are also core users of NHS care – a quarter of hospital beds are occupied by people with dementia over the age of 65 at any one time.
• An increase in the workforce will be required in coming years to support the care needs of those living at home. Skills for Care reports that workforce projections show a potential growth of between 19% and 59% by 2025 to meet the demands of those 65 and over.
• There are estimated to be 670,000 people in the UK acting as primary carers for people with dementia, which saves the state £8 billion per year. Many of these carers are themselves in poor health and in need of support from health and social care services, it is estimated 39%  of family carers spent 100 or more hours each week looking after or caring for a person with dementia, with 52 per cent spending 50 hours or more per week.

Somerset Dementia Strategy 2016-2020

Dementia remains a high priority for all stakeholders within Somerset who continue to strive for quality and outcome improvements within dementia services. The strategy also has at its core the key principle of individual ‘wellbeing’ as set out in the Care Act 2014.

The full strategy is available for download here: 

• Somerset Dementia Strategy 2016-2020
  Please click here to read or download the full document (4.2MB)

The Strategy for 2016-2020 builds on the previous Strategy 2013-2016, which set out the vision for dementia services for Somerset. Significant progress has been made against the key priority areas identified in the document.  

The Somerset Vision

The Somerset Dementia Strategy 2016-2020 includes a four-part Vision. In summary:-

People with dementia and their carers and families in Somerset will:

• Be supported to live well with dementia, irrespective of the stage of their condition or where they live
• Be supported by communities that are working towards becoming dementia friendly
• Be able to access timely, high quality and appropriate care and support
• Be supported by a workforce that is skilled, experienced and knowledgeable in dementia

The Strategy also includes Key Ambitions associated with the Well Pathway for Dementia. This has five elements: Preventing well; Diagnosing well; Living well; Supporting (carers) well; Dying well.

Implementing the Strategy

Somerset is renowned for excellent partnership working and commissioners, providers and the voluntary sector organisations have worked together for a number of years to improve dementia services. 

The Somerset Dementia Strategy Group  is implementing an action  plan, setting out further improvements to help realise the Somerset Vision and related ambitions for Dementia, which are in line with the Dementia Well Pathway and the PMCD 2020.

Somerset Dementia Needs Assessment

The Strategy draws upon a detailed Dementia Needs Assessment for the county. It can be downloaded below:

• Somerset Dementia Needs Assessment
  A comprehensive evidence base featuring a wealth of data relating to dementia in Somerset

Some of the key facts are as follows:-

• In Somerset, a person who only had dementia (and no other long term disease or illness) would cost the health and social care system on average just over £11,500 per year. If the person had other conditions, that cost would rise.
• Over 9,300 people in Somerset are estimated to have dementia, of whom around 150 are aged under 65 (2017).
• This is projected to almost double to 18,000 by 2035 (see Chart 1).
• The number of new dementia cases each year is predicted to rise by 86% to over 4,800 by 2035.
• Rates of dementia in Somerset are significantly higher than the national average and there are indications that even this may significantly under-estimate the true picture. In 2016/17, 1.0% (5,479 people) of all those on GP practice registers in Somerset were registered with dementia, compared with 0.8% for England. (Public Health England National General Practice Profiles) 
• However, amongst the 65 and over age group, 1 in 24 are diagnosed with dementia, this proportion was, at 4.09%, slightly below the national figure.
• For 2016/17 there were 5,390 people aged 65 or older on Somerset GP practice disease registers for dementia.
• The proportion of people with dementia varies considerably by GP Practice from 2.1% to 0.3%. This is largely reflective of the age of patients at each practice. Source: National General Practice Profiles.
• The diagnosis rate (observed prevalence as a proportion of expected prevalence) in 2017 shows Somerset with a rate of 62.1% of people estimated to be living with dementia (over 65), against a national estimate of 67.9%. (Public Health England – Dementia Profile)
• Note that both the observed and expected rates vary considerably across the county.
• Age-standardised rates of hospital in-patient and emergency admissions are generally lower in Somerset than in England generally. However, short-stay emergency admission rates are above both the national and regional averages.
• 1 in 4 people with dementia in Somerset live in residential care.
• 2 in 3 deaths of people aged 65 or more with a recorded mention of dementia occur in a care home, in line with the South West average but below that of England.
• In Somerset, more than 58,000 people describe themselves as unpaid carers. Of these, we estimate from Alzheimers Society research that approximately 6,500 carers in Somerset currently care for someone with dementia.

Chart 1 Projected Trends in People with Dementia in Somerset

Chart 1 Projected Trends in People with Dementia in Somerset

Source: Somerset County Council/Alzheimers Society

Other Data Sources on Dementia

Public Health England has produced a Dementia Profile. This enables the user to compare a range of dementia-related indicators for Somerset with other local authorities or Clinical Commissioning Groups.

NICE (NG16) (2015) Dementia, disability and frailty in later life – mid-life approaches to delay or prevent onset.

In August 2016, the Department of Health published a Dementia Atlas. According to the DoH website, "this interactive map of England allows people to make comparisons about the quality of dementia care in their area, on issues such as prevention, diagnosis and support".

In November 2016, the Housing Learning & Improvement Network published a research paper on Individuals with dementia living in extra care housing. 

Dementia amongst Gypsies and Travellers

Although life expectancy for Gypsies and Travellers is relatively short, there is growing evidence that they experience dementia at an earlier age. The discrimination they experience, inadequate living conditions, the Travelling lifestyle, inability to access healthcare and the lack of culturally appropriate services make life more difficult for people with dementia and those who care for them.

The Leeds GATE organisation has produced a Brief guide on Dementia in Gypsies and Travellers for commissioners and service providers.

For more information and advice, please go to:-

• Somerset County Council Adult Social Care
• Somerset Choices - enabling people to find the right care and support 
• Dementia Somerset
• Somerset Dementia Strategy 2009
• Alzheimers Society