Part of: Ill Health and Disability

Related to: Ageing Population, Mental Health and Illness, Older People, End of Life Care

 

Key Facts

  • There is an estimated 2,604 people in BaNES as at April 2015 who have dementia (diagnosed and undiagnosed).  Bath and North East Somerset's CCG has a damentia diagnosis rate as at April 2015 of 58.0%.  Thus, there is an estimated gap of 1,094 people who may benefit from access to support by way of a dementia diagnosis.
  • 22% of death certifications in B&NES mention dementia or a related condition, as opposed to nationally, where 17.3% of death certificates mention dementia or a related condition.
  • Dementia cases in B&NES are expected to increase by 45% for females and 65% for males between 2014 and 2030 (727 females, 605 males).
  • Given evidence that many dementias may have a vascular component, the Blackfriars Consensus statement on promoting brain health advises that areas tackle certain risk factors and strengthen protective factors.

Background

Dementia describes a set of symptoms which include memory loss, changes in mood and behaviour, problems with communication, reasoning and the ability to carry out daily activities.  The causes of dementia are not well understood, but the symptoms occur when the brain is damaged by certain diseases causing structural and chemical changes.  People may also develop depression, psychosis, aggression and wandering.  There are many diseases that result in dementia.  The most common types of dementia are outlined below:

  • Alzheimer's disease – this is the most common cause of dementia.
  • 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. This causes vascular dementia. 
  • Mixed dementia – this is when someone has more than one type of dementia, and a mixture of symptoms. It is common for someone to have Alzheimer's disease and vascular dementia together.
  • Dementia with Lewy bodies.
  • Frontotemporal dementia (including Pick's disease).

Other diseases can lead to dementia.  These rarer causes include: alcohol-related brain damage (including Korsakoff's syndrome), corticobasal degeneration, progressive supranuclear palsy, HIV infection, Niemann-Pick disease type C, and Creutzfeldt-Jakob disease (CJD).

There is no cure for dementia, it is a progressive disease; the symptoms will gradually get worse.  How fast dementia progresses will depends on the type of dementia.  However, people with dementia can often have a good quality of life for a number of years.1

Information on groups and activities in Bath and North East Somerset open to adults who are socially isolated, affected by mental health issues, substance misuse or homelessness can be found in the Hope Guide

What does the data say?

National data

There are approximately 800,000 people with dementia in the UK, and this number is estimated to double by the year 2040.  Costs to the economy are likely to treble from £23bn to over £60bn a year in this time period.2

As with any illness, two broad groups of people exist – those who have been diagnosed with the illness and those who have the illness, but have not yet been diagnosed.  In the UK the total prevalence of dementia (diagnosed and undiagnosed) increases with age, and is higher in older women than older men (Figure 1).  It is not clear whether this gender difference reflects a true difference, or explained by longer survival of women than men after they develop dementia.

Dementia prevalence

Figure 1: Estimates of the population prevalence (%) of dementia for the UK, aged 65+, by gender (Medical Research Council Cognitive Function and Ageing Study, MRC CFAS II) 3

One would expect that over the past two decades the prevalence of dementia amongst the whole population would have increased as we have an ageing population.  However, there is strong evidence that there has been a very slight fall in dementia prevalence nationally over this time period, from 8.3% to 6.5%; largely because of a reduction in the prevalence of dementia in the older population, amongst which most dementia occurs.  Later-born populations seem to have a lower risk of dementia than those born earlier in the past century.4  One important caveat is that this drop in overall prevalence appears largely driven by people with dementia living in non-care settings, and it is estimated that the prevalence of dementia within care settings has increased from 60% to 65% (age standardised).5

In 2010/11, in England less than half (42 per cent) of those estimated to have dementia were being diagnosed.  The Prime Minister Challenge on dementia 2020 states that this has now risen by 17 percentage points to 59 per cent.6

Local data

The estimated number of people with dementia as at 1st April 2015 is 2,604 people (i.e. including diagnosed and undiagnosed).  BaNES CCG’s actual dementia diagnosis rate is 58.0%, thus there is an estimated gap of 1,094 people who may benefit from access to support by way of a dementia diagnosis.7  The diagnosis of dementia varies widely between GP practices.

Data from the 2012 End of Life Care Local Authority Profiles suggests that there are significantly higher rates of death certifications that include a mention of dementia in B&NES than nationally (22.9% B&NES vs 17.3% national).8

Future Projections

National data

If current trends continue, the number of people with dementia in the UK is forecast to increase to 1,142,677 by 2025 and 2,092,945 by 2051, an increase of 40% over the next 12 years, and of 156% over the next 38 years (Figure 2).9

Dementia Projections UK

Figure 2: Projected increases in the number of people with dementia in the UK (2012– 2051), assuming constant age-specific prevalence, by gender.10

New research published in the peer-reviewed medical journal, The Lancet: Neurology11, found evidence dementia rates may not be increasing, as had been predicted, but are remaining stable – and could even be falling.  The results tentatively suggest that UK dementia prevalence rates might be in decline, or at the very least stabilising.  However, the results of this paper highlights the need for more accurate and up-to-date information on dementia prevalence.

Local data

For planning purposes it is important that we understand potential yearly changes in the number of people with dementia locally.  The Projecting Older People Population Information (POPPI) 12service provides estimates of the number of men and women over the age of 65 years likely to have dementia up to 2030 at a local level.  Figures 3, 4 and 5 below show predicted changes in Bath and North East Somerset in the numbers for males and females, males alone, and females alone respectively.  These figures are estimates for the total number of predicted dementia cases (diagnosed and undiagnosed).  Key observations are:

  • By 2020 we might expect an additional 329 cases of dementia in B&NES; and by 2030 and additional 1,331 cases.
  • Of the additional 329 people, approximately half will be women and half will be men.
  • Of the additional 1,331 cases, just over half will be women (727 women, 605 men).
  • The steepest rise, seen in both sexes, is in the 90+age group, and to a lesser extent in the 80-84 and 85-89 age groups.
  • Minimal changes in the numbers of people with dementia are seen in the 65-79 age groups in both sexes.

Dementia projections_all

Figure 3: People aged 65 and over predicted to have dementia, by age, male and female combined, 2014-2030
Dementia Projections for men
Figure 4: Men aged 65 and over predicted to have dementia, by age, 2014-2030
Figure 5: Females aged 65 and over predicted to have dementia, by age, 2014-2030

What does the community say?

The South West Care Services Improvement Partnership's regional consultation on dementia brought out three themes from carers, users, and the general public:

  • Improving information and raising awareness;
  • Promoting early diagnosis and intervention; and
  • Improving care for people with dementia.

All respondents with dementia responding to the Long Term Conditions survey 2011 suffered from another long term condition.  Further accurate understanding of multiple conditions has been identified as an area for further research.

Are we meeting the needs?

The Health and Wellbeing Board is committed to improving the care and experience of people with dementia and their carers through a package of support including better diagnosis, improving care in hospital, improving standards of care in homes and domiciliary care, better awareness and support in the community.  The Health and Wellbeing Board will also work in partnership with health, social care, communities, business and other local services to champion ‘dementia friendly communities’.

The Prime Minister’s Dementia Challenge (2012),13 put forward three key themes to improve dementia care, including:

  • driving improvements in health and care (including better diagnosis; improving care in hospitals; improving standards in care homes; more information for patients and families; and more support for carers);
  • creating dementia friendly communities that understand how to help (including improving awareness among the public; and the establishment of recognised dementia-friendly communities, led by the Alzheimer’s Society); and
  • better research (including increased funding for research into care, cause and cure, with a commitment to more than double funding for dementia research to over £66 million by 2015).

The Prime Minister's (successor) challenge on dementia 202014 sets out what the previous Coalition government wants to see in place by 2020 in order for England to be:

  • the best country in the world for dementia care and support and for people with dementia, their carers and families to live;and
  • the best place in the world to undertake research into dementia and other neurodegenerative diseases.

It also highlights the progress to date on improving dementia care, support and research.  It outlines 18 key aspirations which focus on driving improvements in health and care, creating dementia friends and dementia friendly communities, and better research.

One area that is being tackled is to improve the rate of timely diagnosis of dementia.  Diagnosis allows people with dementia to access services and, in some cases, medication.  It allows time to make critical decisions about the care and support they receive while they have capacity to do so.  For the health and social care system, it helps planning, avoidance of future admissions and improved clinical management.  However, rates of timely diagnosis varies across the country (see above for latest dementia diagnosis figures).  The NHS Mandate 2015-16 15reaffirmed the objective set out in the Prime Minister's 2012 Challenge for NHS England to ensure two-thirds of the estimated number of people with dementia in England have a diagnosis, with appropriate post-diagnosis support.  The Prime Minister’s Challenge on dementia 2020 sets out future work to improve diagnosis rates, including reducing variation in rates across the country, improving waiting times for assessments, and improving the diagnosis of dementia for people of Black, Asian and Minority Ethnic original, for whom the evidence shows that diagnosis rates are particularly poor.16

The majority of people with dementia are not cared for by specialist services, but managed in primary care and by generic social work teams.

B&NES Dementia Care Pathway Group

The Dementia Care Pathway Group in B&NES comprises of a wide range of stakeholders involved in the delivery of dementia care. The group meets on a bi-monthly basis to deliver a work programme which focuses on:

  • Better information for people with dementia & their carers
  • Improving diagnosis rates
  • Improving post-diagnostic support in the community
  • Support the development of dementia friendly communities
  • Improving care in hospitals
  • Improving standards in care homes & domiciliary care
  • Supporting people with dementia at end of life
NICE Guidance

Need to assess the gaps against the NICE Guidance. Specifically for people living with dementia and their carers:17

  • Non-discrimination: people with dementia should not suffer discrimination
  • Securing valid consent
  • Carers should have their needs assessed and met
  • Health and social care should be coordinated and integrated and delivered accordingly
  • Memory services should be the single point of referral for all people with a possible diagnosis of dementia
  • Structural imaging for diagnosis should be used in the assessment of people with suspected dementia
  • Behaviour that challenges should be helped early and systematically
  • All staff working with older people in the health, social care and voluntary sectors should be trained for dementia care
  • Acute hospitals should ensure the mental health needs of dementia users are catered for.
Prevention
There is increasing evidence of the association between certain modifiable risk factors and dementia risk.18 19 20  The Blackfriars Consensus statement published by PHE and the UK Health Forum in 2014 states that “the scientific evidence is sufficient to justify action on dementia prevention and risk reduction” and recommends that, as many dementias may have a vascular component, dementia prevention work focuses on tackling tobacco, physical inactivity, alcohol, diet raised blood pressure, obesity, and diabetes;  and strengthens the protective factors of education and intellectual and social engagement.21