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Dementia

Introduction

Dementia is a progressive and terminal disease caused when brain tissue is damaged.

The condition is defined by a number of symptoms that include loss of memory, problems thinking, problem solving and language. This can result in changes in behaviour, which can disrupt people's ability to live independently and may affect social and personal relationships.

There are over 100 types of dementia, often named in relation to the condition that causes them. The most common (62% of cases) is Alzheimer's Disease, which affects the structure and chemistry of the brain leading to death of brain cells.

Vascular dementia (17% of cases) occurs when the oxygen supply to the brain is cut, for example by a stroke or progressively by a series of mini strokes resulting in the death of brain cells.

Mixed Dementia (10% of cases) is where a person has been diagnosed with both Alzheimer's and vascular dementia.

Other rarer types of Dementia are described by the Alzheimer's Society.

What do we know?

Older people are the largest single group receiving services from Adult Social Care in Reading, comprising 63% (Referrals, Assessments and Packages of Care - RAP 2012/13) of all service users.

Nationally, we spend in total 52% (HSCIC 2014/15) on older people's social care. 1 in 4 people over the age of 80 has Dementia. Some people progress through old age without ever having a social care need, and many others have a social care need for only a small fraction of time. However, around two in every three women and one in every two men can expect to have a high care need at some point during their retirement.

Local services for people living with dementia

Reading Borough Council leads on a number of initiatives, including:

  • The provision of long term and short term residential care for people with dementia and the construction of a dementia friendly garden at The Willows Care Home in Reading.
  • The provision of a day service for frail older people and people with dementia.
  • Funding a befriending service - volunteers visit people with dementia and take part in activities with them.
  • A number of support groups for both individuals with Dementia and carers.
  • Dementia Support, Age UK Berkshire - This charged-for service is paid for by service users' families from Personal Budgets, own funds or in a small number of cases, directly by local authorities. Trained Age UK Berkshire employees work one-to-one with people living with dementia, enabling them to undertake social or individual activities of their choice. The service also provides some respite for carers and families.

The council's Older People's Commissioning Strategy is in development and has a focus on 4 core themes:

  • To ensure older people stay healthy and independent for longer.
  • To ensure that all older people are safe and respected both in the community and when receiving support.
  • To ensure that older people have choice and control over the services they receive and have access to the right information in order to make decisions.
  • To ensure high quality services in health and social care through robust quality Monitoring

In Reading, there is already significant joint working between health agencies, Clinical Commissioning Groups (CCGs), local authorities and the voluntary sector; many examples of which are listed below).

Locally there is a Berkshire West Dementia Stakeholders Group, with representation from health commissioners and providers, Unitary Authorities and the voluntary sector.

Reading Dementia Action Alliance (RDAA) hosted by the Alzheimer's Society was formed at the beginning of August 2013. The aim of the DAA is to improve the lives of people with dementia and their Carers. The purpose of RDAA is to engage with local businesses, charities, voluntary and community services and independent providers as well as the statutory sector to create dementia friendly communities and to encourage organisations to sign up to the alliance. More information about the work of RDAA can be found on their website.

In Reading many organisations have become Dementia Friends by attending a short awareness-raising session run by a Dementia Champion. The Dementia friendly project also involves inter-generational working with schools, colleges and youth groups in partnership with people affected by dementia and their Carers.

In 2013/14, Berkshire West CCGs increased their investment into older people's Mental Health Services in recognition of the costs associated with both the increase in the volume of patients with dementia and the prescribing issues relating to anti-dementia drugs. As a result, capacity in memory clinics has increased in light of growing demand - referrals increased across Berkshire by an average 15.8% over a 12 month period (approximately 30 new patients are referred into memory clinics each month).

Four 'Dementia Care Advisor' posts are funded by CCGs in West Berkshire. These provide information, advice, guidance and support to those newly diagnosed with dementia, their family and carers and has a dedicated post for people with early onset dementia.

The Younger People with Dementia (YPWD) Group - is a charity, partly funded by Reading the CCGs. This service includes both workshops and 1 to 1 sessions for younger people with dementia.

Other activities across West Berkshire include 'Singing for the Brain', 'Walking for the Brain' and Dementia Cafes.

Care Home In Reach Team (West of Berkshire) - The aims of this project are to deliver improved quality of life for people including those living with dementia, in selected residential and nursing homes; improve the skills of the care home staff through training, building their confidence and professionalism and improve communication for older people, including those living with dementia, and involvement of carers. This will include their involvement with anticipatory planning for End of Life care.

Cognitive Stimulation Therapy (CST)

Staff from The Maples Resource Centre for older people are trained in Cognitive Stimulation Therapy (CST) group work and deliver CST sessions for service users living with dementia; which have been reported to have been positively received by both staff and those attending the sessions.

Facts, Figures, Trends

Incidence

Alzheimer's UK reports that 685,812 people In England are reported to be living with dementia or which, the highest number (121,512) live in the South East.

Dementia by age and gender

National data shows the trends in dementia prevalence by gender and age. As shown in the graphs below prevalence is consistently higher in women than in men, most markedly in the 75 years and above age range; which may be representative of women's higher life expectancy.

Graph 1 - Number of adults diagnosed with dementia by gender and age group.

image1

Graph 2 - Dementia prevalence by gender in under and over 75 year age groups.image2

Trends in dementia incidence and prevalence

Recently published research on dementia rates in Western Europe suggests that the predicted 'dementia epidemic' in these countries, including the UK, may not be as fast growing as was previously thought. Most of the epidemiological evidence on which current policy making is based is now 20 years old. The predictions from this evidence are now out of date due to changes in living conditions, better healthcare, education and lifestyle improvements. Efforts to combat vascular risk factors such as blood pressure and cholesterol reduction may also be protecting against dementia. Four out of the five studies showed no significant changes in dementia incidence or prevalence between two time points. In the UK, there was a significant reduction (22%) in the predicted number of people aged 65+ with dementia compared to the predictions made in 1990.

However, dementia is still a major health and social care challenge, partly due to significant growth in the number of people who are living for longer. As shown in the table below, prevalence increases in a linear fashion with age; with a notable increase in the percentage of the population living with the condition over the age of 79. The absolute numbers with dementia will likely mirror population ageing patterns.

Table 1 - UK data on Dementia

Age range

  % males

% females

65-69

1.5

1.0

70-74

3.1

2.4

75-79

5.1

6.5

80-85

10.2

13.3

85-89

16.7

22.2

90+

27.9

30.7

The table above illustrates the most recent, relevant source of UK data from Dementia UK: A report into the prevalence and cost of dementia prepared by the Personal Social Services Research Unit (PSSRU) at the London School of Economics and the Institute of Psychiatry at King's College London, for the Alzheimer's Society, 2007.

The prevalence rates have been applied to  Office for National Statistics population projections of the 65 and over population to give estimated numbers of people predicted to have dementia to 2030.

To calculate the prevalence rates for the 90+ population, rates from the research for the 90-94 and 95+ age groups have been applied to the England population 2006 to calculate the numbers in each age group, the sum of these groups is then expressed as a percentage of the total 90+ population to establish the predicted prevalence of the 90+ population as a whole.

Graph 3 - People aged 65+ predicted to have dementia - projections to 2030 in Reading.

image3

(Source - POPPI data 2014)

Graph 4 - Predicted prevalence in dementia projected to 2030, Reading compared to neighbours in Berkshire:

image4

Source - POPPI 2014

Costs of Dementia to society

Statistics from Alzheimer's UK suggest that Dementia costs the UK £26.3 Billion a year, this includes:

  • Unpaid care: £11.6bn
  • Health care: £4.3bn
  • State social care: £4.5bn
  • Individual social care: £5.8bn
  • Other costs: £0.1bn

Residential costs:

In Reading, the Council's 2015/16 usual costs for a residential placement is £700.00 / week for people with dementia. For nursing placements the usual cost (including Health contribution) is £811.11 for people with dementia.

Population data from POPPI shows that the increase in the older population in Reading will not be as high as it will be in the surrounding authorities. Using current Care Home placement figures and applying the percentage increase to the general population and for those with dementia the number of care home placements that will be needed in the borough is as follows.

 

Residential 65+

Residential Dementia

Nursing 65+

Nursing Dementia

2020

118

37

86

46

2025

145

44

106

54

2030

200

51

146

63

Source POPPI (2014)

Currently, there are 5 nursing homes in the borough that care for people with dementia providing149 beds registered for residential dementia care and in last financial year the Council was paying for 32 residential care home placements.

Last financial year the Council was funding 115 nursing placements for older people in the Reading borough. Of those placements only 39 (27%) were for people with dementia.

National & Local Strategies (Current best practices)

https://www.gov.uk/government/publications/2010-to-2015-government-policy-health-and-social-care-integration

Dementia: a state of the nation report

Dementia Challenge

Dementia Friends

Readings Older People's Strategy (Draft)

Reading's Older People's Needs Analysis (Draft).

What is this telling us?

The Borough currently has 398 residential beds for older people of which, 149 are registered for dementia care and 383 nursing beds of which, 177 are registered for dementia care, there is currently sufficient capacity within the market to cater for the council's needs through till 2030. The figures above don't take into account the need to reduce care home placements by 20 places a year or the effect extra care housing will have on the care home market once all of the schemes are completed. It is likely that the number of beds needed for residential care of over 65's could be as much as 20% less than the figures shown in the table below:

 

Residential 65+

Residential Dementia

Nursing 65+

Nursing Dementia

2020

118

37

86

46

2025

145

44

106

54

2030

200

51

146

63

To address this, the Council has procured a provider to build a new nursing home to cater for over 65 nursing and nursing dementia care in the borough.

What are the key inequalities?

  • There are 40,000 younger people with dementia in the UK. However, it is estimated that 44% of cases remain undiagnosed.
  • The Dementia Prevalence Calculator Tool enables local areas to account for local factors and establish estimates of their local prevalence rates for all ages. According to the tool the adjusted figures for December 2015 are as follows: North & West Reading CCG -71% of expected prevalence & South Reading CCG - 70%. There is a national Directly Enhanced Service (DES) encouraging GPs to screen all at risk patients aiming to identify more people with possible dementia and refer them to the Memory Clinics.
  • The Quality Outcomes Framework (QOF) data for 2013-14 shows the following number of patients on the GP registers: North& West Reading CCG - 564, South Reading CCG - 467.

Inequalities in service access:

Mental Health service provision does not reach all sections of the population evenly with those living in deprived areas, older people, and black and minority ethnic groups (BME) tending to face barriers to access. Stigma and discrimination may play a part in compounding these inequalities.

  • There are 25,000 people with dementia from black and minority ethnic groups in the UK. The ethnicity status of patients attending the memory clinics in Berkshire very closely mirrors the ethnicity profile of the >65 years population in each unitary authority.

Alzheimer's Society reports that many people with dementia have described an impaired quality of life

  • 61% felt anxious or depressed recently
  • 40% felt lonely recently.
  • 52% don't feel they get enough support from the government.
  • 34% don't feel part of their community.
  • 28% aren't able to make decisions about how they spend their time.
  • 18% aren't living well with dementia.

What are the unmet needs / service gaps?

Dementia presents a huge challenge to society, both now and increasingly in the future. It is estimated that there are currently 7-800,000 people in the UK with dementia, of whom approximately 570,000 live in England. A lot can be done to help people cope with the symptoms of dementia. But at the moment, the diagnosis rate in England is only 67% - lower than Scotland and Northern Ireland.

NICE guidance on Dementia recommends that 'Health and social care staff should aim to promote and maintain the independence, including mobility, of people with dementia. Care plans should address activities of daily living (ADLs) that maximise independent activity, enhance function, adapt and develop skills, and minimise the need for support'.

Reading Borough Council's 'Older People's Commissioning Strategy' is in development and recognises that good care and support transforms lives, it enhances health and wellbeing, increasing independence, choice and control. It is distinctive, valued, and personal.

All too often people experience services that are fragmented, poorly co-ordinated, and hard to navigate. Instead we need services that are personalised, of good quality, and much better co-ordinated and joined-up around the needs of the individual, with a parity of emphasis on our physical, mental, and other needs.

The council's new approach called "Right For You" or R4U begins with conversations rather than assessments, it builds on people's strengths and existing connections and is based on a what a 'Good Life' means to that person rather than 'Need' and 'services'.

Early onset dementia:

Services for dementia need to been tailored to the needs of the individual. Nationally:

  • 1 in every 20 people living with dementia is under 65 years old. 
  • 7 out of 10 people with dementia also have additional co-morbidities or disabilities.

Younger people living with dementia may have different needs for care to older people as they are:

  • Suffer from a rare or inherited form of dementia.
  • More likely to still be in work and / or have a partner in work when diagnosed.
  • Have dependent children and / or aging parents requiring care.
  • Have greater financial commitments such as a mortgage.
  • Be more physically fit and active.

Appropriate services should be accessible for both younger and older people with dementia.

In Reading, a specific care pathway has been developed for patients with early onset dementia as well as a pathway for those diagnosed over the age of 65; both take into account options for the patient and carers.

Reading Borough Council's Market Position Statement for Adult Social Care

Identifies what we are doing to increase provision for people with dementia and where there are currently gaps:

  • The need for Extra Care Housing that is suitable for people with dementia has already been identified, and the Council plans to work with providers to ensure Extra Care Housing is available that is suitable for people with dementia.
  • The Council's Quality Team is focusing on supporting quality among residential homes that specialise in dementia, to ensure there is enough provision for this group.
  • In Reading, there is reliance on a small number of providers for nursing care provision. 78% of nursing care beds for people with dementia in Reading are held in one home. Market failure in this area is therefore a significant risk and the council is looking to develop alternative options, by developing new provision in the borough.

This section links to the following sections in the JSNA:

Mental health

Common causes of death & disability

Residential & Nursing care provision

References

1 - Fernandez J-L and Forder J (2009) Analysing the costs and benefits of social care funding arrangements in England: technical report. Personal Social Services Research Unit: London

NICE guidance C42

Reading Older People's Needs Analysis (Draft).

Reading Older People's Commissioning Strategy (Draft)

Reading Health and Wellbeing Report, Dementia. 2014. 

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