Joint strategic needs assessment

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Dementia

Topic titleDementia
Topic ownerDementia Strategy Group
Topic author(s)Gill Oliver
Topic quality reviewedFeb 2014
Topic endorsed byDementia Strategy Group
Topic approved byDementia Strategy Group
Current version28.3.2014
Replaces versionJuly 2013
Linked JSNA topicsDepression, Carers
Insight Document ID106943

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Executive summary

Introduction

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Dementia is a term used to describe a range of brain disorders that have in common a loss of brain function that is usually progressive and eventually severe.  The most common types of dementia are Alzheimer’s disease, vascular dementia and dementia with Lewy bodies.  Some people have both vascular dementia and Alzheimer’s disease.

Dementia is one of the main causes of disability in later life and the number of people with dementia is rising yearly as the population ages.  Dementia can affect people of any age but is most common in older people, particularly those aged over 65 years. The number of people aged over 65 living with dementia in Nottingham is predicted to rise from 2914 in 2015 to 3096 in 2021.  This represents a 6% increase over 6 years.

This chapter considers the health and social care needs of people with dementia.  Other relevant links within the JSNA are to sections on Adult Mental Health (particularly Depression), End of Life, Older People with Long Term Conditions and Carers.

Dementia has become prominent in the last 5 years with the publication of two significant policy documents: the National Dementia Strategy in 2009 and the Prime Minister’s Challenge in 2012 (links below).

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/168220/dh_094051.pdf

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/215101/dh_133176.pdf

Unmet needs and gaps

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  • Improving diagnosis rates to meet the national target of 67% - including GP awareness, capacity in memory assessment services and using the acute hospital CQUIN, FAIR (Find, Assess and Investigate, Refer)
  • Awareness of dementia and support for people from BME communities and other minority groups
  • Provision of post diagnosis support  including:
    • Better, more accessible and timely information
    • Additional support for people of working age with a diagnosis of dementia
    • Issues of capacity in specialist mental health services especially in the context of increasing numbers of people with dementia
    • Crisis response and support
    • Support for carers
  • Better alignment with physical health services
  • Quality of acute hospital care for people with dementia and/or delirium
  • End of Life Care
  • Improving quality in Care homes
  • Increased awareness of dementia in primary and acute care

Recommendations for consideration by commissioners

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  • Support Dementia Friends and Dementia Friendly communities in line with national policy
  • Improve diagnosis rates to achieve 67% target
  • Better alignment with physical health services including diet and nutritional advice
  • Provision of post diagnosis support  including:
    • Better, more accessible and timely information
    • Additional support for people of working age with a diagnosis of dementia
    • Address issues of capacity in specialist mental health services especially in the context of increasing numbers of people with dementia
    • Crisis response and support
    • Support for carers
  • Continued development of knowledge and skills across health and social care
  • Ensure there is a robust care pathway for dementia
  • Review the recommendations of the EMPACT bed utilisation review and ensure intensive specialist dementia services are available in to reduce dependence on inpatient beds
  • To further engage with local service users, their carers and families, to help establish views on local service provision.
  • To update the EIA with local service information, to establish whether services are meeting the diverse needs of the local population to enable equity in access.

What do we know?

1. Who is at risk and why?

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Dementia is a term used to describe a range of brain disorders that have in common a loss of brain function that is usually progressive and eventually severe.  The most common types of dementia are Alzheimer’s disease, vascular dementia and dementia with Lewy bodies.  Some people have both vascular dementia and Alzheimer’s disease.

Alzheimer's Society - Types of Dementia

Who is at risk?

Dementia prevalence is associated with a number of factors, such as:

  • Age
  • Gender
  • Social class and educational achievement
  • Learning disabilities
  • BME groups

The prevalence of dementia increases with age and is higher in women than in men (as there are more older women than older men).  Women also have a slightly higher risk of developing Alzheimer’s disease, but have a lower risk than men of vascular dementia.  The number of people with dementia in Nottingham and Nottinghamshire is therefore estimated to be greatest in those aged over 75 years, especially women, since their life expectancy is greater.  The rate of cognitive problems has been found to be higher in people of lower social class and lower educational achievement1.  People with learning disabilities are at higher risk of developing dementia at younger ages.  For those with Down’s syndrome, dementia may develop between 30-40 years of age.  It is also noteworthy that 6.1% of all people with dementia among BME groups are early onset compared with 2.2% for the UK population overall, reflecting the younger age profile of BME communities2.

 What is the impact on health and wellbeing 

The onset of dementia is gradual and many people are not formally diagnosed, yet they may live with dementia for 7 to 12 years.  Early symptoms include loss of memory, confusion and problems with speech and understanding.  However, over time dementia significantly affects people’s ability to live independently, as a result of:

  • Decline in memory, reasoning and communication skills
  • Inability to carry out activities of daily living
  • Behavioural problems such as aggression, wandering and restlessness
  • Continence problems
  • Problems with eating and swallowing

Dementia places a particular burden on carers and family members.  Timely diagnosis and intervention is helpful, as it enables the person with dementia and their carer/s to come to terms with the disease and make plans for the future. Many of those with severe dementia, especially those over 85, have a combination of mental and physical problems3.

Many of the carers of older people with dementia are themselves elderly - up to 60 per cent are husbands or wives4.  Carers of people with dementia generally experience greater stress than carers of people with other kinds of need; nearly half having some kind of mental health problem themselves. However carer support and education can enable more people to live at home for longer and prevent carer breakdown, which is a major cause of people needing to move into long-term care.

What are the risks of not addressing dementia?

Due to the ageing population, the predicted increase in numbers of people with dementia in Nottingham is 6.9% in the next 6 years. It is estimated that in the period 2007- 2037:

  • The numbers of people with dementia will double
  • The costs of dementia will treble

The economic case for early diagnosis and intervention services in dementia claims that this approach is cost effective since it will reduce admissions to residential care5.

What are the benefits of timely diagnosis and intervention?

Diagnosis excludes other, treatable conditions with similar symptoms. For Alzheimer’s disease only, there are a number of cognitive enhancing medications which can help. For all dementias, timely diagnosis allows access to:

  • Advance care planning encompassing: medical, financial, social, housing, driving, end of life care
  • Access to information and support (dementia advisers, memory cafes, CMHTs, ,Assistive Technology, Home care, home support)
  • Review of physical health and co-morbidities
  • Access to peer and carer support

2. Size of the issue locally

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Prevalence

Prevalence is the number of people with dementia in the population. The rates below are derived from the Dementia UK report, 20072.

Figure 1: Prevalence rates for dementia in the UK by age group and gender (Source: Dementia UK 2007)

 

65-69
years

70-74
years

75-79
years

80-84
Years

85+
years

Males

1.5%

3.1%

5.1%

10.2%

19.7%

Females

1.0%

2.4%

6.5%

13.3%

25.2%

These prevalence rates have been applied to ONS population projections of the 65 and over population to give estimated numbers of people predicted to have dementia by CCG by 2015. Numbers in Nottingham are lower than the England average due to lower numbers of older people

Dementia Prevalence

over age 65

under age 65

Nottingham

2947

68

Source: PHInfo

Incidence

Incidence of dementia is the number of new people with dementia each year. The incidence in Nottingham is estimated as 833 new people per year.

Source: PHInfo

Numbers of people with dementia under age 65 are small, however current referrals to the service from Nottinghamshire CCGs are approximately 65 pa. It is recognised that people with dementia under age 65 are more complex and difficult to diagnose

Deprivation

Nottingham City has a high level of deprivation, compared to national levels.  Locally, 28.5% of older people aged 60 and over are affected by income deprivation, compared to approximately 20% nationally (Source: JSNA Demography chapter).  This increases the local risk of cognitive problems, including dementia.  This means that the dementia prevalence rate in the City may be an underestimate, or that the severity of dementia in Nottingham could be greater than that seen in less deprived areas.

People from BME groups

Nottingham City has a diverse population, with 25% identifying themselves as from an ethnic minority group. Nottingham’s BME population is younger than the average population; it is important to note that as this population ages, the number of dementia cases will increase quickly.  Young onset dementia is more prevalent in BME groups, which could have a notable impact in Nottingham City.

Other sources of information

The Department of Health has published a State of the Nation report on Dementia and an accompanying on-line map setting out information about dementia care, support and research across the country. Please note this is a work in progress. Links  to the report6 and online dementia map7 (accessed 30 Jan 2014) are:

https://www.gov.uk/government/publications/dementia-care-and-support

http://dementiachallenge.dh.gov.uk/map/

Notable changes in need since last JSNA (2010)

1. The dementia diagnosis rate has improved over the last 3 years.  Nottingham CCG now achieves a rate of 57.01% which is above the average diagnosis rate for England (45%).

2. The Dementia UK report based prevalence rates on an earlier study which has now been repeated. The Cognitive Function and Ageing Study8 (CFAS) has been repeated and published suggesting that the prevalence rate has reduced from 8.3% to 6.5% in over 65s. The impact of this on rates of prevalence and incidence is being worked on and will change the rates in Figure 1 above.  The number of people with a dementia will continue to rise due to the increasing older population, albeit at a lower rate.

3. Dementia is more frequently recorded as cause of death. The largest increase in both percentage and absolute terms is for dementia as the underlying cause which may partly reflect changes in underlying cause of death coding practice as well as a positive increase in number of people dying at home from ‘diseases of old age’9.

Depression vs. Dementia in the Elderly

Depression and dementia share many similar symptoms including memory problems, sluggish speech and movements and low motivation. There are some differences which can help to avoid misdiagnoses, although some people may have both conditions.

Symptoms of depression

Symptoms of dementia

Mental decline is relatively rapid

Mental decline happens slowly

Knows correct time, date and whereabouts

Confused and disorientated

Difficulty concentrating

Difficulty with short term memory

Language and motor skills are slow but normal

Writing and motor skills are impaired

Notices or worries about memory problems

Doesn’t notice memory problems or seem to care

Agitation

Agitation, wandering and challenging behaviour

Source: Helpguide: Smith, Robinson and Regal, 201310

See also JSNA section on Depression (older people’s section)

3. Targets and performance

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Diagnosis rates

The Prime Minister’s Challenge on Dementia aims to increase the diagnosis rate to 67% by March 2015. CCGs have had to submit plans to NHS England setting out trajectories for achieving the diagnosis rate. This is being monitored via the Quality Outcomes Framework (QOF) which includes:

  • A register of patients diagnosed with dementia
  • The percentage of patients diagnosed with dementia whose care has been reviewed in a face-to-face review in the preceding 12 months
  • The percentage of patients with a new diagnosis of dementia recorded in the preceding 1 April to 31 March with a record of Full Blood Count (FBC), calcium, glucose, renal and liver function, thyroid function tests, serum vitamin B12, and folate levels recorded between 6 months before or after entering on to the register

Performance has improved over the last 3 years. Nottingham City CCG now achieves a rate of 57.4% which is above the average diagnosis rate for England (45%).  The method of calculating the diagnosis rate has changed and now takes into account numbers of people in nursing and care homes, therefore the diagnosis rate from the dementia map of 57% implies an expected number of 2,951 rather than 2,932. www.dementiachallenge.dh.gov.uk/map/

Note: Figures in this JSNA are provided by Public Health Information (PHInfo) based on the table in Section 2.

Figure 2

Nottingham City Dementia Diagnosis rates

 

2010/11

2012/13

 

Obs

Exptd

% rate

Obs

Exptd

% rate

Nottingham CCG

1417

2769

51.2%

1682

2932

57.4%

Source:PHInfo

Other mechanisms in place to  improve diagnosis rates are:

  • Enhanced service in 2013/14 are to encourage GP practices to:
    • identify patients at clinical risk of dementia;
    • offer an assessment to detect for possible signs of dementia in those at risk;
    • offer a referral for diagnosis where dementia is suspected; and,
    • support the health and wellbeing of carers for patients diagnosed with dementia

            Facilitating Timely Diagnosis and Support for People with Dementia

  • NHS Health Check Programme introduced in April 2009, offers advice and support to help people aged 40-74 make changes that can reduce the risk of ill health, including vascular dementia. Since April 2013, people in England aged 65-74, should be given information about dementia and the availability of memory services. The NHS Health Check dementia leaflet has been developed to support the dementia information given to those aged 65-74 years of age during their appointment.

NHS Health Check Dementia Leaflet

  • Acute hospital CQUIN - Improving dementia and delirium care, including sustained improvement in Finding people with dementia, Assessing and Investigating their symptoms and Referring for support (FAIR). People aged over 75 who are admitted to an acute hospital as an emergency are asked the ‘dementia question’: ‘Have you/ has the person been more forgetful in the last 12 months to the extent that it has significantly affected their daily life?’ The results are available on the online map (link below)

www.dementiachallenge.dh.gov.uk/map/

4. Current activity, service provision and assets

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Dementia mainly affects older people, especially people aged over 85. Therefore many people with dementia, and their carers, also experience physical health problems which require an integrated approach wherever possible. Services for people with dementia are provided by a very broad spectrum including the NHS, social care, independent and third sector provision. The section below is an overall summary of the services available

Dementia Awareness and Dementia Friendly Communities

Nottingham is an Age Friendly City and a member of the Dementia Action Alliance which aims to promote dementia awareness among a wide range of agencies e.g. Police, Fire Service, shops etc The local action plan is available on the website (below). This includes promoting Dementia Friends training and dementia friendly practices (again link below).

www.dementiaaction.org.uk
www.dementiafriends.org.uk

Community and third sector organisations play an important role in providing support and care to dementia patients, and to their carers and families.  There are many activity groups, both commissioned and voluntary, that support this community.  For example, walking groups, craft activities, peer support groups for carers and respite services.  More details can be found in the Self Help Nottingham directory.

http://www.selfhelp.org.uk/notts-directory/

General Social Care Services

Nottingham City Council’s Adult Support and Health department commissions a range of services that enable people to live at home independently before or after diagnosis. These include:

Advocacy, Home Care, Day services, Meals at Home, Carer Support, Telecare. Further information is available at: Nottingham City Council How to access our Social Care Services

Primary Care and Community Health services

Primary care and community health services are increasingly operating more integrated, locality based models which are inclusive in caring for people who may also have dementia, specifically intermediate care services. Community health services are provided by Nottingham CityCare at:

www.nottinghamcitycare.nhs.uk

Diagnosis         

People seeking a diagnosis initially contact their GP who will undertake tests to exclude other causes and refer them, where appropriate, to the memory assessment service.  GPs will follow the local Guidelines for the Prevention, Early Identification and Management of Dementia10.  Services provided at diagnosis are:

  • Memory Assessment Service providing assessment, diagnosis and care planning, including a working age dementia service
  • Prescribing of anti-dementia medication for Alzheimer’s disease where appropriate
  • Alzheimer’s Society attend memory clinics and give advice following diagnosis including a follow-up telephone contact if appropriate

Support after diagnosis (plus other support listed below)

  • Ongoing support from GP including annual reviews
  • Dementia Cafes and Carers Information sessions
  • Cognitive Stimulation Therapy

Specialist dementia care

Specialist dementia care is provided by Nottinghamshire Healthcare NHS Trust’s Mental Health Service for Older People (MHSOP).  MHSOP provides care for those of any age with dementia and those over 65 with moderate and severe functional mental health conditions (except people with a Learning Disability who are cared for by LD services.). The focus is on managing people within the community rather than inpatient care wherever possible.  Services are provided with an ethos of positive risk taking and recovery focused care. Dementia services include:

  • Memory Assessment services
  • Community mental health services
  • Sessional day services including Cognitive Stimulation Therapy
  • Specialist inpatient dementia care (acute and challenging behaviour)
  • Psychological assessment and treatment
  • Working Age Dementia
  • Intensive Recovery Intervention Service (acute and challenging behaviour)
  • Specialist dementia outreach to support care homes
  • Rapid response liaison psychiatry to support acute hospitals (Nottingham University Hospitals)

More information about specialist dementia services is available at:

http://www.nottinghamshirehealthcare.nhs.uk/our-services/local-services/mental-health-services-for-older-people/

 

Carers – see carers section of JSNA for information about:

Nottingham City CCG commissions a Dementia Advice and Support Service from the Alzheimer’s Society.  This service works with primary care to provide information, advice and support to newly diagnosed dementia sufferers and their families and carers.

Advocacy services for individuals and their families with dementia have been commissioned; the Your Voice Your Choice service is provided by POhWER and Age UK.

Specialist Respite Service

Specialist emergency and planned respite for carers of people with dementia.

Time out Care Services

The service offers respite for carers looking after older people from the African and African Caribbean community by the provision of care services in the home of the person cared for.

Details on other carer’s services can be found in the Carer’s JSNA chapter.

Care at Home

Nottingham City Council’s Adult Support and Health department commission General Social Care services (see above) and Community Support Services including:

  • Assessment & Care management, Personal Budgets and Direct Payments
  • Extra Care housing i.e. long term supported housing for older people within which people can receive varying packages of support, in order to reduce residential and nursing care admissions
  • The Jack Dawe service which provides specialist dementia  home care for people living with dementia in Nottingham City, as well as support for their carers. Jack Dawe aims to enable people living with dementia to continue to have choice and control in their own preferred lifestyle.  The service has several teams to help meet the cultural and gender specific needs of people with dementia, including staff who can speak multiple languages and from a variety of ethnic and cultural backgrounds.

Other services include:

  • Independent sector home care providers
  • Third sector provision to support people at home provided by the Age UK, Crossroads, Radford Care Group and similar organisations

Care in Acute Hospitals

The role of acute trusts needs to be recognised more and services made much more dementia friendly. In particular some polices especially in relation to ‘safety’ issues may unintentionally make thing worse for people with dementia. Specific services are:

  • Screening of people aged over 75 and admitted as an emergency
  • Recognition of the needs of frail older people with dementia and physical health needs, including medical wards which specialise in caring for people who also have dementia and/or delirium
  • Rapid Response Liaison Psychiatry teams to support  Nottingham University Hospitals

 

Care Homes

Approximately one third of people with dementia live in a care home or nursing home. The City Council Adult Support and Health department can advise on residential and nursing home placements and runs some homes directly.

http://www.nottinghamcity.gov.uk/residentialcare

Specialist dementia outreach is commissioned by the Nottingham City CCG to support care homes (provided by specialist nurses, NHCT)

 

Dementia activity

Dementia services are not usually separately identified since they are woven into older people’s services in general, or are integrated with other older people’s mental health services. It is therefore difficult to separate out specific dementia activity. Activity for older people’s mental health services in 2011/12 and 2012/13 is set out below. Approximately 50% of this activity is related to dementia. Work is underway to collect dementia and other older people’s mental health activity separately and this will be available in future JSNAs.

Figure 3: Activity for Specialist Older People’s Mental Health Services

Nottingham City  CCG

2011/2012

2012/2013

2013/14

Community contacts

15221

14026

15226

Number of patients

2126

2162

2265

Average contacts per patient

7

6

6

Inpatient bed days

12289

11373

9700

Number of inpatients

156

173

165

Average bed days per patient

79

66

59

Source: Newark & Sherwood CCG

The table demonstrates a reduction in inpatient care. Some intermediate care is provided by Nottingham Citycare for people with dementia.

5. Evidence of what works (what we should be doing)

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Prevention

The evidence for preventive strategies is inconclusive.  Key prevention messages, similar to those for stroke, can be of benefit for people who may be at risk of vascular dementia, including:

  • Diet – eat healthily
  • Body – be physically active
  • Health checks – manage blood pressure, blood cholesterol, blood sugar and weight.
  • Social life – participate in social activities.
  • Habits – avoid tobacco smoke and only drink alcohol in moderation.
  • Head – protect your head from injury.
  • Brain – keep your brain active

Cause

Research is taking place into the causes of dementia and the G8 summit gave undertaking commitment to develop a cure or treatment by 2025. http://dementiachallenge.dh.gov.uk/2013/12/12/g8-dementia-summit-agreements/

Cure

At present there is no cure for dementia. Medication can help and the following drugs are approved for use in Alzheimer’s disease only: donezepil, galantamine, rivastigamine and memantine. Local clinical guidelines are available on the Nottinghamshire APC website:

 http://www.nottsapc.nhs.uk/index.php/clinical-guidelines

Diagnosis & Care

There is a developing evidence base on how best to diagnose and then support people with dementia and their carers. Most of this is set out in NICE-SCIE Guideline on supporting people with dementia and their carers in health and social care published in 2007 (link below).

Timely diagnosis is recommended to allow the person with dementia and their carers to ensure they have an accurate diagnosis, access information and support, make plans for the future.

CT and MRI scans may be used in diagnosis where appropriate. PET scans are recommended for use in highly selected patients with cognitive impairment where i) Alzheimers dementia (AD) is a possible diagnosis but this remains uncertain after comprehensive evaluation by a dementia expert and conventional imaging (usually in people aged under 65)11. Local GP referral guidelines have been developed and are regularly reviewed12.

NICE guidance recommends both pharmacological treatments (see Cure above) and non-pharmacological support including e.g. Cognitive Stimulation Therapy (CST), therapeutic use of music/dancing, communication.

http://www.scie.org.uk/publications/misc/dementia/dementia-fullguideline.pdf

National Dementia Strategy, Living Well with Dementia, 2009

Due to the lack of an effective treatment for dementia, the national strategy focussed on living well with dementia i.e. how services can be organised to enable people to live well with the condition.

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/168220/dh_094051.pdf

Prime Minister’s Challenge, 2012

The Prime Minister’s challenge focuses on way to make people more aware about dementia, reduce stigma,  create dementia friendly communities and promote research

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/215101/dh_133176.pdf

Research

In addition to research about the cause and possible cures for dementia, there is a fruitful area of research nationally, into the best ways to care for people with dementia. Examples include: coping with challenging behaviour, what makes a good home care service, use of assistive technology, care homes and the creative arts and dementia. Some of this research being carried out locally at the Institute of Mental Health, University of Nottingham.  http://www.institutemh.org.uk/

The IMH and specialist dementia services are encouraging people with dementia to take part in research.

Prevention

The evidence for preventive strategies is inconclusive.  Key prevention messages, similar to those for stroke, can be of benefit for people who may be at risk of vascular dementia, including:

  • Diet – eat healthily
  • Body – be physically active
  • Health checks – manage blood pressure, blood cholesterol, blood sugar and weight.
  • Social life – participate in social activities.
  • Habits – avoid tobacco smoke and only drink alcohol in moderation.
  • Head – protect your head from injury.
  • Brain – keep your brain active

Cause

Research is taking place into the causes of dementia and the G8 summit gave undertaking commitment to develop a cure or treatment by 2025. http://dementiachallenge.dh.gov.uk/2013/12/12/g8-dementia-summit-agreements/

Cure

At present there is no cure for dementia. Medication can help and the following drugs are approved for use in Alzheimer’s disease only: donezepil, galantamine, rivastigamine and memantine. Local clinical guidelines are available on the Nottinghamshire APC website:

 http://www.nottsapc.nhs.uk/index.php/clinical-guidelines

Diagnosis & Care

There is a developing evidence base on how best to diagnose and then support people with dementia and their carers. Most of this is set out in NICE-SCIE Guideline on supporting people with dementia and their carers in health and social care published in 2007 (link below).

Timely diagnosis is recommended to allow the person with dementia and their carers to ensure they have an accurate diagnosis, access information and support, make plans for the future.

CT and MRI scans may be used in diagnosis where appropriate. PET scans are recommended for use in highly selected patients with cognitive impairment where i) Alzheimers dementia (AD) is a possible diagnosis but this remains uncertain after comprehensive evaluation by a dementia expert and conventional imaging (usually in people aged under 65)11. Local GP referral guidelines have been developed and are regularly reviewed12.

NICE guidance recommends both pharmacological treatments (see Cure above) and non-pharmacological support including e.g. Cognitive Stimulation Therapy (CST), therapeutic use of music/dancing, communication.

http://www.scie.org.uk/publications/misc/dementia/dementia-fullguideline.pdf

National Dementia Strategy, Living Well with Dementia, 2009

Due to the lack of an effective treatment for dementia, the national strategy focussed on living well with dementia i.e. how services can be organised to enable people to live well with the condition.

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/168220/dh_094051.pdf

Prime Minister’s Challenge, 2012

The Prime Minister’s challenge focuses on way to make people more aware about dementia, reduce stigma,  create dementia friendly communities and promote research

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/215101/dh_133176.pdf

Research

In addition to research about the cause and possible cures for dementia, there is a fruitful area of research nationally, into the best ways to care for people with dementia. Examples include: coping with challenging behaviour, what makes a good home care service, use of assistive technology, care homes and the creative arts and dementia. Some of this research being carried out locally at the Institute of Mental Health, University of Nottingham.  http://www.institutemh.org.uk/

The IMH and specialist dementia services are encouraging people with dementia to take part in research.

6. What is on the horizon?

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

Dementia is one of the main causes of disability in later life and the number of people with dementia is rising yearly as the population ages. Nottingham City has a smaller proportion of older people than the County, therefore the dementia prevalence rate does not increase so dramatically.

Prevalence of dementia

The number of people aged over 65 living with dementia in Nottingham is predicted to rise from 2958 in 2015 to 3164 in 2021.  This represents a 6.9% increase over 6 years.

Figure 4 Dementia prevalence over 65

CCG

2015

2016

2017

2018

2019

2020

2021

Nottingham

2958

2979

3012

3046

3087

3124

3164

Source: PHInfo

The number of people living with dementia aged under 65 is far smaller however this will  increase by 7% over the same period.

Figure 5 Dementia prevalence under 65

CCG

2015

2016

2017

2018

2019

2020

2021

Nottingham

69

69

70

71

72

73

74

Source: PHInfo

The Dementia UK report based prevalence rates on an earlier study which has now been repeated. The Cognitive Function and Ageing Study (CFAS) mentioned above has been repeated and published suggesting that the prevalence rate has reduced from 8.3% to 6.5% in over 65s8. The impact of this on rates of prevalence and incidence is being worked on and will change the rates in Figures 4 and 5 above.  Numbers will continue to rise due to the increasing older population but at a lower rate.

Incidence of dementia

Incidence of dementia is the number of new people with dementia. The incidence of dementia is also expected to rise and people are expected to be diagnosed earlier thus increasing the number of people diagnosed.  The incidence of dementia in Nottingham is predicted to rise from an estimated 833 in 2015 to 892 in 2021. 

Figure 6 Dementia incidence over 65

CCG

2015

2016

2017

2018

2019

2020

2021

Nottingham

833

840

850

859

870

881

892

Numbers of people with dementia under age 65 are small however current referrals to the service from Nottinghamshire CCGs are approximately 65 p.a. It is recognised that people with dementia under age 65 are more complex and difficult to diagnose

7. Local views

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A number of consultation events were held in 2010-2012 which have informed the development of new services in Nottingham City, the top 3 priorities from this work were:

  • Increased awareness among health and social care staff
  • Increased access to memory assessment services
  • Specialist dementia support at home (Intensive Recovery Intervention Service)

There is a need for further engagement work with local dementia service users and their carers.  The feedback below comes from small pieces of local engagement work, the views from which may not be fully representative of all service users or their carers and may now be out of date.

Radford Care Group – Carer’s Support Group feedback – May 2012

A small consultation was held with members of the Radford Care Group, to gather their views on the group and how it could be improved.  See below for a summary of the comments received:

  1. The group helps me as a carer by: providing support; signposting to other services and information; enabling me to meet other carers.
  2. The group could be improved by: enabling some small group discussions / some 1:1 time for questions so the agenda can be kept on track; otherwise, it is fine as it is.

What does this tell us?

8. Unmet needs and service gaps

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Unmet needs and service gaps include:

  • Improving diagnosis rates to meet the national target of 67% - including GP awareness, capacity in memory assessment services and using the acute hospital CQUIN, FAIR (Find, Assess and Investigate, Refer)
  • Awareness of dementia and support for people from BME communities and other minority groups
  • Provision of post diagnosis support  including:
    • Better, more accessible and timely information
    • Additional support for people of working age with a diagnosis of dementia
    • Issues of capacity in specialist mental health services especially in the context of increasing numbers of people with dementia
    • Crisis response and support
    • Support for carers
  • Better alignment with physical health services
  • Quality of acute hospital care for people with dementia and/or delirium
  • End of Life Care
  • Improving quality in Care homes
  • Increased awareness of dementia in primary and acute care

9. Knowledge gaps

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Activity information available for dementia services

Equalities information for local population, particularly people with a learning disability

Evidence of effectiveness of preventative services

The impact of increasing levels of alcohol dependency in the City on dementia prevalence


 

What should we do next?

10. Recommendations for consideration by commissioners

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  • Support Dementia Friends and Dementia Friendly communities in line with national policy
  • Improve diagnosis rates to achieve 67% target
  • Better alignment with physical health services including diet and nutritional advice
  • Provision of post diagnosis support  including:
    • Better, more accessible and timely information
    • Additional support for people of working age with a diagnosis of dementia
    • Address issues of capacity in specialist mental health services especially in the context of increasing numbers of people with dementia
    • Crisis response and support
    • Support for carers
  • Continued development of knowledge and skills across health and social care
  • Ensure there is a robust care pathway for dementia
  • Review the recommendations of the EMPACT bed utilisation review to ensure intensive specialist dementia services are available in the community to reduce dependence on inpatient beds
  • To further engage with local service users, their carers and families, to help establish views on local service provision.
  • To update the EIA with local service information, to establish whether services are meeting the diverse needs of the local population to enable equity in access.

Key contacts

References

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  1. Refere Ott, A. et al (1995), Prevalence of Alzheimer’s Disease and vascular dementia: association with education. The Rotterdam Study cited in Audit Commission (2000) Forget Me Not. Available at www.audit-commission.gov.uk/health/nationalstudies/socialcare/pages/forgetmenot_copy.aspx
  2. Personal Social Service Research Unit (2007) Dementia UK: The Full Report - A report into the prevalence and cost of dementia. London School of Economics and the Institute of Psychiatry, King’s College London, for the Alzheimer’s Society. Available at http://alzheimers.org.uk/site/scripts/download.php?fileID=2
  3. Audit Commission (2000) Forget Me Not. Available at www.audit-commission.gov.uk/health/nationalstudies/socialcare/pages/forgetmenot_copy.aspx
  4. Levin, E., Moriarty, J. and Gorbach, P. (1994) Better for the Break Cited in Audit Commission (2000) Forget Me Not. Available at www.audit-commission.gov.uk/health/nationalstudies/socialcare/pages/forgetmenot_copy.aspx
  5. The clinical and economic case for early diagnosis and intervention services in dementia, Department of Health, November 2009
  6. Dementia A state of the nation report on dementia care and support in England, November 2013, DH available at https://www.gov.uk/government/publications/dementia-care-and-support
  7. Putting Dementia on the map, DH, 2013 available at http://dementiachallenge.dh.gov.uk/map/
  8. Matthews, F. et al, (2013),  A two-decade comparison of prevalence of dementia in individuals aged 65 years and older from three geographical areas of England: results of the Cognitive Function and Ageing Study I and II
  9. Review of mortality across Mid Nottinghamshire Clinical Commissioning Groups, CCG paper, 2013
  10. Nottinghamshire Healthcare NHS Trust, Helpguide: Smith, Robinson and Regal, 2013
  11. NHS Commissioning Board, Facilitating Timely Diagnosis & support for people with dementia
  12. Nottinghamshire CCGs, Guidelines for the Prevention, Early Identification and Management of Dementia, revised 2013

Glossary