Facts and Figures

Figure 1 gives information about the current population of older people in Newcastle upon Tyne and estimates the number of people likely to have dementia, assuming national trends are reflected locally. The table is based on the Office of National Statistics population mid-year estimate 2005. 

Figure 1: Predictions of population and prevalence of dementia in Newcastle upon Tyne

 

• Dementia UK 2007 reports that nationally there are 11,392 people from Black and Minority Ethnic Groups (BME) with dementia and that 6.1% of all people with dementia among the BME groups are young onset, compared with only 2.2% for the UK population as a whole, reflecting the younger age profile of BME communities.
• Prasher, 1995 suggests that the following percentages of people with Down's syndrome have dementia:

30-39 years:  2%

40-49 years:  9.4%

50-59 years:  36.1%

60-69 years:  54.5%

• The prevalence of people with dementia in other forms of learning disability is also higher than in the general population.  Some studies (Cooper, 1997, Moss and Patel 1993) suggest that 13% of 50+ years and 22% of 60+ years with learning disabilities not due to Down's syndrome have dementia. This is about 4 times higher than the general population.
• Approximately 20% of the population of people with learning disability (PWLD) have Down's Syndrome (DS)
• Estimated numbers of PWLD in Newcastle Upon Tyne based on the census data of April 2001:

NB: liable to be an overestimate as there is a differential death rate in the population of people who have severe LD and in those who have neurological involvement.

• Estimated number of people in Newcastle upon Tyne who have Down's Syndrome, at the ages where incidence of dementia has been described (includes numbers of people known to services):

 

Trends

• The number of people with dementia in the UK is forecast to rise by 38% over the next 15 years and 154% over the next 45 years.
• The prevalence rates above have been applied to ONS 2004 mid year population predictions to estimate the numbers of people estimated to have dementia in future

Dementia prevalence rates are based on (Dementia UK).

• In 2008, 1,425 people aged 85 and over are estimated to have dementia, and this is likely to rise by 550 to 1,975 in 2025.
• In total, between now and 2025 an estimated additional 673 people (of all ages) are likely to have dementia in Newcastle upon Tyne.

Targets

• Social Services key performance indicators for older people are described with targets in Appendix 1. Newcastle City Council has also adopted some local indicators that support the mental wellbeing of older people:
  • The percentage of people who say they feel safe in their own home
  • The percentage who say they have as much contact with other people as they want
  • The percentage who say they feel in control or have services which help them feel in control of their life.

Performance

The Draft Older People strategy includes a summary of Social Care Indicators relating to services for older people. For the majority of the indicators Newcastle upon Tyne appears to be doing well, graded as 'good' (four star) or 'very good' (five star) by CSCI[1]. The following table presents only the exceptions to this generally high standard.

The full table (see appendix 1 of the strategy) includes several other areas graded with three stars (acceptable). These are not included because 'acceptable' is the highest CSCI grade in that area.

Standards of Care

In 2004 the then Northumberland, Tyne and Wear Strategic Health Authority commissioned a 'Horizontal Review' of Older Peoples Mental Health Services which was completed in December 2005. This resulted in the development of common standards of care that Older Peoples Mental Health Services would expect to be delivered and tools to assist in workforce development to help attain those standards.  It was intended that these standards shape the local development of services:

1. Health Promotion and Mental Ill-Health Prevention
2. Primary Care
3. Crisis and Urgent Care Management
4. Community Teams and Care Co-ordination
5. Promoting Independence
6. Comprehensive and Accessible Care
7. Specialist Care
8. Preventing Suicide
9. Carer Support and Care
10. End of life care

(Draft strategy for the mental health and wellbeing of older people Version for 18th July 2007)

Examples of current initiatives under each standard include:

Standard One - health promotion and mental health prevention

• 'Active Ageing Group', which reports to the Older People's Local Implementation Team.
• Holistic health check piloted at Walker Medical Group. Plans to extend citywide.
• Dementia Care Partnership (DCP) at The Bradbury Centre work with local people to promote positive mental health through integrated, inclusive facilities e.g. dancing, fitness and complementary therapies. DCP have also gained Social Enterprise Pathfinder status, which will provide opportunities for intergenerational work and meaningful occupation for older people. Information and advice is offered to local people regarding mental health issues and they are signposted to relevant resources and/or services.
• The SEARCH project, supported by the council and Newcastle PCT, provide information and support to promote wellbeing and health.
• Newcastle PCT support 'Community Health Trainers' as part of the 'Choosing Health' agenda, they provide support to help people make better health choices. The team make the links between promoting mental and physical well being.

Standard Two - Primary Care

• Protocols in place for dementia and depression within G.P. practices although there is recognition that their use needs to be encouraged
• 'Guidelines for the Detection, Management and Referral of Dementia in Primary Care' in place.
• Establishment of Community Mental Health Teams for Older People by NTW NHS Trust to facilitate closer working relationships with primary care.
• Mental health liaison systems in place to ensure that the mental health needs of older people are addressed within rehabilitation and intermediate care services; for example dedicated input into the Community Resource Teams and Community Rehabilitation Teams.

Standard Three - Crisis and Urgent Care Management

• Access to urgent care through the Crisis Assessment Team, whereby people receive an assessment out of hours.
• Emergency Duty Team which is able to respond in crisis situations.
• Resource Centre (Byker Lodge) specifically to meet the needs of older people with dementia. 24 hour service is able to provide both planned and emergency placements.
• Community Care Alarm System available to people to summon urgent help either via their family carers, community wardens or emergency services. The North East Ambulance Service is in the process of developing a register of vulnerable adults

Standard Four - Community Teams and Care Coordination

• Older People's Specialist Mental Health Services reviewed and work is progressing to improve the delivery of services.
• The Redesign and Modernisation Project for Older People Mental Health Services within NTW NHS Trust working to develop separate units for people with dementia and those with functional illness to enable people's needs to be met more appropriately. Specialist services include: In patient units, Day hospitals, High Dependency Unit, Assertive Outreach Team, Community Mental Health Teams, Memory Assessment/Memory Management, Liaison Service, Early Onset Dementia Service, Challenging Behaviour Service

Standard Five - Promoting Independence

• The rehabilitation and intermediate care service aim to promote independence and deliver services close to home.
• Domiciliary Care is provided by both social services in house and independent sector services on a generalist basis. 79 people supported by Dementia Care Partnership (DCP) @ May 2007
• DCP have gained 'pathfinder' status to enable them to transform existing services into social enterprises involving service users and carers taking an active role in planning, developing and delivery of services.
• Day Care (generalist)- 71 day care places available daily in social services resource centres and 100 places per day commissioned by social services from the independent sector.
• Specialist Day Care provided by DCP - a total of 243 places per week. Social Services contract with the Alzheimer's Society to provide 191 places per week for people with dementia.
• Respite Care provided by Social Services within 4 Resource Centres, one of which specialises in care for older people with mental health problems (Byker Lodge).
• The independent sector provides respite care (spot purchased by social services) for younger people with dementia and BME groups. Resource currently is under used. .
• Numbers of BME elders is relatively small and there are currently some support groups in the community. 'Information NOW' is working with the Health and Race Equality Forum to both offer and gain information. The Quality of Life Partnership to deveelop a sub group regarding the needs of BME elders.
• Independent Supported Living commissioned by social services and provided by DCP- currently 45 tenancies. Particularly valuable for younger people with dementia and people whose needs can be more challenging within a larger setting.

Standard Six - Comprehensive and Accessible Care

• Extra Care Housing Scheme with 44 tenancies. Approximately 25% of residents in earlier stages of dementia and additional training for staff arranged. Second scheme planned to provide further 40 tenancies.
• Mental health awareness incorporated in Newcastle hospitals' staff study days although more training is required regarding dementia and meeting the needs of people whose behaviour challenges services.

Standard  Seven - Specialist Care

• 353 Elderly Mentally Infirm (EMI) social care beds in the city and 306 EMI nursing beds. The majority of residents are placed by social services and contractual arrangements are in place, they are reviewed on an annual basis, a small number are placed by other Local Authorities.
• The Northumberland Tyne and Wear NHS Trust provide a range of specialist services in Newcastle upon Tyne.

Standard Eight - Preventing Suicide

• A local Suicide Prevention Strategy is in place - working together to save lives. There is a strong emphasis on staff awareness and training which needs to take place at all levels, particularly as the strategy indicates that three quarters of people who kill themselves are not in contact with any mental health specialist before taking their lives.

Standard Nine - Carer Support and Care

• A Carers Strategy is place which is monitored by the Newcastle Carers Strategy Group.
• In partnership, Newcastle Healthy Cities Project, Newcastle Social Services and the PCT have developed a carer's centre offering activity and support. Social Services and the PCT have jointly funded a support worker to work specifically with carers of people with mental health problems.

Standard Ten - End of Life Care

• End of Life Care Home Project: 12 month project commenced January 2007 working with 10 care homes (3 of which have EMI residents) in Newcastle upon Tyne to improve the quality of end of life care and reduce admissions to secondary care at the end of life.
• Palliative Care Courses run by Newcastle PCT Palliative Care Team for Registered District and Community Nurses, Registered Nurses working in the Care Home Sector,
• Unregistered nurses working in the community and care home sector and Social Services Care Staff.
• Within the ESMI units the Liverpool model of end of life care has been adopted (recognised as the gold standard).

SPECIAL GROUPS

Younger people with dementia

• A service for younger people with dementia established in Newcastle upon Tyne in 1997 to provide multidisciplinary assessment, care management and ongoing support to people under 65 years of age, with a diagnosis of dementia, the service 'sits' within Old Age Psychiatry. The team, consists of WTE Social Worker, Community Psychiatric Nurse and Occupational Therapist and designated time from a Consultant Psychiatrist. Currently working with 39 people with dementia and their carers -17 are receiving support of the team alone, 10 attend day care, 13 receive personal care support and 5 receive residential short breaks.

People with Learning disability and dementia

People who have a learning disability and who develop problems associated with ageing continue to receive services from specialist health and social care community teams. In addition they access the range of specialist health treatment services for older adults.

 

 

[1] Commission for Social Care Inspection

Local Views

A number of focus groups involving service users and carers in Newcastle Upon Tyne have highlighted the following issues:

• Current information provided for older people in the community and in primary care needs to be more timely and accessible. Once in contact with specialist services; information is provided in a timely and supportive way regarding mental health conditions.
• The carers were concerned about guidelines in prescribing anti dementia drugs and anxious that people with dementia have access to drugs which could help them to manage their condition. Some of the older people considered that it is important that they have family members with them when discussing issues about health and treatment, so that they can talk about it afterwards.
• Some service users and carers had not been aware that they could approach social services for an assessment of their care needs. They wanted their needs recognised 'I need the right sort of help, I want to get into the bath, not just sit on a bath seat' and 'I would like someone to take me for a walk, even once a month, to look at a few shops.'
• Service users and carers were positive about their contact with the professionals involved in their care. People wanted to understand what is wrong with them and said that they 'need someone to talk to who understands'. People wanted continuity of care and to be able to speak to a 'regular social worker'.
• The service users who had experienced hospital treatment felt that they had been 'listened to' and staff had taken time to explain their medication/treatment. A carer had experienced a situation where staff, in a general hospital had not been aware of the needs of the person with dementia, for example, in reminding them to eat their meal. The 'care of elderly' wards were considered to usually be responsive to the needs of people with dementia and the Alzheimer's Society has provided training to both qualified and unqualified staff.
• The service users consulted, generally enjoyed day care, valued the support of the staff and were positive about the activity offered. Some saw it as an important way to give their carers a break but they would like a mixture of individual support and day care. Declining mental and physical health is resulting in reduced independence, when people can no longer use public transport or go out without help. All the groups emphasised their need to be involved in 'normal activity' for example; going to the shops, garden centres and to church. One man made a significant comment 'I want to get out more, I went on a trip last year and it was great, I hadn't seen the coast for 20 years.'

The group of Asian women consulted in developing this strategy expressed a preference for separate services such as day care and sheltered housing to be available to them.

National and Local Strategies

The key pieces of legislation which inform the provision of services for older people are as follows:

• Mental Health Act 1983
• Mental Capacity Act 2005
• Carers Recognition and Services Act 1995
• NHS & Community Care Act 1990
• Community Care Act Delayed Discharge 2003
• Care Standards Act 2000
• Community Care Direct Payments Act 1996
• Chronically Sick and Disabled Persons Act 1970
• Disabled Persons Act 1986
• Health Act 1999
• Local Authority Social Services Act 1970

The key policy drivers which inform the way in which Council's deliver their services and against which they are judged and rated by external inspection agencies are:

• Everybody's Business - Integrated mental health services for older adults, a service development guide. 2005
• Our Health, Our Care, Our Say 2006
• Fair Access to Care Services DoH 2002
• National Service Framework for Older People 2001
• Choosing Health: Making Healthier Choices Easier DoH 2004
• Commissioning framework for health and wellbeing 2007
• NICE guidelines (Nov 2006) Dementia - supporting people with dementia and their carers in health and social care.
• Dementia UK 2007 - A report into the prevalence and cost of dementia by the PSSRU.
• Securing better mental health for older adults DoH 2005
• No Secrets DoH 2000 

In addition are the Standards of Care covered in the section 'Performance'. See page 4.  (Draft strategy for the mental health and wellbeing of older people Version for 18th July 2007)

Current Activity and Services

Current services

In considering service provision it is difficult to assess how many older people with mental health problems are receiving care and support in generalist services.  The Strategy has acknowledged it is a 'whole system issue' and it is entirely appropriate that people receive care appropriate to their needs and wherever possible this should be inclusive and mainstream, providing continuity of care for the person.  System improvement is required to collect more detailed information about service users within generalist provision.  The information below therefore focuses mainly on specialist services. Costs reflect those able to be established at this time.

What are the key inequalities

The key risk factors are:

• Age
• Poverty
• Isolation
• Ill health
• Living alone
• Unfit housing or rundown neighbourhoods

What are the key gaps in knowledge / services?

The draft strategy for older people includes a detailed list of gaps to be addressed (included in full in the final 'What next' section).

Broadly these cover:

• Using existing tools and services such as the use of existing protocols to screen for, and treat, mental health problems in older people.
• Recording information - across primary and specialist care to enable better planning.
• Developing the workforce to have the skills to support this group of people, including appropriate care in acute hospitals.
• Capacity - including access to assessment, therapy, support, 24hr care, intermediate care etc.

What are the risks of not delivering our targets?

• People with dementia receiving sub-standard care
• Under-diagnosis - people with dementia not receiving access to treatment
• Lack of support services available to help maintain the independence of people with dementia.
• Lack of social and community participation for older people, particularly for those most at risk of isolation and exclusion.
• People going into long-term care too early or admitted to hospital when a bit more support in the community could have prevented it
• Older people with dementia becoming decreasingly satisfied, lonelier and more depressed

Is what we are doing working?

There are many initiatives in place, but there are a considerable number of areas that still require action. See Draft Strategy for the mental health and wellbeing of older people version 4, 18th July 2007.

What is coming on the horizon?

The predicted increase of an additional 673 people with dementia by 2025 includes some 550 aged over 85. This group are likely to have other health and social care needs thus the care burden and service needs associated with dementia will be both high and complex, needing to work with a range of other services aimed at older people.

The DOH have recently finished their public consultation on a National Dementia Strategy and implementation plan to address three key themes - raising awareness, early diagnosis and intervention and improving the quality of care. This is due for publication in October 2008.

What should we be doing next?

1. Primary care protocols to screen for and treat mental health problems in older people need to be used more widely.

2. Improve the collecting and analysis of information by ensure that the DoH minimum requirement to record and review cases of dementia in the voluntary Quality and Outcomes Framework of the new GP's contract is achieved (required from April 2006), registers of dementia patients in primary care are developed and Improve the collection of information about the numbers of older people with mental health problems, to enable more comprehensive joint strategic planning.

3. Consider the intermediate care needs of older people with mental health problems and capacity and resources required to meet their needs.

4. Improve access to 24 hour assessment, treatment and support for older people with mental health problems and their carers.

5. Further work needs to be undertaken to ensure that younger people with cognitive impairment receive appropriate assessment, diagnosis, support and care. A named commissioner should be identified to lead this work.