Dementia (health and wellbeing needs in South Tyneside)

What is dementia?

Dementia is a term used to describe the impairment of cognitive function.

This may include the person's ability to process information, reasoning and communicate effectively, which limits their ability to carry out daily activities without assistance.

Late On Set Dementia (LOSD) is a condition of people aged over 65, although some people, normally from aged 40, can develop what is called Early on Set Dementia (EOSD).

The World Health Organisation (source: World Health Organisation Fact Sheets: Dementia] suggests that there are more than 55 million people who have dementia worldwide, of which over 60% live in low and middle income countries.

Every year, there are nearly 10 million new cases.

A high proportion of people living with dementia (72%) will also have multiple mental and physical health comorbidities, the most common of which are arthritis, hearing problems, heart disease or a physical disability. Source: NCCMH: The Dementia Care Pathway.

The Alzheimers Society estimates that there are 944,000 people in the UK with dementia and suggests that this will increase to 1 million by 2030 and 1.6 million by 2050.

Whilst there are over 100 types of dementia, the four most common universally accepted forms are:

• Alzheimer's Disease - Around 60% of people with dementia have Alzheimer's disease, which relates to the abnormal build-up of proteins in the brain. Initially, memory of life events that happened a long time ago are often unaffected.
• Vascular Dementia - To be healthy and function properly, brain cells need a constant supply of blood via the vascular system to bring oxygen and nutrients. If blood cannot reach the brain cells they will eventually die, which can cause problems with memory. Around 15% of people with dementia have vascular dementia.
• Lewy Body - This presents with an abnormal deposit of a protein in nerve cells and is associated with cell damage. This can be the underlying cause of several progressive diseases affecting the brain / nervous system. Approx 10% of cases.
• Frontotemporal Dementia - Relates to less than 2% of cases but is a significant cause of dementia in people aged under 65. Nerve cells in the frontal and / or temporal lobes of the brain die and the pathways that connect them change. The frontal lobes, manages problem solving, speech and the control of emotions.

Over 10% of people may have a combination of types, this is called mixed dementia. Others equate to 3% and include Parkinsons Dementia.

Whilst people with mild cognitive impairment may remain stable or improve over time, around a quarter are likely to progress to dementia within 5 years.

In October 2023 there were 1,444 people with a diagnosis of dementia living in South Tyneside, NHS projections suggests a figure of 2,029 have the condition including those not currently diagnosed.

It is thought that there are approximately 100 people with EOSD in the borough, although there is some uncertainty about this figure relating to recording at GP level.

Dementia limits a person's ability to function independently and increases the likelihood of needing to rely on others for support and safety, this can also impact significantly on the life of family / carers.

Key issues include:

Awareness and prevalence

Better awareness of dementia will help improve the understanding of the public, whilst early intervention will support a better quality of life for the person and help increase already good diagnosis rates.

Some dementias are preventable, therefore following healthy lifestyles, (via the "A better U" principles) will, overtime, reduce prevalence, and the future demand for services.

Post diagnostic support

Feedback from the South Tyneside 2024 Memory Loss Survey is mixed, with some saying good information and advice is available, others not so.

Therefore, whilst there may be the need for some improvements, it is more likely that there may be a need to improve access.

Carers identified the needs for speedier diagnosis, to reduce stress and help come to terms with an often-complex situation. Addressing loneliness was also seen as important.

COVID-19 

There was scant mention of COVID-19 in the recent survey, however, evidence from third sector sessional group leaders highlighted some initial reticence to attend activities, although this eased considerably once attending.

EOSD 

Numbers are small. There is however a need to consider the impact on the wider responsibilities of these residents, such as their desire / need to work and wider caring responsibilities.

The impact of EOSD on the lives of people with learning disabilities also needs to be considered.

National research suggests that up to 75% of people with learning disabilities can get EOSD from aged 50.

Carers 

The stress involved in supporting people with dementia came across clearly in discussions and surveys, including the impact on finances, employment, and wider care responsibilities.

Opportunities for carer breaks are seen as important to support their mental health and wellbeing.

Ageing population

There is a need to support an ageing population live well with their dementia.

Should projections relating to dementia be accurate, this will have a significant impact on social care resources.

This also needs to be considered in context, that dementia is not an inevitable part of ageing.

Nationally, 25% of hospital beds are thought to be occupied by people with dementia, reducing the demand for hospital beds and helping people to die in a location of their choosing is important.

Inclusion groups

Whilst numbers are small, there is a need to ensure equality of access to services, for example for people from ethnic minority backgrounds. 

Helping to overcome the stigma of dementia and improve quality of life is essential to people coming forward for support.

LGBTQIA+ residents

Whilst numbers are again small, there is a need to ensure equality of access to services for LGBTQIA+ residents.

LGBTQIA+ stands for lesbian, gay, bisexual, transgender, queer (or sometimes questioning), intersex, asexual, and others. The "plus" represents other sexual identities, including pansexual and Two-Spirit.

Workforce development 

Ensuring the existing workforce is suitably trained, is essential to meeting the needs of residents.

Considering future workforce requirements will help ensure the needs of an ageing and growing dementia population are met.

Innovation 

Innovation can help improve the quality of life of local people, this could include better use of ICT, meeting the housing needs of local people and alternative ways to fund support, for example via external funding.

From a starting point of an expected long-term increase in dementia, with people living longer and small numbers of people with of EOSD, priorities include:

Promoting independence / access to information 

Improved access to pre and post diagnostic information will help prevent, reduce, and delay need, maximising independence for all, irrespective of their level of need.

Better signage and visual cues in public buildings would also help independence.

Carers, with no earlier contact with dementia services, highlighted the need for help to access support.

Raising awareness 

Joint working across the health and social care system would help to better promote dementia awareness.

There is a need to educate the community that dementia is not a natural part of ageing.

Supporting carers  

Ensuring carers can access the support they need to help address issues such as loneliness and isolation and help reduce carer breakdown.

Carers can have multiple responsibilities within the family, which can add to stress and exhaustion.

Physical and mental health

Encourage local people (and carers) to seek post diagnosis support for their physical and mental health needs, by accessing Health Checks in Primary Care, particularly in deprived communities, where lifestyle factors may increase the risk of dementia.

There is also a need to continue to encourage older people with depression to access Talking Therapies.

Enhanced partnership working 

Improving communication and collaboration between services to enhance the existing offer and the value of the South Tyneside Pound.

Workforce development

Ensure the current and future workforce is suitably trained and promote volunteering as a stepping stone to working in social care.

Encouraging innovation 

Examine how innovation in technology, housing, and alternative financial models, can enhance the support available.

Home care

Support people at home, including the use of domiciliary care.

Consider increased use of the third sector to provide this and greater use of technology.

Reduce demand on care homes, by ensuring that community-based provision is available to support discharge.

Palliative care 

Consider the use of multi-disciplinary teams to support palliative care, again including domiciliary care.

People should be supported to die in a location of their choosing.

The World Health Organisation highlights factors that increase the risk of developing dementia, these include:

• Depression
• High blood pressure
• High blood sugar
• Smoking
• Excess alcohol
• Lack of physical activity
• Being overweight
• Social isolation

NHS Choices highlights that people can reduce their risk of developing alzheimer's and vascular dementia by:

• eating a healthy diet 
• taking regular exercise 
• managing conditions, like Type 2 diabetes
• being social
• managing high blood pressure
• avoiding smoking 
• only drinking within medical officer's guidelines 

The message being "What is good for your heart is good for your head".

It is thought that building up cognitive reserve over a lifetime, for example via educational attainment and complex work, can reduce the dementia risk.

There is also growing evidence that mid-life depression is a probable risk factor for later dementia, treatment should be encouraged.

The Social Care Centre for Excellence suggests that risk factors for developing EOSD are not fully understood.

In a proportion of younger people, there is a familial link, those who have at least one close relative with dementia have a two to four times greater risk of developing the condition before age 65, most commonly Alzheimer's disease. The effect is stronger for those where the close relative had EOSD.

Another major risk factor is down syndrome which is highlighted in the report above. This suggests that three-quarters of the people with down syndrome, aged over 50, are expected to develop dementia. This is increasingly evident as people with down syndrome are living longer.

Research led by University College London (UCL) found that dementia rates are 22% higher among black people in the UK compared to white people, while black and South Asian dementia patients die younger, and sooner after diagnosis. Source: UCL: Dementia study.

There are clear links with work relating to ways to reduce frailty NICE guideline NG16 for example the need to be more active, reduce alcohol consumption and ensure meaningful activities are provided locally. This includes smoking cessation.

Women have a higher prevalence to the condition than men. Women are disproportionately affected by dementia, both directly and indirectly. They experience higher disability-adjusted life years and mortality due to dementia, but also provide 70% of care hours for people living with dementia.

National context

Alzheimer's Research UK data highlights that there are approximately 944,000 people in the UK living with dementia; the vast majority of which is LOSD, with the most common type being Alzheimer's disease.

Under 5% or approximately 42,000 people are thought to have EOSD. However, the National Institute for Health estimate this to be around 70,800.

Based on an analysis of ONS statistics, the Alzheimer's Society outlines that 74,261 people died from dementia in 2022, seven per cent more than the 69,178 in 2021. Of this total, more than 48,000 were women. This relates to 1 in 10 of UK deaths.

The Society is seeking the introduction of new drug treatments, this will take time to have an impact on rates and proportions.

The National Institute for Health has outlined a small study undertaken by the National Institute of Neurological Disorders and Stroke (NINDS), where researchers examined the cognitive impact of COVID-19 on people with dementia.

They found that having COVID-19 rapidly accelerated the structural and functional brain deterioration of people with dementia, regardless of the type.

This study also suggests that COVID-19 causes severe neurological complications in people with dementia and appears to accelerate the disease progression in all types of the condition.

Alzheimer's Research UK has highlighted a large research study which looked at health records of people aged 65 +, scientists found that people were at higher risk of developing dementia following COVID-19 infection.

The projections below Alzheimers by the Care Policy and Research Centre (based on 2014 population projections) includes national, regional and local statistics relating to dementia. It should be noted that this is based on no disease modifying treatments, changing the current position over the projection period.

Table 1 below outlines projections in England to 2040, relating to the number of people with mild, moderate, and severe dementia. This suggests an 81% increase in those with dementia in England by 2040 with the growth rates if the most severe cases will be 109%.

Local context

This modelling data also provides projections to 2030 of those regionally and locally with the condition and provides an idea of the associated costs.

Table 2 below projects that by 2030 the number of people with dementia in South Tyneside will have increased by 31.5% to 3,040 (from 2,310 in 2019). This is below both the England and North East average but would be a significant spike in possible care and support demand.

It should be noted that the number of people with dementia in October 2023 in South Tyneside was around 2,000 people and therefore less than the modelling data identified below, however the direction of travel is seen to be increasing based upon the national and regional picture.

Table 3 below outlines the total cost of supporting people with dementia, (2015 prices), which for 2020 in South Tyneside was estimated to be around £90 million. However, revised figures using the Bank of England inflation calculator suggest that due to inflation this would be £96m in 2020.

Whilst it is difficult to predict levels of inflation going forward, using a 3% average would suggest that this would be £117m in 2025 and £150m by 2030. This is broken down based on the England average of which 14% is attributable to Health Care, 46% to Social Care, and 40% to Unpaid Care.

Table 4 outlines the projected growth in prevalence rates of dementia in old age.

In South Tyneside it is expected to grow by 4.4% in the period from 2019 to 2030, this is significantly below the England and the regional average of over 10%. Whilst this is welcomed, numbers are still expected to increase, just not at the rate of other areas.

Table 5 provides an analysis of the projected growth rate across the various stages of the condition this suggest a growth, as the population ages, of 44.3% in the most severe cases in the period to 2030. This has implications for the types of services that are required.

NHS Primary Care dementia data highlights that in October 2023 there were 1,444 people living with dementia in South Tyneside, with an estimated total prevalence of 2,029 including those undiagnosed.

It is thought that there are 100 people living with EOSD in the Borough, although there is some uncertainty relating to this figure.

Diagnosed prevalence has been increasing steadily, nationally (bar the Covid period).

South Tyneside Council statistics for the end of March 2023 financial year, highlighted that there were 692 South Tyneside local people in receipt of services from Adult Social Care, whom either had a primary support reason (PSR) relating to dementia or a dementia service (21% of those in receipt of services).

427 people have a PSR of Support with Memory and Cognition (dementia), of those:

• 190 also have an active dementia service
• 237 have another service recorded as the primary service

Of these 692, 34 (5%) people had EOSD, with the youngest being 40 years of age. Details of those LSOD are outline below, with the oldest being 101:

• Aged 65 to 70: 28 (4%)
• Aged 71 to 80: 172 (25%)
• Aged 81 to 90: 317 (46%)
• Aged 91+: 141 (20%)

The age groups with the largest number of people with dementia were aged 81 to 90, followed by the 71 to 80 age group.

In terms of sexual orientation of the 692, 46 (7%) identified themselves as heterosexual, 12 (2%) information declined and 634 (92%) not recorded. It has therefore not been possible to provide a detailed breakdown of sexual orientation due to the number of none recorded.

In terms of sex, 68% were female and 325 men, whilst relating to nationality 119 (17.2%) were British, others were unknown, or the groups were too small to be to be recorded without potentially being identifiable.

It has not been possible to develop a clear understanding of the needs relating to LGBTQI+ residents due to a lack of data.

South Tyneside's annual spend on care home placements / home care for older people

At the end of the financial year in March 2023 there were 299 South Tyneside's people with dementia that were in receipt of residential or nursing care (as outlined in their support package).

The average cost of each placement was £1,072 per week or £55,744 per year.

By December 23 there were a higher number of people supported at 408, although the average costs were slightly lower at £911 per week or £47,371 annually.

The total cost of residential and nursing care support for the financial year to March 2023 was £16,667,551. This had risen to £19,327,229 by December 23.

It should be noted that, whilst dementia is highlighted in the care package the person may have multiple support requirements. It should also be noted that these figures do not include those self-funded, details of which are not collected by the Council.

People with dementia, along with the general population, are prone to develop physical conditions as part of living and ageing.

However, those with dementia can have more complex needs which can potentially result in assessment difficulties or a prolonged recovery period. If complex needs are unaddressed, a likely outcome is emergency hospital care, which can also result in an admission to care.

Where people live

An analysis of South Tyneside data on where people live who were accessing services in December 2023 highlighted that of the 677 residents at that time, recorded as having dementia, accessing a service, or requiring PSR of Support with Memory and Cognition (dementia).

Analysis highlights that the Primrose Ward had 10% of the total number of people with dementia living in South Tyneside, whilst Cleadon and East Boldon, Whitburn and Marsden, Fellgate and Hedworth and Simonside and Rekendyke collectively had less than 10% of the overall total.

Feedback from local people and organisations suggest that provision is South Shields centric. 61 or 9% of people with dementia live out of the Borough, with any placement, depending on the needs of the individual (and the family) and the result of any local care home assessment as to whether the individual can be accommodated in the borough.

Reviewing the figure of 677 against the people with dementia of 1,444 (October 23) suggests that approximately 46% of people with the condition are accessing services. Whilst this is only illustrative, this would suggest more than half are not.

In December 2023, there were 5 people whose primary reason for support relates to a learning disability and who had dementia. Three of this group were aged under 65 and therefore have EOSD and two were over 90 years of age. All were female, white British and lived in the Borough.

Discussions with the Admiral Nurses Service suggests that many residents are not able to access third sector activities, in part due to being housebound. Opportunities for one-to-one home-based support would be beneficial, to allow carer breaks and support those that do not wish to attend social activities.

This would help offset any (actual or perceived) South Shields centric view of provision. Exploring opportunities for external funding could help extend the availability of this type of support in the borough.

Age Friendly Communities Survey

Research undertaken in South Tyneside between November 2022 and April 2023 as part of the Age Friendly Communities Survey, and based on World Health Organisation parameters, highlighted that specifically in relation to dementia.

• Public buildings and outdoor spaces - "Need to have more accessible toilets. Public buildings need to have more dementia friendly signage and visual cues."
• Respect and social inclusion - "Very important to build on intergenerational working. Need to practically educate school children in communication skills with older people and people with dementia. Disappointed that we have lost the focus on Dementia Friendly Communities."
• Community and health - "I don't know what services I will need in the future therefore unable to answer with any certainty. As for shops - again internet could provide everything providing its accessible and people know how to use it. There's a distinct lack of services for people with dementia."

More generally issues relating to older people included the need to improve paths and kerbs, too much dependence on online, more community spaces such as chatty cafes, the expensive cost of care, and the need for improved information on social groups.

Feedback loop

Partners are keen to see the opportunity for users and carers to participate in ongoing feedback on progress of the implementation of the findings arising from the JSNAA, recognising the benefits of feedback from carers and people with dementia.

Consideration should be given to the following unmet needs:

• Articulate the needs of LGBTQIA+ residents.
• Examine how changes in technology, housing, and new financial instruments could support the needs of a growing and ageing dementia population.
• Articulate the needs of Ethnic Minority Communities.
• Consider the ability to information the information and advice available at the start of the caring journey - to help people have a better understanding of the caring role and can continue to lead an independent life, including work if desired, outside of their care responsibilities.
• Development of home-based support, to support carer breaks and for those that do not wish to attend community based social groups.

There are several key issues which may have implications for the demand for services. For example:

• Projections suggest that the numbers of people with dementia and the severity level is increasing, people are also living longer with the condition. This has implications for the support required.
• Limited information is available about EOSD locally, people's needs are often vastly different to those of older people with the condition, such as family responsibilities, the need to work, and potentially being carers themselves.
• Better understand the requirements of specific groups within a growing dementia population, such as those from ethnic minority communities.
• Better understand the needs of LGBTQIA+ residents.
• The need to ensure a suitably qualified current and future workforce to meet the requirements of growing dementia population.
• Discussions have suggested that provision is South Shields centric.

South Tyneside Council has a statutory duty relating to the 2014 Care Act to assess local people's needs and their eligibility for publicly funded care and support. 

This is delivered by Adult Social Care Strategy via the 'Living Better Lives' (2022-2026) which outlines the approach adopted locally. Services are delivered in the context of:

• Being able to access support which builds on their strengths, friendships, and aspirations.
• Live safely and well.
• Live independently as much as this is possible.
• Have an equal voice in coordinating their care and support.
• Tell their story only once.
• Have their rights protected.
• Be included and treated as equal citizens.

"A better U" has been designed to help the people of South Tyneside improve their health and wellbeing through self-care, which ultimately supports improved overall health and wellbeing in the borough.

It helps local people to:

• Have more control over their health and the services they receive.
• Know how and when to seek support with a health concern.
• Being able to better manage a health concern or condition at home.
• Know what groups and support are available in the community.

Encouraging people to lead healthier lifestyles and to know how and when to seek support with a health concern is essential in helping to prevent dementia and encourage them to come forward with concerns relating to their memory.

The North East and North Cumbria Integrated Care Board (or ICB) is a statutory NHS organisation which is responsible for developing a plan for meeting the health needs of the population, managing the NHS budget locally and arranging for the provision of health services in a geographical area, locally this being South Tyneside.

ICB's will:

• Improve outcomes in population health and healthcare.
• Tackle inequalities in outcomes, experience, and access.
• Enhance productivity and value for money.
• Help the NHS support broader social and economic development.

A Dementia Services Map has been produced, which outlines the organisations that provide services to people with the condition in South Tyneside.

A copy of the chart can be accessed from the Commissioning Unit at South Tyneside Council, see Section 12. Details of selected services are provided below.

Cumbria, Northumberland and Tyne and Wear Foundation Trust

South Tyneside Cognitively and Functionally Frail team, provide assessment and treatment services to the older population who present with mental health problems.

This is on a 1:1 or small group basis and includes assessment and diagnostics, alongside the provision of community mental health nurses for longer term therapeutic and educational work with people and families, access to medication and consultation with a consultant psychiatrist and access to psychology and psychological therapies.

CNTW also deliver Carer Education groups at ACTS.

Following a successful pilot in 2021, CNTW now provides a Care Home Early Response Service working both in care homes and the local community to provide training and support.

A Delirium Support Service links with acute services to help reduce the impact of delirium on the individual, developing a better understanding of non-clinical staff and in turn reducing hospital admissions.

South Tyneside and Sunderland Foundation Trust 

In addition to providing personalised care for people living with dementia, tailored support is provided to relatives and carers.

The Dementia and Delirium Outreach Team (DDOT) which is operational in Sunderland, is currently being rolled out in the borough.

Clinics are now being held in South Tyneside, with other provision due to begin shortly. The service supports people with, or at risk of, cognitive difficulties such as dementia and delirium. It aims to assess all older people admitted to the Trust with or at risk of cognitive problems. Referrals can only be made from within the Trust.

The service also supports carers and staff from within the Trust by providing information, education, and specialist input to the wards.

People with dementia can be admitted to hospital due to many reasons such as infections, heart failure, falls or social issues. These people have complex needs and require specialist support. An outpatient follow up clinic is provided for people who have had delirium. See Case Study A for recent changes in Older People and dementia support at STSFT.

Haven Court - South Tyneside's Integrated Care Services Hub

Haven Court provides an 80-bed residential and nursing home, intermediate care, short break, and respite care facility and reablement to help rebuild the skills needed to live independently and reduce the need for ongoing support.

Based within the grounds of South Tyneside District Hospital, Haven Court is also the base for the Dementia Day Opportunities Service that is run by Age Concern Tyneside South (ACTS).

Care homes

South Tyneside Council currently commissions 23 independent and private sector care homes for older people.

• 14 are residential care homes that provide residential care (RES) and residential care with extra mental health intervention (EMI/RES).
• 9 are dual registered care homes that provides RES, RES / EMI as well as general nursing and nursing EMI care.

The bed statement (which include reablement beds not included below) outlines homes currently have a total of 1112 beds, split as follows:

• Residential only (RES and RES / EMI): 624
• Dual Registered (RES, RES EMI, general nursing and nursing EMI): 450

There are 5 Extra Care schemes in South Tyneside, providing housing solutions for adults over 55 with care needs.

Of these, two are in the private / independent sector, two are provided by the Council, whilst the most recent, which is run by South Tyneside Homes as a joint venture with the NHS, consists of a both a reablement and extra care service has 25 reablement flats and ten extra care flats. These schemes have an onsite care team which provides support and enables the resident to retain their independence for longer.

Plans are currently in development for new build extra care schemes within the borough, which include accommodation that will specifically support people with dementia.

The Alzheimer's Society

The Society provides support services to people with any form of dementia, their carers, and families.

In addition to leisure opportunities, including Dementia Café's and Singing for the Brain sessions, which provide links with support workers and volunteers, the Society also offers peer to peer support groups and carers meetings.

Dementia Support Workers offer information and practical guidance to help understand dementia, cope with day-to-day challenges, and prepare for the future.

The Society also offers information to people who are worried about their memory, and ongoing support to people affected by dementia face to face, over the phone or in writing.

Age Concern Tyneside South  

ACTS supports people over the age of 50, with the aim to support and empower older people to live fulfilling lives. Older people can access a range of services including information and advice, falls assessments, a home from hospital reablement programme, a home support service, community activities, an in-house gym, and volunteering opportunities.

As outlined above, ACTS is the provider for the Day Opportunities Service based at Haven Court.

Provision is available on a seven day per week basis for morning and afternoon sessions, offering a range of activities and social support and carer breaks.

ACTS works with people referred to find the right activity, which could be attending day opportunities at Haven Court or an Activity Support Worker to support attending a community activity, outdoor activity, or activity within the home.

It also offers carers workshops and support for community groups to become dementia friendly.

It is also developing other more personalised services for people with dementia to help meet their needs, and the needs of carers. A range of mental health support is available, with ACTS working in partnership with South Tyneside and Sunderland Foundation Trust (STSFT) to offer the Older Peoples Talking Therapies Service.

ACTS also provides support as part of the Home from Hospital Service. This can be practical or emotional support and includes providing transport home from hospital, or meeting the individual at home, week by week support with practical day to day tasks such as shopping.

Admiral Nurses - Dementia UK

Admiral Nurses are specialist dementia nurses have been working in South Tyneside since 2022.

They help families manage complex needs, including helping to consider the needs of the individual and their carers and loved ones.

This could be from pre diagnosis through to end-of-life care and support.

The Admiral Nurse team cover all patients registered with a South Tyneside GP and collaborate closely with all partners supporting people living and working with dementia. This includes the social work teams and the third sector teams in South Tyneside.

Nurturing Dementia - Churches Together in South Tyneside

The Nurturing Dementia project is part of Churches Together in South Tyneside, it runs Dementia Friends sessions which are information meetings to raise awareness of dementia, so that people can respond confidently to people experiencing dementia.

It also supports churches to become dementia friendly places of worship. It offers training sessions in schools and organises community events to enable a better understanding and response to dementia.

Carers Support 

A new carer support contract has recently been awarded, covering a three-year period from April 2024. The objectives of the service are outlined below and support the implementation of the South Tyneside Carers Strategy:

• To ensure adult carers are given the tools and support needed to maintain their own health and wellbeing to continue in their caring role, which will be bespoke to their needs and is centred around what matters to them.
• To promote social connectedness and prevent isolation.
• To promote access to services and maintain living skills.
• To ensure opportunities for access to employment, education, and training.
• To ensure there are links to other services, particularly mental health support.
• To provide support, advice, and information.
• Develop and provide a Sitting Support Service, which will give carers the opportunity to take a break and will be available to anyone with a need for it, whether they qualify for assistance from social care services or fund their own care.
• Work with young carers service to ensure they are supported during the transition to adult services.

Third Sector - Dementia Support

There are an extensive range of third sector organisations that provide social activities for people with dementia and their carers, where attendees can share experiences of dementia with others.

These sessions also provide practical and emotional support and can help carers address issues relating to their caring responsibilities, for example access to benefits advice.

These sessions are held on different days of the month, in venues such as church halls, libraries and community venues across the borough, with some people attending multiple meetings of different organisations. Feedback from the 2024 Memory Loss Survey highlighted the high regard these organisations are held in high regard by those that attend.

National Context

The impact of dementia on the UK population led in 2009 to the Department of Health developing the Living Well with Dementia: A National Dementia Strategy. 

In 2012, the first Prime Minister's Challenge on dementia was published, with the aim of building on the work undertaken since the National Dementia Strategy was launched.

In 2020, the Prime Minister's Dementia Challenge on Dementia 2020 highlighted the effect of dementia on both the person and the carer and also its economic impact on society as a whole. The cost nationally was thought at the time to be £26 billion per year.

It also estimated that 25% of all hospital beds are occupied by people with dementia and that those with the condition remain in hospital for longer and are more likely to be readmitted than those without dementia. They are also more likely to die than people without dementia who are admitted for the same reason.

The Challenge highlighted the need to:

• Improve diagnosis, assessment and care for people living with dementia.
• Ensure that all people living with dementia have equal access to diagnosis.
• Provide all NHS staff with training on dementia appropriate to their role.
• Ensure that every person diagnosed with dementia receives meaningful care.

It should be noted that the point above reflects the national picture (England) and that South Tyneside has good rates of diagnosis. See diagnosis rates below.

An ageing population makes dementia one of the greatest health and social care challenges nationally and internationally. In advanced economies such as the UK, better life expectancy means an increased likelihood of diseases such as dementia.

The "Challenge" suggests that a third of people who die after the age of 65 have dementia, with nearly two-thirds being women.

In 2014, the Alzheimer's Society suggested that 40% of people with dementia feel lonely and 34% do not feel part of their local community. This has been exacerbated by COVID 19.

The ageing of the population also needs to be set in the context, as highlighted in the Chief Medical Officers Annual Report 2023 Health in Ageing Society where Professor Chris Whitty, Chief Medical Officer for England highlighted:

"That most people enter older age, and many remain, in good health. A great many more go through older age in health which is sufficient to have independence and a high quality of life".

"Most people do not have Alzheimer's or other dementias, or major debilitating conditions, before they die. Older age is often portrayed relentlessly negatively when actually the experience for many in older age is positive.''

The Care Act promotes wellbeing and sets out how care should be provided to adults with eligible care needs, it supports the personalisation of support services, putting the person at the centre of the process.

The Act seeks to ensure that homecare services are tailored to the individual needs of people with a range of conditions including dementia.

Duties include:

• promoting individual well-being preventing needs for care and support
• promoting integration of care and support with health services
• providing information and advice
• promoting diversity and quality in provision of services
• assessing people's needs and deciding how to meet them

In May 2022 a new ten-year plan for dementia was outlined by government, GOV.UK: 10 year plan for dementia (2022). In addition to increasing diagnosis rates, the plan focuses on supporting people with their specific health and care needs whilst living with the condition.

The chart shown at NHS.UK: Long plan summary below illustrates the support to be given to improve health outcomes as illustrated in the NHS long term plan.

This helps to prevent the condition, improve diagnosis rates and enhance hospital discharge are key elements, with community-based support via Primary Care Networks key drivers of the way forward.

In the Five Year Forward Plan for Mental Health, the NHS outlines it's approach to the development of mental health services, which includes support for people with dementia.

This includes the need to ensure good quality, seven day per week commissioned services, and the need to ensure appropriate staff training offered.

The Five Year Forward View also outlines that older people's needs are also often neglected, with many people believing that depression is a normal part of ageing. There is a need to ensure the maximum take up of Talking Therapies by older people.

NICE Dementia Guidelines encapsulate the thinking relating to future diagnosis and treatment, recognising the importance of person-centred care. They also highlight the need for greater involvement with business and industry to support people to live locally with the condition and the provision of flexible employment opportunities for carers.

The guidelines outline the need to support Public Health England's five-year strategy to improve public awareness of dementia, equalise diagnosis rates across the UK and the role of GPs in helping to ensure the co-ordination and continuity of care.

There is also a need to ensure that needs of minority groups, including lesbian, gay and transgender groups and asylum seekers are met. Such factors need to be considered when seeking to support people live well with the condition.

The Wellbeing Pathway for Dementia outlines the approach by the NHS England Transformation Network to help prevent dementia and support people who are diagnosed with the condition through their life course. In addition to the five stages, it outlines the need for continued research, ongoing partnership working, good commissioning processes, high quality training and effective monitoring.

Local context

The South Tyneside Vision is:

"A place where people live healthy, happy, and fulfilled lives."

Any changes to services should contribute to the Council's vision, for local people to live happy healthier and fulfilled lives, specifically the ambitions of being:

• Financially secure.
• Healthy and well.
• Connected to jobs.
• Part of strong communities.
• Targeting support to make things fairer (and seek to reduce inequalities)

South Tyneside's Adult Social Care Strategy 2022-2026, Living Better Lives, outlines the Council's approach to delivering its statutory responsibilities in terms of wellbeing. It also outlines the need to safeguard adults at risk of abuse or neglect and ensuring that local people get the information and advice that they need to make informed choices.

The approach aims to develop a place-based system of care, support by placing people, families, and neighbourhoods at the very heart of its work to achieve the best outcomes.

The six objectives include:

• Objective 1: Prevention and Early Intervention
• Objective 2: Support people tom remain in control
• Objective 3: Keeping people at risk of harm and abuse safe and well
• Objective 4: Working in partnership to improve health and care
• Objective 5: Working together with our communities
• Objective 6: Have a sustainable and skilled workforce

The South Tyneside Mental Health Strategy 2022 to 2026 outlines that being a mentally healthy borough means that we all feel normal to talk about mental health and that everyone, whoever they are, wherever they live and whatever they need, will be able to access good quality mental health support when needed.

One of the eight priorities outlined in the Strategy is the need to "help raise awareness of mental health issues with older people and ensure they are able to access information, support and appropriate treatment that meets their needs."  

Dementia is a key factor in the support for older people. For example, life expectancy is 9.5 years lower for men and 9.9 years lower for women in the most deprived areas of South Tyneside than in the least deprived areas.

The implementation of priorities of the South Tyneside Frailty JSNAA, with a move to active screening for frailty, increased communication between primary and secondary care teams and the implementation of the electronic frailty index by GP's will help people live linger longer with the condition.

Research by the IDEAL programme in relation to loneliness highlighted that one-third of people with mild-to-moderate dementia experience loneliness. 30% are moderately lonely and 5% are severely lonely. However, it suggests that these figures are comparable to the general population of older people.

People with dementia who live alone, and who experience social isolation, depression and lower quality of life are more likely to feel lonely, but researchers found no association between loneliness and dementia-specific factors.

The vision for the South Tyneside Care Academy is to build an adult social care workforce that is representative of our local population, by encouraging more residents to choose a career from a wide range of opportunities available and supporting our existing workforce to further develop.

It can deliver a range of courses from entry level right through to senior leadership and management qualifications. Partners should work with the Academy to explore any specific needs relating to the dementia workforce.

Feedback from the Alzheimers Society suggests that despite improvements in the availability of post diagnostic information, some people continue to find it difficult to identify the support they need, this was reinforced from discussions with carers as party of preparing this assessment.

This was reinformed with discussions with carers. Consideration should be given as to how access to information can be improved, including for those that are at the initial stages of the condition, which will help them remain independent for longer.

Carers

For many people with dementia, the support they receive from carers will be their main source of support. Key themes from The Carers National Action Plan 2018 to 2020 outlines key themes to support the needs of carers, including:

• Ensuring services and systems work for carers, such as raising awareness and best practice amongst health professional and social workers.
• Promoting the employment of and wellbeing of carers, such as promoting flexible working and opportunities to return to work.
• Supporting for young carers and carers in the wider community.

Whilst not specifically related to dementia, the South Tyneside Carers Strategy 2022 to 2027 examines the needs of carers and the support available. The strategic priorities include:

• recognising and supporting carers
• increasing access to stable and supportive employment
• keeping carers connected
• improving the health and wellbeing of carers

It recognises that:

• Around 1 in 7 people in South Tyneside with caring responsibilities are currently in employment.
• Relatively low numbers of people from culturally diverse backgrounds identify as carers or access support services.

Carers who responded to the Memory Loss Survey 2024 undertaken for this JSNAA highlighted that waiting for a diagnosis was stressful and the need for carer breaks. Some found accessing information difficult, whilst others thought that good levels of information were available.

Work undertaken by my life films in 2021 outlined the impact of Dementia on Carers and Family Members, see My Life Films: Dementia Impact. Key issues include:

• Relationships with other family members may change.
• Carers can lose time for themselves.
• There is support available for carers.
• Significance of physical and mental health.

The Alzheimers Society reports that a third of family carers provide personal care. A fifth give 20 or more hours of care per week, whilst one in ten give 50 hours per week. The type of support provided will vary enormously depending on the nature and progression of the condition, the capabilities of the carer, and the other assistance available.

Carers are often women, as they live longer and tend to marry men who are older than them. Therefore, many men with the condition live at home until they die or go into supported accommodation.

Support may include helping the person with some or all activities of daily living from intimate personal care to housework whilst also supporting meaningful activities, finance and legal matters and reassurance where the person fears being alone. Women of working age are often seen in the role of "sandwich carers," looking after children as well as older adults.

Providing this level of constant support takes a significant amount of time, hard work, and compassion, and may often be emotionally and physically exhausting. A study of carers of people with dementia, stroke and Parkinson's disease found that the most frequently reported problems associated with caring were the disorganisation of household routines, difficulties with taking holidays, restrictions on social life, and sleep disturbances.

Discussions with carers as part of this research highlighted the significant pressure they feel in support not only the person with dementia, but often the extended family with multiple caring responsibilities. Community groups to support people with dementia are well received by both people with dementia and their carers, waiting lists are an issue for some. Accessing support with benefits advice has also been highlighted as an issue.

Carer Strategy feedback

As part of the development of the Carers Strategy, views were sought on the support carers of people with dementia need.

Feedback included the need for welfare checks on carers, and for carers to be able to look after their own health by taking part in their activities / hobbies but also what the options they have for the cared for person to be looked after. This included the ability to explore what services /support is available without having to go through social care. Information was thought to be lacking.

Additionally, when exploring practical things that would help the carer take a break from their care responsibilities, feedback included a place where the cared for person (with mild dementia) can go while I have a break. Also seen as important to be able to find out about places for people with dementia whilst carers have a break.

Care Management Matters suggests a shortfall of 58,000 beds in the UK by 2035 and by 2050 an additional 350,000 older people will potentially need a care bed, almost doubling bed demand in the next 30 years. This has implications for the type of future provision required locally.

Deprivation has strong links with poor health and South Tyneside has worse health outcomes than other, less deprived authorities as well as worse health outcomes in its most deprived neighbourhoods.

South Tyneside Council and partners has developed a range of strategies to help address poverty for all residents, including older people including those with dementia, one such example being the South Tyneside Fuel Poverty Strategy whilst the South Tyneside Anti-Poverty Strategy 2024 is in the process of being launched.

Dementia can have significant financial implications arising from the impact of the condition, whilst carers often having to leave work to care for relatives, with the significant changes to income this brings. The strategies highlight approaches to support people across the community to address such

The South Tyneside draft Local Plan 2030-2040 outlines the key housing issues for older people.

Section 2.25 indicates that one of the key conclusions of the Strategic Housing Market Assessment (SHMA) (2023) are that there needs to be a broader, more diverse, and affordable housing offer for older people across South Tyneside.

Section 8.45 highlights the need for specialist accommodation in the borough, and the need to ensure that new development contributes to a range of attractive housing options for older people, including those with dementia. This includes self-contained specialist housing and residential institutions.

Diagnosis rates

The NHS has an ambition of two thirds of people to have a formal dementia diagnosis, to help people of all ages and dementia types to have earlier access the treatment and support they need.

There were 115 new diagnosis 22 / 23 compared to 97 in 21 / 22. In the year to date (Dec 23) there were 73. The average referral to diagnosis takes 33.5 weeks compared to 40.2 last year. Average referral rate per practice is 8.6 per 1000 of 65+, with the referral to diagnosis rate 0.3 (1694 on register from list size of 65+ - 29983).

Primary care data for October 2023 illustrates that the South Tyneside Diagnosis Dementia Diagnosis rate for people aged 65+ of 71.2% is better than both the England rate of 64.5% and the North East and Yorkshire rate of 67.2% (95% confidence levels).

Diagnosis rates in South Tyneside have continued to improve steadily in the 6 months to November 2023.

Referrals versus diagnosis: South Tyneside Memory Protection Service

South Tyneside is consistently performing over national targets with respect to diagnostic rates and continues to improve.

Evidence would suggest that whilst referral rates remain overall consistent, that there has been a slight reduction, however at present it is unclear whether this is due to improved screening therefore further work needs to be completed in respect to this.

Dementia and learning disability

Life expectancy of people with learning disabilities, and particularly people with down syndrome, has increased substantially over the past 80 years. This has brought with it a significant increase in these residents developing dementia. Three quarters of people from age 50 who have down syndrome develop the condition.

There is a need to ensure that people with EOSD, including those with learning disabilities, have good access to information advice and support.

Dementia and thnicity

Research from the Alzheimers Society in 2022, Alzheimers.org.uk: Ethnic communities and dementia research suggests there were approximately 25,000 people over 65 years of age living with dementia in the UK from ethnic minority communities.

This relates to approximately 3% of the 65 + ethnic minority population.

This is expected to double to 50,000 by 2026, and rise to over 172,000 by 2051, nearly a 600% increase in just 40 years.

Based on South Tyneside Demographics Information (available at varbes.com/demographics) the borough has an ethnic minority population of 8294 people which, consists of:

Statistics provided by South Tyneside Council highlight that in December 2023 1% of the total numbers of people accessing a dementia service, who have highlighted their ethnicity, are from ethnic minority communities. Whilst on the surface this may seem low it is thought to reflect good interaction locally.

Research by the Alzheimers Society into ethnic minority diagnosis highlights the understanding of dementia varies considerably in ethnic minority communities.

Each community will have its own set of values and beliefs, and each person experiences dementia differently. While the quality and effectiveness of the diagnostic process should be consistent for everyone, how services approach and talk about dementia should be tailored to the individual.

Long term conditions 

Work undertaken by South Tyneside CCG (now ICB) explored issues relating to long-term conditions.

The approach seeks to encourage healthy living and preventative measures through A Better U, encouraged integrated rehabilitation and education as well as screening, diagnosis, and early intervention.

The approach recognises the importance of person-centred approaches to care and the involvement of the person in decision making about their condition.

There is limited supply of accommodation with support for older people, whilst Extra Care schemes are in high demand.

The current South Tyneside Homes offer is predominantly in older establishments which are unsuitable for wheelchair users or those with significant physical frailty. This can contribute to hospital and care home admissions and often leads to relocation following any deterioration in physical wellbeing.

Whilst nationally there is a predicted shortfall in the number of care home places, South Tyneside's approach outlined in Living Better Lives is where possible to help people to live well with the condition and therefore at home for longer.

Therefore, the future direction of support for older people, including people with dementia includes increasing provision of extra care housing and other models, development of the Help to Live at Home (HTLAH) community model for both health and social care, to prevent reliance on long term residential services.

Approaches will also seek to promote better dementia friendly design in terms of accommodation and the greater use of assistive technologies across all provision.

The Council also proposes to reduce both the number of people residing in a care home setting and the number of people residing in sheltered accommodation with an assessed care needs.

Wider issues of memory loss

Memory loss is a complex issue, there are conditions of the brain that, on the surface, are like dementia, but these are conditions that may require different interventions and may improve or resolve following treatment in contrast to the progressive decline found with dementia. Two such examples are outlined below.

Delirium

Delirium is a state of mental confusion that comes on suddenly. It can have an impact on how a person behaves and functions, particularly if they have dementia. Those with delirium typically become confused and / or disorientated and have difficulty with concentrating. It can be very distressing for the person that is experiencing it and their carers. 

There are two types of delirium: 

• Hyperactive delirium causes confusion that fluctuates throughout the day, with the person often feeling agitated or restless. 
• Hypoactive delirium makes people sleepier and less responsive. 

Unlike the subtle decline with alzheimer's disease, the confusion of delirium fluctuates over the day, at times dramatically.

There are multiple potential underlying causes, some are temporary conditions, and the delirium resolves as the cause does. For example, some people experience delirium while recovering from surgery or other medical procedures.

The hallmark separating delirium from dementia is inattention. The individual simply cannot focus on one idea or task.

There has been a significant decline in emergency admissions to hospital for delirium in South Tyneside in recent years, with the most pronounced change being from the usual place of residence.

Korsakoff syndrome

Korsakoff syndrome is a chronic memory disorder caused by severe deficiency of thiamine (vitamin B-1). Commonly developed because of alcohol misuse, it causes problems with learning new information, remembering recent events and causes long-term memory gaps. Memory problems may be strikingly severe while other thinking and social skills are relatively unaffected.

The views of people with dementia / carers have been sought via a Memory Loss Survey undertaken between 25 January and 19 February 2024. In total 103 responses were received.

The findings concluded:

• The need to continue to improve pre and post diagnosis support, including better access to information, speedier diagnosis, and enhanced promotion of third sector assets. It should be noted that the survey highlighted good advice is available, whilst other respondents thought not. Therefore, in part, it may be a need to improve where to access information rather than the information that is available.
• The need to continue to join up services which can be fragmented - "often we don't see the same doctor twice and appointments are only for one issue - a holistic approach should be considered."
• The importance that local people place on community-based dementia day services, which provide social interaction and opportunities to learn from the experience of others. Both people with dementia and their carers were highly complementary of these services often attending several, from different organisations each month.
• The need for more one-to-one home-based services, to help maintain quality of life for the person with dementia and support carers breaks.
• The desire for enhanced physical activities to help individuals remain healthy.

The importance that carers placed on social activities to give them breaks and reduce carer breakdown. Detailed discussions highlighted the need for formal respite support to help with difficult or crisis situations. Carers also cited wider carer responsibilities such as caring from grandchildren or wider family members.

Covid-19

Covid-19 was not raised as an issue in the findings of the survey, however service managers highlighted some continued reluctance to attend although once this has been overcome confidence returns. Therefore there are no specific Covid 19 issues.

Memory Loss Survey: 2024

"I have lost my partner who cannot communicate with me, I am stressed by day-to-day changes as he is also terminal/palliative at the moment. I'm constantly having to think on my feet as he gets very confused and has a range of habits now that are very challenging. He won't wash at all or follow any instructions so that's challenging. It goes on and on."

"So many of the general public don't understand."

"It's not just the memory loss...... it's the anger and frustration that impact on life continuously."

"As a carer it affects our life socially."

"Short term memory loss creates problems in all aspects of life.

I've needed to educate myself as a carer."

"It is a strain on family relationships as both parents have disabilities (only one with dementia), it is horrible to see a very intelligent person, who used to do very complex DIY, no longer be able to zip up coat or know where the bathroom is in house."

"I'm a carer for my mam who still lives independently with a lot of background help. I do her shopping, keep check on out of date food in fridge, housework, check on dirty clothes put back in wardrobe, clothes washing, wash her hair, change bed, make sure she's out of bed, taken medication and had meal if I'm at work and she's not coming to my house for meal. Mam's memory loss impacts our lives as she wants to be with me to do anything or she's not that keen to go which means that if I'm not available with work commitments she has no company or stimulation, or she'll have a jaunt out on the metro. I have reluctantly put a tracker on her keys for safety."

"Sometimes I have nowhere to turn or know where to turn when my mam is having a bad day. I find it hard to continue with work and end up having to take a day off. I've had to reduce my hours at work. I get calls asking how my mam is getting on but not how am I getting on or family. I've no siblings so can't share the load when I'm not good myself."

Most services do not work for my family as they are heavily South Shields centric. My parents do not drive and using public transport is not suitable now due to stage of dementia and also lack of public transport. "As memory loss builds up you can't plan anything you have to take each day as it comes."

I'm losing the person I love and cherish slowly and distressfully. The person we knew is leaving us with a chasm in our life that will never be replaced.

"Lots of running to and from appointments, basically doing everything."

Areas identified include:

• Develop a better understanding of the issues surrounding EOSD.
• Consider any specialist requirements relating to, ethnic minority groups.
• Consider any specialist requirements relating to LGBTQIA+ residents.
• Explore the further development of the provider market to meet increasing demand.
• Better understand the needs of the 9% of South Tyneside funded people with dementia (and their families) who currently live out of the borough.

Examine how care home capacity can respond more effectively to the need of those with dementia, particularly those with challenging behaviour and complex needs.

Case Study A: Care of the Elderly Ward - South Tyneside District Hospital

In December 2023, South Tyneside and Sunderland NHS Trust opened a new ward, at South Tyneside District Hospital to support older people including those with dementia, installing features "proven to have a calming" influence or help avoid confusion.

The New Care for the Elderly Ward is painted in pastel shades and uses colour-coding to make the purpose of different areas clearer to patients, it also has defused lighting to reduce shadows. Colour coded blue and green bays will help people return to their own bed more easily and the doors to staff only areas are painted white to help avoid confusion.

The ward will also support people with delirium, who can have symptoms similar to dementia, but unlike dementia are short term due to being caused by an infection.

Source: BBC News: Dementia-friendly ward opened in hospital