Dementia (health and wellbeing needs in South Tyneside)

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.