These guidance documents published by NHS England and the Local Government Association set out how NHS leaders and organisations will operate with their partners in Integrated Care Systems (ICSs) from April 2022.

Integrated care systems (ICSs) are partnerships of health and care organisations that come together to plan and deliver joined-up services and to improve the health of people who live and work in their area.

They exist to achieve four aims:

• 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.

Thriving places: Guidance on the development of place-based partnerships as part of statutory integrated care systems

This co-produced NHS England and NHS Improvement and Local Government Association (LGA) document seeks to support all partner organisations in integrated care systems (ICSs) to collectively define their place-based partnership working, and to consider how they will evolve to support the transition to the new statutory ICS arrangements, anticipated from April 2022.

ICS implementation guidance on working with people and communities

The ICS Design Framework sets the expectation that partners in an integrated care system (ICS) should agree how to listen consistently to, and collectively act on, the experience and aspirations of local people and communities. This guidance sets out 10 principles for how integrated care boards (ICBs) can develop their approaches to working with people and communities, and the expectations.

ICS implementation guidance on effective clinical and care professional leadership

This guidance supports the development of distributed clinical and care professional leadership across integrated care systems (ICSs). It describes ‘what good looks like’ in this regard, based on an extensive engagement exercise involving over 2,000 clinical and care professional leaders from across the country, led by a multi-professional steering group.

ICS implementation guidance on partnerships with the voluntary, community and social enterprise sector

This guidance provides more detail on how to embed voluntary, community and social enterprise (VCSE) sector partnerships in ICSs, for health and care leaders from all organisations in ICSs that are developing partnerships across local government, health, housing, social care and the VCSE sector. The ICS Design Framework sets the expectation that integrated care board (ICB) governance and decision-making arrangements support close working with the VCSE sector as a strategic partner in shaping, improving and delivering services, and developing and delivering plans to tackle the wider determinants of health.

Interim guidance on the functions and governance of the integrated care board

This interim guide covers the expected governance requirements for integrated care boards as outlined in the Health and Care Bill and the Integrated care systems design framework.

HR framework for developing integrated care boards

The HR framework provides national policy ambition and practical support for NHS organisations affected by the proposed legislative changes as they develop and transition towards the new statutory integrated care boards.

Building strong integrated care systems everywhere: guidance on the ICS people function

This guidance builds on the priorities set out in the People Plan. It is intended to help NHS system leaders and their partners support their ‘one workforce’ by delivering key outcome-based people functions from April 2022.

Working together at scale: Guidance on Provider Collaboratives

The ICS Design Framework set an expectation that provider collaboratives will be a key component in enabling ICSs to deliver their core purpose. This guidance outlines minimum expectations for how providers should work together in provider collaboratives, offering principles to support local decision-making and suggesting the function and form that systems and providers may wish to consider.

Integrated Care Systems: Design framework

Guidance on the employment commitment: Supporting the development and transition towards statutory Integrated Care Systems

This briefing developed by the Royal College of Psychiatrists, working with Dementia UK, includes useful tips for giving the COVID-19 vaccine without causing distress and how to explain the vaccination to someone who is living with dementia.

Download Useful tips on the COVID-19 vaccine for people with dementia

The national COVID-19 vaccination is now being offered as a priority to individuals who are at highest risk of catching the infection and of suffering serious complications.
This includes people living with dementia and those who have certain conditions that increase their risk of becoming seriously ill.

The vaccine is not compulsory but is highly recommended. If someone you care for has been offered the vaccine and they or their family are unsure about having
it, recommend they seek advice from their GP or nearest health care professional and look at trusted sources as found here.

Do you have any useful tips for giving someone the vaccination without causing undue distress?

• Make sure you choose a time and place that suits the person, keeping noise and distraction to a minimum.
• Use short sentences, pause between them, and simple language to explain what needs to be done and why it is important.
• Give the person time to hear and ask you any questions.
• Visual prompt cards can be used to provide further explanation.
• Ensure good communication – explain what you are doing using short simple sentences, provide reassurance, try to remain calm, smile, hold their hand and remain positive when talking and offering support.
• If the person becomes distressed then stop and try again later – perhaps someone who they respond to well could try or you could use music that the person likes in the background to help them relax.
• Make eye contact and come down to their eye level to make communication easier.
• After the vaccine has been given, offer reassurance and explain any after- effects e.g. “Some people can get a sore arm, headache or fever after the injection”
• Offer a drink afterwards, or do a favourite activity of theirs, or rest if they are feeling tired.

How should I explain to someone with dementia and/or their families about the COVID 19 vaccination?

• Explain to both the person and their family why the vaccine is being offered i.e. to reduce their risk of becoming seriously ill from the virus COVID 19.
• Advise that the vaccination is not compulsory but is highly recommended.
• Explain it is different to the seasonal flu vaccine and people need to have 2 doses for it to be effective – usually 21 days apart.
• Use short sentences and repeat things if needed to help someone understand.
• Some of the statements below may be helpful to support a person with dementia and help them feel more comfortable about having the vaccine:
  “The injection is to protect you from the Covid-19 virus”
  “The injection won’t give you the Covid-19 virus”
  “I would like your permission to give you the vaccine”

What happens if someone with dementia is unable to consent to their vaccine?

• If someone with dementia is unable to consent to the vaccine, then consent must be obtained via a ‘best interest’ decision (which is compliant with the Mental Capacity Act 2005).
• A ‘best interest’ decision is when someone is unable to make a decision for themselves, so the decision may have to be made for them.
• Healthcare professionals need to consult family, friends, other professionals who know the person well, to find out what is in the person with dementia’s best interests.
• If a family member has registered Lasting Power of Attorney for Health and Wellbeing, they must be consulted about any health decisions, such as the vaccine, on their behalf.
• Ask the family what they already know about the person’s past wishes, choices or experiences of vaccinations; for example, do they usually have the annual flu vaccine or have they had any side effects in the past?
• If there are no family members involved then a best interests decision should be made by the care team.
  More information on consent and best interests: https://www.dementiauk.org/get- support/diagnosis-and-next-steps/changes-in-care/capacity-decision-making

This report published by the Care Policy and Evaluation Centre at the London School of Economics and Political Science provides projections of the number of older people (aged 65 and over) living with dementia in the UK and the costs of healthcare, social care and unpaid care from 2019 to 2040.

Download Projections of Older People Living with Dementia and Costs of Dementia Care in the United Kingdom, 2019–2040

The report reveals that by 2040, while the number of people living with dementia in the UK is expected to nearly double (to 1.6 million), the cost of social care is expected to almost triple, increasing from £15.7 to £45.4 billion. It falls to people living with dementia and their families to pay the majority of these costs.

The research found that the number of people living with more advanced dementia will rise more rapidly than the number of people living with mild and moderate dementia. As such, people will have higher associated care needs and more people will need social care for longer, increasing average social care costs.

The study also estimates that families are providing £13.9 billion a year in unpaid care for people living with dementia. This is also projected to increase to £35.7 billion by 2040.

The total cost of dementia to the UK economy has risen to £34.7 billion and will continue to rise to £94.1 billion by 2040. This includes costs to the NHS, paid social care and unpaid care.

Rerefences

This resource aims to enable Clinical Commissioning Groups to achieve and maintain dementia diagnosis rate of at least two-thirds of the estimated number of people with dementia, and improve the quality of and access to post diagnostic care for people living with dementia and their carers.

Download the Dementia Commissioning know how guide

The know how guide contains usefull information and links to documents, case studies and tools to help to achieve commissioning ambitions.

The know how guide covers the dementia care pathway and advocates a systematic, standardised approach to investigating and enhancing the attributes and processes that positively impact effective commissioning of dementia care services.

After working through the document, commissioners should be able to identify and develop, or enhance, the abilities and processes that need to be in place in order to successfully deliver commissioning of high quality dementia care services including:

• Strategic and leadership qualities and abilities
• Awareness of current performance
• Collaborative working with service providers
• Use of appropriate levers and incentives
• Accuracy and use of data in monitoring and reporting
• Resources to address any gaps or improvements required
• Futureproofing knowhow

This tool to support commissioning dementia services will help CCGs and STPs to:

• Improve the Dementia Diagnosis Rate as a continuous process.
• Assist with the refinement of local diagnosis processes and the dementia care path- way to deliver in line with the Implementation guide and resource pack for dementia care and improve outcomes for patients and carers.
• Realise the national ambition to provide consistently good quality, evidence-based dementia care and support for patients and carers.

The Dementia Care Pathway: full implementation guidance, published by the National Collaborating Centre for Mental Health (NCCMH), sets out key commissioning and service development considerations in the delivery and quality of care and support for people living with dementia and their families and carers.

Download The dementia care pathway: full implementation guidance | Appendices and helpful guidance

The guidance outlines the pathway and associated benchmarks to support improvements in the delivery and quality of care and support, for people living with dementia and their families and carers. It sets out what good quality assessment, diagnosis and care looks like in relation to formal guidance, in addition to the views and expectations of people living with dementia and their carers.

The guidance accompanies and builds on NHS England’s shorter Implementation guide and resource pack for dementia care published in July 2017 and revisd in January 2018.

The guide has two clear requirements to enhance dementia care, through:

• increasing the number of people being diagnosed with dementia, and starting treatment, within six weeks from referral; and
• improving the quality of post-diagnostic treatment and support for people with dementia and their carers.

The appendices and helpful guidance includes a diagram of the full pathway, a summary of NICE recommended care for people along the Dementia Well Pathway, information on HEE’s Dementia Core Skills Education and Training Framework and on NHS England Dementia: Good Care Planning, guidance for recording dementia care pathway benchmarks in the MHSDS, recommendations for outcomes measurement and examples of services who are already providing high quality care and elements of the pathways and some helpful web-based resources.

This guide is supported by:

• Dementia coding resource outlines the minimum information that should be included in dementia care planning and offers a frame of reference and a view of the depth and breadth of the areas to address in dementia care planning.
• Good care planning guide for dementia
• RightCare dementia pathway scenario

This guide aims to set out the policy drivers and strategic context for transforming dementia care, and why it is of importance to commissioners, providers and sustainability and transformation partnerships (STPs) in supporting delivery of a number of objectives in the Department of Health’s Prime Minister’s challenge on dementia 2020, published February 2015, which complements the aims of the Five Year Forward View, published in October 2014.

Download Implementation guide and resource pack for dementia care

It provides local services with evidence on what works in dementia care, headline access and quality benchmarks to support a reduction in unwarranted variation and draws on a number of good practice case studies throughout. Its overarching aim is to ensure that people with dementia, and their carers, receive good care and support; that no one has to wait months for an assessment of dementia.

This guide is important, not only for the NHS but for people with dementia and their carers too. It demonstrates our commitment to improving the quality of dementia care across the whole country, building on improvements to date and ensuring that we can provide excellent care and support for those who need it.

This guidance was co-produced by a national expert reference group (ERG) comprising experts by experience, clinicians, service managers, commissioners, academics, people with dementia, carers and others. Local service design should be similarly co-produced to meet the needs of the local population.

This booklet published by Healthwatch Devon aims to enable health centres to adopt dementia friendly practice and to ensure that people with dementia have a positive experience of primary care.

Download Becoming a dementia friendly GP Surgery

People living with dementia can find it difficult to understand signage and require addtional help to find their way. Small changes can have a big impact on improving accessibility, such as

• Consider dementia friendly signs around your building, and
• You could also display a dementia friendly clock in the waiting room.

Suggestions about how to book appointments in a more dementia friendly way include:

• Ensure your appointments system is user friendly
• Offer double appointments. Communication and understanding is often an issue for people living with dementia – give people extra time to enable better consultation, and
• Remind the patient with a dementia diagnosis, or their care partner, of their appointment via a pre appointment telephone call if required.

Finally, support your workforce by ensuring all staff are Dementia Friends and encourage a member of staff to become a Dementia Friends Champion.

The National Audit of Dementia (NAD) (care in general hospitals) measures the performance of general hospitals against criteria relating to care delivery which are known to impact upon people with dementia while in hospital. The third audit collected data between April and November 2016.

The National Audit of Dementia Criteria include policies and governance in the hospital that recognise and support the needs of people with dementia, elements of comprehensive assessment, involvement of carers, discharge planning, and identified changes to support needs during admission.

Download National Audit of Dementia – third report |Individual hospital reports | Tools and guidance documents used | Standards for the audit

The audit found that hospitals in England and Wales have made many positive changes aimed at making hospitals more “dementia-friendly”. Overall nearly 70% of carers rated care as excellent or very good, and 75% said that the person with dementia was definitely treated with respect by staff. Many more hospitals are providing dementia awareness training to all groups of staff, and 96% have a training framework for dementia care, up from 23% in the first round of audit in 2011. Nearly all hospitals (94%), have created dementia “champions” to lead change and support staff, following a recommendation made in Round 2. Staff however said they could not always access specialist support, especially out of hours.

Nineteen percent of staff surveyed said that patients with dementia had nutritional needs met only some of the time, and five percent said their needs were not met. Three quarters of staff (73%) said they could obtain food 24/7 for their patients. Food outside of regular mealtimes is necessary for people with dementia as many patients forget to eat or only eat little and often, because dementia has disrupted their sense of routine.

In the webinar below, Dr Oliver Corrado, Dr Beth Swanson and Chloe Hood from the National Audit team present the findings from the third audit.

Key recommendations from the report include:

1. The Chief Executive Officer should ensure that there is a dementia champion available to support staff 24 hrs per day, 7 days per week. This could be achieved through ensuring that people in roles such as Site Nurse Practitioners and Bed Managers have expertise in dementia care.
2. National Commissioners should propose a national programme aimed at embedding the collection, sharing and use of person centred information with a clear expectation this information will follow the patient between providers.
3. Chief Executive Officers and commissioning services should make sure when tendering for new catering contracts that access to finger foods and snacks 24 hours a day is included.
4. The Safeguarding Lead should ensure staff are trained in the Mental Capacity Act, including consent, appropriate use of best interests decision making, the use of Lasting Power of Attorney and Advance Decision Making. Training should cover supportive communication with family members/ carers on these topics.
5. The Medical Director should ensure that hospitals have robust mechanisms in place for assessing delirium including appropriate assessment on admission and discharge with full recording of results.