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

Since the COVID-19 pandemic there has been an increase in the time people need to wait for their memory assessment appointment. This briefing published by the Dementia Change Action Network (DCAN) explores people’s experiences of waiting for a memory assessment.

Download Pre-memory assessment support project briefing

DCAN, in partnership with NHS England and Improvement, have been undertaking work to learn from the experiences of people waiting for memory assessments to hear about the challenges they are facing and the support they need during this time.

Providers of support have also been engaged to clarify and enhance visibility of the support currently available to people waiting for a memory assessment.

This briefing aims to increase awareness of the need for pre-diagnostic support to help enable people referred to memory services to live as well as possible pre-assessment and diagnosis. It sets out in detail, the work undertaken to support those waiting for a memory assessment so far, drawing on feedback from people with lived experience, providers of support and staff in memory services. It also highlights the various needs of people waiting for assessment and diagnosis, and their carers.

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 resource is primarily for clinicians working with people with dementia, but can also be used by carers and people with dementia. This document takes the Dementia Well Pathway and sets out the adjustments and amendments needed to respond to the COVID-19 pandemic. It highlights key priorities and actions for each step in the pathway.

It spans community, in-patient and other health and social care settings and signposts to useful resources from a variety of organisations. A resource section for people with dementia and their carers is also included.

Download Dementia wellbeing in the COVID-19 pandemic

• Preventing Well Keeping fit and active to prevent the mental and physical consequences of isolation
• Diagnosing Well Maintaining diagnostic services and awareness of symptoms of COVID-19
• Treating Well Ensuring access to the best treatment available
• Supporting Well Providing personalised care and support to carers at home and people in care homes
• Living Well Optimising the lived experience of dementia
• Dying Well Ensuring the needs of people with dementia are met at the end of life

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 online course enables you to gain a unique insight into dementia through the stories, symptoms and science behind four less common diagnoses of dementia, the people involved and the implications of these for our wider understanding.

In this online course, you’ll discover key issues in dementia care and research. You’ll explore four less common forms of dementia, through the eyes of people affected by them. World-leading experts at UCL will show how research into the signs, stages, symptoms and causes of these forms can bring us closer to defeating dementia.

Core topics covered in the course include:

• the symptoms and science behind familial Alzheimer’s disease
• behavioural variant frontotemporal dementia
• dementia with Lewy bodies and posterior cortical atrophy

Access the course at https://www.futurelearn.com/courses/faces-of-dementia

By the end of the course, you’ll be able to:

• Identify the range of symptoms that people experience as a result of less-common dementia diagnoses.
• Explain how diagnoses of dementia differ in terms of the parts of the brain affected and the causes of changes in the brain.
• Reflect upon the experience of people who are given a diagnosis of dementia.
• Explore the role of scientific research in furthering our ability to care for and treat people with dementia.
• Apply this knowledge to develop a broader understanding of the symptoms and experiences of people with more common forms of dementia.
• Evaluate your own views and experiences, in comparison to those expressed by others.

This course will be of particular interest to:

• Anyone who works with people diagnosed with dementia
• People who have a friend or family member who has dementia
• People in the early stages of the disease
• Students with an interest in learning more about dementia

The World Health Organization (WHO) guidelines on risk reduction of cognitive decline and dementia provide evidence-based recommendations on lifestyle behaviours and interventions to delay or prevent cognitive decline and dementia.

The WHO guidelines recommend that people can reduce the risk of cognitive decline and dementia by getting regular exercise, not smoking, avoiding harmful use of alcohol, controlling their weight, eating a healthy diet, and maintaining healthy blood pressure, cholesterol and blood sugar levels.

Download Risk reduction of cognitive decline and dementia | Evidence profile

The guidelines provide the knowledge base for health-care providers to advise patients on what they can do to help prevent cognitive decline and dementia. They will also be useful for governments, policy-makers and planning authorities to guide them in developing policy and designing programmes that encourage healthy lifestyles.

The reduction of risk factors for dementia is one of several areas of action included in WHO’s Global action plan for the public health response to dementia. Other areas include:

• strengthening information systems for dementia
• diagnosis, treatment and care
• supporting carers of people with dementia and
• research and innovation.

Music for Dementia 2020 is campaigning to make music free for people living with dementia by 2020. Led by The Utley Foundation, the campaign is a direct and positive response to the Commission into Dementia and Music report What would life be – without a song and dance, what are we?.

To ensure every person living with dementia has access to music, the campaign is taking the lead by creating a taskforce of stakeholders from across the music and dementia fields to embed music into dementia care pathways.

The campaign has a clear vision that by 2020 we want to:

1. Have the support of the music, social, health,  and care sectors in making music readily available for people living with dementia.
2. Create a collective understanding across society that music is a necessity for people living with dementia and they need access to it now.

Find out more at https://www.musicfordementia2020.com

Music is a powerful connector and has the ability to bring people together in the here and now. It can enliven, stimulate and enable people living with dementia to express themselves creatively through musical engagement.

Research has shown and lived experiences demonstrate that music has the ability to help reduce the often-distressing symptoms of dementia, such as agitation, apathy and anxiety.

Music supports people living with dementia to communicate beyond words, helping them to connect with others. It supports emotional health and wellbeing, particularly at a time when emotions can be overwhelming or difficult to process or manage. It has a valuable role to play in enhancing quality of life and supporting carers in their vital roles.

When delivered effectively, music provides a way to be with and stay connected with loved ones and carers through shared experiences.

This report by the Commission on Dementia and Music outlines the value and benefits of music for people with dementia and looks at the important next steps which can be taken to ensure that everyone with dementia is able to access music.

Download What would life be – without a song or dance, what are we?

The report provides a unique exploration of the existing ecosystem of music for people with dementia and brings together for the first time a wide range of evidence, including academic papers and written and oral evidence. Site visits to observe projects in action were also fundamental in bringing to light the value of this field of work.

The evidence shows that music helps to minimise some of the symptoms of dementia, such as agitation, and can help to tackle anxiety and depression. The evidence also shows the considerable value of music in improving the quality of life for people with dementia, by helping to increase social interaction and decreasing stress hormones.

Meanwhile, evidence suggests that there is a ‘memory bump’ for music. It appears that people with dementia retain the clearest memories for music they enjoyed and heard between roughly the ages of 10 and 30. This valuable insight offers us the opportunity to connect with loved ones with dementia, by understanding what might be most meaningful for them.

The report calls on the music industry, the public sector, clinicians, charities, the technology sector and others to recognise and champion the right of people with dementia to have access to music. The report also aims to raise public awareness about how music can be used to bring about valuable benefits and improve the lives of people with dementia.