John’s Campaign is about the right of people who care for someone living with dementia to be able to stay with them – and the right of people with dementia to be able to have a family carer stay with them. It applies to all hospital settings: acute, community, mental health and its principles could extend to all other caring institutions where people are living away from those closest to them.

John’s Campaign recognises the important role of those family members who care for people who are living with dementia. Behind its simple statement of purpose lies the belief that carers should not just be allowed but should be welcomed, and that a collaboration between the patients and all connected with them is crucial to their health and their well-being.

John’s Campaign website http://johnscampaign.org.uk outlines the history of John’s Campaign, showcases the voices of some of those who have provided its inspiration and support, and provides details of the organizations with whom John’s Campaign has worked in partnership.

To get in touch, please email Julia Jones julia-jones@talk21.com or Nicci Gerrard nicci.gerrard@icloud.com. Julia can also be reached by phone on 01245 231898.

You can also follow John’s Campaign on Facebook,  Twitter and YouTube.

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.

This report published by the Alzheimer’s Society brings together views of more than 3,500 people with dementia, carers and the public on what it is like to live with dementia. It provides an insight into the gap between the things that people living with dementia need to live well and their day-to-day reality.

Download Turning Up the Volume: unheard voices of people with dementia

The report containsthe findings from Alzheimer’s Society’s largest-ever survey with people with dementia to hear their views and experiences of what daily life is like.

This ambitious and innovative piece of research, conducted by Ipsos MORI, has people affected by dementia at its heart. Through their words you’ll hear the real story of what it’s like to live with dementia, or be an unpaid carer, in England, Wales and Northern Ireland today. It also highlights what the general public thinks and feels about the condition.

The report is based on four strands of research: a survey of 966 people with dementia; 32 in-depth interviews with people with dementia including those from different ethnic and social groups; an online survey of 500 unpaid carers; and an online survey of 2,356 adults aged 16-75 in the United Kingdom.

The key findings of the research include:

• Almost half (48%) of people living with dementia worry about becoming a burden
• Over a quarter (27%) of carers for people with dementia feel “cut-off from society”
• 41% of the public disagree it’s just as easy for people with dementia to play an equal part in society as anyone else
• Only 17% of carers agreed that ‘there is enough support available for those who care for people with dementia’

Key themes from the research highlight that a stigma around dementia; some people living with the condition believing the public don’t understand their symptoms, or how to interact with them.

The care pathway for dementia can be difficult to understand due to the complexities of the disease. Any approach has to consider not just issues surrounding the person but also the carer and family, the community and the many services involved in caring and supporting the person with dementia.

This short animated video highlights how living with dementia could be through the ‘well pathway for dementia’. It shows the importance of a holistic partnership approach to supporting the person with dementia, their families and carers within local communities.

The animation was commissioned by NHS Doncaster Clinical Commissioning Group on behalf of Yorkshire and the Humber Clinical Network for dementia and has been developed by Inkwell Arts Media and Leeds Mind.

The information on this knowledge portal is organised across the ‘well pathway for dementia’. This is also known as the ‘five wells’ and includes:

1. Preventing well
2. Diagnosing well
3. Supported well
4. Living well, and
5. Dying well

The Dementia Atlas is an interactive map that plots data about dementia care and support, allowing people to compare the quality of dementia care across the country.

The data is grouped in themes based on NHS England’s well dementia pathway which serves as a framework to ensure people with dementia have a better experience of health and social care support from diagnosis through to end of life.

Access the map at https://shapeatlas.net/dementia

The Dementia Atlas contains an ‘Indicators’ panel which holds a range of data organised by themes as follows:

Preventing well
People can reduce their risk of dementia by living healthier lives. The earlier healthy behaviours are adopted the more likely a person is to have more years free from Illness, disability and frailty.

Indicators

• Smoking prevalence
• Hypertension prevalence

Diagnosing well
How many people within your local area, have been diagnosed with dementia?

Indicators

• New patients with dementia who have had a blood test recorded
• Dementia prevalence: ages 65+
• Dementia prevalence: all ages

Supporting well
More care and support for people with dementia, their families and carers should be provided out of hospital within people’s local communities to avoid unnecessary emergency admissions.

Indicators

• People with dementia using inpatient hospital services
• Emergency admissions

Living well
We want every person diagnosed with dementia to receive meaningful care following their diagnosis. Find out how many dementia Friends are in your area and whether your community is Dementia Friendly.

Indicators

• Care reviewed in the last 12 months
• Dementia Friends
• Dementia Friendly Communities

Dying well
In England, approximately 480,000 people die each year. One in 10 of these people will have dementia. One in three people who die after the age of 65 have dementia. All health and care staff who support dying people must be capable and compassionate in treating people with dementia.

Indicators

• Mortality rate
• Death in usual place of residence

Over the next five years, through working with partners across Greater Manchester, Dementia United aims to improve the lived experiences of people with dementia, and reduce pressure on the health and social care system. In short, Dementia United is aiming to make Greater Manchester the best place in the world to live for people with dementia.

As part of the government’s historic devolution agreement, new decision making and spending powers are being given to Greater Manchester from April 2016. One of the early health and social care priorities for this work is dementia.

Dementia United is a dementia transformation programme led by Sir David Dalton, Chief Executive of Salford Royal NHS Foundation Trust, and his team.

Dementia United aims to improve the lived experience for people with dementia and reduce dependence on the health and social care system. To achieve both these objectives it is clear there must be better support for carers, so that they, and those they care for are able to live well with dementia and are not pushed to crisis point.

In the video below Professor Maxine Power explains what’s been happening across the Dementia United team this year.

Tweets by @dementiaunited

Thrive is the leading charity in the UK using gardening to change the lives of disabled people.

Thrive help people who want to garden at home, on an allotment, in a community setting or who may to access our own structured horticultural therapy programmes.

Gardens provide restorative environments and getting outside promotes recovery from stress and helps restore the ability to focus attention. Gardening can lift moods and help people to connect with others, reducing isolation by forming friendships and improve communications skills.

Thrive run structured programmes of activities for people with dementia which focus on positive reminiscence, re-connecting with others including friends and family and gentle appropriate exercise and cognitive stimulation.

Thrive also run workshops in dementia care homes to encourage more people to take part in gardening and deliver training, support and information for professionals working with dementia patients.

A research programme underpins Thrive’s work to provide evidence and improve understanding.

Results from a piece of research which helped us pilot a new programme of horticultural therapy activities for people who were diagnosed with dementia before the age of 65.  The perceived benefits of the activities have now been assessed qualitatively and quantitatively and the results are available through this publication. Download it here.

The Togetherness Dementia Choir in Scunthorpe provides a stimulating and fun activity for those people who have a diagnosis of dementia or who are having difficulties with their memory.

The research regarding the value of singing for people with dementia and memory problems is well documented, some people who have severe difficulties with memory and recall may be unable to converse verbally, however often retain the ability to sing familiar songs, and respond to music in such a way that stimulates all the senses.

The choir has been running for a year.  There are approximately 30 regular members, with a repertoire of 70 songs across all genres from which members choose. It is not necessary to be able to sing, and no experience of singing in a group is required, everyone is welcome. Those with memory problems are often accompanied by their children and grandchildren, other family members, friends or carers for example.

The choir is supported by charitable funds from the Rotherham, Doncaster and South Humber NHS Trust (RDaSH). The choir was runner-up in the RDaSH Annual Trust Awards for the best patient experience and carer involvement initiative and was also nominated as a finalist in the national dementia friendly awards in London.

The idea of creating a choir was originally developed by Tracey Gouldthorp, a community psychiatric nurse. She now runs it in her own time with occupational therapist Janet Riggall.

The choir meets at 6pm every Thursday at the Community Hub on Alvingham Road in Scunthorpe.

This briefing paper published by the Joseph Rowntree Foundation contributes to the emerging evidence base for Dementia friendly communities by drawing out the key messages from independent evaluations of their work programmes in Bradford and York.

Download How can we make our cities dementia friendly? Sharing the learning from Bradford and York

Dementia friendly communities (DFCs) aim to be accessible, inclusive, welcoming and supportive to those affected by dementia, enabling them to contribute to, and participate in, mainstream society. More than 80 places across the UK are now working towards becoming more dementia friendly, with similar movements gaining ground overseas.

This brieifng paper explains that the four cornerstones of people, places, networks and resources ^[1] offer a simple and helpful framework, as do the Alzheimer’s Society recognition criteria ^[2].

References

1. Crampton, J., Dean J. and Eley, R. (2012) Creating a dementia friendly York. York: Joseph Rowntree Foundation. https://www.jrf.org.uk/publications/creating-dementia-friendly-york
2. Alzheimer’s Society in Partnership with the Dementia Action Alliance (2013) Guidance for communities registering for the recognition process for dementia friendly communities. https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=2136