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Individuals, businesses, community and civic organizations can all take action on dementia to improve the lives of quality of life for people with dementia.

Across the UK, cities, towns and villages are leading the way on a new path to becoming dementia-friendly communities. Alzheimer’s Society, working with others, have set out on an ambitious agenda to make living well with dementia a reality, starting with one community at a time.

 

The dementia-friendly movement hinges on the growing recognition that health and social care alone cannot tackle the dementia challenge. In England, close to 670,000 people are living with dementia. Across the UK, 800,000 people have dementia, and within the next ten years, this number will be more than one million. Two thirds of people living with dementia currently live in the community, and the demands of the condition are putting unprecedented financial pressure on the health care system. Dementia costs the UK economy £23 billion per year and a third of these costs are born by informal or family caregivers. The international urgency to act on dementia cannot be ignored, either. New estimates from Alzheimer’s Disease International suggest the number of people with dementia will increase from 115 to 135 million by 2050. Doing nothing is not an option. 

 

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Research into how well people with dementia are living continues to show that much more needs to, and more importantly can, be done to improve this picture.  In England, Wales and Northern Ireland, a renewed focus is being placed on the importance of community involvement and what this means to people with dementia. (1,2)  Alzheimer’s Society’s new report, "Building Dementia-Friendly Communities: A Priority for Everyone," (2013) found that too many people with dementia do not feel a part of their community, nor do they think society is geared up to help them live well. People with dementia want to live in communities that support them in achieving the things that matter to them. Yet, just being able to keep doing everyday tasks, such as shopping or visiting the library, tend to stretch beyond their reach. (3)  

 

The report focused on what being dementia- friendly means to people affected by the condition. Overwhelmingly, people with dementia who were surveyed lack the confidence to get out in their local area and sadly, a third of people living with dementia leave the house less than once a week, and one in ten leave their house less than once a month. Ten areas of focus emerged from the research. A dementia-friendly community needs to recognize and act on the views and voice of people with dementia, and their caregivers. Early diagnosis, and personalized and integrated care must be the norm. Community solutions that promote independence and early intervention are critical. There is a significant role for improving access to transport and for businesses and services to become responsive to the needs of people with dementia.

 

Alzheimer’s Society is a leader in the creation of dementia-friendly communities. In England, the Prime Minister has appointed a Champion Group of leading civic organizations and businesses and emergency services to oversee this work, and practical steps are being taken, both locally and nationally, to ensure that people with dementia are afforded the best quality of life. The response from communities has been impressive. The Prime Minister’s initial ambition for 20 communities to be working towards becoming dementia-friendly has been exceeded, with over 50 areas having expressed interest in the program.

 

One way of getting involved is by signing up with a local Dementia Action Alliance. These local alliances or similar action groups bring together diverse stakeholders including bus companies, taxi firms, police, fire and rescue services, high streets, local authorities, charities, care providers and health trusts, faith groups and schools. Crucially, all Dementia Action Alliances are centred around the views of people with dementia and their caregivers.

 

Communities are now being invited to sign up to a formal recognition process to demonstrate their commitment and actions. This provides a framework, alongside flexibility, to enable communities to provide what matters for people with dementia in their community. A set of foundation criteria has been developed for local areas to work towards and by registering online, communities can use and display the ‘working to become dementia- friendly’ recognition symbol, which ensures consistency and quality in the program.

 

In the village of Debenham in rural Suffolk, local people have pulled together to recognize that dementia is not just a national problem; it is personal, and support for people with dementia must be provided locally and supported by the community. The project is now up and running, offering a comprehensive set of volunteer-based dementia services to the local area.

 

Such projects are starting to generate results and make an impact for people living with dementia. Economic modeling conducted for Alzheimer’s Society also found that dementia-friendly communities are places that will save money. By ensuring that people with dementia live independently for longer and avoid the crisis points that end up in hospitals or early admission into care homes. For every one person who is able to live at home rather than in residential care, there is a saving of £11,296 per year or £941 per month.

 

Yet, there is still some way to go to realize these savings. In England, less than half of those living with dementia have a formal diagnosis,  but local projects are showing how to make a difference to those numbers. Alzheimer’s Society ran two early diagnosis pilot projects to increase diagnosis rates. By targeting media to highlight the issue of under-diagnosis, engaging with local stakeholders and running dementia awareness events throughout the community, there has been a dramatic improvement in the uptake of information on early diagnosis and the number of people acting on concerns about dementia. Referrals to memory clinics have risen and 60 percent of GP practices reported an increase in the size of their dementia registers over the period of the pilot project.

 

Alzheimer’s Society is also supporting an ambitious program to create a dementia-friendly generation. Twenty-two schools and colleges in England have committed to raise awareness and understanding of dementia among young people. An evaluation has found wide benefits in schools, at home, and in the community. These are related not only to a greater understanding and awareness of dementia, but also to pupils' health and lifestyles, global perceptions of older people, and understanding of caring roles and the challenges caregivers face. Many of the activities, such as creating life story books, also had a positive impact on people living with dementia. A Dementia Resource Suite is now available for all schools, providing guidance on dementia learning across the curriculum.

 

Supporting all of this work, Alzheimer’s Society is also running a national initiative to create a network of one million Dementia Friends across England by 2015, with parallel programs under development in Wales and Northern Ireland. Across the country, Dementia Friends Champions are being trained to offer a 45-minute information session at which interested people will become Dementia Friends. Sessions have been held across workplaces, including an impromptu one at Glastonbury Festival.

 

Businesses are getting involved too, from the local level to the national. As part of their commitment to make Salford a dementia-friendly community, drivers at Mainline Seven Taxis will become Dementia Friends by the end of 2014. The business is also taking practical steps, such as new booking arrangements, to help caregivers and people with dementia. National examples include work in the banking sector; Lloyds Bank has been working with 24 other financial services to develop a financial services charter to help staff recognize, understand and respond to customers with dementia.

 

Addressing dementia will require a concerted and collaborative effort from all sectors of society. Individuals, businesses, community and civic organizations can all take action on dementia to improve the lives of quality of life for people with dementia. While a dementia-friendly community cannot exist in the absence of a high quality and integrated health and social care system, it is only through working together towards the creation of dementia-friendly communities, that people with dementia will be able to live well with the condition.

 

For more information, visit www.alzheimers.org.uk


(1) Alzheimer’s Society (2013). Dementia 2013:
The hidden voice of loneliness. Alzheimer’s Society. London.


(2) Alzheimer’s Society (2012a). Dementia 2012:
A national challenge. Alzheimer’s Society. London


(3) Alzheimer’s Society (2013). Building Dementia Friendly Communities: A Priority for Everyone.

 

About the author

George McNamara is Head of Policy and Public Affairs at Alzheimer's Society UK. He is currently supporting the implementation of the Prime Minister's Challenge on Dementia, in particular the creation of dementia-friendly communities. He has held senior policy positions at the British Red Cross, Action for Children, the UK Parliament and civil service.

 
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