Although the NDAA is formally disestablished (but working on the Dementia-Friendly Hospital Charter Wales and England until October 2021), there is much to be celebrated in what the alliance, members, hospital trusts and campaign partners have achieved since it was founded in 2010. There have been detailed annual reports, international webinars, busy annual conferences, co-production with people affected by dementia and countless Steering Groups that we sat on. But in addition to those, here are a selection of our top achievements!
We have amassed a network of over 16,500 people comprising of national members, newsletter subscribers, hospital trusts and twitter followers who all have an interest in dementia.
Dementia-Friendly Hospital Charter – Wales
Public Health Wales awarded the NDAA a two-year grant to provide expertise to replicate the Dementia-Friendly Hospital campaign in Wales, which will end in the autumn. So far we have convened Steering Group meetings and workshops on the SPACE principles, whereby we collectively decided on the charter principles. Health Boards will have a readiness assessment to ensure that they have processes in place for implementing the charter. We are amalgamating Care Fit for VIPS (University of Worcester) with the charter, to ensure that dementia care is person-centred. A web developer is going to create an assessment river diagram so that hospitals can view visually how they score on dementia practices. Sarah Tilsed presented at both UK Dementia Congress 2020 and Wales International Dementia Conference 2021 on the creation of the Welsh Charter.
From Seldom Heard to Seen and Heard
This campaign brought NDAA members together for improved outcomes for people living with dementia and their carers from marginalised groups. We mainly focussed on those with learning disabilities, in prison, and who are LGBT+. We delivered workshops, webinars, and events. This campaign also saw us a write a letter to the Minister of State for Prisons and Probation signed by campaign partners calling for a national strategy. We worked with MacIntyre on an easy-read version of the Dementia Statements for people with learning disabilities. And we published a story in Diva (the world’s best-selling magazine for lesbians) about dementia within the LGBT+ community. Following this, we partnered with Alzheimer’s Society alongside other organisations on the innovation pilot Bring Dementia Out, which is now a full-time campaign run by the LGBT Foundation.
In 2010 people affected by dementia stated what type of care and support they would hope to receive in the future – this was the National Dementia Declaration, a set of seven expectations of what life should be like for people with dementia. These Statements became known as the ‘I’ Statements and informed the Prime Minister’s Challenge on Dementia in 2012. The government’s Dementia 2020 Challenge contained a commitment to review the ‘I’ Statements, taking into account the progress made since they were originally published. Alzheimer’s Society, as members of the NDAA, led this review on behalf of the NDAA in 2017 and renamed them the Dementia Statements. By focusing on the Statements and the human rights laws in which they are enshrined, in 2020 the NDAA delivered practical advice and guidance on implementation for practitioners – this publication is called Dementia Statements: Through a Legal Lens.
Alzheimer’s Disease International
We were selected by ADI, the largest international dementia conference to present in Chicago (2018) and write an expert essay (2019) – both on our campaign From Seldom Heard to Seen and Heard. Kelly presented on a panel along with speakers from the USA, Cuba, Canada and New Zealand on the overall topic of ‘Diverse populations – inclusion and equality’. We also presented at UK Dementia Congress on the same campaign.
Dementia-Friendly Hospital Charter – England
In 2012 we launched the Right Care: a call to action to create dementia-friendly hospitals. All acute trusts in England were asked to make a public commitment to becoming dementia-friendly. The Charter is the second phase of the Right Care initiative and focuses on our Dementia-Friendly Hospital Charter, which was updated in 2020 to reflect the pandemic. It provides high-level principles of what a dementia-friendly hospital should look like and recommended actions that hospitals can take to fulfil them. In the Dementia 2020 Challenge, one of the key aspirations is to create dementia-friendly hospitals. We now have a national Dementia Leads Network and poster to publicise in hospitals. Additonally, we sit on the National Audit of Dementia steering group and partner with UK Dementia Congress each year to run sessions on hospitals.
Carers’ Call to Action and tide
In 2013 leading national charities, public bodies and private providers came together to meet the challenge of carers not being provided with enough support, through the Carers’ Call to Action which we ran. They provided a coherent, coordinated and concerted response to the intolerable situation. Following on from our campaign, and created by carers, tide – Together in Dementia Every Day – was formed in 2014 and is a national involvement network for carers and former carers of people with dementia, and was hosted by Life Story Network CIC. In 2020, tide got its very own charity status!
Local Dementia Action Alliances
We were formed in 2010 and created over 200 local alliances with the support of Department of Health and Social Care funding. These were across England and all ran quite differently to one another. For a Dementia-Friendly Community to be created, a local DAA needed to be in place. In 2015 the overseeing of local DAAs ceased to be the responsibility of the NDAA and making the two separate entities.
Challenge on Dementia
NDAA have been a key delivery partner to the Challenge on Dementia since its formation, including sitting on its Dementia Programme Board. The coalition government in 2010 stated its commitment to implement the National Dementia Strategy; however, that could only do so much. The Department of Health & Social Care, as a signatory to the Declaration, set out what it intended to do to help improve the lives of people with dementia. However, radical and sustainable change could only come about through the action of individuals and organisations working together locally and nationally to challenge what was wrong and to do things better. This was done through the creation of the NDAA.
The Right Prescription
In 2011, the NDAA launched its first ever campaign ‘The Right Prescription – A call to action’, which saw a reduction in the inappropriate use of antipsychotic drugs for people with dementia.