This week is Dementia Action Week, a dedicated week which encourages individuals to take action to improve the lives of those affected by dementia.

Many will be familiar with the fantastic work of Thomas Whitelaw, known commonly as ‘Tommy’ across the country; but always as ‘Thomas’ to his mum Joan, who had vascular dementia and sadly passed away in 2012. Thomas has become a well-respected patient and carer advocate, and is the UK Project Lead for Dementia Carer Voices, Health and Social Care Alliance Scotland.

Thomas regularly speaks to health and care staff about the distressing challenges he experienced when caring for Joan. He has taken that very personal first-hand knowledge to explain how an inequity of service can have a devastating effect on families and carers, to thousands of staff across the country; while at the same time highlighting the incredible difference that great care also made to him and his mother at a very difficult time when their lives were affected by dementia.

Colleagues attending those talks are invited to reflect on how they can and will lead change and make a pledge of their own practice. Pledge trees have been created in hospitals, care homes, universities and workplaces all across the country and these also offer a reflective place for frontline staff.

As numbers increased Thomas recognised that these pledges needed a formal structure around them to ensure that, what were obviously good intentions, turned in to something which could be clearly identified, addressed, measured and turned into a purposeful action.

It was agreed that the national framework for nursing, midwifery and care staff ‘Leading Change, Adding Value’ (LCAV) could offer a solution to formally ensuring that these pledges made a difference, and importantly could be shared elsewhere to spread good practice. Therefore, a partnership was established last year with Thomas and the national team.

The framework highlights the need to apply the same importance on measuring the outcomes of work as well as demonstrating quality. All nursing, midwifery and care staff have a key leadership role in identifying and addressing unwarranted variation – where there are differences in care, experience or outcomes – and supports all staff, wherever they work, whatever their role, to improve outcomes, experiences, and the use of resources.

The framework has been used in various ways to help turn pledges into excellent practice, such as the Healthcare Assistant colleague at the Royal Preston Hospital who recognised that although dementia care in the Emergency Department was of a high standard, it could still be enhanced, particularly for those in their later stages of dementia. Wristbands with a flower symbol for people with dementia were developed, discretely alerting health professionals and ensuring that care is always adapted to individual needs. This has had a hugely positive impact on families, carers and health professionals, helping to prevent what could be often stressful visits.

Another great example is at Sandwell and Birmingham NHS Trust, where it was recognised through listening to the experiences of patients, carers and staff, that people with dementia who had a lack of understanding were frequently experiencing high levels of distress during admission to hospital. This led to a nurse developing a ‘Dementia, Delirium and Distress pathway’, the purpose of which is to embed a compassionate and person-centred approach to managing distress based on individual need, not a diagnosis. Patients are supported and assessed by the team recognising and identifying their individual needs, improving their experience of care.

We have also been delighted to see that Wexham Park Hospital, Frimley Health NHS Foundation Trust has recently opened a new dementia friendly lounge that has been named after Thomas’ mum Joan. The lounge provides a quiet, relaxing space outside of the clinical environment, which can support individuals, families and staff to have a better experience, and have meaningful ‘What Matters to You?’ conversations.

A film of Thomas discussing the links between his work on dementia and LCAV can be viewed here. A national ‘LCAV Atlas of Shared Learning’ is currently being developed and will include a collection of over 200 case studies. These case studies are demonstrating how nursing, midwifery and care staff have identified and addressed unwarranted variation in practice and improved outcomes, experience and use of resources. Importantly, as this is Dementia Action Week, we would be delighted to receive more case studies demonstrating how practice in different organisations, whether big or small, is improving the lives of those affected by dementia.

Further information about Leading Change, Adding Value can be found on our website.

Further information about the work of Thomas Whitelaw can be found on the Health and Social Care Alliance Scotland website.