Dementia: working together

Dementia - image by Andy Pearsall

Dementia Action Week, 21st-27th May 2018

Nobody is immune to developing dementia in any of its many forms, indeed one in three of us born today will develop dementia in their lifetime (AS 2017; Lewis 2015). We probably all know someone that has been affected by dementia; if not within our own private or working lives we are exposed to frequent media broadcasts of well-known folk that have been affected- only this week it was announced that the actor Barbara Windsor is living with Alzheimer’s disease.

Dementia is considered to be one of the key Public Health priorities across the UK with dementia strategies, policies and action plans now published and ‘out there’. There is now a detectable shift to action and with Dementia Action Week coming up on 21st-27th May #DAW2018 there is a definite change of focus from dementia ‘awareness’ to ‘action’.

Moreover, in February this year our own Dementia Action Plan for Wales was published which is hoped will positively impact the estimated 45,000 people living with Dementia in Wales (AS 2015).

Of course, action can take many forms - indeed awareness raising and education in itself is a form of action and is clearly outlined within the Wales Action Plan which sets outs to increase the number of people who are able to recognise dementia through awareness raising initiatives for example, Dementia Friends and also that appropriate levels of dementia care training is available to NHS healthcare staff in line with Good Work: A Dementia Learning and Development Framework for Wales.

Both these key drivers talk about the importance of involving key stakeholders - that is, people with the lived experience of dementia and their supporters - in the development and delivery of such education and training - which was also the premise of these publications. In other words, co-production, which is important in improving the quality of service or care.

With the awaited publication of the new NMC Standards for Education and Training expected next week, it is anticipated that ‘service-user’ engagement and involvement in undergraduate nurse training will be strengthened as a key feature of curriculum or programme design and development. This surely then provides a real opportunity for early collaborative working with people with lived experience of dementia, with the aim of changing perceptions and shifting attitudes. We need to be sat around the table together at the early stages of the process.

There are areas of good practice within Higher Education across the UK and links have been made with the national Higher Education Dementia Network (HEDN) where good practice around dementia education can be shared. In Wales, at the University of South Wales, all undergraduate Nursing and Midwifery students become Dementia Friends before embarking on first clinical placement; at Cardiff University people with dementia are actively contributing to the curriculum and taught sessions.

There is, of course, much work to be done and we need to find innovative ways of always ensuring the presence of and listening to the voices of people with dementia.
In the words of the Dementia Engagement and Empowerment Network (DEEP) "Nothing about us without ALL of us".

Author: Karyn Davies

Karyn Davies is a senior lecturer with the Mental Health Nursing Team. She has worked in a range of settings including wards, community and day services, been a Care Home Nurse Inspector with Care and Social Services Inspectorate Wales and currently maintains a Clinical Reviewer role with Health Inspectorate Wales.

 

References:

  • Alzheimer’s Society, What is Dementia? London, Alzheimer’s Society, (Last accessed 10/05/18)
  • Social Care Wales (2016) Good Work- A Dementia Learning and Development Framework for Wales.  (Last accessed 10/05/18)
  • Lewis F (2015) Estimation of future cases of dementia from those born in 2015. Consultation report for Alzheimer’s Research UK
  • Welsh Government (2018) Dementia Action Plan for Wales 2018-2022 Taking Wales Forward. Welsh Government.
Image by Andrew Pearsall