There are estimated to be 900 000 people with dementia in the UK, and indications are this will increase to one million people by 2025 and two million by 2051 (Wittenberg et al, 2019). While dementia is associated with old age, there are approximately 42 500 people under the age of 65 years diagnosed with young onset dementia. Due to the progressive nature and neurodegeneration of dementia, it is now the leading cause of death in England and Wales, accounting for 12.5% of all deaths registered in 2019 (Office for National Statistics (ONS), 2020).
The majority of people diagnosed with dementia live in a community setting, whether that is in their own home, sheltered accommodation, a hospice or a care home; indeed, there are few health and social care services where people with dementia are not to be found and, as such, dementia is everyone's business. It is likely that generalist clinicians in primary care, such as nurses, GPs, pharmacists, occupational therapists and so on, will be a person's first port of call when they report that ‘something’ is not right or that they are facing difficulties. Similarly, such clinicians may also observe early changes in their existing patients that indicate a possibility of dementia. As such, these healthcare professionals may then need to be able to take the appropriate action by initiating the referral process for a memory assessment.
However, once a diagnosis of dementia has been made, this does not mean that the person will automatically come under the direct care and supervision of specialist dementia services. Specialist dementia services, often situated in secondary mental health services, are often only available to those affected by dementia that have complex needs, such as comorbid mental health conditions, behavioural problems or other complexities, whether this is through continued monitoring from a memory assessment service or a dementia intervention team.
However, there are a growing number of admiral nurses across the UK, who are specialists in dementia care that support families affected by dementia in a range of settings and care contexts. Admiral nurses offer a case management approach to help families understand dementia and its effects and aid them in developing the confidence to manage and navigate their future with dementia. Another significant element of this specialist role is to support generalist clinicians to work with families affected by dementia on their own caseloads and in their everyday practice, through providing supervision, mentorship and educational interventions.
One of the standard resources used across health and social care is that of educational text, whether that is in a standard book or journal format or an online resource. Such resources are aimed at providing information and guidance to generalist practitioners on aspects of dementia. Indeed, I have produced one myself (Harrison Dening, 2019). However, these resources often follow a standard format of the author telling you what they think you need to know. They are often formulaic, introducing dementia as a disease, risk factors, detailing its biochemistry, its subtypes, early signs of the condition, behaviours that challenge, carer needs, and so on. However, myself and various colleagues wish to subvert this standard approach by working on a format to a new text that starts by asking generalist clinicians: ‘What do you want to know? What is an issue for you when working with a person with dementia and/or their families?’
Generalist clinicians often have a case (or several) that presents them with various concerns, issues and dilemmas. We invite you to tell us yours, through anonymised cases, issues and concerns, to which we will respond by situating our specialist advice within real cases and issues. We will undertake a type of training needs analysis that will drive the content of the book through eliciting a set of themes related to your learning needs. Training needs analyses (TNA) are used to establish the continuing professional development needs of a healthcare workforce and seek to identify the gap between the knowledge and skills of an individual. When planning a TNA, we need to ask several questions, such as: What is the nature of the problem to be addressed by the training? How have training needs been identified, and with what results?
To meet these requirements, our call will be as wide as possible, advertised through professional journals (such as the British Journal of Community Nursing), clinical networks, professional social media channels and snowballing (word of mouth from one professional to another). When we confirm the themes to be incorporated within the book, we will invite individual clinicians to provide us with their case studies or specific issues. Assistance to write case studies is available if needed. Any case study used will be anonymised and used for illustration purposes and to guide specific advice and information from an admiral nurse. We are developing an online survey tool that is soon to be circulated; however, if you or your team are interested in being involved, then do please contact the author in advance of this.