Guest writer Dr Karen Harrison Dening discusses how Dementia UK seek to better understand dementia by developing the role of the Admiral Nurse, supporting families and individuals affected by dementia.
Historically dementia was regarded as a mental illness and as such, care provision in the UK was provided through secondary mental health services. Over the last decade there has been a wide and growing acceptance that dementia is the result of various forms of brain diseases that culminate in brain damage, so not a mental illness. Similar numbers of people with dementia may also experience a co-morbid mental health condition, as in the general population. However, since dementia transitioned from the auspices of mental health service it has become homeless.
People living with dementia too easily fall between the ‘pavement slabs’ of various services and organisations. There are times during the life of a person with dementia where they require the services of mental health still; the process of gaining a diagnosis, treatment for other mental health conditions, such as depression. There will be times when there are social care needs, such as assessment for care services, day care, residential care, etc and support of their loved ones who are caring for them 24/7 every day of the year and for many years.
Families affected by dementia often move fruitlessly between health and social care services in attempt to seek a tried and trusted pathway of care. Dementia is homeless.
It is now recognised and accepted, particularly in developed countries, that an integral part of care coordination and case management pathways for people with dementia should include end-of-life care (Prince et al, 2016). The European Association of Palliative Care (EAPC) published a consensus statement attempting to define the principles of practice of palliative care, which are to take a holistic approach, valuing autonomy of patients and their families, with a focus on dignity, a collaborative relationship between healthcare professionals, patients and their families, good communication, and to maintain the quality of life (Radbruch et al, 2009). The EAPC paper (van der Steen, 2014) presents healthcare professionals with a more tangible template for supporting families affected by dementia. It would be a truly marvellous development in dementia care if it were to be embraced by the palliative care world – dementia would no longer be homeless but embraced within a field that has person centred care at its core.
So what is Dementia UK’s response to the needs of families affected by dementia that aligns with the recommendations of the EAPC? Dementia UK have developed the role of the Admiral Nurse. Admiral Nurses (ANs) are specialists in dementia care, and use a case management approach to support families affected by dementia from the point of diagnosis through the disease trajectory to the death of the person with dementia and then in support of family carers in bereavement (Harrison Dening et al, 2017).
Dementia UK continues to develop partnerships with host organisations and commissioners to implement what it views as the ‘gold standard’ model of Admiral Nursing: open access throughout the trajectory of dementia (Harrison Dening et al, 2017). However, many commissioners and host organisations choose to apply or ‘purchase’ the model for limited sections of the dementia trajectory or specific care settings to suit their funding streams or service model for dementia, such as memory assessment clinics, primary care, care homes or hospices, or they may limit access to the service by restricting referral criteria.
However, the purpose of the Admiral Nurse case management approach is to navigate or remove the barriers to consistency in care and support families to navigate the often fragmented (Harrison Dening et al, 2018) and unchartered waters of our ‘care’ system and provide care that is proactive and enables a positive palliative and end of life care experience for families affected by dementia.
This article has been published as part of St Christopher’s year of Celebrating End of Life and Palliative Nursing project. If you’d like to contribute to this series, please contact Project Lead Marie Cooper on email@example.com to take part.
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Dr Karen Harrison Dening
Head of Research & Publications, Dementia UK
Harrison Dening K, Aldridge Z, Pepper A, Hodgkison C. (2017) Admiral Nursing: case management for families affected by dementia. Nursing Standard. 31(24):42–50. https:// doi.org/10.7748/ns.2017.e10600
Harrison Dening, K., Scates, C. & Lloyd-Williams, M. (2018) Palliative Care in Dementia: A fragmented pathway? International Journal of Palliative Nursing. 24(1): 112-122.
Kitwood, T. (1997) Dementia reconsidered: The person comes first. Buckingham: Open University Press.
Radbruch, L., Payne, S., and Board of Directors of the EAPC (2009) White Paper on standards and norms for hospice and palliative care in Europe: part 1 Recommendations from the European Association for Palliative Care’, European Journal of Palliative Care, 16 (6).
Van der Steen JT, Radbruch L, Hertogh CM et al. (2014) White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliative Medicine. 28(3):197–209. https://doi.org/10.1177/026921631