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How 'Admiral Joe' Could Transform Dementia Support

28/05/2015 13:02 BST | Updated 27/05/2016 10:59 BST

One of my regrets with regard to my dad's 19 years with dementia is that we never had an Admiral Nurse. I term this a regret because I would have very much liked to experience this service as a carer to my dad with dementia, largely because I've heard such positive feedback from numerous other carers about how helpful, even lifesaving, contact with an Admiral Nurse has been for them.

For anyone not aware of Admiral Nurses they are specialist dementia nurses, provided by Dementia UK, with a specific remit to offer practical and emotional support to families affected by dementia. Established as a result of the experiences of family carers, Admiral Nurses are named after Joseph Levy CBE BEM who had vascular dementia and was known as 'Admiral Joe' because of his keen interest in sailing.

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Joseph Levy CBE BEM, 'Admiral Joe'

In effect, Admiral Nurses are to dementia what Macmillan nurses are to cancer: specialists in their field, and an invaluable resource to families. Furthermore, in the desperate need to provide more integrated services for families affected by dementia, Admiral Nurses are ideally placed to join up health and social care services, providing the holy grail of good dementia support.

The problem is there aren't enough of them - currently only 140 for the whole of the UK. As a family we never had an admiral nurse because one hadn't been commissioned in our area. We didn't even know about Dementia UK because we were never given any literature. Nowadays, Admiral Nursing DIRECT exists, the only nurse-led national helpline in the UK, but it's astonishing how few people I meet actually know about this service.

Indeed, I've given presentations at conferences and training sessions to health and social care professionals who have had no idea what an Admiral Nurse even is, including GP's, the gatekeepers of the NHS and the professionals most families turn to when they need expert help with anything health related. I don't blame professionals for not knowing - they can't be expected to research every support service for every condition, but it is a fundamental failure of basic training to not be providing frontline professionals with this information.

Admiral Nursing isn't without its critics. I know that some professionals see Admiral Nurses as an expensive luxury that health and social care doesn't need, but the experiences of families who are coping with dementia suggests otherwise. Furthermore, an independent evaluation of an Admiral Nursing pilot in Norfolk identified savings of over £440,000 for health and social care in the area in the first 10 months. It reduced contact time from families affected by dementia with GP's, nurses and social workers, and avoided unnecessary hospital admissions and care home costs.

Dementia UK - 2010 - Helen & Geoff Revised cut from Dementia UK on Vimeo.

Against this backdrop, you may wonder why Admiral Nursing hides its light under a bushel. Sadly, it struggles from not being well-understood by the general population, not being nationally championed by policy makers and, crucially, battling for funding, with the latest news making grim reading: The Admiral Nursing Service in Hull is being decommissioned by the NHS Hull Clinical Commissioning Group from 1st April 2016, to be replaced by a 'Carer Support Service'.

Yet the growth in the need for Admiral Nursing DIRECT remains undiminished. The helpline has witnessed a 78 per cent increase in the number of requests for support and advice since January 2013, with data showing that 76 percent of callers are female, with 56 percent being the daughter of a person with a diagnosis of dementia or who they suspect has dementia.

Popular topics that people call the helpline about include how to get a diagnosis of dementia, what services and resources are available and how they get access to them, how to deal with day-to-day affairs (legal, financial and social), how to put a long-term care plan in place, how to support a loved one's symptoms of dementia and how to manage their own feelings as a carer. All information that you might think is easily accessible, until it's your family member with dementia and you are trying to navigate 'the system'.

With such a clear need for this type of service, my personal hope is that Admiral Nursing will go from strength to strength. In the current climate of austerity and box ticking, however, it really does need all the champions it can get.