A lifeline you've probably never heard of: Caron Heyes describes the vital work of Admiral Nurses for people living with dementia
Admiral Nurses, part of Dementia UK, are specialists in the care of patients with dementia, in its many varied forms, of which vascular dementia and Alzheimer's are the best known. The nurses work practically not only with the person living with the disease but also their whole family. A main focus of their campaign work is also to raise awareness of dementia generally and also to encourage people to use more positive terminology to describe the disease, with words such as family, happiness, living well, as opposed to fear, confusion and aggression.
In what they know is likely a massive underestimation, Dementia UK reckons at least 850,000 people live with dementia in the UK, which costs around £23 billion each year, partly in the lost earnings of carers.
Current research has achieved a huge amount to increase awareness of the disease as caused by and creating physical changes in the brain that effect neurological damage, so altering behaviour. In post-mortem of someone who has lived with the disease, there are clear changes to the structure of the brain and show a pattern of damage readily identifiable as caused by dementia.
Clearly we need more Admiral Nurses, and urgently need to train more dementia specialist nurse practitioners working across the NHS and private healthcare sectors. Currently there are only 220 Admiral Nurses in the UK working with families both in their homes and in hospitals and care homes, and also running the vitally important Dementia UK Helpline (0800 888 6678) – often the first port of call for people worried about a relative and what the future holds.
One thing is for sure, dementia is a progressive condition and a loved one will deteriorate. The speed at which they do so and the path it takes is individual and largely depends on their personal history - how they've lived their life, their nutrition, and their environment. It is increasingly apparent, for example, that acute hospitals and their hustle and bustle are not the right place for people living with the disease.
In the past dementia was very much considered an embarrassing mental health issue that needed to be hidden rather than a holistic physical and mental condition. Thankfully, our understanding is evolving. Not that long ago, for example, dementia patients were not considered to feel pain and some languages simply do not have a word to describe the disease.
Luckily, breakthrough research and targeted campaigns to raise awareness mean much more is understood about it. It is still, however, a cruel disease, with family carers bearing the brunt of supporting someone living with it.
The Observer newspaper continues to help spread knowledge of John's Campaign, which, among other things, advocates the importance of family being closely involved with medical staff caring for someone living with dementia. Family often better understand why someone reacts in a certain way in certain situations, for example, why a past drama or accident causes a patient to be terrified if they are held too tightly, or by several people, say, and why a dislike of a certain food may make them behave aggressively.
In our work, we regularly see clients who have dementia and who suffer substandard care, or are misdiagnosed. Jill Greenfield recently dealt with a case involving a gentleman who suffered from mild Alzheimer's. He suffered a brain injury during a road traffic accident, but this was tragically ignored due to his dementia. We are very pleased to support Admiral Nurses and their continued focus on making dementia everyone's business.