Don Battley: Let's hope rugby stories make dementia a 'sexy' illness

Former greats a sliver of those with disease but their battles may help draw funding, writes Don Battley who is a retired Anglican priest living at Whangaparaoa.

I am a spouse-carer for a person with dementia. It is encouraging to see the subject making the headlines, but the context is ironic. Hundreds of people suffer from this condition and every case impacts on 10 or more family members and usually more than 100 friends. The dementia-affected community is a large one.

Now suddenly our rugby heroes are seen to be at risk and - horrors - these important people can't be left without adequate research! If the new awareness and attention helps, that's good, but spare a thought for all of us who are not famous but our loved ones are now cognitively impaired and dependent on us and their professional care-givers.

Quite recently an Alzheimer's worker said to me "The reason medical research for this is slow is that dementia is not a sexy disease."

Huge sums have been spent achieving amazing results in cardiology, cancer cures and more - but how much really is being done for neurological conditions? Well, quite a lot actually, and some top-level work is happening right here in Auckland. But does the community share their passion?

Until recently, the popular mind has considered dementia to be an unavoidable consequence of ageing. It's not so. Increasingly younger adults are experiencing early cognitive impairment. Dementia can commence at any age - and may develop for up to 20 years before it becomes evident. The reality is that dementia is an avoidable disease, but still too little is known about its real causes. Amyloid plaque and tau tangles are possibly its consequences, not its root causes.

The deep pain for the closest relatives of a person with dementia is that there is no hope available, in the medical sense. We are told as soon as diagnosis is made, "there is no escape from this. Prepare yourself for a long journey".

Standing beside a loved, able family member as they lose their memory and ultimately their identity is a tragic experience, made worse by the absence of any hope.

There is good support from health boards but a great deal is expected of the family. It comes to define the life of the primary care-giver who may do all that willingly, but it costs.

Standing beside a loved, able family member as they lose their memory and ultimately their identity is a tragic experience, made worse by the absence of any hope.

Recent writers, including Alan Duff, are hoping for a cure quite soon. Don't hold your breath. The research is time-consuming and getting a possible medication tested and ready for market can take a decade or more.

What gets to me is that our modern culture can fly a clever machine to Mars to sample its soil, but can't understand what makes the human brain fail. Perhaps the billions being spent on space exploration could be redirected to explore the mysteries of the human brain - the finest product of all of our evolutionary journey? Thousands of us are yearning for something to hope for. In the meantime, the Neurological Foundation has to appeal to the public for funds to finance its work. It's time to prioritise the care of our brains.

• The Rev Dr Don Battley is a retired Anglican priest living at Whangaparaoa.