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New Zealand nurse one in 90 million: A New Zealand nurse is taking part in an international research study aimed at preventing the onset of Alzheimer's disease.

Research into familial aspects of Alzheimer's disease has been going on for at least 25 years around the world, including in Australia. My family is one of only a couple of New Zealand families involved in a worldwide study called Dominantly Inherited Alzheimer Network (DIAN). This study is looking for biological changes occurring in people before they develop typical Alzheimer symptoms such as memory loss. (1)

DNA from DIAN participants is being studied in more than 26 countries, thanks to a collaborative agreement DIAN has with other research groups. This enables other research groups to obtain DNA from DIAN for research purposes to ensure treatments are developed as soon as possible.

Over the past five years, the DIAN Trials Unit (TU) has been working on a clinical drug trial aimed at preventing the symptoms of Alzheimer's by removing plaques from the brain before the nerve cells deteriorate and the symptoms appear.

My mother was diagnosed with early onset familial Alzheimer's disease (E0FAD) when she was 48 and died a few years later. Both my parents were born in England and migrated to New Zealand before I was born. Looking back over the family history, I discovered my mother's father died in his 70s in a "mental asylum", as they were known in those days. We presume he was the carrier of the very rare genetic mutation known as the London Gene (APP).

The only way to formally diagnose Alzheimer's is by post-mortem and I requested one on my mother. This confirmed the tentative diagnosis of Alzheimer's due to the presence of the APP gene. Only 38 families around the world are known to carry this specific mutation, which apparently makes me one in about 90 million.

As a result, my husband and I are now taking part in a DIAN-TU clinical drug trial. This involves travelling to Sydney every four weeks for administration of a "drug", which may be active medication or a placebo--as is the normal practice in such trials, we do not know which.

Drug trial

More than 200 people from all over the world who have the APP gene or another genetic mutation causing Alzheimer's, are participating in the drug trial. Regular tests and procedures include:

* Brain magnetic resonance imaging to look at brain structure.

* Positron emission tomography scan to look for abnormal protein deposits in the brain and to measure brain metabolism.

* Yearly lumbar puncture to look for abnormal protein levels in the cerebrospinal fluid.

* Blood samples to measure biomarkers.

* Participants undergo regular cognitive tests.

We are not given any results of these procedures but have been assured we would be advised if they revealed anything requiring medical attention.

By the end of this year, after everyone in the worldwide study would have been on the double-blind phase of the trial for two years, the researchers will analyse the data and frame the next phase of this ground-breaking research programme.

The next stage will depend on whether the trial drugs have had a significant influence on reducing amyloid deposits in the brain or reducing amyloid levels in the cerebrospinal fluid. If so, participants will continue the trial for another two years, to see if it can demonstrate an effect on people's memory and thinking. Testing of a third drug will start this year as part of a continuing process until a breakthrough is discovered to prevent the symptoms of Alzheimer's.

EOFAD is an autosomal dominant genetic condition with symptoms often starting when a person is in their 30s, 40s and 50s. Someone with an EOFAD mutation who develops Alzheimer symptoms is likely to have younger age of onset, ie before the age of 65, like their parent. The biological child of a person with the mutation has a 50 per cent chance of developing Alzheimer's disease.

The DIAN study has developed a registry that collects, analyses and stores data and brain images in databanks, and tissue samples from participants in a tissue bank. All this will be stored indefinitely to assist continuing research.

I have always strongly believed I was put on this world to help people. Since the age of four, I wanted to be a nurse and make a difference to people's lives. I have many years of nursing experience but have had to retire at 52 due to Alzheimer's. I feel I have made a difference and will continue to do so through DIAN --there is always hope.

Jenny Nichols taking part in the research in Sydney.

Jenny Nichols, RN, MN, PGDip(CBT), worked at Hawke's Bay District Health Board until she retired earlier this year.


(1) NeuRA participates in global research program into Alzheimers. (2017). The NeuRA Magazine, 21, 5.
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Title Annotation:research
Author:Nichols, Jenny
Publication:Kai Tiaki: Nursing New Zealand
Geographic Code:8NEWZ
Date:Nov 1, 2017
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