Providing for the future

Why is it that Australians prepare fiscally for retirement, but do not routinely donate to research into diseases of brain and mind, which will affect many Australians during their retirement?

DSC_3155Many people begin to take an active interest in preparations for retirement at some point during their adult life. Obligatory employer contributions make it possible to begin superannuation savings early in working life, and additional voluntary contributions are incentivised by tax benefits. Many people feel a sense of pride in this financially prudent approach to the future, and are able, at the end of a productive working life, to approach retirement with a safety net or a cushion; in short, some degree of financial security that will provide necessities as we age.

Ageing, however, cannot be dissociated from rising health costs and an unknown degree of necessity to rely on others to cope. There are more complex factors in how we allocate our financial resources when approaching older age that need to be taken into consideration.

There is a conundrum here: people make provision for an active, healthy and fulfilling retirement; however, they often do not consider donating to research and development in areas of health that are relevant to ageing populations. Many donors to biomedical research may be drawn to illnesses more prevalent in younger people, such as childhood cancer or breast cancer. Nevertheless, there remains a brutal reality for older Australians, who face the prevalence of dementia as a major barrier to health and quality of life. More than 320,000 Australians are currently diagnosed with this illness, and this figure is set to rise to 900,000 by 2050. There is currently no cure for dementia or for many other types of neurodegenerative disorders that also affect an ageing population, such as Parkinson’s disease and multiple systems atrophy.

So, when we are in a position in life to contribute to research, why don’t we choose to prioritise donations to research into neurodegenerative conditions, which incur significant costs and will affect an increasingly large proportion of the population?

Perhaps this asymmetry in choice is brought about by fear. Neuroscience research has enabled an increased understanding among the public of the effect of genes on heritable disorders. On the flipside, though, being able to predict one’s own vulnerability to diseases of the brain and mind may be only a grim reminder of a difficult future. Perhaps it is more comfortable for people to suppress this pessimistic prospect by contributing to research programs in which the afflicted individuals are youthful, the organ replaceable or the condition reversible. This allows the donors, who may often be facing middle age or older, to distance themselves from the fear that comes with increased awareness of their own vulnerability and to feel that they are making an effective difference through supporting translational research.

It is crucial that we bridge this apparent divide. Greater knowledge of the causes of neurodegenerative illnesses, and a more productive search for cures, can have positive feedback. In short, successful research often begets greater funding.

As demands on carers and aged care institutions become more apparent with the sheer numbers of Australians increasingly burdened with neurological diseases, the public will demand a collective reassessment of priorities in research funding from government and philanthropic sectors. The challenge will be to grow the pool of available funds, without diverting them from other areas of priority. Perhaps this challenge is something to consider during financial planning for retirement.


 

Welcome to the new Margarete Ainsworth Building

After many months of construction, not to mention anticipation, we have officially opened the new Margarete Ainsworth Building at NeuRA (Neuroscience Research Australia).

Jillian Skinner MP (left) and Tanya Plibersek MP (right) congratulate philanthropist Margarete Ainsworth (centre) on the opening of the Margarete Ainsworth Building at NeuRA

We were lucky enough to host Federal Minister for Health and Minister for Medical Research, Tanya Plibersek MP and NSW State Minister for Health and Minister for Medical Research, Jillian Skinner MP, as well as philanthropist Margarete Ainsworth.

As NeuRA chairman Paul Brassil said in his speech, Margarete Ainsworth has been exceptionally generous to NeuRA and “we thank her most sincerely for her trust and confidence in NeuRA’s research capacity”.

The official opening of the Margarete Ainsworth Building at NeuRA

Lucille Bloch, whose husband Keith had frontotemporal dementia and was a research participant at NeuRA, reminded us in her speech what this new building is all about: the power of research to find answers to devastating diseases of the brain. I’ve pasted a copy of Lucille’s speech below for those who couldn’t make it to our opening.

Here’s to a new era of discoveries at NeuRA.

Lucille Bloch, a carer and research participant at NeuRA, participates in a demonstration of using illusion to relieve pain.

Lucille Bloch’s speech

My husband Keith was always an easy person. We had a very good relationship; we shared everything, we respected each other.

In the year 2000, we decided to pack up our life in Israel and move to Australia to be with our three sons. It was around this time that I noticed changes in Keith’s behaviour.

What stood out for me was his inability to pack up his beloved hobby workshop before emigration. Eventually I had to do it myself. I’d never held a spanner in my life, and here I was dismantling everything, with Keith just watching. This was totally out of character for him.

I said to myself, why is Keith so different? And as I said ‘different’, I stopped. I felt very concerned, because I remembered what my father, a GP, had said about my mother when he suspected she had Alzheimer’s disease; that her behaviour was different somehow to what it had always been.

Shortly afterwards, I spoke to our GP, but he brushed aside my concerns. The next three years were heartbreaking and very difficult as I watched Keith behave in ways that were so out of character for the man I knew. Finally, a neurologist sent him for tests and gave us a diagnosis: Keith had frontotemporal dementia.

There is this over-riding grief when the person you love has dementia. You can only stand by watching as the person you love loses skills and abilities, one by one.

When we first arrived in Australia, Keith still loved to tinker in his workshop, but it became evident quite quickly that it was becoming dangerous. He had lost physical coordination and the ability to forward plan, so there was no more sawing, no more using his electric tools.

I had to just follow Keith’s deterioration, trying to accommodate it. Initially I would lay out his clothes for him in the morning. When he could no longer easily manage, I thought of ways of folding and tying his clothes to help him dress himself for just that little bit longer.

Keith’s deterioration was rapid. He had many falls. I managed most times to pick him up, but about a year after diagnosis, he needed a wheelchair. I was determined to care for Keith at home. It was difficult, but somehow if you want to, you do it.

He attended day centres, I took him to the Art Gallery, out for coffee and had our children and grandchildren share meals with us. After dinner I changed and settled Keith using a hoist to lift and move him.

He never lost his memory or his ability to feel and understand emotions. At the day centre, Keith would write cards to me. They were mostly illegible, but the staff asked him what he had written and told me.

I have one of the cards here with me today, and it says: “Dear Lucille, thank you for being the Mother of my children. Love, Your Husband”.

As you can see, he may have lost many things, but he was still the same loving husband.

During this time, I attended a presentation by Professor John Hodges from Neuroscience Research Australia about the need for brain donation and the great value it has for research. The idea grabbed me.

I went home that night and discussed it with Keith, suggesting we could both donate our brains. Keith agreed immediately. He said, ‘We’ve got four children, your mother had it, now I’ve got it. Let’s do it and let’s help other people.’ We discussed it with our children, they agreed, and thus our bond with NeuRA began.

I brought Keith regularly to NeuRA for cognitive tests and MRI scans. At all times, Keith was treated with dignity and respect. I too have been attending this amazing research institute for regular tests.

When I felt that he was going, I gathered all my four children. Even two of the grandchildren were there, aged just nine and six. The grandchildren always knew that gramps had dementia; we didn’t want to hide anything.

That last night, we put him to bed and I sat beside him and said, let’s talk about our life, and you squeeze my hand if you remember. So we’d talk about where we had lived, our children, and he kept squeezing my hand.

Keith passed away at home, with me at his bedside holding his hand. We called the Sydney Brain Bank and, with great dignity and sensitivity, they took my Keith and arranged for his brain donation without any disruption to the funeral plans.

Afterwards, Professor Hodges and his team told me that Keith had suffered from both frontotemporal dementia and also, unexpectedly, from Alzheimer’s disease. It is rare for these two diseases to occur together, and they said they would learn a tremendous amount from studying his case.

My dream was to have Keith’s dementia reversed. Realistically, however, both Keith and I would be well rewarded if participation in research here at NeuRA, together with our brain donations, advances knowledge about this horrible disease.

My vision for the future is a world where there is a cure for dementia in all its forms or at least medication that will arrest it.

I want those people who will unfortunately follow my husband Keith down the same path of dementia to have hope.

Thank you.

Why have Australians given billions to establish private foundations?

Since 2001, the Australian government has enabled donors to create a simple form of private foundation now called the Private Ancillary Fund (previously, a private prescribed fund). These funds are “ancillary” because they exist only to support charities like NeuRA. Put simply, they are family-style trusts. They only distribute their income to deductible gift recipient charities, and they must distribute a minimum amount every year (usually, at least 5% of the value of the fund). The people who donate the funds receive a tax deduction, but can never withdraw the funds or direct them to their own or private use. Continue reading