Podcast: Alzheimer's disease, a family perspective

In Australia, around 1.2 million people are involved in the care of a person with dementia. Suhanya Raffel, Deputy Director of the Art Gallery of New South Wales, was one of them—her mother Carmel suffered from Alzheimer's for nearly a decade after diagnosis. Tune in to find out about the benefits of speaking two languages, and the exciting breakthrough QBI researchers have made in the race to find a cure.

Transcript

Donna Lu: Hi, I'm Donna Lu and you're listening to  A Grey Matter, the neuroscience podcast from the Queensland Brain Institute.

Suhanya Raffel: Couple of days after that she said:" You know Michael, how you bought me that coffee the other day, do you think you could, instead of coffee, substitute it with some whiskey?"

Donna Lu: Our focus for this episode is Dementia; we'll be talking about Alzheimer's disease, in particular, its effects and the promising research scientists at QBI are doing in order to find a cure.

Woman:  Alzheimer's disease

Man 1: Alzheimer's disease

Man 2:  Alzheimer's disease

Woman: Is fast becoming the greatest medical challenge of the 21^st century.

Man 3:  Alzheimer's disease speaks of you until there's not much of you left.

Woman: What do you think you think can be done?

Man 1: Research is the answer.

Man 1: Research is the answer.

Donna Lu: There's still no known way to prevent, cure or delay the progression of Alzheimers. It affects individuals regardless of wealth or ethnicity with notable sufferers like the late US president Ronald Reagan, an English fantasy author, Terry Pratchett; who featured in that last clip as part of Alzheimer's Research UK's Fight Back Campaign. Although, the chances are used interchangeably, Alzheimer’s disease and Dementia aren't the same thing. Dementia were first broad category brain conditions that cause an impairment to functions like memory, language, personality and cognitive skills. In Australia, there are currently over three hundred thousand people living with Dementia. If there's no medical breakthrough, it will affect nearly one million Australians by 2050. Alzheimer's disease is the most common form of Dementia and accounts for about seven in 10 cases. Suhanya Raffel, Deputy Director of the Art Gallery of New South Wales, is all too familiar with the interactive deterioration of Alzheimers. For seven years she cared for her mother, Carmel, who was formerly diagnosed in her 70's.Before Alzheimers, Carmel was known for [foreign language]. 

Suhanya Raffel: She was a very lively person, very engaged with all aspects of life from politics to literature and music was her passion. She always explore every corner of music from new music, jazz. She was a trained classical pianist .She learned clarinet because she wanted to also play jazz. So, she was curious about the world.

Donna Lu: There's a body of research that suggests that being bilingual delays the onset of Alzheimer's disease by four years on average. in a 2010 article, published in the Journal Science, Pulitzer prize-winning scientist and science writer ,Jared Diamond explains the phenomenon. He writes t a short answer is the aphorism: "use it' or lose it.” Exercising body systems improves their function not exercising makes their function deteriorate. That's why athletes and musicians practice. It's also why Alzheimer's patients are encouraged to play brain challenging games like bridge or to solve Sudoku puzzles. The bilingualism is arguably the most constant practice possible for the brain. Whereas, even a Sudoku fanatic can spend only a fraction of a down Sudoku puzzles. Bilinguals impost extra exercising their brain every minute of their waking hours.  Consciously or unconsciously, the bilingual brain constantly has to decide: Shall I think, speak or interpret sound spoken to me according to the arbitrary rules of language A or language B.

While languages and cognitive exercises can delay the onset of the condition, it's important to note that they can't prevent Alzheimer's altogether. Carmel, Suhanya’s mother was fluent in four languages.

Suhanya Raffel: She's a Sri-Lankan woman, so she was always bilingual in English and Sinhalese, but she learned German and French because she again wanted to engage with particularly…particular aspects of history in the history of music in certain places; and so she felt language was a very important part of accessing that life.

Donna Lu: Suhanya believes that her mother had started showing signs of Alzheimer's long before Suhanya herself found out.

Suhanya Raffel: My father was a doctor and I think he was very aware that my mother had begun to show early signs of Alzheimer's. But together, my feelings if they colluded in not making that more visible to us her children. One of the first major signs of that loss of memory and something that my father shared with us was when my mother went to listen to a concert in the Opera House in an afternoon; they lived in with West Ryde, in Sydney. And she would often catch the train in and go in and listen to music or engage with Writers’ Festival, whatever and she would come back and they'd made a date to meet at the West Ryde Library and in the afternoon when she'd finished her concert and then I was waiting for her she came very late in the company of a local shopkeeper, in West Ryde station who happened to know my mom and dad and had found her lost and trying to find the library, a place that she was so familiar with and so very clearly she couldn't remember her way from the station to the library .

Donna Lu: Becoming disoriented even in well-known places is a common sign of Alzheimers. As this, when an individual loses enthusiasm for activities they previously enjoyed. How did she respond to music as her dementia progressed?

Suhanya Raffel: Early parts of Dementia, we were able to really engaged. She learned a lot of Satie at that time.

Donna Lu: That's Eric Satie, the French Avant-garde composer.

Suhanya Raffel: Which was quite, you know its challenging music. But, by the end she completely was uninterested in music.

Donna Lu: Did she respond in any way when it was played to her?

Suhanya Raffel: No

Donna Lu: That's really unfortunate.

Suhanya Raffel: It was very, very, very sad because I remember teaching Rahul ,our oldest son, The Impromptus, which were some of her most favorite pieces of music engaging him to play them to her at the home and she just fell asleep.

Donna Lu: No response?

Suhanya Raffel: No response, at all.

[Music playing]

Donna Lu: Tell us about the major breakdown that she had.

Suhanya Raffel: The major breakdown, it's very, very funny in hindsight and even at the time we did have a giggle about it. At about midnight or one in the morning, my father caught us here at home and said: "Daughter, you've got to come at once. There's a problem with your mother", and that's all he said .He didn't elaborate at all. So, my husband Michael and I we drove to the Ash Grove Apartment and. my mom was in the garage in her nightdress, sitting in the passenger’s seat, but not sitting she was lying in the passenger seat because she'd put the back down, so she was horizontal. And the only way I could speak to her was by getting into the driver's side and sitting there and she just said; "Darling, you've got to find a hole in the ground for me." And I said: "A hole in the ground? But, Mama, it's one in the morning. I can't possibly find a hole in the ground at this time of night.”

"Surely, there s must be a decent hole in the ground close by", and I said: “Well, no I don't think it's that easy to find". And so, we had this little ban going up and down until I said to her. it was such a ridiculous conversation really to be having. I said: "Mama, this is like the script from a goon show episode.” And we both had a big laugh about it because it was. It was such a mad conversation and I said: “Let’s go in and have a cup of tea and discuss this in the morning, it's time to go to bed, anyway.” After the hole in the ground, while she was in there, the institution she found a very close… I mean she was always very close to Michael. my husband but he became like her little confidant and she would often call him during the day and say: “Michael, I really feel like a coffee…can you bring me some coffee? So, one day… she and so, he would he bring her a flask of hot coffee and they spend the afternoon together and you know, a couple of days after that she said: “You know Michael, how you bought me that coffee the other day; do you think you could instead of coffee substitute it with some whiskey? But, not tell anyone because she was well aware that… that was not… she was not allowed to, but we were not allowed to bring alcohol into the facility and you know, she would… she would, there was another time when she one of the other people in the facility had tattoos and she was really taken up with the tattoo and piercings and she called Michael to says she really wanted to go to the valley, to get a tattoo and her nose and her ears pierced again because she really felt like doing that. So, she... she became childlike in many ways and mischievous. But, in many ways it was her last real moment of insight. I think about the degradation of her mind and she was. And, it's so… it's you know, hole in the ground is to bury her. It was her way of saying; I don't want to live like this anymore. But, that and that was her big, you know crash and she never recovered from that and she was we had to institutionalize her for seven years after that before she passed away and it was a steady decline to the point where at the end she was…she barely spoke .Even though, she knew perfectly understood everything we said to her and this was a woman who was so active, so alert, so articulate, so engaged with so much of life's great wonderful things.

Donna Lu: Carmel Raffel died in her sleep last year.

[Background Music]

Jurgen Gotz: I think Alzheimer’s disease is   a devastating disease because it destroys our personality; it is what makes us what we are.

Donna Lu: That's Professor Jurgen Gotz, the Director of the Clem Jones Center for Ageing Dementia Research, here at QBI. Earlier this year, they had a breakthrough in treating Alzheimer's mice with ultrasound. Now, bear with me if you are already aware of the mechanisms of the disease. In Alzheimer's there's an abnormal build up of a protein called Beta Amyloid, which forms plaque outside brain cells. There's also a build up of a protein called Tau inside brain cells which form or are called ‘Tangles’. Put simply these proteins accumulate, damage connections between neurons and cause cell death.

Jurgen Gotz: So basically, what we found is that. by taking mice if the pronounced with eminent pathology X are relatively advanced H and treating them if you're scanning mode of ultrasound and opening a plot point there by prior injection of micro bubbles and things get into the brain and out of the brain and by using the scanning note and doing it over a period of six to eight weeks, weekly; we found that amyloid was with use massively not completely, but massively; but this cause of reduction in amyloid  was sufficient to restore memory functions to light had levels in three complimentary tests.

Donna Lu: By wall tight levels, Professor Gotz means, that the treated dementia mice showed the same memory functions as healthy mice at the same age. The huge advantage in using ultrasound is that it's noninvasive and relatively cheap. The next goal is to upsize the treatment for trials on bigger animals with thicker skulls.

Jurgen Gotz: So, we hope that we can develop a device and a method which allows us to treat human patients.

Donna Lu: To as much needed funds for Alzheimer's research, the Queensland Brain Institute is teaming up with Hand Heart Pocket, the charity of Freemason's Queensland. As well as with Alzheimer's Australia to host a gala  evening, this Friday the 31st of July at Customs House in Brisbane. The program includes performances from award-winning and internationally renowned musicians as well as a special address by Ita Buttrose, Alzheimer Australia’s National Ambassador. If you're interested, tickets are still selling and there's a link in the description of this podcast.

[Musical Background]

I’m Donna Lu and that's all for this episode. Let us know what you think or if you have any request for future podcasts. We’re on Twitter @qbi_uq and on Facebook or you can give us review on iTunes. Thanks for listening.