Wednesday, January 14, 2015

James Brown Interview with Richard Wilkins: Today show - Golden Globes win for 'Still Alice'

This could be my fave segment from the Today show so far.

Julianne Moore (below) has just won a Golden Globe for her role in the movie 'Still Alice', about a woman who is diagnosed with early onset dementia.



And Nine Network Entertainment Editor Richard Wilkins interviewed the Australian producer behind the movie, James Brown (above; I know, cool name). He was an Australian movie reviewer for radio show duo Kyle and Jackie O, and now finds himself a Golden Globe winner for this set-to-be released movie (due for Australian release on January 29, 2015).

And so I love that Richard took the time to speak to James the very next morning, because yes… this is BIG.



Not only is an Australian being honoured on an international platform, but early onset dementia is squarely under the spotlight, as it should be.

I really love the questions Richard asks James, and James's replies are just fantastic - their easy, genuine rapport elicits the best from James, and come Oscar time, I hope Julianne Moore wins and the movie receives even more recognition.

This will mean that more and more people will talk about dementia and early onset dementia. I agree with all that James says in the interview - awareness needs to be raised.

Considering - as I write in my book 'The Australian Ageing Generation Handbook', about being a carer and carers from all walks of life - dementia is AUSTRALIA'S THIRD BIGGEST KILLER (yes, I will continue to put that in caps until the whole world starts to really listen and Australian media gives this plight and the story of carers who care for those with dementia the press it deserves), this movie is an absolute godsend.

And interviews like this one go a long way in opening up the dialogue about dementia, across all ages and stages of life.

Watch the whole segment here.

Tuesday, January 6, 2015

'A Separation': Dementia Under The Spotlight - Movie Trailer

A friend of mine tagged me in this Facebook photo and I was immediately compelled to look up its origin.



My friend asked a friend for a translation. It says: "Does your father recognise you (the father has dementia). The son answers: "It doesn't matter... I myself know that he is my beloved father."

It turns out it's a movie still from the Iranian movie 'A Separation', directed by Asghar Farhadi.

The plot line: Simin wants to leave Iran with her husband Nader and daughter Termeh. Simin sues for divorce when Nader refuses to leave behind his Alzheimer-suffering father.

Her request having failed, Simin goes back to her parents but Termeh decides to stay with Nader.


Here is the sometimes confronting trailer:



Sunday, January 4, 2015

Christine Bryden on Today show - Early Onset Dementia: VIDEO

I watched this segment this morning on the Weekend Today show (in Australia) with much interest, especially given my mum passed away from dementia and other complications, as well as seeing the journey of someone dear to me going through early onset dementia.

And, as is captioned by this video upload on Nine's Jump-in platform: dementia is set to impact an increasing number of Australians, with 320,000 people currently living with this condition.

Watch as Christine Bryden and her husband Paul talk about Christine's dementia diagnosis at a young age, and how she and her husband have managed the diagnosis for over two decades. Yes, over 20 years.

Says Paul: 

"Family helps facilitate social presence. Never speak in third person about them... they are listening".

To watch the whole clip, click right here.

And to read more about Christine, click on her site here.



Giancarlo Murisciano Facebook Nonna Photo

This simple Facebook post has gone completely viral in a matter of days (at last count 431,228 people had liked it, 42,388 had shared it, and 1,269 comments were posted).

It is a photo posted by Facebook user Giancarlo Murisciano, who posted it on January 1 2015, near Gioia Tauro, Italy (a municipality in the province of Reggio Calabria, in Calabria), about his beloved grandmother.



It is captioned by Giancarlo:

Anche questo è amore.. non è stato il 31 dicembre migliore della mia vita forse..ma anche questo fa parte della vita. ..una volta mi tenevi tu sulle tue gambe adesso lo faccio io nonnina, senza vergogna e senza timore..per ricordare a tutti che la vita va vissuta e va combattuta..e facile scrivere parole su Facebook o altro... nella vita si deve essere presenti sempre e comunque..questo è il mio augurio per il 2015 la presenza di qualcuno accanto che ci possa proteggere e confortare ma anche essere felice e sorridente con noi..

Translated here by me (thank you to my late mamma for sending me to Saturday Italian school and for teaching me Italian at home):

And this also is love. It hasn't been the best 31 December of my life perhaps… but this also is a part of life… at one time you would hold me on your lap and now I am your grandmother, without shame or fear… to remind everyone that life is lived and fought… it's easy to write words on Facebook or other… in life one needs to be always present and anyway… this is my wish for 2015, the presence of someone by our side who can protect and comfort and also be happy and smile with us.


I absolutely adore this photo. It shows the frailty of life, the circle of life, the gratitude we should have towards our elderly, the very people who were young and strong once, who are now so very vulnerable.

Remember this photo, recall the words said, share the post, hold it in your heart. It will serve you well in years to come when your loved one is unwell.

And well done, Giancarlo. It is brave and raw and honest, but most of all… it is LIFE.

Saturday, January 3, 2015

Jerome H. Stone, Founding President and Honorary Chair of the Alzheimer’s Association, dies age 101

The Alzheimer's Association has lost their Founding President and Honorary Chair, Jerome H. Stone. Described by the organisation as "not only a longtime board member, volunteer and advocate, but also a philanthropist who led by example and believed deeply in giving to transform our cause."

They continue on their site:

"Mr. Stone was a true visionary in the Alzheimer's movement. When his wife, Evelyn, was diagnosed with the disease in 1970, he recognized the need for a leader in the field that would unite caregivers, provide support to those facing Alzheimer's, and advance research toward treatment, prevention and, ultimately, a cure. His drive and determination led to the creation of the Alzheimer's Association in 1979.

Mr. Stone is responsible for where we are today in the fight against Alzheimer's. He took a disease that was cloaked in silence and helped to create a national — and global — conversation. He meant so much to the many who are invested in this cause. We honor his memory and continue his legacy by moving forward to achieve our vision of a world without Alzheimer's."

Below is a photo of the late Mr Stone, and further down is the full statement from the Alzheimer's Association.






ALZHEIMER’S ASSOCIATION MOURNS DEATH OF FOUNDING PRESIDENT AND HONORARY CHAIR JEROME H. STONE

CHICAGO, January 1, 2015 – Jerome H. Stone, businessman, philanthropist, founding president and honorary chair of the Alzheimer’s Association, died on January 1, 2015 in Chicago. Stone was 101-years old and lived an active and full life, splitting his time between Chicago and Palm Desert, California.

“We deeply mourn the loss of Jerry Stone. He was a visionary leader who shaped the Alzheimer’s Association and its mission through his character and commitment,” said Harry Johns, president and CEO, Alzheimer’s Association. “His passion to change the course of Alzheimer’s disease was inspiring from the start and galvanized community caregivers, people with the disease, researchers and advocates that the Alzheimer’s Association continues to work on behalf of and with today.”

Stone’s legacy is one of industry, family and philanthropy – especially in Chicago. Throughout the years, he helped build Stone Container Corporation into a multi-billion dollar firm, was chairman of Roosevelt University’s Board of Trustees for 15 years, helped select the site for Chicago’s main library, was a co- founder of the Catholic-Jewish Dialogue Group and was responsible for raising most of the $72 million the Museum of Contemporary Art in Chicago received to construct a building seven times larger than its previous facility. At the intersection of Michigan Avenue and Randolph Street, not far from the location of the former Stone Container building in downtown Chicago, people are continually reminded of everything Stone has done for his city: In 2001, the City of Chicago hung a street sign proclaiming the intersection as Honorary Jerome H. Stone Way. He rose to international prominence through his groundbreaking work to conquer Alzheimer’s.


When his wife, Evelyn, was diagnosed with Alzheimer’s disease in 1970, Stone recognized the need for a leader in the field that would unite caregivers, provide support to those facing Alzheimer’s, and advance research toward methods of treatment, prevention and, ultimately, a cure. His drive and determination led to the creation of the Alzheimer’s Association in 1979.

According to interviews with Stone, when his late wife, Evelyn, was first diagnosed, he searched intensely to find a cause, a cure and relief. There was nothing available except a few modest support groups. Indeed, at the time, minimal information about Alzheimer’s, a progressive and fatal brain disease, was found in medical textbooks and journals.
Undaunted, Stone inquired about Alzheimer’s research efforts and learned of a meeting of seven independent groups interested in forming a national Alzheimer’s organization. In 1979, Stone joined those groups, comprised of researchers, physicians, caregivers and other humanitarians from around the country, to discuss possible solutions to the growing need for information, care and, ultimately, a cure for Alzheimer’s disease and other dementias. The group met again on December 4, 1979, in what would become the first official meeting of the Alzheimer’s Association; Stone was elected the founding president.
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Stone actively lobbied for Alzheimer’s research funding and changes in public policy. His meetings with former President Ronald Reagan in 1983 led to the creation of a task force to oversee and coordinate scientific research for Alzheimer’s. That same year, he was instrumental in working with the president and Congress to have November designated as National Alzheimer’s Disease Awareness Month, which is still observed today. In 1986, President Reagan presented Stone with the President’s Volunteer Award in recognition of his work in the fight against Alzheimer’s.

Stone’s dedication to the cause has led to the evolution of the Alzheimer’s Association into the largest and most influential global organization working to advance care, support and research across the world. From face-to face support to online education programs and promising worldwide research initiatives,


The Alzheimer’s Association is the only organization with the reach, magnitude and drive to achieve a vision of a world without Alzheimer’s disease. The Association furthers its mission by:
  • Advancing Research – Through partnerships and funded projects, the Association has been a part of every major research advancement during the past 30 years. Its peer-reviewed research grant program has awarded more than $335 million to over 2,250 proposals. In fiscal year 2014, the Alzheimer's Association International Research Grant Program awarded more than $13.3 million in funding to 75 investigators, part of the nearly 350 ongoing research projects funded by the Alzheimer’s Association in 20 countries, totaling over $70 million.
  • Enhancing Care and Support – Global, national and local initiatives to enhance care and support for all those affected by Alzheimer’s and other dementias. Outreach efforts include local chapters across the nation, a 24/7 Helpline, a clinical trial matching service, support groups, education programs and safety services. In fiscal year 2014, the Alzheimer’s Association provided services and support to nearly 3 million individuals.
  • Advocacy – The Association rallied thousands of advocates to ensure the passage of the National Alzheimer’s Project Act, establishing the National Plan to Address Alzheimer’s Disease, and continues to work on behalf of all those affected by the disease to achieve effective implementation of the plan. To do so, the Association executes strategies to develop relationships with state and federal policymakers, mobilizes Alzheimer’s advocates and coordinates activities with a sister organization, the Alzheimer’s Impact Movement.
    Stone is survived by his wife Marion, and his three children Jim Stone (of Winnetka), Ellen Stone Belic (the late Nenad Belic) and Cynthia Stone Raskin (of Chicago) and seven grandchildren Meg, Emily, Phoebe, John, Dara, Julie, Maia and four great-grandchildren Annabel, Alexa, Joey and Oliver.
    About the Alzheimer’s Association®
    The Alzheimer’s Association is the world’s leading voluntary health organization in Alzheimer's care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research, to provide and enhance care and support for all affected, and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s. For more information, visit alz.org.
“Jerry’s passion for the cause was evident from our first conversation. He called me and said, ‘You don’t know me, but I know who you are and I know of your mother (Rita Hayworth), and we have something in common,” said Princess Yasmin Aga Khan, honorary vice chair of the Alzheimer’s Association National Board of Directors, who founded the Rita Hayworth Galas in honor of her mother who died of Alzheimer's.

“He told me that his wife had Alzheimer’s disease and asked me to have lunch. Jerry was an inspiration, an amazing man, a true leader and friend. He was my hero."

Services for Stone will be Tuesday, January 6, 2015 at North Shore Congregation Israel, 1185 Sheridan Road, Glencoe, IL at 11 AM. After the service, burial will be at Shalom Memorial Park in Arlington Heights, for additional information about services please contact Chicago Jewish Funeral Home at 847-229-8822.

In lieu of flowers the family has requested that donations be made to the Alzheimer’s Association. To make a gift, please visit the Mr. Stone tribute page: alz.org/jeromestone.
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Friday, January 2, 2015

Josie Gagliano Radio Interview With Chris Smith: Podcast

Just before Christmas I spoke with renowned radio announcer Chris Smith, from radio station 2GB.

The focus of the discussion was on how carers cope over the Christmas and holiday period, when typically most people are contemplating where to go to relax, how to fill their days with downtime and fun activities, and giving themselves a big pat on the back for surviving another busy year.

The reality is that carers do not have a break, unless of course they have booked in some respite care (aged care facility, for example). If they have not, often they feel they can barely keep their head above water with feelings of being utterly overwhelmed with the unending responsibility they have and feel towards a loved one in their care.

Now, you can listen to the whole interview by clicking right here.

Let me know what you think!