Wednesday, June 25, 2014

Small changes help make a dementia friendly community - Alzheimer's Society: VIDEO

At first, I could barely watch this video. The message at the end - one of hope, a different attitude, changing of behaviour - made me glad this video was made. It was made by Published by the UK organisation Alzheimer's Society.


Here is the video's YouTube description:

"In this film we see Mary as she encounters people in her community, and see how a little bit of time and consideration for people living with dementia can make all the difference to their daily lives.

The film aims to encourage small businesses and organisations to take certain steps to help their business or organisation to become dementia friendly. These steps can be small but can make a huge difference to someone who is affected by dementias life

The film is shot from the point of view of Mary. Mary is a person who is affected by dementia.

The role 'Mary' is portrayed by an actress. The scenes featured in the film are fictional but are based on real life experiences.

A full transcript of this film is available here.

The Dementia Friendly Communities programme focuses on improving inclusion and quality of life for people with dementia. Our five year strategy includes a key ambition to work with people affected by dementia and key partners to define and develop dementia friendly communities. Dementia Friends is a key part of the Dementia Friendly Communities programme. The Prime Minister's challenge on dementia also includes an ambition to create communities that are working to help people live well with dementia.

The Dementia Friendly Communities programme focuses on improving inclusion and quality of life for people with dementia. Our five year strategy includes a key ambition to work with people affected by dementia and key partners to define and develop dementia friendly communities. Dementia Friends is a key part of the Dementia Friendly Communities programme. The Prime Minister's challenge on dementia also includes an ambition to create communities that are working to help people live well with dementia.

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Saturday, June 21, 2014

'Alzheimer's disease: Breaking the multicultural barriers to help sufferers.' Janie Barrett Photos, Daisy Dumas Story, The Sydney Morning Herald

I really can't recall the last time I cried looking at a photo.

But the second I saw this incredible photo essay, tears welled. My kids were around me and I had to go to another room to concentrate on what I was seeing. It was beautiful. And poignant. And painful. And raw and very, very real.

These photos are in today's Sydney Morning Herald (go and get a copy while you can - the accompanying full story is so well done) and they are shot by the incredibly talented Janie Barrett. Who is also my friend. She is the most humble, hugely talented photog around.

Below are a selection of photos (reproduced with permission by Janie; please click on link below for the entire video documentation of these pics), and they are breathtaking. More from Janie - and Daisy Dumas, the writer who beautifully documented this very important story - is below. First, watch the video interviews here. They will make you cry. These beautiful people are close to the hardships of seeing a loved one with dementia, every single day. Click to see all the breathtaking photos here and the video interviews.

The accompanying story is titled 'Nameless intruder steals loved ones', and in it, it describes how for 'families from cultures that may not even have a word for dementia, the disease takes a heavy toll.'

Daisy details how more than 45,000 people from non-English speaking backgrounds in Sydney are living with a dementia diagnosis. I'll let that figure sink in for a minute. Add to that: every week 1700 new cases of dementia are diagnosed in Australia.

The support provided by Alzheimer's Australia is just incredible. From the melting pot of 40 separate communities Alzheimer's Australia work with, to the dedicated link workers they provide, Daisy does a beautiful job of depicting what it's like for people caring for loved ones with dementia, especially in ethnic communities. It can be a completely different beast in each cultural community, and I know this first-hand dealing with my mother's care, and being from an Italian background.

Read the full story here.

Here are some more photos from the collection:

Khana Dawod, who has Alzheimer's disease, in a nursing home in Western Sydney, believes the doll is a real baby. Photo: Janie Barrett

Nam Hut Hoy, who has Alzherimer's disease, becomes a handful for daughter Seam Heang Sam. Photo: Janie Barrett.

Kathy and Frank Deskar in their western Sydney home. Kathy suffers from Alzheimer's disease and is cared for by her husband. Photo: Janie Barrett

Sarah Odisho cares for her mother, Khana Dawod in her Western Sydney home. Photo: Janie Barrett.

Sarah Odisho with her mother, Khana Dawod. 
Photo: Janie Barrett.

Nam Hut Hoy, who is suffering from Alzheimer's disease, celebrates her 90th birthday with family and friends in her western Sydney home. Photo: Janie Barrett

To read more, click here.

Friday, June 20, 2014

'Love Story': 9 News Adelaide - VIDEO

This video is testament to a love that lasts through the ages. And through a dementia diagnosis and all that comes with handling the intense pressures of that.

What a beautiful story - it screened on Nine News Australia, the Adelaide edition last night.

So lovely. So emotional. So heartbreaking. So inspiring.

Do your parents have an enduring love story? Feel free to share it.

Monday, June 16, 2014

Casey Kasem Dies Age 82. End-of-life care discussion.

US radio personality Casey Kasem has died, age 82, of Lewy body dementia, which has symptoms similar to Parkinson's disease. His end of life care had made headlines recently. More on that below.

In a (perhaps) little known fact, Casey also lent his distinctive voice to the character Shaggy in the 'Scooby Doo' cartoons.

He was renowned for his unmistakable voice, heard on thousands of commercials and television announcements, as well as his syndicated radio show 'American Top 40', which debuted in 1970. At its peak, Casey's radio show was heard on more than 1000 stations in about 50 countries, including Australia. I vividly recall tuning in  on my little radio in suburban Sydney and discovering all the hottest songs first via this exciting US radio show. There was nothing else like it!

In 1989, Casey began 'Casey's Top 40' after a contract disagreement with his syndication company; a decade later, he returned to radio under the original show title. Ryan Seacrest took over the broadcast in 2004 and Casey retired in 2009.

In a statement posted online, his daughter, Kerri Kasem said: "Early this Father's Day morning, our dad Casey Kasem passed away surrounded by family and friends. Even though we know he is in a better place and no longer suffering, we are heartbroken."
A family legal battle over Casey's end-of-life treatment marked the end of his life.
Casey had three children with his first wife, Linda Myers, before divorcing in 1979.
His second wife was actress Jean Kasem, who he married in 1980. The couple had one child together.
Cssey had been the focus of a dispute between his three children from his first marriage and his second wife Jean.

The three children accused Jean of preventing them from visiting their father. Jean had been in control of Casey's medical care and controlled access to him. She had blocked Casey's kids from seeing him in recent months, according to court filings. In the final weeks of Casey's life, Kerri and Jean feuded over whether to keep feeding and hydrating a dying Casey. As his health deteriorated, a Los Angeles judge sided with Kerri and her siblings and permitted them to withhold food, hydration and his usual medication, siding with Kerri, who argued the nutrition was harmful to her father in his last moments.

“Giving food and water to a dying body creates pain and further suffering,” Kerri said at the time. “My father can no longer digest foods, and fluids fill his lungs up and will suffocate him.”

Casey's children chose end-of-life care at a Washington state hospital.

It poses the question: what would you do if faced with the same scenario for your loved one? Are you and your siblings/extended family on the same page? Have you and that conversation?

Monday, June 9, 2014

'Doll Therapy': bambole terapeutiche al Centro "Alzheimer" di Caltanissetta

Sometimes the very obvious strikes when you least expect.

I was looking for a clip on doll therapy used with Alzheimer's (I write about it in my upcoming book 'The Australian Ageing Generation Handbook', out July 2014) and I came across one in Italian. It was filmed in a facility in Caltanisetta in Sicily, by TV station TCS News TV.  Curiosity made me watch - it's not far from the place my mother was born.

I watched… and immediately I was struck. Well, of course Alzheimer's exists all around the world, I know that! However, seeing it described - and the doll therapy used in another country, again, of course it is - brought it back home for me. The plight of Alzheimer's is a universal one. And finding a way through the 'madness' of the unknowns of the disease is a desire shared by carers around the world.

Watch the clip below. You may not be able to understand the words, but the sentiment - and the passion behind making life easier, more comfy, and lovelier for our loved ones with Alzheimer's and their carers - is an international concern.

Have you tried doll therapy with a loved one?

As as aside, how fabulous is the Italian accent? I understand all in the above clip, even though they speak a LOT faster than I speak Italian with my mother and others.

Wednesday, June 4, 2014

Australians forced to rethink aged care: Nine News - VIDEO

Last night I was on Nine News giving my view on the aged care fee structure changes taking effect from July 1, 2014.

Mike Dalton interviewed me in light of being a carer with the very real possibility that we need to place our mother in aged care as her health, dementia and dependency level escalates. For now, she lives in her own home, with almost around the clock care. Mike also knew I've just written a book about aged care, as a guide for carers. It's out July 7.

Mike gave viewers a comprehensive guide of what we can expect in aged care fees in Australia… and it's not an easy road ahead for our beloved elderly.

See the story here:

Here is the preview clip, screened the night before:

(I often screen-shot friends who are on TV and tag them on social media, so it kinda makes sense I should do the same for me, below!):

I truly hope that in the near future when my book hits bookshelves I get the opportunity to speak out more and more, on whichever platform, to connect with carers. We are the lifeblood of the elderly and the vulnerable. We need to be heard and acknowledged. Any carer will tell you that. And the people we care for would want you to know, too.