Wednesday, October 21, 2015

Dementia / Alzheimer's Report: 60 Minutes Australia VIDEO

Did you watch the story on '60 Minutes' on dementia?

It screened a few days ago, but I only just watched it now - that's what happens with confronting stories/life events for me... I am a master avoider. Denial - a great place live. 

Regular readers of this blog page will know that I have had very hands on experiences with dementia - I nursed my mother to her death from this horrible disease, dementia. I, along with family members and carers who assisted, saw first hand the scourge of it all, the debilitating and depressing demise of my beloved mamma.

We of course did all we could to keep her alive, and 'alive', for as long as possible. Sadly, in the end, the disease won.

BUT: this story gives hope and shows practical measures and some perhaps surprising ways our elderly population can thrive in their final decades with vibrancy.

As the neurologist Claudia Kawas says in the story: "Half of all children born in Australia, The United States, Western Europe today will live to a birthday past 100". Yes. Think about that for a minute. Staggering.

She also adds that micro infarcts (small strokes) are now said to be contributors to dementia, according to their recent research. I can vouch that going to see a geriatrician with your parent is one of the most harrowing things you will ever do. The lesions seen on the X-ray of a loved one's brain... awful. And Dr Kawas's theory completely makes sense wit what I saw.


Sadly: a postscript... since the story aired Lee and Jim (part of two seperate couples seen in this story) have passed away. RIP.

Wednesday, August 5, 2015

Sterling's Dream: The Common Good VIDEO

Ah yes, kids.

The things they see. The way it affects them, scars them even.

I sometimes wonder how my kids processed my mother's dementia.

For almost two years, every school holidays, EVERY SINGLE DAY - they were there with me, caring for my mum.

Every New Year's Eve - we were together. Every time mummy went out on the weekend during the day, it was to to Nonna's house.

When they saw mummy mad with Nonna (which was completely futile - rule number one: never argue with a dementia patient), they saw the effects dementia has on the carer, and that dementia is a family disease. That is, the family who are involved with the person with dementia constantly.

I came across this organisation The Common Good a few days ago, via a full page ad in a Sunday supplement magazine.

Then I saw this TV ad.

And so, I had to post.

Watch the video:

Says the site:

Sterling is just 10 years old. He has a dream – to find a cure to Dementia.

When he was just 3 years old his Grandmother was admitted into a nursing home and since then he has always wanted to find a cure. Now he can – with your help.

Sterling is an Ambassador for The Common Good, and wants to inspire every-day people to power medical discoveries that can make the world better.

Sterling has a dream and he epitomises the issue that dementia affects everyone - even someone so young.

There is no cure for dementia. It can happen to anyone. Right now, there are more than 44 million sufferers worldwide, and that number is expected to treble by 2050. The impact this will have on individuals, their families and our health system will be devastating.

The search for a solution is underway, and a team at The Prince Charles Hospital is right at the forefront, working to identify the biological process that sets dementia in motion well before memory loss occurs.

Read more here.

Tuesday, June 30, 2015

Consumer Directed Care: In-Home Care Changes, Australia July 1 2015 + Daughterly Care

I love this interview.

For carers, it explains changes taking effect from tomorrow, July 1 2015.

Kylie Lambert from the organisation Daughterly Care is right: this is a "watershed moment" for the Australian government, for Australians seeking out care options, for home carers, and for Australian aged care.

Watch the whole clip here, below.

And find out LOTS more at the Daughterly Care site here.

Exclusive Clips


Elderly independence

June 30, 2015: Consumer Directed Care to offer stay-at-home care options up to $52,000.

Tuesday, June 16, 2015

'Present Perfect' Trailer and Kickstarter campaign

What can the very young and the very offer each other, if given the chance?
This is what the creators of this new, just-released trailer called 'Present Perfect', ask.
Here is a place where the retired and the young come together to bring more joy into their lives.
It lets the elderly leave their empty houses and help shape young minds. It also changes how nursing homes and the elderly are viewed.
Such a place is very real - and it's changing the way we look at aged care facilities and educating our impressionable youngster, for the better.
Says the YouTube description:

Present Perfect explores the very real experience of aging in America - both growing up, and growing old. Help us bring this incredible story to life. Go to to support this film!

Says the description on the Kickstarter project page:

About this project

“Connections between generations are essential for the mental health and stability of the nation.” -Margaret Mead

Why is this film important?

Present Perfect explores the very real experience of aging in America- both growing up, and growing old. It was filmed in a preschool housed completely within a retirement home, powerfully capturing the subtleties and complexities of the young children's interactions with the elderly residents, while challenging us to consider what we're doing- and what we’re not- to prepare future generations for what’s to come. What value does a person have to others throughout their life? Are we asking for the right contributions from each other? How do we measure and define a successful life? While this film doesn't shy away from confronting some difficult realities, it is ultimately a life-affirming story of hope that, we believe, just might lead to serious positive change. 
The Present Perfect team is asking you to join us by helping us raise the money we need to create a rough cut of the film, and bring this unique and valuable story to life. We need your support to make this happen!
The inspiration for Present Perfect stemmed from a longstanding desire to explore the experience of aging in America. As a filmmaker, I’m drawn to simple, subtle stories that provide a framework for much bigger ideas, stories that promote reflection, revealing new layers of complexity that ultimately expand our way of thinking about a particular topic and even, perhaps, our entire world view. I love films that really make you think- and not just in the moment, but for days, weeks, even months following. After spending a few days observing the residents and kids at The Mount, I knew this was one of those stories.
Stepping into most any nursing home, it’s hard to ignore the sense of isolation one feels on behalf of the residents living there, and even harder to reconcile that with the fact that old age will inevitably come for us all. In our fast-paced, youth-obsessed culture, we don't want to be reminded of our own mortality. It’s easier to look away. 
When I heard about the Mount and its Intergenerational Learning Center, I was struck by the simple perfection of the concept. I was further intrigued by the idea that with neither past nor future in common, the relationships between the children and the residents exist entirely in the present. Despite the difference in their years, their entire sense of time seems more closely aligned. As busy, frazzled, perpetually multi-tasking adults, we are always admonished to live ‘in the moment’. But what does that mean? And with the endless distractions provided by our smart phones and numerous other devices, how can we? I was curious to observe these two groups, occupying opposite ends of the life spectrum, to see firsthand what it meant for them to simply be present with each other.  
Shooting this film and embedding myself in the nursing home environment also allowed me to see with new eyes just how generationally segregated we’ve become as a society. And getting to know so many of the amazing residents of the Mount really highlighted the tremendous loss this is- for us all. 
Over the course of the months I was filming at the Mount, I observed many incredible exchanges between residents and kids. Some were sweet, some awkward, some funny- all of them poignant and heartbreakingly real. One experience in particular occurred during a morning visit between the toddler classroom and several residents who had gathered to sing songs together. Everyone had just finished a rendition of “You Are My Sunshine” when one of the residents began to share a memory he had of singing that very same song late at night on a bus full of soldiers while serving overseas during World War II.
The clarity with which this gentleman recalled this era of his life so many years ago was breathtaking- the memory seeming to appear before his eyes as he spoke. And though the kids were too young to understand his words, the fact that their presence provided a catalyst for his recollection just seemed to fit in a ‘circle of life’ kind of way. I’ve reflected on that moment many times since- it was beautiful and profound, and I was grateful to have been there to witness it. Those small, quiet moments are often the ones that contain the most meaning, and sadly are also the ones that most of us are too busy and distracted in our day-to-day lives to notice. 
This is a film about the very young and the very old, yes. But it’s also about something bigger, something harder to pin down, but so essential in every way. In the words of Susan Bosak, founder of the Legacy Project, “It’s the experience of life in a multigenerational, interdependent, richly complex community that, more than anything else, teaches us how to be human.” I couldn’t have said it better myself.

Project Status

Present Perfect was filmed at the Providence Mount St. Vincent retirement home in Seattle, WA, also home to the Intergenerational Learning Center, over the course of the 2012-2013 school year. This project has been one gigantic labor of love, funded entirely out of my own pocket for the first two years. I invested in new camera and audio equipment so that I could function as a one-woman crew and truly embed myself in the environment. I paid babysitters to watch my kids so that I could film three times a week for the entire school year, and I've spent countless hours applying for grants and pitching this film to as many people as possible. All of this in addition to juggling my regular paid work as a freelance producer and adjunct professor of film! And it doesn’t stop there. Numerous friends and colleagues have generously donated their time and talents to help get the film to where it is now, while a handful of friends and family contributed funds allowing me to hire an editor to help put together the trailer you see above. I am so grateful to everyone who has had a hand in seeing this project get off the ground. We are well on our way! 
Now we need to raise enough to complete the edit. That's where you come in! All of the feedback I have received from industry professionals as well as regular folks has been extremely positive! The project was even awarded a grant in 2013 by Artist Trust, an organization that supports Washington State artists. People are intrigued and want to see more! In order to make that happen we need to bring on an experienced documentary editor to provide a fresh perspective and help to shape the story from the amazing footage we have to work with. Fortunately the film has been shot already- the footage is in hand! But post-production is not cheap. We need to raise at least $50,000 to pay for the edit of this film.


For those of you who may not be familiar with Kickstarter, it’s an all or nothing deal. We have to raise the full amount in order to get any money at all. Any donation, no matter how small, helps in a major way! The goal is to get this project seen by as many people as possible. So in addition to giving to the campaign, you can also help by sharing this Kickstarter page and spreading the word via FacebookTwitterInstagram, email, phone, bike messenger, telegram, or by simply shouting it from the mountain tops!
We've set a goal of raising $50,000 to pay for the edit, but with $75,000 we could cover some additional costs necessary to complete the film including:
  • composition of an original score
  • color correction
  • sound mix
So if we make it to $50,000- let's keep going!
All of the money raised by this Kickstarter campaign will go directly toward the editing of this film. We have high hopes for this project and are committed to seeing it reach its full potential. With your help, it can happen!


A huge and heartfelt THANK YOU in advance for anything you can do to support this film. It means so much, not only to me as the filmmaker, but to the amazing people at the Mount who opened up their hearts and their lives in order to help tell this story.
With lots of love and gratitude,
Evan and the rest of the Present Perfect team
Visit the films's website at:
Like us on Facebook!
Follow us on Twitter, Instagram and Pinterest!

Risks and challenges

You'll hear it from any independent filmmaker-- getting a film made is a HUGE undertaking, requiring the efforts and dedication of so many. But we wouldn't be doing it if we didn't care so much about getting our stories out there.

The hope is to have the film completed by early to mid 2016- but there's a chance it could take longer. The film WILL get made!

Go on - support this incredible project!

Sunday, June 14, 2015

Younger Onset Dementia Key Worker Program: Petition from Judy Woolstencraft

This is a petition that is very important. From Judy Woolstencraft, from Giralang, Australia.

On, Judy says:

We want more services targeted at people with younger onset dementia and their families and for the funding of the Younger Onset Dementia Key Worker Program to continue as it is and NOT become part of the National Disability Insurance Scheme (NDIS).

Here is a photo of Judy and her partner Chris:

She writes:
Currently 1 in 13 of  people diagnosed with dementia are under 65.  My partner, Chris (pictured with myself on holiday in the UK in 2009) was one of these people, being diagnosed in 2007, aged 56. As we discovered there were very few services targeted at this age group who have specialised needs. Most services for dementia were targeted at an older age group and as an active man who wanted to pursue his interests for as long as he could, Chris found most were unsuitable for his needs.
One program that is available is the Younger Onset Dementia Key Worker Program. This program is a specialised service funded by the Government that works one on one to assist a person with younger onset dementia through their journey and assists to find and develop suitable programs and services.
However now the Australian Government has said from July next year the Younger Onset Dementia Key Worker program will become part of the NDIS. The NDIS does not have the expertise with dementia, will not assist with family support or have access to suitable programs.
Without the Key Worker Program people will fall through the gaps of aged care and disability and wont have their dementia focussed services that meet their unique needs.

Friday, June 5, 2015

Sheryl Sandberg on grief and mourning and her late husband Dave Goldberg


One of the most powerful pieces I have ever read about grief.

Just posted by Sheryl Sandberg (the COO of Facebook) about her late husband Dave Goldberg (founder and CEO of 'Survey Monkey'), who died suddenly last month.

If you have lost someone, your partner, your mother, your father, your child, your lifelong spouse - you WILL relate. The pain and the physical ache inside is deep.

Feel free to share this post and these wide words:

Today is the end of sheloshim for my beloved husband—the first thirty days. Judaism calls for a period of intense mourning known as shiva that lasts seven days after a loved one is buried. After shiva, most normal activities can be resumed, but it is the end of sheloshim that marks the completion of religious mourning for a spouse.

A childhood friend of mine who is now a rabbi recently told me that the most powerful one-line prayer he has ever read is: “Let me not die while I am still alive.” I would have never understood that prayer before losing Dave. Now I do.

I think when tragedy occurs, it presents a choice. You can give in to the void, the emptiness that fills your heart, your lungs, constricts your ability to think or even breathe. Or you can try to find meaning. These past thirty days, I have spent many of my moments lost in that void. And I know that many future moments will be consumed by the vast emptiness as well. 

But when I can, I want to choose life and meaning. 

And this is why I am writing: to mark the end of sheloshim and to give back some of what others have given to me. While the experience of grief is profoundly personal, the bravery of those who have shared their own experiences has helped pull me through. Some who opened their hearts were my closest friends. Others were total strangers who have shared wisdom and advice publicly. So I am sharing what I have learned in the hope that it helps someone else. In the hope that there can be some meaning from this tragedy. 

I have lived thirty years in these thirty days. I am thirty years sadder. I feel like I am thirty years wiser.

I have gained a more profound understanding of what it is to be a mother, both through the depth of the agony I feel when my children scream and cry and from the connection my mother has to my pain. She has tried to fill the empty space in my bed, holding me each night until I cry myself to sleep. She has fought to hold back her own tears to make room for mine. She has explained to me that the anguish I am feeling is both my own and my children’s, and I understood that she was right as I saw the pain in her own eyes. 

I have learned that I never really knew what to say to others in need. I think I got this all wrong before; I tried to assure people that it would be okay, thinking that hope was the most comforting thing I could offer. A friend of mine with late-stage cancer told me that the worst thing people could say to him was “It is going to be okay.” That voice in his head would scream, How do you know it is going to be okay? Do you not understand that I might die? I learned this past month what he was trying to teach me. Real empathy is sometimes not insisting that it will be okay but acknowledging that it is not. When people say to me, “You and your children will find happiness again,” my heart tells me, Yes, I believe that, but I know I will never feel pure joy again. Those who have said, “You will find a new normal, but it will never be as good” comfort me more because they know and speak the truth. Even a simple “How are you?”—almost always asked with the best of intentions—is better replaced with “How are you today?” When I am asked “How are you?” I stop myself from shouting, My husband died a month ago, how do you think I am? When I hear “How are you today?” I realize the person knows that the best I can do right now is to get through each day.

I have learned some practical stuff that matters. Although we now know that Dave died immediately, I didn’t know that in the ambulance. The trip to the hospital was unbearably slow. I still hate every car that did not move to the side, every person who cared more about arriving at their destination a few minutes earlier than making room for us to pass. I have noticed this while driving in many countries and cities. Let’s all move out of the way. Someone’s parent or partner or child might depend on it. 

I have learned how ephemeral everything can feel—and maybe everything is. That whatever rug you are standing on can be pulled right out from under you with absolutely no warning. In the last thirty days, I have heard from too many women who lost a spouse and then had multiple rugs pulled out from under them. Some lack support networks and struggle alone as they face emotional distress and financial insecurity. It seems so wrong to me that we abandon these women and their families when they are in greatest need.

I have learned to ask for help—and I have learned how much help I need. Until now, I have been the older sister, the COO, the doer and the planner. I did not plan this, and when it happened, I was not capable of doing much of anything. Those closest to me took over. They planned. They arranged. They told me where to sit and reminded me to eat. They are still doing so much to support me and my children. 

I have learned that resilience can be learned.  Adam M. Grant taught me that three things are critical to resilience and that I can work on all three. Personalization—realizing it is not my fault. He told me to ban the word “sorry.” To tell myself over and over, This is not my fault. Permanence—remembering that I won’t feel like this forever. This will get better. Pervasiveness—this does not have to affect every area of my life; the ability to compartmentalize is healthy. 

For me, starting the transition back to work has been a savior, a chance to feel useful and connected. But I quickly discovered that even those connections had changed. Many of my co-workers had a look of fear in their eyes as I approached. I knew why—they wanted to help but weren’t sure how. Should I mention it? Should I not mention it? If I mention it, what the hell do I say? I realized that to restore that closeness with my colleagues that has always been so important to me, I needed to let them in. And that meant being more open and vulnerable than I ever wanted to be. I told those I work with most closely that they could ask me their honest questions and I would answer. I also said it was okay for them to talk about how they felt. One colleague admitted she’d been driving by my house frequently, not sure if she should come in. Another said he was paralyzed when I was around, worried he might say the wrong thing. Speaking openly replaced the fear of doing and saying the wrong thing. One of my favorite cartoons of all time has an elephant in a room answering the phone, saying, “It’s the elephant.” Once I addressed the elephant, we were able to kick him out of the room. 

At the same time, there are moments when I can’t let people in. I went to Portfolio Night at school where kids show their parents around the classroom to look at their work hung on the walls. So many of the parents—all of whom have been so kind—tried to make eye contact or say something they thought would be comforting. I looked down the entire time so no one could catch my eye for fear of breaking down. I hope they understood. 

I have learned gratitude. Real gratitude for the things I took for granted before—like life. As heartbroken as I am, I look at my children each day and rejoice that they are alive. I appreciate every smile, every hug. I no longer take each day for granted. When a friend told me that he hates birthdays and so he was not celebrating his, I looked at him and said through tears, “Celebrate your birthday, goddammit. You are lucky to have each one.” My next birthday will be depressing as hell, but I am determined to celebrate it in my heart more than I have ever celebrated a birthday before. 

I am truly grateful to the many who have offered their sympathy. A colleague told me that his wife, whom I have never met, decided to show her support by going back to school to get her degree—something she had been putting off for years. Yes! When the circumstances allow, I believe as much as ever in leaning in. And so many men—from those I know well to those I will likely never know—are honoring Dave’s life by spending more time with their families. 

I can’t even express the gratitude I feel to my family and friends who have done so much and reassured me that they will continue to be there. In the brutal moments when I am overtaken by the void, when the months and years stretch out in front of me endless and empty, only their faces pull me out of the isolation and fear. My appreciation for them knows no bounds.

I was talking to one of these friends about a father-child activity that Dave is not here to do. We came up with a plan to fill in for Dave. I cried to him, “But I want Dave. I want option A.” He put his arm around me and said, “Option A is not available. So let’s just kick the shit out of option B.” 

Dave, to honor your memory and raise your children as they deserve to be raised, I promise to do all I can to kick the shit out of option B. And even though sheloshim has ended, I still mourn for option A. I will always mourn for option A. As Bono sang, “There is no end to grief . . . and there is no end to love.” I love you, Dave.

Sunday, May 24, 2015

Sex and dementia: Maree McCabe on 774 ABC Melbourne

Alzheimer's Australia Victoria chief executive officer Maree McCabe spoke on radio 774 ABC Melbourne about sex and dementia recently.
I listened to the radio segment that night, as interested as ever about a topic which is endlessly intriguing: dementia, and what makes the mind tick. Add the taboo topic of sex, in the mix of the already misunderstood world of dementia, and it makes for exceptional listening and learning.
Maree said family members were often uncomfortable with their parents or grandparents forming sexual relationships while in residential aged care.

Maree McCabe
Alzheimer's Victoria are co-presenting the 'Lets Talk About Sex' conference in Melbourne in September, which will focus on the issues older people face regarding intimacy and relationships.
"It's actually a social issue, we are very ageist about sex," Maree told 774 ABC Melbourne.
"If you talk to someone and suggest their grandparents might have sex, people recoil in horror."
This is completely true. How many times have you heard a very juvenile, "Eeeeww!" when the topic of sex and dementia comes up? I think it's ageism at its ugliest.
Maree said aged care facilities often have no idea how to approach the topic of their residents' sexuality. An example: when dementia sufferers are found to be in possession of pornography.

"[The care facility] often don't know how to deal with it, and what they'll do is they'll confiscate materials," Maree said.

"That can increase challenging behaviours [from the resident]." 

Maree said the discussion of sex and dementia often centred on consent, adding that a person could be affected by dementia and still have the capacity to consent to sex.

"Capacity is not a blanket you-have-it-or-you-don't, it's actually something that is very complex to assess," she said.

"Whilst somebody may not be able to balance their bank account they may very well have the capacity to choose the food that they eat, for example."

Maree said the 'Lets Talk About Sex' conference was an opportunity to have frank discussions about the sexual needs of aged care residents. 

"This is a really complex issue and it highlights for us the need to be able to have these conversations in a respectful way that honours people's rights and their choices and supports them in having a life that is meaningful for them in the areas of sex and intimacy," she said.

To hear the entire interview, click here.

I deal with the topic of sex and dementia in my book 'The Australian Ageing Generation Handbook'. Click here for more about the book.