I’m a bit behind in my posts since the last I’ve been in Vienna and Istanbul and now am in Cape Town, South Africa. I have had many wonderful, challenging, and eye opening experiences over the last couple of weeks. And, unfortunately, due to my posting procrastination, I do not really have time to get into all of the details without getting further behind in my posts. So, in large part, this post will be a cliff notes version of my experiences. The pictures for this post will all be towards the end.
I left Salzburg for Vienna–the land of the most expensive conference. And, had a few days to gather my bearings, do some errands, etc before the conference began. Unfortunately, the weather was crap on the days before and after the conference and wonderful on the days of the conference. Once I got into the conference though, I did not really mind missing the weather outside because what was happening inside was so inspiring and invigorating.
For three days, I was surrounded by some of Europe’s and United States’ leading Alzheimer’s and dementia researchers, advocates, and policy makers. The amount of passion and dedication was empowering. And, I left (nearly) every conversation more energized. For example, I met a man from the United States who works for Philips Electronics. At first thought, I was confused about what an electronic man was doing at a conference dedicated to policy. As we got to talking though, I became more and more interested in what this man had to say. Philips Electronics–and specifically their healthcare sector–is dedicated to creating innovative ways to help Alzheimer’s and dementia patients and their family carers.
It is not entirely surprising to me that some of the world’s leading businesses are becoming interested in the Alzheimer’s and dementia market. With an increasing amount of people suffering from Alzheimer’s and dementia, there is surely money to be made. What was interesting to me, however, is that Phillips was dedicating a lot of time–and resources–to trying to figure out exactly how to help family carers. In the electronics market (and really every market) it is important to always be innovative, to be one step ahead of the pack. In the States now, much of the emphasis is on nursing care facilities and how to better serve said facilities. I think it is telling and encouraging that Phillips is choosing not to focus on our current (arguably) unsustainable model of treatment and care and instead is focusing on a newer family and community centered approach.
I’m going to jump onto communities and Alzheimer’s in just a second but before I do so, I want to thank my new found acquintances in the UK, the States, and Jersey for such great conversation and encouragement. I’m new to the formal aspect of Alzheimer’s and dementia research/advocacy/policy etc and it empowering when some of the world’s leading researchers take the time to talk about my project and ideas. I left the conference knowing that I have options and the capacity to make tangible and positive change in the future.
One of the most innovative ideas I took from the conference was this emerging idea of creating dementia friendly communities. Based upon my reading of the National Dementia Strategies of several European countries, I think it is fair to assume that many governments have recognized that the nursing home model of care is not economically, socially, or medically sustainable. As a result, many of the recommendations found in these reports focus on ways to keep the Alzheimer’s or dementia patient in the community for as long as possible.
Caring for a loved one suffering from Alzheimer’s or dementia is a challenging task and one that, I think, cannot really be done alone. At the moment, I think it is safe to say that universally the socio-economic incentives necessary to enable caregivers to keep their loved ones at home are hard to come across. Carers are often charged with the responsibility of keeping their wife, husband, father, mother, friend, etc safe, relatively healthy, and happy while also tending to the house, errands, and a number of other practical considerations. And, doing all of this while also ensuring that their loved one doesn’t upset the neighbors, confuse the store attendants, and in some cases, become aggressive. Or, worst of all, wander off and get lost. I met someone on this trip who has not seen his dementia suffering grandfather for years because he wandered off one day and never came back.
Alzheimer’s and dementia are still relatively misunderstood diseases and as a result, a lot of people do not know how to respond to victims. One of the core tenets of dementia friendly communities is that the communities (ranging from the school children to the storekeeper to the policy officer) need to be taught about Alzheimer’s and dementia. Once a general understanding of the disease within a community exists, carers will be more able to take their loved ones out into the community to run errands, etc. I also think it is important that dementia awareness become part of the training curriculum for people holding public posts–ie the police officers, firefighters, etc.
It’s a relatively new concept and I’ve really only touched the surface with it. I’m finding that most of my questions are just answered with new questions. And, when it comes to dementia friendly communities, some of my questions could be answered at next years Alzheimer’s Europe conference in Malta dedicated to “Dementia Friendly Communities.” So, I’ve got a little under a year to find a job and convince them that they need to pay for me to go to this conference. Challenge accepted.
Over the past few months, I have heard countless public health officials, dementia advocates, policy makers, etc refer to Alzheimer’s and dementia advocacy as the “cancer of the 80′s.” Meaning that cancer for a long time was a largely stigmatized, under-diagnosed, underfunded, and relatively neglected disease. Thanks to the millions of cancer victims, their families, and the work of doctors, nurses, and public health officials, cancer has become one of the best known diseases in the world. The thing about Alzheimer’s and dementia though is that patients often are faced with stigmatization and the eventual degradation of their voice. So, you get a much smaller proportion of victims and their families speaking to the disease.
Which leads me to my next and last Alzheimer’s point of this here post, there is a growing idea formulated by Alzheimer’s and dementia victims called “nothing about us without us.” Meaning, don’t go developing these national dementia strategies, care giving techniques, etc without consulting with representatives from the Alzheimer’s and dementia populations and from their families and friends. At the conference, a woman named Helga Rohra from Germany spoke about her experience with a form of dementia. I took a video but alas cannot post it here. Instead I’ll include a link to a letter from Helga to you and me and all the flans in the world: http://www.alzheimer-europe.org/Living-with-dementia/Personal-experiences-of-living-with-dementia/Helga-Rohra-Germany. Her strength was incredible and her message heartfelt and influential. We need to get and keep Alzheimer’s and dementia patients and their families out there talking about the disease and influencing policy as much as possible. I want to be able to look back at Alzheimer’s and dementia fifteen to twenty years from now and see it as one of the most successful public health campaigns of our era.
So, moving right along: PICTURE TIME. I left the Alzheimer’s Europe conference on Saturday evening and attended the “Long Night of the Museums” in Vienna. Vienna is world renowned for its culture, museums, etc. I did not take the opportunity to learn about famous painters, musicians, politicians, etc however and instead tried on lots of hats, imperial dresses, ate traditional goulash, and sipped champagne. Then, I went to bed at midnight–a whole hour before the whole shebang was over–because Grandma Jen was tired and wanted a cup of tea and her hostel dorm room bed.
I left Vienna for Istanbul and had six days in the city I have fallen for each city that I’ve been to in some capacity or another but thus far, none quite like Istanbul. Six days is not nearly enough time for this city. Every corner I turned down there was some new surprise. My senses were constantly being overloaded but this overload only drew me harder and faster to the city. I can’t accurately describe what it felt like when I was walking through the spice market smelling things that practically made me drool when I heard the call to prayer echoing through the market. It was one of those, “What is my life and how did I get so fortunate?” moments. I think you really have to go there to understand what I’m saying so, if you ever get the chance, GO TO ISTANBUL.
I was not able to do any formal research in Istanbul but based upon informal conversations with over a dozen Turkish people paired with some additional research, my expectation for what care looks like in Turkey matched the reality. Care is predominately done within the home by women. And, even if social services were available, most would refrain from using such resources because it deviates from the culture. To ask for help is often viewed as socially unaccepted and bearing the burden of caring is the expectation for many women. I think I’m going to return to Turkey so I imagine in the future, I’ll have much more to say and so I’ll end this post here.