Alzheimer’s Care in South Africa: It’s a Spectrum

My time in South Africa is coming to a close and I board a flight tomorrow back to Istanbul. In my three months here, I have visited over two dozen elder care facilities or projects, met some of the most inspiring and hospitable people, and faced several challenges. I could easily spend more time in South Africa doing research and part of me is bummed to be leaving so soon.

When I speak to strangers and fellow travelers about my project I usually get two questions: why did you choose to come to South Africa? And, what have you learned? At the end of my three months here, I have added another question for myself: What Alzheimer’s experience has influenced me the most? These are questions that I am constantly working through and revising.

Why did I come to South Africa?
I have spent a lot of time over the last (almost) six months thinking about my values and in my “top ten” list, I have determined that I really value personal growth and challenge. Over a year ago, when I began developing this project, I determined South Africa would be a challenge for me: it would be my first time on the continent, apartheid era imbalances are still very prevalent, South Africa had the highest reported rates of HIV and AIDS internationally, poverty and unemployment are high, and South Africa is the rape capital of the world. I figured because it would be a challenge it would also be an opportunity for growth.

In terms of Alzheimer’s and dementia care, I wanted to come to South Africa to look at the effect of apartheid era imbalances on elder care, the different approaches to care based on the variety of cultures within the country, and the effects of the HIV/AIDS on grandparents and grandchildren. Alzheimer’s South Africa was also very receptive to my coming so, that helped.

Lastly, I heard rumors of South Africa’s beauty and I wanted to see it for myself. The landscape ain’t bad.

Afternoon Hostel View

Waterfall Hike

Waterfall Hike

What have I found?
As the title of this blog posts suggests, I have found that there is a spectrum of Alzheimer’s care in South Africa. In general, if you have financial favor on your side you can access some quality Alzheimer’s and dementia care. For example, there is an Alzheimer’s Home outside of Port Elizabeth called “Country Home.” Most of it’s residents are from the upper class of South Africa, all are white, and residents are made to feel at home. The carers spend time getting to know the residents, showing them respect, and encouraging them to be engaged in the numerous activities. Food is cooked in house. And, the owner is dedicated to treating the residents and their family members how she wished her own mother was treated when she suffered from the disease. It is a quality place but a place that is only available for a few.

On the other end of the spectrum, you get witchcraft. I can still remember exactly where I was standing when I learned about the issue of witchcraft and aging throughout Africa. My mouth fell open, my heart sunk, and a bit of shock entered into the equation. In many communities throughout Africa, traditional medicine is the rule of the land. I am not unfamiliar with traditional medicine and, in general, have an enormous amount of respect for traditional medicine and local knowledge. Alzheimer’s disease and dementia being seen as witchcraft, however, challenges that respect.

In some rural communities, people suffering from Alzheimer’s or dementia will be taken to see the village sangoma, or traditional healer. The sangoma may take the fact that the person has been wandering at night (a symptom of the disease), has lost the ability to speak coherently(another symptom), and/or forgotten their activities as a sign that the person is either a witch or has been affected by witchcraft. In some cases, the person is either killed on site, abused and neglected, or kicked out of the community(which is often a death sentence).

Given an understanding that Alzheimer’s disease and dementia are both recognized medical conditions, the murders and abuse of some Inflicted by the conditions are being called to question and some progress is being made. I spent a week with the Alzheimer’s South Africa regional director of kwazulu natal. Kwazula Natal is a region in South Africa with many tribal communities, a strong presence of sangomas, and a growing belief in witchcraft (among some sectors of the population). The Kwazula Natal Alzheimer’s group is making some progress in spreading awareness about the disease in rural tribal communities. For example, in one tribal community, they have an office that does income generation for local women through the makings of beaded forgetmenots. This same office also does home visits for people suffering from the disease, creates awareness signs in the local language, and also works to try to get the tribal leader and traditional healer on board with their mission.

Road Blocks

Road Blocks

Forget-Me-Nots

Forget-Me-Nots

Tribal Community Outreach Office

Tribal Community Outreach Office

The examples of the country home and witchcraft, I hope, demonstrate how diverse care for Alzheimer’s disease and dementia is within South Africa. These sorts of painful disparities aren’t uncommon in South Africa but as with most things, there is some middle ground. There are Alzheimer’s care options that don’t quite fit near either end of the spectrum or that fit closer with one than the other. In general, most of the homes that I visited fit in the middle of the spectrum.

Sunnyside Park Home is an example of a middle of the spectrum kind of home. The home catered to the lower income elderly and did not offer a ton of amenities. It did offer an Alzheimer’s ward for about thirteen women of all races. The Alzheimer’s ward lacked a sufficient common area, there was little room for full on engagement with all of the residents, and the patients had little privacy. Yet, Sunnyside was one of my favorite homes. The carers really impressed me…they led dance and singalong times, touched the patients with compassion, and always looked into the residents eyes. They treated the patients with respect and love and the patients responded positively (surprise attack!). Of all the carers I have seen so far, the carers of Sunnyside were the most impressive.

Monkeys: The Alzheimer's Thieves

Monkeys: The Alzheimer’s Thieves

There are a number of other examples and experiences I could recount here but my guess is I’ve lost most of you already. If you want to know more, let’s skype. I could talk for days about the spectrum of care (and everything else) in South Africa. For. Now though, I’ll move on to two very influential Alzheimer’s experiences.

Influential Moments in the Alzheimer’s world:

In my last post, I shared my experiences at and my disappointment with the St. Joseph’s Home with you. The home closed a couple of months ago and many of the residents moved to a sister home, the Nazareth House. I spoke to a family member of a newly relocated Alzheimer’s patient and she seemed to be happy enough with the arrangement. The Alzheimer’s and dementia patients were living of together in little cottages with carers. Then, I received word a couple of weeks ago that all of the St. Joseph’s Home residents needed to leave the Nazareth House. The reason was not fully disclosed and family members were only told: “it’s financial.”

When I received the last e-mail, I immediately started to tear up. Is it not enough that these family members and Alzheimer’s patients are going through the disease? What happened within the management of these homes to influence them to turn out some of the patients who need the most care and abandon the family members that often need the most support? The answer that it was “financial” doesn’t really cut it for me. I am still working through this and trying to find some more answers. I am left with a lot of questions and many concerns. I know that the late St. Joseph’s Home and the resulting expulsion of the Alzheimer’s patients will forever influence me and that the family members and patients I grew close to will be on my mind for a long time to come.

Influential Moments in the Land of Snakes:
In December, I was fortunate enough to spend about two weeks in Mpumalanga, a very rural area of South Africa near to the Kruger Park and full of fatally poisonous snakes. For a few days, I worked in the Tonga Hospital. Tonga Hospital is a government hospital that serves the local community but often lacks adequate resources, competent staff, and any safety standards. It is also the place where I met my first snakebite victim (and then went home to a house with a loose black mamba!!!!). It is a hospital that advocates for medical male circumcision to a) increase a mans manliness and b) reduce the spread of stds and aids. It was a hospital of challenges.

It was particularly challenging when staff members repeatedly asked me why I was working withAlzheimer’s and dementia when there were clearly bigger fish to fry. I was told on several occasions that they don’t work with Alzheimer’s patients because what is the point? And, wouldn’t resources be better allocated somewhere else? Families sometimes abandon Alzheimer’s victims at the hospital and the hospital in turn places the victim back in the community without much regard to the victims well being.

Then, on my last day at the hospital a woman came in with her mother. The woman seemed to be suffering from Alzheimer’s or dementia. And, they wanted me to talk to the family to explain the disease. I was happy to talk with the family, through the assistance of a less than excited translator, and I attempted to explain the disease, symptoms, and helpful hints. At the end of the day though, I can’t help but feel like that families trip to the hospital was a waste. In large part, their need and pain was dismissed by the hospital, I could offer nothing tangible, and no support networks or options really exists for their family. All I could do is look into their eyes and try to wordlessly communicate how genuinely sorry I was that I couldn’t do more and that they were having to go through this experience.

I left that experience with a lot of unanswered questions. I still have a lot of unanswered questions. Thankfully, I’ve got a lot of time on my hands to think about things.

Looking Forward:
I leave South Africa tomorrow but I have a sneaking suspicion that I am not done looking at elderly care here-and, that looking at geriatrics throughout the continent could be on the horizon. I have a genuine and deep passion for global health and for the treatment of the elderly internationally. With that in mind, I know that any return trips to Africa for now will be just that: research trips.

Throughout all of my traveling, my appreciation for “home” has grown. As has my dedication to working to improve my own communities. So, folks, no need to worry about me applying for another international fellowship or position soon. I am gearing up to work in our communities. And, I am excited to see what lies ahead (as long as it is not chronic unemployment).

For the moment though, I am trying my luck out in Turkey once more before heading to another yet to be determined country. Somewhere in Latin America sounds appealing. I’ll keep ya posted but I expect I will be home in mid to late March.

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Closing Time: The Premature Closing of St. Joseph’s Home and Some Comparisons

I am painfully behind on blog posts. It seems to be a chronic problem that has been exasperated by my South African life. But a person should never begin a public speech–or a blog post– with an apology. And so, in leu of an apology, I will offer a brief explanation. T.I.A, folks, and wifi is very hard for me to comeby.This blog is gasping for wifi… And the wifi I am using now is slower than slow.

An overwhelming amount of exciting and eye opening things have happened over the past month and it would be impossible for me to convey all of those experiences and the gratitude I feel for the many South Africans that have helped me along this journey. I recently received word that an Alzheimer’s Home that I lived at for two weeks is in the process of shutting down. Because that news is still hot off the press and fresh on my mind, I am going to start with the St. Joseph’s Home.

I arrived at the Alzheimer’s home in Port Elizabeth on the verge of tears. I had just managed a brief escape from a very unfortunate lodging/researching arrangement and was dreading my impending tango with the city’s very unsafe public transport system back to said place. For those of you who don’t know, I was raised a Catholic. I was taught to always look for signs and I’ve done my fair share of praying. And, my dear flans, I took the fact that I was standing in a Catholic Alzheimer’s Home that shares the same name of my high school as a good sign. And boy, was it ever! My experience in PE quickly changed from one of the worst of my trip to one of the best thanks to the overwhelming kindness and hospitality displayed by Nicola, the receptionist, and Judy, the general manager.

Nicola took care of my transportation back to the place that shall not be named and Judy welcomed me the next day (thanks to the suggestion of Nicola) with news that I could stay at the home for free for two weeks. I think I got goosebumps. I fell into the Home’s routine pretty quickly and was shocked by the ease at which I connected with most of the residents, their families, and Nicola. The news of the homes impending closure came as an unpleasant shock (especially considering it just opened its doors five months ago). And, I am grappling to find some answers.

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There is no cure for Alzheimer’s and few medicines exist to delay the inevitable mental degradation. Alzheimer’s victims and their loved one are left with very few tools to combat this degenerative disease. Establishing routines, engaging in mental and physical stimulation, and minimizing stress on the victims may help to delay cognitive decline. The St. Joseph’s Home wasn’t perfect: it had three floors when it should of had one, the carers were often negligent, the food left something to be desired. For all of its shortcomings though, it did offer an affordable and specialized center for families trapped in the Alzheimer’s crisis. The residents slowly learned that this would be their new home, that tea came at 10:30, and there were movies every Tuesday and Thursday. And, their families adjusted, as much as one can, to the new routine.

The fact that the Alzheimer’s home is closing is almost heartbreaking. I know that the move will send those residents that still have some cognitive functionality and memory over an edge. Mrs. Dominy, for example, repeated herself often and was clearly slipping but still remembered her husband, family, and could form well structured sentences. She kept telling me that I was going to do great things for people like her. She could tell because I had such a great heart. This woman brought tears to my eyes. And the sight of her with her sweetheart (they’ve been married for over sixty years) was simultaneously heartwarming and depressing. The move will not be easy on her. Or her husband.

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Then there was Yvonne and her husband Pieter. Yvonne came every day to see her husband. Most days he didn’t do much but you could tell he knew exactly who she was. And, when he saw his grandchild for the first time his face light up like a Christmas tree. Yvonne has been keeping me updated on St. Joseph’s news and her family will be on my mind and in my heart during this next move.

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It was through Yvonne that I learned of Mr. Beamish’s passing. Mr. Beamish was the sweetest man and had a smile that could melt your heart. On a few of the days, I worked with him and got him to throw the ball back and forth. He eventually came into his element and started doing little tricks. The twinkle in his eye was still there. And, his wife, Mrs. Beamish, is such a strong woman. To see your loved one go through this disease causes unspeakable pain and a tremendous amount of character is needed to make it through.

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Like I said above, the St. Joseph’s home was not perfect but moving is far from ideal and it is a real shame that the residents and their families are being subjected to this additional trauma. I wish them all the best and hope that another Alzheimer’s home, one that is more Alzheimer’s friendly, pops up in Port Elizabeth soon.

Part of the reason that I was able to view the St. Joseph’s home with such a critical eye is thanks to a woman named Margie. Margie works for a company called Geratec that specializes in person centered elder care and also provides nutritious and tasty food to the elderly. Margie is an incredibly busy and driven woman who took an entire day out of her busy schedule to show me around to different homes that Geratec works with in the Cape Town region. To say I was impressed is an understatement and to express my gratitude accurately would be an impossibility.

We started at the Huis Ina Rena in Paarl. This home was absolutely stunning on the inside and out. I walked in thought I could be happy living here. What was most impressive though was how engaged the staff was with the residents. Residents helped with the cooking, had newspapers, the gardens were beautiful, and it honestly felt like a home. There was no underlying urine smell, the food actually smelt nice, and everything was bright and airy. To be fair, the home is for residents from a privileged socioeconomic background and public homes cannot afford the same luxuries.

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Thanks to M’s thoughtfulness I was able to see the contrast between a private high end home and a public low-end home located within one of the Townships. After visiting an additional high end living in place facility in Stellenbosch, we moved on to the notorious Ekuphumleni in Gugulethu. The home services the elderly living within the township and has a legacy of elder abuse and neglect, poor hygiene, and substandard conditions. Thankfully, Geratec recently began overseeing the home and things are improving. Residents are encouraged to garden, there is communal space, rats no longer frequent the area, and the rooms finally have some privacy. It is a slow process but care at the home is shifting from being grossly negligent to person centered and commendable.

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Geratec really does an incredible job and I am excited to follow the company in years to come. I can only imagine that in a few years time Ekuphumleni will be a prime example of how you can do a lot of good with few resources, a lot of heart, and respect for the elderly.

I hate to end this post so abruptly especially since I have so much more to say buuuut I am doing a safari with my mom at the moment and it’s about time for a game drive. With any luck, I can post again tomorrow.

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This is Africa (TIA): My First Steps and Impressions of South Africa

Over the past couple of years, I have been fortunate enough to travel to many foreign countries and experience the sights, smells, and cultures of new lands. One could think that because of the dwindling amount of free pages in my passport that I am travel savvy. It’s a reasonable thought but one that I continuously test by arriving for flights a day early, getting lost and missing intended busses, and most recently, upsetting the feared customs officers.

I’ve been in South Africa now for three weeks or so and much has already happened but I’ll start with my very first steps on the continent. I had been traveling for 30+ hours already thanks to a 15 hour layover in Doha, Qatar (sleeping in airport chairs is not the most comfortable experience) and a delayed flight from Johannesburg to Cape Town. Simply put: I was exhausted. And, I looked it. I arrived to South Africa with all sorts of excitement and anxiety but the moment the plane hit the ground all I could think about was my coming hostel dorm room bed. The customs officers had different plans for me though. And, I had about three more hours until I would finally reach my bed.

Turns out, South Africa has this policy (one that is NOT widely publicized) that a person arriving in South Africa must have a return ticket. My style of travel thus far has been very flexible and I go where the contacts develop. So, because of that reason, and my impending attendance at the first annual conference on Aging on the continent, I was not exactly certain when I would leave South Africa and to which country I would go. This explanation was not suitable and I was told I must return to Doha. I won’t deny that I’m a sensitive person–tears happen–but not usually in public and usually not in moments of crisis. But here I was crying in Cape Town’s airport because someone just told me I had to get back onto a plane. It’s reasonable to think that because I have been traveling so much that I do not mind flying. Fun fact: I dread flying. I get anxious. My palms start to sweat. And, if there is any turbulence lord help the person next to me because I am going to subconsciously reach out for their hand. This last flight had particularly bad turbulence. And, I was NOT getting back on a flight.

Thankfully, a man took pity on me and my newly formed South African pals were looking out for me. We convinced the customs officer to allow me to purchase a return ticket on site. This was stressful, a man was hovering over me telling me to hurry, and I was certain my shuttle bus to the hostel had left already. I bought a partially refundable ticket to Istanbul for about two weeks earlier than I should have. Oh well. You win some, you lose some. And, I was about to spend a few weeks in a city that has scenery like this:

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It’s safe to say that my first impression of South Africa was not the best but since then I have been genuinely impressed and awed by the kindness of people, the cost of a nice glass of wine, and the scenery. That’s not to say that South Africa doesn’t have it’s problems but for today, I’m going to focus on the good things. I am well behind in my blog posts–which in large part can be attributed to my lack of wireless internet and my living at an old convent for the last two weeks.

I have done a number of fantastic things in my weeks in South Africa related to Alzheimer’s and dementia and ageing. My passion for this is definitely being fueled and I can’t get enough. In posts to come, I’ll talk about my experience at the IAGG First African Regional Conference on Aging and Gerontology that took place at this venue:

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And then my resulting experience with Margie from Geratec, a leading and innovative Aging care company, exploring different Alzheimer’s and elderly care facilities in Cape Town paired with my experiences with Jill from Alzheimer’s South Africa exploring a different care facility in the Cape Town region. And eventually, I’ll touch on my experience at St. Joseph’s Home in Port Elizabeth. Before those posts though, I’mma post some pictures and brief explanations of some fun tourist things I did in the Cape Town region.

On the last day of the conference, a woman named Jo Anne (who I met at the opening ceremony while stuffing my face with deserts and chasing them down with deserts) brought me to her friend Margie (the same woman mentioned above) for some tea. We had a great tea and cake at this place:

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Margie then took over and brought us to some of the most awe-inspiring places I have ever seen. We started at Hout Bay beach where Jo and I played with kelp and were pushed into a beach run by the wind:

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We then began a drive up Chapman’s Peak–voted as one of the most beautiful drives internationally–and oh my god, was it ever. I am STILL (three weeks later) in disbelief. We drove with the mountains to the left and the ocean to the right and the sun was doing incredible things to all of the different colors and flowers.

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The adventures of the day could have stopped right then and it would have still been one of the best days of my trip thus far but Margie had different plans for us and we carried on to Boulder’s Beach–a place where PENGUINS hang out! I think you can actually go swimming with the penguins when the weather is right.

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We finished the day getting a lovely dinner on the waterfront. It really was an exceptional day and I am so grateful to Margie and Jo for including me in their day–and keeping me in their thoughts and plans afterwards. I’ll be writing more about both of them in coming posts.

I then had a week in Cape Town before I needed to move on to Port Elizabeth. My week quickly became full of meetings, site visits, and morning coffees. One of my tourist priorities for South Africa was to see the whales. And, I needed to get down to Hermanus–just a few hours away from Cape Town–to see the whales before I left for PE. So that Monday, I went on a whale hunt! AND, I found a whole bunch and even saw one breaching. The pictures here don’t really capture it but you can see some of the whales dotting the water waving hello.

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It was an unforgettable day. And, I would love to go whale searching in the future on a kayak.

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Alright, I’ve got to run and I just want to get this one out there! So, I’ll abruptly end here!

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Forgotten Post

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.

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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.

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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.

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Adventures in Berlin and Salzburg

Yo-a-hey, dear readers! I’m posting from the beautiful almost fairytale-like city of Salzburg. The city is just at the foot of the Alps and in every direction I look I am taken aback by the stunning views. The fact that it is now Autumn and the leaves are starting to change colors only adds to experience. Before I jump too far into my experiences in Salzburg though, I want to cover my too short of a visit to Berlin.

I wasn’t originally planning to visit Berlin (or Salzburg for that matter) but my meetings in Hamburg ended and I had some time to kill before the Alzheimer’s Europe Conference in Vienna (which will hereby be referred to as: the most expensive conference). I’d heard great things about the city of Berlin but I wasn’t quite prepared for how quickly–and how hard–I fell for it. It’s a city that is full to the brim with history (a very dark history yes but one that they address head on) and yet has such a presence to it that’s hard to capture in words or pictures. I heard one person describe Berlin as having the energy of New York in the 80′s. I don’t really know what New York was like in the 80′s but if it’s anything like Berlin is now, I’m jealous of everyone who lived there.

One of my general rules for myself on this trip is: if I can walk it, I walk it. Meaning, I take as little public transportation as possible. In Berlin, I think this was one of the best calls I could have made. It seemed like every street had some story to it, some memorial, or some really cozy looking cafes. On one day, I set out to get the the Brandenburg Gate and found segments of the Berlin Wall, Checkpoint Charlie, and a stunningly beautiful city park called the Tiergarten.

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The Tiergarten used to be hunting grounds for the Prussians but now it is a very large park in the heart of the city. I spent hours in the park walking around and getting lost. I didn’t even mind that at one point it started to pour. There really was no way to capture the beauty and expansive nature of this park. And, the best picture could have come from the structure in the last picture. It’s located near the end of the park and you can climb all the way to the top. I got to the top but once I did I was terrified. I didn’t trust myself to take a picture and not drop the camera down to a certain death. Suffice it to say though that it was beautiful. And, I highly recommend if anyone ever goes to Berlin that they picnic in the park.

Berlin is world renowned for its Philharmonic Orchestra and the next day I set out to attend a weekly free lunch concert. And dear, oh my, it was wonderful! I would add a video to this blog but it would cost me 60 bucks. Sooooo, here’s a picture instead:

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After the concert, I set out to skype with Olivia before visiting the Memorial for the Murdered Jews of Europe and then going to another park to hike and potentially swim. I don’t know why I thought I would be able to do anything of substance after visiting the memorial…or that the visit would be a short one. I spent several hours in the memorial museum and eventually was one of the last still inside. The memorial itself looks like this:

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and the memorial is also located in the heart of the city. A constant reminder of the nation’s dark history.

Directly across from the Memorial for the Murdered Jews of Europe in Tiergarten Park there was a memorial for the persecuted and murdered homosexuals of Europe. This memorial was small yet packed a pretty big punch. There was a large block and at one spot you could peer into the block. Inside, a film of lesbian and gay couples kissing, laughing, holding hands played, etc while onlookers peered over their shoulders or directed their children away. It wasn’t until 2008 or 2009 that this memorial was erected and I think that says a lot. I don’t want to turn this into a political platform though so suffice it say, it was an emotionally exhausting day. And, I didn’t make it to the park. I did make it to a very good German restaurant though. And, I definitely ate my emotions.

My next and last day in Berlin, I walked to the German Parliament for a tour of their dome. On my way to learn about Germany’s present, I stumbled upon a museum dedicated to Nazi era terror. As I walked to the Parliament, I was digesting the disturbing images and facts. It should be noted that these aren’t facts or images that I haven’t seen before but that there is just something about being in a place where grave human rights atrocities and terror tactics were employed that makes everything seem much more real. Anyways, I was in the middle of some depressing thought when I saw this:

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and walked around in this:

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with these kind of views:

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directly above a session of Parliament (I think)! And that’s what I mean by Berlin being a city full of history but also having a distinct presence. The building is sustainably designed, overlooks the Tiergarten, the Brandenburg gate, and the Memorial for the Murdered Jews of Europe. And it was so cool. AND FREE.

Anyways, my time came to leave Buurlin for Salzburg via an overnight train. I thought I was going first class for a rate cheaper than second. But there was this really big attendant bully that wouldn’t let me go first class and was yelling at me (all in German). We arrived two hours late to Munich and I missed my connecting train. Which translates into me getting 50% of my ticket cost, if not more reimbursed! Yahoooo!

I went to Salzburg for a number of reasons but one of those was so that I could go hiking around the Alps in the Autumn. My hostel wasn’t all that keen on helping me get to places cheaply but could offer me a 45 euro four hour group trip to the top of a mountain. And, that just didn’t appeal to me. So, I was walking around this beautiful city feeling kind of mad at myself: Why hadn’t I done more research before? Etc, when I met these two women one from Salzburg and one from Mexico while overlooking this:

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and they invited me to join them on their trip to the Lake District the following day. Lilo and Alexandra are two of the warmest, kindest women I have ever met. They have been friends for over 30 years and frequently visit one another in their respective countries and regions. Anyways, we didn’t end up leaving until 2 p.m. because Lilo had to run some errands and unfortunately right at three p.m. it started to rain. I still saw some beautiful scenery though and ate some delicious cake with some peppermint tea while talking about animals, politics, and how I need to get to Mexico.

20121001-210815.jpg (this is the Red Bull Headquarters…at the foot of the alps and in the Lake District. Not a bad place to work, not bad at all.

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Mozart joined us for tea and cake. He was a little too serious looking for us though. Anyways, if the “Drug War” in Mexico could quickly end so I could head to Mexico after South Africa and stay with Alexandra in her house very near to the ocean with seven dogs and some cats, that would be great. She even told me that I could bring a friend. I hope that I am as warm and interesting as these women when I am their age. In the mean time, I’m just going to work to pay their good deeds forward. And pray that the travel advisory ends.

When I returned from my visit with Lilo and Alexandra, I frantically started looking for my misplaced wallet all the while trying to carry out a conversation with a fairly attractive roommate. I eventually threw my hands up in desperation and said something like, “I’m sorry, I’m not trying to be rude but I don’t think I can concentrate on this conversation until I find my wallet.” Fortunately, the front desk had it–and everything was still in it. OOPS. To celebrate, I went to the Augustine Brewery with my new roommate and had a beer. And, that was pretty cool. We left the Brewery (after one beer on my end) to find another drinking hole and on the way I was hit pretty hard by a parking pole (like the ones that are designed to prevent cars from leaving without paying and open and close) on the head. I think I’m suffering from the effects of a minor concussion. You win some you lose some? Anyways, walked on and ended up at another local brewery (where I had eaten the night prior). It was a great brewery–the food and beer were great and the people friendly. My only complaint, however, was that the brewery’s menu featured photos like this:

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The food, drink, and atmosphere were great on their own. I don’t think they really needed a picture of a woman holding her breasts to sell the special of the day. But hey, that’s just me.

On my last day in Salzburg, I met up with an old pal from Hendrix who is currently on her studying (but more like living) abroad experience in the region. And, Florence (said pal) took me to some pretty damn beautiful places while driving in the smallest car I have ever been in. Florence, if you’re reading this, thank you so much for such a perfect last day in the region.

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On both of my days exploring the region around Salzburg, the weather was less than perfect. And, I still was blown away by the scenery. I couldn’t even see half of it. I think I’ll need to come back here some day and do it all again.

I am now on my way to Vienna–the location of the Most Expensive Conference–and will be in the city for several days to make sure my suit is pressed, pay a visit to a local doctor, explore, and potentially go on a bike ride to a wine region just outside the city. Stories to come soon! Lastly, I promised there would be more pictures in the most and I may have gone a little overkill with them. Sorry I’m not sorry about it?

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A Post for the Day After World Alzheimer’s Day

A lot has happened in the last couple of weeks since my last post. I left Ireland, traveled to Belgium, and now have been in Germany for the past week. For those of you who don’t know, my original plan did not involve my spending much (if any) time in Belgium or Germany. Great opportunities arose, however, and I changed my plans up a bit.

When I last posted, I was gearing up to go to a city vineyard. I liked the city vineyard so much that I went back a second time. It’s not often that you see a living vineyard in the heart of a city. And, the vineyard attracted the attention of numerous journalist, news agencies, and local dubliners. The fact that it was free AND that the staff periodically gave out freebies like a comfortable picnic blanket (which I’m using pretty frequently) made it that much better. These pictures don’t really do it justice buuut it’s the best I’ve got.

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My last days in Dublin were filled to the brim with exploring, live music sessions, and great encounters with strangers. I loved my time on the island and have a feeling that I’ll return to it again some day. Until then, I’ve got lots more exploring to do.

A few weeks before my departure from the United States, I received word that I could attend an all expense paid conference in Brussels on aging in the European Union. So, without quite understanding why the European Commission was willing to fund my attendance, I boarded a Ryanair flight for Brussels. And, my every expectation was far, far surpassed. I was staying at a luxury hotel in the heart of the European Quarter in a deluxe suite with free 25 euro breakfasts.

I would have taken pictures of this but I already felt like I had genuinely tricked someone into letting me come. Here I was with my large backpacking backpack, an unironed suit, and a sixty dollar a day maximum budget standing next to some high rollers. My hotel room, for example, cost at least 250 USD per night. That’s more than I spend in hostels for two weeks.

After some concerns about attending a conference on aging with a wrinkled suit, I found an eco friendly dry cleaner and had the professional outfit set to go for the morning. Before that though, I explored around the city and stumbled across a great little Italian restaurant where no one spoke English, the owner gave me colored pencils and paper to draw with (and then kept my drawing for a collection), and a few glasses of free wine.

Belgium is world famous for it’s chocolates, beers, waffles, and mussels. And, after spending a week in the country, I completely understand why. I could spend a lifetime there. My budget and my waistline told me a week was about enough, though.

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I felt like I needed to eat Mussels while in Belgium and so I ordered some at a restaurant in Antwerp. Apparently, eating two pounds of mussels per sitting is normal in Belgium. Challenge accepted!

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SUCCESS.

Brussels also has a thing for peeing statues. I’m not quite sure why.

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and, tourist photo!!

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Anyways, back to the conference. The conference was funded by the European Commission and essentially was an overview of different aging initiatives taken on by the European Member States over the last several years. It was, for the most part, an interesting conference. The single best part about the conference itself, however, was the fact that I sat next to a Dr. Hanneli Dohner from Hamburg, Germany. Hanneli is the head of Eurocarers alliance, a caregiving organization in Germany, and longtime but recently retired professor of social medicine and public health. And, for some reason, she wanted to make a “program” for me to visit Hamburg. I honestly feel like I won the Alzheimer’s and dementia/caregivers research jackpot.

Within a day, Hanneli had several meetings lined up for me and before I knew it my entire week in Hamburg was full of meetings, site visits, and conferences. And, I had my final meeting in Hamburg this morning. I can’t believe my good fortune that I spent the week of World Alzheimer’s Day in the country where it was all discovered (Alois Alzheimer’s was a German man). There is a lot to say about this week and considering the fact that half of my meetings were conducted in German, I learned a lot.

One of the key ideas that made its way into every conversation was this German idea of “solidarity.” The German government and society, for the most part, acknowledges that there is income inequality throughout the country. It is generally accepted, however, that it is for the betterment of the entire country to approach issues like healthcare with little regard to that inequality. 90% of Germans belong to the National Health Care system and only a (relatively) few people slip through the health care cracks. On several occasions, I heard the point stressed that “solidarity” does not mean “sympathy.” The idea is that if you have a healthy society with all of their basic needs met it is better for the overall status of the country.

I also visited a number of care facilities in Hamburg. I didn’t feel right taking photos of the facilities but imagine the typical nursing care facility in the United States and these are pretty much the opposite. The rooms were bright and airy, the patients (for the most part) smiling and laughing, and the air smelled fresh. The manager (and designer) of two day care facilities–that tend to around 15 to 20 Alzheimer’s or dementia victims and 15 “regular” patients per day–explained that the most important thing for him was to make sure that his facilities provided a venue for people to have fun, to feel comfortable, and to continue living.

I also visited another facility this morning called the Living Communities Project. I’ll be honest, the entire meeting was in German and I understood very little. What I did understand though, is that the community is designed to keep relatives involved with the care of their loved ones suffering from Alzheimer’s and dementia. Every month, the relatives of all of the patients get together to discuss care tactics, day trips and outings, food, etc. Relatives are made stakeholders and are given the ability to influence the day to day life of their loved one within the home. And, relatives are expected to help care for their loved ones. One of the major ideas of the facility was that you don’t just “leave” your loved ones in the homes. The facilities, again, were bright and welcoming. It was a really inspiring model and I’d like to someday bring parts of it back to the States.

I’ll leave you with a video of an Alzheimer’s and dementia group singing. The video was taken at a caregiving event in Hamburg. And, the idea of the group is to keep victims moving as much as possible..and to have a nice venue for both victims and caregivers alike to come together. EEK. NEVERMIND. It would cost me 60 USD to upload a video to this thing. It was a very moving performance though.

I apologize for the lack of photos…I’ve been in lots of meetings and a bit of rain. Next time will be better. Here are a few from Hamburg:

20120922-181953.jpg (this is a booth for the caregivers organization that Hanneli runs)

20120922-183159.jpg There are lots and lots of canals in Hamburg.

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Goodbye, Ireland!

It turns out I’m not very good at updating this thing in a prompt manner. Over a month ago, I met with some of the leading Irish Alzheimer’s and dementia researchers and advocates in Dublin. There wasn’t anything particularly groundbreaking about those meetings but I left each one feeling empowered and with a building sense of hope. The statistics are hard to cope with: over 40 million people are suffering from Alzheimer’s disease and dementia worldwide. Due to a variety of factors, that number is expected to dramatically increase over the coming decades–and in an era of economic uncertainty the resources needed to humanely and effectively address the growing epidemic are hard to come across. Despite this reality, and perhaps even partially because of this reality, Alzheimer’s disease and dementia advocates are very passionate about and dedicated to their work. And yesterday, I attended a celebratory event to commerate the efforts of those same leaders to develop a National Dementia Strategy.

It’s hard to learn about the painful realities associated with Alzheimer’s disease and dementia and know that at the moment, I’m not doing much–if anything–to help the cause. Pair that understanding with the confused looks from fellow travelers when you explain that “no really, there aren’t many strings attached to this fellowship. I’m really just doing this for me” and you end up asking yourself some pretty tough questions. The hardest and arguably most important question to answer is: Am I worth the investment? I say hardest not because I’m struggling with some self-confidence issue. Rather because when you’re faced with the fact that on average dementia care costs 22,000 euro annually per person and you know that your fellowship money could help that family carer and victim you just met it’s difficult not to ask the question.

I knew within seconds of the first meeting that working with Alzheimer’s and dementia care/advocacy was the “right” thing for me. Over the past month and a half, I can hardly count the moments when I’ve been overcome with an overwhelming sense of clarity: I want to dedicate my life to working with Alzheimer’s disease and dementia. And [one of the] really incredible aspects of the fellowship is that it gives me time to create my own opinions about the disease and current treatment plans and then to develop alternative ways forward. I feel like I’m constantly in brainstorming mode and I never leave the hostel without my journal in hand.

One of the key notions within the Irish Alzheimer’s disease and dementia network is the idea of reclaiming dementia. At present, Alzheimer’s disease and dementia are widely misunderstood, stigmatized against, and underfunded conditions. These factors often translate into Alzheimer’s and dementia patients being somehow “locked” away (either inside of their family homes or nursing facilities) and to caregivers not receiving the resources and respect necessary to effectively care for loved ones suffering from Alzheimer’s or dementia. One idea behind “reclaiming” dementia is that while receiving a diagnosis of Alzheimer’s disease or dementia is likely very difficult for the patient and their loved ones, life doesn’t end at the diagnosis. And that if we could effectively allocate funds and provide adequate resources to caregivers, support networks, etc the patient, family, and community would be much better served.

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Since the last time I posted, I’ve been to the Aran Islands, Galway, the coast of Northern Ireland, Belfast, and back to Dublin. And, in each place, I’ve done a lot of walking. Here are some of the places I’ve stayed in/walked around:

20120906-124958.jpg (the view from my B&B on Inis Oirr of the Aran Islands–the Cliffs of Moher are in the background)

20120906-125105.jpg (my $18 a night beachfront Victorian Hostel in Downhill, Northern Ireland.)

20120906-125307.jpg (the view from my hostel. I went swimming in those waters. And it was cold. Very cold.)

20120906-125410.jpg (I had to cross a rope bridge more that was 100 ft above ground to get to this little Island. Very beautiful.)

I arrived back in Dublin on Monday for my last two official Alzheimer’s and dementia events in Ireland. And, am staying in a great hostel right across the street from Trinity College. On my first night, I met a guy from the states who flew to Ireland for the Notre Dame v. Navy game. I don’t get homesick too often (knock on wood) but as we started to talk about college football and Missouri’s opening game in the SEC this weekend against Georgia, I wanted nothing more than to lay on the couch in St. Louis and watch the game with my family and Ellababy this weekend. Here we go college football!! Anyways, on Tuesday I went to visit a respite and care facility in Blackrock. And, despite the fact that the journey to the facility was literally the trip from hell (everything that could have gone wrong, went wrong) the actual meeting and tour of the facility went very well. They really make an effort to make the facility as warm and “home-like” as possible. Then Wednesday, I went to the event mentioned above at the Chester Beatty Library (one of the most prestigious museums in Europe). After the event, I met my brother’s fiance’s dad and step-mom for tea, pints, and dinner. And, that was very, very nice!

I’m on to Brussels on Sunday for a conference organized by the European Commission on Active Aging. I’m excited about the conference for a variety of reasons but not least because the conference is paying for everything! Free flight! Free hotel room! Free food! Free Conference! and I will have my own room for two nights. I enjoy staying in hostels but there is something wearing about constantly sharing all of your space with at least ten other people. I’m looking forward to having a couple of nights of privacy.

It is beautiful outside at the moment (there literally is not a cloud in the sky) and a traveling vineyard in the city center is calling my name. Until the next post!

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