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.
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:
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!