I have been working at the Alzheimer’s Association for a couple of months now, and I have learned that work comes in waves. Some days, I am stuffing packets and calling churches from the second I get there to the second I leave, and other days, there is a lull in the office. As I mentioned in my first post, I am working at the Watertown office, which is the headquarters for all operations in Massachusetts and New Hampshire. This means that although the office is huge, it can feel really empty when people are out and about all over Massachusetts and New Hampshire.
A huge part of what I am doing this summer is outreach. During the past couple of months, I have really gotten a feel for what that word really means. In my case, working with the Hispanic/Latino population in the Boston area, it means calling churches to send informational packets and set up education programs, training volunteers in the community to educate their congregations about Alzheimer’s disease, and generally getting the word out about all of the resources offered by the Association.
I think the most valuable thing I have learned so far about outreach though, is that information alone is not enough; it really has to be put in cultural context. Most of the people I’ve been working with are either immigrants to the United States, or children of immigrants from Latin American countries. The way that they experience and understand disease can be different from my own. In the case of Alzheimer’s disease, many Latin American countries have considered the symptoms associated with Alzheimer’s (such as memory loss and confusion) to be a normal part of aging, and the medicalization of Alzheimer’s is just beginning to reach some parts of the world.
So we can’t just go into communities and say “hey, there’s something wrong with you!” which could incite fear and mistrust. There is already a pretty widespread aversion among the Latino/Hispanic community to drugs and other resources related to Alzheimer’s disease; which is understandable considering some people don’t even believe that AD is real. This is why cultural competency is so important in medicine. There are small steps that can be taken in terms of outreach to mediate this transition and make the process of diagnosis and treatment of symptoms much less stressful for everyone. These steps include things such as involving family members in decision-making, having professional translators trained in more than one dialect, and focusing outreach efforts on researching different customs and practices. Most importantly, we can find out what people want by actually asking them.
At this mid-way point in my internship, I think the most important lesson I have learned is this: outreach means more than just sitting at a table handing out packets – it means tailoring discussions to the communities you’re working with and learning from within the community; after all, they know their needs. I’m looking forward to continuing with this work and also continuing research for my upcoming thesis.
Leah Levine ’17