Purpose of Research

In this first blog post I will address aspects of two parts of my project; namely, what they are, how they are connected, why they are uniquely important to the public, and the process by which I intend to complete them. For the first part of my project, I intend to research the mechanisms of Alzheimer’s disease by reading the available literature. My goal in doing this is to synthesize the information I find into a coherent narrative about the disease that is targeted at audiences with little background in science. With this information, I intend to create a user-friendly website that contains this information, videos that I will make to visually articulate science papers, and a weekly updated blog on recently published articles on a variety of topics in Alzheimer’s and neurodegeneration research. For the second part of my project, I intend to investigate local and national programming used in memory care units around the United States. I want to find the programs that work well and engage people affected by dementia, contributing to quality palliative care initiatives. I intend to tell the stories of these programs in a book, written for the benefit of those who have Alzheimer’s or are caring for someone with Alzheimer’s disease. A shorter version of the information I gather during this part of the project will also be made available on the website along with contact information for the programs.

These two initiatives, while they involve different processes and means of data collection, are rooted together in the same fundamental concept that underlies this entire project. This concept – that all members of the public deserve to have access to scientific and medical information in an understandable context – is one that I value highly.  Current sources for science on Alzheimer’s disease are insufficient. They either are too simplistic, giving the impression that scientists know very little about the disease, or they are targeted towards an academic audience and are incoherent to the average person.  As for programming, there is very little information on what families can do to provide palliative care for a loved one with dementia. My goal is not to offer any kind of medical advice, but rather to inform people through storytelling that there are effective ways to give someone with Alzheimer’s disease a connection to the world around them – ways to give them the means to feel socially imbedded in a community.

Dementia is particularly challenging for disadvantaged groups of people in the general population. For those who rely on Medicare and Medicaid immediately going into managing a disease like Alzheimer’s, there are very few options that address the importance of palliative care. Palliative care, when given alongside medicine and standard health procedures, can immensely help mitigate pain and suffering. It can reduce emergency room visits, thereby helping to prevent dangerous infections often contracted at hospitals. There are ways to provide palliative care without spending a lot of money. The personalized music program, Music & Memory, is an example of this. I want to make these programs readily accessible to all peoples diagnosed with neurodegenerative diseases. One step in this process, is raising awareness and researching which programs are most effective – exactly what my project will allow me to do.

Another reason why this project is unique and important to the community of individuals with dementia is that it addresses the stigma associated with being diagnosed with dementia or Alzheimer’s. Alzheimer’s is frequently referred to as the disease which “robs people of their identities.” While Alzheimer’s is terrible, the real tragedy is how the healthcare system treats people who have this disease. There are not enough trained individuals to handle the difficulty of caring for someone with severe dementia. The task of finding quality care often falls on stressed family members. Hiring a nurse or living in an assisted living facility is ridiculously expensive, costing thousands of dollars per month. The demand for such living is high, and there are not always spaces available. Staff are often stressed and unable to provide individualized care. No matter how good a facility is, the strain of not having enough geriatricians and trained staff is almost always present. While I cannot necessarily change the dynamics of the healthcare system, I can advocate for those affected by neurodegeneration by raising awareness of low-cost programming, and making research available to the public so that people can begin to understand the progress scientists have made in understanding the disease. This project allows me to research ways by which we can begin augmenting memory care so that people diagnosed with neurodegeneration can live more positively with their disease, and can maintain healthy relationships with their families, loved ones, and caregivers.