My Project

Project Proposal:

I am studying the history of Alzheimer’s Disease, because I want to find out how it used to be viewed, in order to better understand the historical experiences of those who potentially had this “ancient” disease.

Fictional and medical recordings of Alzheimer’s disease have been carefully recorded throughout, if not the beginning of, history, within multiple mediums.

Secondary sources will typically follow primary sources throughout this project, as they play together well in this study. For instance, I will showcase at least two works by William Utermohlen from distinct periods in his life. Though famous for much more than his Alzheimer’s portraits, his art gives a unique, personal outlook into the disease (Utermohlen, boicosfinearts.com). The progression of artwork throughout the disease can also mark many different symptoms. For a comprehensive look into how Alzheimer’s is known and viewed today, the NIH has educational resources geared towards the general public in text, audio, and video form (Alzheimer’s Disease Fact Sheet, nia.nih.gov)! I plan to explore a bit of the ideas surrounding amyloid plaques and tau tangles, along with the Braak and Braak stages, as these really are the core of Alzheimer’s specifically (Braak et al, 2006). Since these subtopics are so complex, I will only touch on the main aspects I think benefit the average viewer and to the best of my abilities.

This will be shown in comparison to how Alzheimer’s was viewed centuries, to even decades ago, in societal and medical aspects (Berchtold & Cotman, p.173-189); transparency is key to studying history and its effects, though I will include warnings before individuals can view some of this information because it can be incredibly sensitive. The oldest source however, will most likely be very familiar and easier to digest: Homer’s Odyssey. Towards the end of this Greek Epic, readers are introduced to a figure who is commonly referred to as one of the earliest literary examples of potential dementia (The Odyssey, 1999). A lesser known classical work: The Hammer of Witches [translated], gives similarly old-fashioned ideas of “senile individuals” and how they “should” be “treated” (Mackay, 2006). (I will include a separate warning about reading most excerpts from this piece, as though it is very informative of the past, many of the concepts are troubling.) Even translated records from philosophers show fear or exemplified the dread of an “inevitable” and “dying” mind if one lives to old age (Peabody, 1887). Shakespeare’s play: King Lear, similarly outlines an age-relevant cognitive decline in one of the main figures, and the conflicts surrounding the aftermath (King Lear, shakespeare.mit.edu).

Overall, I would say that it has been easier than I had anticipated to find both first and second hand historical sources for this project. I knew that there would be many literary and oral stories from numerous cultures and centuries that depict Alzheimer’s-like dementia; however there are a lot more mediums and “paths” than I was expecting. For instance, I hadn’t even thought of oral-stories or audio recordings as sources for this topic. The hardest part so far, has been finding much older, primary examples among what feels like oceans of secondary sources. I have become better at tweaking search-engine and data-base questions as well as reference scanning to find needed primary sources through this.

After beginning my research, I have decided that I must focus on specific mediums to showcase my argument. Though I will still touch on some visual sources, and I am looking for auditory examples currently, I will most likely use classically written sources the most. This is not because the latter is more important or useful than the former, but for the sake of time and manpower. There is simply more literary-based sources, both secondary and primary, while also being labeled more so within databases. Given a longer timeframe, this project could easily focus just as much time on each source “type.”

So far, I have learned a lot more about the “ancient disease” hypothesis of Alzheimer’s, and why it must have come about. I already had a good foundation in the basis of Alzheimer’s, and have studied how it can affect people on an individual basis (from individuals themselves and on a secondary level). I also have a decent foundation in how medicine and society has famously been cruel to individuals viewed as “other.” I wasn’t however, prepared for some of the truthful retellings and first-hand recordings, in the way of the malice experienced by those experiencing cognitive decline. In a strange way however, this research has given me even more hope for society’s future because of how far we have collectively come. Similarly, I’m excited to share with others what I have found, as I think it is a very important topic for every age group to learn about (though the level should be flexible with age). Though I still have a lot of research to complete, I think this could be an outline for a great resource.

Works Cited:

• “Alzheimer’s Disease Fact Sheet.” National Institute on Aging, https://www.nia.nih.gov/health/alzheimers-and-dementia/alzheimers-disease-fact-sheet. Accessed 11 Mar. 2024.
• Berchtold, N. C., & Cotman, C. W., Evolution in the Conceptualization of Dementia and Alzheimer’s Disease: Greco-Roman Period to the 1960’s. PubMed, 1998, DOI:10.1016/S0197-4580(98)00052-9.
• Braak, Heiko. Staging of Alzheimer Disease-Associated Neurofibrillary Pathology Using Paraffin Sections and Immunocytochemistry – PMC. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3906709/. Accessed 20 Feb. 2024.
• Cicero De Senectute. (On Old Age). translated with an Introduction and Notes by Andrew P. Peabody, Boston, Little, Brown, and Co., 1887.
• Homer. The Odyssey. Penguin Classics, 1999.
• Mackay, Christopher. The Hammer of Witches: A Complete Translation of the Malleus Maleficarum. Cambridge University Press, 2006.
• Shakespeare, William. King Lear. https://shakespeare.mit.edu/lear/full.html. Accessed 20 Feb. 2024.
• Utermohlen, William. Self-Portrait, Head I, pencil on paper, 2000, https://boicosfinearts.com/IMG/jpg/2000_utermohlen_head_i_aug_30_2000_pencil_on_paper_40.5_x_33_cm_jc_ballot-60_giclee_prints_md_-_copie.jpg
• Utermohlen, William. Self-Portrait, mixed media on paper, 1967, https://boicosfinearts.com/IMG/jpg/1967_utermohlen_-self_portrait–mixed_media_on_paper-_26.5_x_20_cm_coll_elan_hd_2-2.jpg

Zotero Link: https://www.zotero.org/abbif/library

Project Outline:

I have come to realize that since Alzheimer’s Disease has been experienced in vastly different ways between time periods, and of course between individuals, I do not believe there is a right or wrong way to present my project. However, since I want to examine the historical experiences of Alzheimer’s in comparison to the experiences of today, I have a strong idea of how to present my project in the most accessible and engaging way. I plan to present my thesis, that Alzheimer’s is a cross-cultural ancient disease, within nested pages containing different forms of archived media from different time periods and cultures. This way, pages will be divided by overarching topics so that diverse experiences, perspectives, and progress can be more easily seen and navigated between.

The first “page” or hub of the project will be a general overview about what Alzheimer’s is, the differences between late and early on-set, as well as why late-onset will be the focus of this project. (A general warning of sensitive content/topics will be described as well.) I believe that displaying pictures and audio will be a good addition to the written information so that viewers can interact with what they may learn. The pictures will mainly come from primary sources like the National Institute on Aging and specific experiments and studies. The audio files will mostly revolve around individuals who wish to share their personal experiences with Alzheimer’s. This central page will be where the audience can learn the purpose of my exhibit and get needed background knowledge to appreciate the items and meanings of individual ideas within this project. (Image below: Braak, Heiko.)

I also have a very thought-out idea of how I would like to organize the Community Outreach and Care exploration page. It took a lot of brainstorming to try and come up with a feasible way to set up this part of the project, simply because I don’t have much man-power or any funding. I cannot moderate a forum-type aspect, and since this is such a sensitive topic, moderation would be essential to public discussion (past the point of certain word-blockers). Similarly, I do not have the funds to upkeep a third-party, direct-support connection from my project’s audience to institutions. However, I do have the ability to compile a detailed repository of where, and how, individuals can receive emotional and social community-based care. I will be able to nest this overall topic based on if the individual is interested in social outlets( in-person or virtual), would like emotional/life-style change care, resources for further medical care, and how individuals can engage in/set up their own community outlets. The great thing about nesting this page based on care-type, is that within each “nest,” I can include resources and their links from as broad as the international level, to as specific as the local level. I think this is a really important aspect of the project to have, because one of the most common things I hear throughout my studies of AD, is that individuals typically feel quite isolated and cutoff from resources. Audio and visual items will also be a key aspect here, where examples of care-types and personal testimonies are included.

The nestled page of the History of Stigma surrounding Alzheimer’s Disease, will most likely be the most complex topic to create in my project, as it will need to be handled extremely delicately; stigma involving cognitive decline is still invasive in today’s society, however the farther back in history you go, the cases of stigma tend to become increasingly triggering and harsh. With that being said, I believe it is incredibly important to discuss past and current stigma not only to better improve society, but in order to fully grasp the history of a topic. I intend to showcase archives of classical literature (hopefully all entailing audio excerpts), medical texts/diagrams, audio, and photographic examples of stigma/harm. There will be a note that particularly grotesque and/or cruel examples have been left out of excerpts/provided images, so caution is advised for further, outside reading into specific sources. In examples that I do provide, I will include warning tags as well if I believe that some viewers may find the specific information too disturbing. Specifically, I will be including excerpts from the hammer of witches and medical journals before the 1950’s, which are important historical archives, though troubling. (Image Below: Psychological Ward, National Archives and Records Administration.)

Another nested page that will be added is the Historical Fears of Alzheimer’s Disease. I feel as if this page is very important because I feel as if it better explains the stigma around cognitive degeneration and common fears in growing older. I also find importance in this topic because I feel that speaking and learning deeper about a fear, is very healthy for the brain and body and can lessen them. I could not find one time period (within written history) where age-related cognitive decline, specifically around memory loss, was not a forefront concern; further, each culture I have examined so far has very similar depictions of age-related decline. I plan on displaying these historical, and still currently-relevant, fears through archived visual artworks, philosophical works, plays (excerpts), and novels (excerpts). I am currently still looking for archived oral stories and/or music, however examples of these have been harder, especially while maintaining Copyright laws. (Image below: King Lear and Cordelia, Benjamin Beale Evans.)

The final nesting page of my project will be the History of Self-Expression in Alzheimer’s Disease. I want this page to really highlight different mediums individuals have expressed themselves in, either about or during their Alzheimer’s diagnosis. There are numerous ways people have described their experiences, whether that be through visual art mediums, writing, or more action-based. I think this aspect highlights how each person keeps their individuality throughout their diagnosis, and this is a crucial thing to remember. Further, each person has a unique perspective and outlook to add to the discussion! I also think this would be a great area to have multiple different types of audio and/or video archives of individuals who either have Alzheimer’s or care for someone who does. I think I will nest this topic between creators/speakers with and without Alzheimer’s, because I don’t want to separate items by time period or medium. (Below Image: Head i, self-portrait by William Utermohlen.)

Final Project Link: https://aemfindley.com/final_project_omeka/exhibits/show/historyofad