Showing 1 - 10 of 205 annotations tagged with the keyword "Dementia"

Summary:

Physician-Assisted Suicide and Euthanasia, edited by Shelton Rubenfeld and Daniel Sulmasy, is an unusual collection of scholarly essays in that it combines essays about Nazi euthanasia with others that deal with contemporary PAD (Physician Aid in Dying) and questions whether there might be a relationship between the two. This perspective is understandable, given the book’s origin. The Center for Medicine after the Holocaust, an organization with the mission “to challenge doctors, nurses, and bioethicists to personally confront the medical ethics of the Holocaust and to apply that knowledge to contemporary practice and research,” invited a group of North American and Israeli palliative care specialists and medical ethicists in 2018 to visit German sites associated with Third Reich euthanasia programs.  The intensive discussions that followed resulted in this provocative collection of papers.  

Dr. Timothy Quill is among the writers supporting the moral probity and legalization of PAD, while Drs. Diane Meier and Daniel Sulmasy present strong arguments against the practice.

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Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The author’s beloved Jewish mother is a great storyteller. A favorite tale describes how her grandmother was shot dead while sitting on the family’s Winnipeg porch nursing her baby. An accomplished investigative journalist, author Hoffman assumes it is fiction but decides to investigate. He is astonished to discover that, indeed, his great-grandmother was murdered, although the details deviate slightly from the family tradition. 

Through official records, the Census, and newspaper accounts he pieces together the circumstances of her life and death and the frustrated search for her killer. In the process, he learns a great deal about his ancestors and the world of Jewish immigrants in early twentieth-century Canada. Eager to share his findings, he is confronted by his mother’s decline into dementia and the poignant difficulties of grasping and reshaping memories, both collective and individual. 

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Summary:

Sarah Leavitt’s graphic memoir, Tangles: A Story About Alzheimer’s, My Mother, and Me, narrates and vividly illustrates the pain and difficulty of caring for a loved one with Alzheimer’s disease. Leavitt’s memoir shares her family’s experiences nursing their mother, Midge Leavitt, for six years following her diagnosis at the early age of 52. “I created this book,” Leavitt explains, “to remember her as she was before she got sick, but also to remember her as she was during her illness, the ways in which she was transformed and the way in which parts of her endured” (Leavitt 1). The memoir’s spare, black-and-white panels trace her mother’s deterioration from the first, seemingly innocuous symptoms (such as misremembering conversations and forgetting to unplug an iron) to the debilitating and tragic manifestations of Alzheimer’s, such as confusion, behavioral changes, aphasia, and ultimately, the inability to recognize loved ones. As greatly painful as these experiences were for Leavitt, she singles out from the murk and monotony of caregiving moments that inspire laughter, introspection, and gratitude. Early one morning, Leavitt’s mother wakes her to admire a fresh, “glittering” snowfall (86). On another occasion, Leavitt illustrates a rainstorm. Instead of keeping dry, her mother wants to stand in the downpour: “So finally we let go of her. She stuck out her tongue to taste the rain” (78). For Leavitt, humor brings, if not understanding, comfort when the stifling presence of her mother’s suffering goes momentarily unfelt. Caregiving also stirs recollections about her mother’s personality. Leavitt remembers, for instance, her mother’s love of Granny Smith apples: “She ate the core and stem and everything, crunching loudly” (23). She remembers her mother’s love of nature, “. . . plants, worms, rocks, soil. She did not seem separate from it as most people did” (93). Her mother also adores the poetry of E. E. Cummings and Robert Frost and Aretha Franklin’s music. Leavitt does not allow suffering to efface her mother’s personality, providing a poignantly moving account of how caregiving shapes memory and deepens family love in unexpected ways.

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Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: History

Summary:

In a 1976 Archives of Neurology essay, the neurologist Robert Katzman successfully argued for relabeling “senility” as “Alzheimer’s disease.” He urged rejecting various forms of dementia and senility as common consequences of aging, and accepting them as a disease requiring all the attention any other important disease deserves. Now medicine and society had a problem—"The Problem of Dementia,” the famed physician Lewis Thomas called it in a 1981 essay published by the popular magazine Discover, and he noted that, suddenly, “a disease of the century” had arisen (p. 3).

Forty years on, Jason Karlawish thinks there is still a problem, but in keeping with Katzman’s call, he refers to “The Problem with Alzheimer’s.” Based on the history he covers and the experiences he shares in this book, nothing of much significance has occurred since “The Problem of Dementia” became the “The Problem of Alzheimer’s.”

Karlawish is a physician who cares for people with Alzheimer’s and a researcher delving into “issues at the intersections of care, ethics, and policy” (p. 5).  He draws on his experiences in this book, which he describes as “the story of how once upon a time, Alzheimer’s disease was a rare disease, and then it became common, and then it turned into a crisis.” Karlawish wants to answer why during the time between Thomas’ essay and the year 2010, “nothing really changed,” and how that could be the case in “the richest and most powerful nation.” (p. 6) He tells this story in four parts.

The first part concentrates on efforts clinicians and researchers were making following Thomas’ call to distinguish Alzheimer’s disease from normal aging, other dementia types (e.g., frontotemporal, Lewy body), and precursor syndromes (e.g., minimal cognitive impairment). They were looking for definitive clinical patterns, imaging studies, diagnostic tests, and pathologic markers for the disease. 

In the second part, Karlawish goes back in time to when Alois Alzheimer first found what are known today as “plaques” in the brain of a patient who had an early onset of severe, progressive dementia. He traces the attention this finding drew to eventual advances in imaging and biochemistry aimed at diagnosis. Karlawish also covers how a cascade of events over the decades following Alois Alzheimer’s finding disrupted the pursuit of a pathophysiological basis for dementia. These events included the rise and dominance of Freudian psychology; followed by two world wars; the cold war; the overshadowing of AIDS; Medicare political and funding constraints; tussles among patient advocacy groups; loss of asylums where care and research had coexisted; clinical failure of the first drug; and the continued debate over whether dementia is a consequence of aging or is a disease. 

Karlawish moves on in the third and fourth parts to cover what “we will have to learn to live with the disease so as to improve the lives of persons...to provide the care they need to live well at home...and repair the broken system” (p. 171). Success in his view requires integrated biological, psychological, and social components. He reports the progress on each of these three fronts: some failed approaches continue to fail (such as drugs targeting amyloid); some psychological interventions show promise (though at times causing moral tension); some of the social configurations engineered for Alzheimer’s patients, families, caregivers, and society have produced triumphs and some disasters. He has much to say about why and how this search must go on, but with some much-needed course corrections. 

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Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Cyril Wilkinson and his wife Kay make a pact. On Kay’s eightieth birthday, when Cyril is already eighty-one, they will commit suicide together. Cyril, a physician in the British National Health Service (NHS) secured a supply of secobarbital as the means to their end. It was 1991. They have planned well ahead; another twenty-nine years will pass before Kay’s eightieth in 2020. 

Motivating the pact was the death of Kay’s father after “a good four years of steady deterioration, followed by a solid ten of nothing but degradation” from dementia (p. 7). They had just arrived home from his funeral service, and were reflecting on what they had been through. At one point, Cyril says, “Your father frankly made me suicidal—or homicidal—or both. Half an hour in his presence passed like a mini ice age,” and then promises Kay, “I will do almost anything to keep the two of us from acceding to such a fate” (p. 12). But Kay is dubious. 

That’s what everyone says...Everyone looks at what happens to old people and vows that it will never happen to them...Somehow they’ll do something so their aging will proceed with dignity...Everyone thinks they have too much self-respect to allow a stranger to wash their private parts...Then it turns out that, lo and behold, they’re exactly like everyone else! And they fall apart like everyone else, and finish out their miserable end of their lives like everyone else. (pp. 12-13)
And so Kay dithers over the next few months whether to agree to the pact, but once her mother begins showing signs of dementia; “I’m all in,” she tells Cyril (p. 17).

Cyril and Kay proceed through the subsequent twenty-nine years, with Kay raising their three children, retiring, finding new work and passions; Cyril going on and on about politics, the NHS, old people; and both watching their remaining parents pass on, traveling to far-flung locations, becoming grandparents, aging. Then the day arrives; happy birthday, Kay? 

The novel structure is simple or complex depending on how a reader approaches it. The first chapter sets up the pact. The second chapter leads up to the day of reckoning and becomes the first story telling what became of the Wilkinsons’ plan. The next eleven chapters envision alternative scenarios unfolding from choices Cyril and Kay make before and on their pre-determined end date. Some scenarios stem from one or both of them not going through with their pact. Some scenarios involve recognizable and available options today, and some are wholly futuristic and unattainable. Some scenarios are happy, some are sad, all are unsettling. These chapters can read as independent stories offering different choices and endings. But they can also be read as interdependent and collectively building toward a point of view on the question: Should we stay or should we go?   
 

The interdependence and complexity of the chapters arise from the through lines among them. From the third chapter on, for example, the first few sentences of each chapter are taken verbatim or slightly modified from some part of a preceding chapter. Other blocks of text appear in one or more chapters. One through line even extends beyond the book to another of Shriver’s novels (So Much For That). Kay and Cyril exhibit the same personalities and preferences, and express the same general hopes and desires through all the chapters. Other through lines are shared events or recurring arguments and debates; however, not always with the same outcomes.

The four years preceding Kay’s eightieth birthday overlap both the decision of the United Kingdom (UK) to leave the European Union (“Brexit”) and the Coivd-19 pandemic. Thus, during the time Cyril and Kay are deciding whether they will actually leave or remain on Earth, the UK is deciding whether to leave or remain in the European Union, and while Cyril and Kay are seemingly willing to die rather than fight the ravages of old age, millions of people are willing to fight the ravages of Covid-19 rather than die. These juxtapositions pop up often giving the Wilkinsons’ decision added poignancy.


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The Father

Zeller, Florian

Last Updated: Apr-26-2021
Annotated by:
Teagarden, J. Russell

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

The basic plot of The Father mirrors the all-too-common trajectory people with dementia follow: first they deny any problems; then they progressively need more in-home assistance; and then they require institutionalization. This scenario, however, gets obscured when watching the film’s main character—the father—wrestle with quotidian activities and familiar faces. The viewers wrestle with him, and become just as confused and rattled. Florian Zeller, the screenwriter and director, admits he wants viewers feeling what people with dementia feel. He succeeds in the movie as he succeeded in the Broadway play version preceding it.

The father, Anthony, lived in his London flat with help from hired caregivers and his daughter, Anne, who lived nearby. After Anthony banished several caregivers on grounds they were unnecessary, Anne moves him into her flat, and when he’s too much for her there, she moves him to a nursing home. We’re never quite sure, though. Zeller makes the two flats and the nursing home look almost identical. He changes Anne’s story at different times: she’s still married after ten years; she’s been divorced for five years; she’s relocating to Paris with a lover; she was never relocating to Paris; she relocated to Paris. Anne appears as a different person on occasion and the husband she may or may never had appears as different people. Zeller overlays these confusing surroundings and events by jumping forward and backward in time, and repeating some scenes with slight variations. Eventually, Anthony says, “strange things are going on around us.” Viewers will feel the same, and that’s the point.

The movie ends as Anthony awakes in his nursing home room. Just as we are lured into thinking we have returned to the common dementia trajectory at its end, we see his nurse is the person who had appeared as Anne before, and his room looks like the bedrooms in both his own and Anne’s flats. We wonder.

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Elizabeth is Missing

Walsh, Aisling

Last Updated: Feb-16-2021
Annotated by:
Teagarden, J. Russell

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Maud’s dear friend Elizabeth is missing, suddenly. Maud’s dear older sister Sukey is long missing. And, Maud’s mind is missing more and more. These three facts and how they relate to one another form the matrix of this movie. Maud Horsham is an elderly widow living alone with help from a home health aide’s daily visits, and from an attentive, if occasionally resentful daughter and a loving teenage granddaughter. She is well into the inexorable decline dementia brings, but at a stage where the support in place and reminder notes she leaves around are enough to keep her functioning. 

On a routine visit to her friend Elizabeth, and while they dig in Elizabeth’s garden, Maud comes across the top of a compact that immediately takes her mind to a scene seventy years before when her sister Sukey was applying makeup with what looks to Maud as the same compact Sukey had in her hand. This flashback starts the story of Sukey’s unsolved disappearance as a young adult. A couple of days later, Maud and Elizabeth are to meet outside the Salvation Army store where they both once worked. Elizabeth never shows. 
 

Elizabeth is Maud’s only remaining friend, and Maud sets off to find her. Her search triggers many flashbacks and hallucinations from the time of Sukey’s earlier disappearance, which she then becomes determined to solve. Maud’s worsening dementia often frustrates her own efforts in these parallel missions and also causes family, friends, and officials to doubt her findings and assertions. The parallel stories each have twists, turns, and surprises all the while Maud’s dementia is progressing to where she can no longer live on her own. Nevertheless, Elizabeth is found, Sukey’s grave is found, but Maud’s mind is never to be found again. 

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Dr. Futurity

Dick, Philip

Last Updated: Jun-29-2020
Annotated by:
Brinker, Dustin

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Jim Parsons is a physician living in an alternate 2012, one equipped with technology mildly superior to our own. While on his way to work, his car is abducted from the road and thrown off the natural path of life as we know it, both physically and temporally. Parsons finds himself in the distant future, roughly three centuries from his own, in a monoethnic society of young beings that resulted after generations of war led by people of color against the white domination of the A.D. era. The true ideology of the society is revealed when Parsons saves the life of a political radical, a proponent of the re-outlawed women’s suffrage. As he is taken into custody and processed for the crime of preserving life, the leader of the society, Al Stenog, describes the societal fetishization of death resulting from government-controlled population limits. Natural birth has been outlawed, enforced via early sterilization of males and a strictly monitored, equivalent exchange of deaths and births. Genetic material is selected via a tribal selection process based upon quantifiable measures of beauty and intelligence, whereby the fertile matriarch of the dominant tribe becomes the Mother Superior from whom eggs are harvested. The eugenic ideology extends into one’s conception of self—those currently living believe themselves to be genetically inferior to the zygotes housed in the government’s central repository. As a result, the society is described as being an amalgamation of all races of color whose average age is 15.

Stenog exiles Parsons to Mars, but his transport is intercepted by the masterminds behind his time travel. This group, now the genetically dominant tribe, explains their motive—the revival of their ideological patriarch. He has been cryogenically preserved for 35 years following an arrow to the heart. Parsons manages to save his life, but the patriarch is shortly thereafter found dead, his heart once again pierced with an arrow. It is revealed that the tribe intends to systematically eradicate all European colonization efforts in history, intending to halt centuries of white oppression; the patriarch had been stabbed during his attempt to begin the tribe’s crusade with the elimination of Sir Francis Drake in 1579. Returning to that time, Parsons discovers two startling facts: Stenog had traveled back to replace Drake, implying that all colonizers were from the future, and Parsons was the true killer of the patriarch, albeit accidentally. Despite the ensuing fallout involving much time travel, Parsons is returned to his own time, spared from temporal exile by his future children spawned from the impregnation of the Mother Superior.

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Summary:

Elizabeth Siegel Watkins reports on the use of estrogen alone and in combination with progestin for women during menopause and after menopause from the 1890s until the book was published in 2007. She concentrates on the sixty years between 1942 and 2002. The event Watkins uses to mark 1942 as an important moment is the U.S. Food and Drug Administration (FDA) approval for the estrogen product Premarin as hormone replacement therapy (HRT) in women with menopause symptoms. The event she uses to mark 2002 is the release Women’s Health Initiative (WHI) findings that showed estrogen is not the “elixir of life” that many thought it was then.  

Watkins builds her story off the trajectory of estrogen use during this sixty-year period, which spanned two peaks followed by two crashes. The estrogens for HRT first crested in the early 1970s before its use dropped dramatically in 1975 on uterine cancer fears. Estrogen use began to rise in the early 1980s on regained confidence from combined use with progestin to reduce uterine cancer risk and from hopes that bone loss could be prevented and even reversed. This resurrection continued through the 1990s as estrogen use during and after menopause became “associated with reduced risk of colon cancer, prevention of tooth loss, lower incidence of osteoarthritis, increase in bone mass, reduced risk of Alzheimer’s disease, and lower rates of death from all causes” (p. 241). 
 

Based on surveys of prescribers and prescription data during this time, Watkins concludes that “physicians who saw menopausal women as patients were…enthusiastic prescribers of HRT” (p. 244). They remained enthusiastic, making Premarin the most prescribed pharmaceutical product through much of the 1990s and until 2002 when the WHI trial was stopped three years early because it showed that HRT failed to produce the expected benefits, and even worse.
Women who took the estrogen–progestin pills, as compared with those in the control group who took placebo pills, increased their risk of breast cancer by 26 percent (relative risk of 1.26), coronary heart disease by 29 percent (1.29), stroke by 41 percent (1.41), and pulmonary embolism (blood clot) by 213 percent (2.13). (p. 271)
The investigators advised clinicians based on these results, that HRT “should not be initiated or continued for the primary prevention of coronary heart disease” (p. 271). Watkins quotes an editorial from the Journal of the American Medical Association that went further in saying that the trial “provides an important health answer for generations of health postmenopausal women to come—do not use estrogen / progestin to prevent chronic disease” (p. 273). HRT prescriptions plummeted.  

These clinical inputs into the trajectory of estrogen are just the bare bones of estrogen history. Watkins fills in the story: 
The story of estrogen is woven from several strands: blind faith in the ability of science and technology to solve a broad range of health and social problems, social and cultural stigmatization of aging, shifting meanings and interpretations of femininity and female identity, and the pitfalls of medical hubris in the twentieth century. (p. 1)
Watkins weaves these strands into the story of estrogen, which she tells in a chronological fashion, often as the subjects of individual chapters. Some include: the implications of rising feminism; pharmaceutical company promotional activities; the roles of patient advocacy organizations; FDA requirements for patient information about prescription drugs; generational differences in views of menopause; evolving research methods and evidence standards; and cultural shifts and mainstream media influences. 

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Summary:

A dramatic prologue depicts Joan Kleinman screaming and hitting her husband Arthur in bed. She is ill with Alzheimer’s disease and does not, for that moment, recognize him. The following chapters provide a long flashback, beginning with Arthur’s family background, his youth as a tough street kid in Brooklyn, his medical education, and his marriage to Joan. We learn of their work in China, travels, and professional success. Arthur gradually realizes that the US health care system has become “a rapidly fragmenting and increasingly chaotic and dysfunctional non-system” (p. 126). Further, he sees a reductive focus on patients as mere biological entities, ignoring their personal, familial, and cultural natures. As a result, “Caregiving in medicine has gone from bad to worse.”

Joan suffers from an atypical kind of Alzheimer’s that increased over “that dismal ten years” (p. 156) with Arthur providing care to her, at cost to himself. There is no home health aide, no team approach with doctors, indeed no wider interest in her care other than the state of her diseased brain. Kleinman vividly describes the toll on her and on him.

Kleinman is aware of the privilege he has as a Harvard doctor, well known for his psychiatric work, his teaching and writing, and his wealth—in contrast to other patients and families. Some patients go bankrupt from medical bills.

Visits to nursing homes reveal a wide range of social conditions, contexts, and levels of care; the best have a sense of “moral care” (p. 200). Joan’s final days are hard. Supportive family members agree to her living will and healthcare proxy for morphine pain control only. She dies, apparently “at peace” (p. 232).

In the last pages Kleinman introduces the notion of “soul” as “essential human interactions” (p. 238). He discusses some of the limits of medicine (see paradoxes below) but also praises local efforts to improve humane care, such as team approaches, uses of narrative medicine, and medical/health humanities programs.  

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