Journal of Gerontological Nursing

Feature Article 

If They Were Real: Lessons Learned from Literary Characters With Dementia

Meredith Wallace Kazer, PhD, APRN, FAAN; Karen Osborn, MFA

Abstract

Dementia and its side effects often leave individuals unable to tell their stories or experiences. Consequently, nurses must rely strictly on clinical observations as a basis for understanding dementia—an understanding that is necessary to provide the best possible care. Relying on clinical observations leads to challenges in fully understanding the experience of living with dementia. Fictional literature gives authors license to write about individuals with dementia rather than the clinical aspects of the disease, which provides insight into the patient and family experience and illustrates their needs. The current article explores dementia through an analysis of eight literary works and insights that may help expand the quality of geriatric nursing care. [Journal of Gerontological Nursing, 41(9), 42–47.]

Dr. Kazer is Dean and Professor, Fairfield University, Fairfield, Connecticut; and Ms. Osborn is Visiting Assistant Professor, Mount Holyoke College, South Hadley, Massachusetts.

The authors have declared no potential conflicts of interest, financial or otherwise.

Address correspondence to Meredith Wallace Kazer, PhD, APRN, FAAN, Dean and Professor, Fairfield University, 1073 North Benson Road, Fairfield, CT 06824; e-mail: mkazer@fairfield.edu.

Received: October 20, 2014
Accepted: April 22, 2015
Posted Online: May 28, 2015

Abstract

Dementia and its side effects often leave individuals unable to tell their stories or experiences. Consequently, nurses must rely strictly on clinical observations as a basis for understanding dementia—an understanding that is necessary to provide the best possible care. Relying on clinical observations leads to challenges in fully understanding the experience of living with dementia. Fictional literature gives authors license to write about individuals with dementia rather than the clinical aspects of the disease, which provides insight into the patient and family experience and illustrates their needs. The current article explores dementia through an analysis of eight literary works and insights that may help expand the quality of geriatric nursing care. [Journal of Gerontological Nursing, 41(9), 42–47.]

Dr. Kazer is Dean and Professor, Fairfield University, Fairfield, Connecticut; and Ms. Osborn is Visiting Assistant Professor, Mount Holyoke College, South Hadley, Massachusetts.

The authors have declared no potential conflicts of interest, financial or otherwise.

Address correspondence to Meredith Wallace Kazer, PhD, APRN, FAAN, Dean and Professor, Fairfield University, 1073 North Benson Road, Fairfield, CT 06824; e-mail: mkazer@fairfield.edu.

Received: October 20, 2014
Accepted: April 22, 2015
Posted Online: May 28, 2015

The World Health Organization (WHO; 2015) estimates that approximately 47.5 million individuals globally have dementia. An estimated 7.7 million new cases are reported each year (WHO, 2015). Symptoms of dementia, including memory loss and disorientation, make it difficult for individuals with dementia to tell their own stories. Consequently, what is known about the experience of living with dementia is primarily drawn from a clinical knowledge base. It is therefore challenging for caregivers to fully understand the experience of living with dementia—an understanding that is necessary to provide the most sensitive and humane care. The absence of personal knowledge leaves nurses vulnerable to stereotyping. If providers expect that the experience of dementia is the same for all patients and families, they may resort to managing symptoms instead of the patient.

The lack of scientific boundaries in fictional literature gives writers license to write not about dementia, but about individuals with dementia. Good literary portrayals of dementia can help nurses more clearly understand individuals’ experiences with dementia, resulting in more sensitive and insightful nursing care.

Literary characters give voice to their experiences with dementia when actual patients may be unable to do so. The current article explores dementia through an analysis of eight literary works. Experiences of dementia, ranging from early stage memory loss to later stage symptoms (e.g., physical deconditioning), provide the framework for this exploration. Two novels and one novella focus on the dementia experience: Still Alice (Genova, 2007), Dad (Wharton, 1981), and The Bear Came Over the Mountain (Munro, 2007), respectively. The Tragedy of King Lear (Shakespeare, 1608) is also examined for the cognitive decline of the main character. Four additional novels that have main characters with dementia are also included: The Arsonist (Miller, 2014), The Last First Day (Brown, 2013), One Hundred Years of Solitude (Marquez, 1970), and Life Drawing (Black, 2014).

Exploring Dementia

Memory Loss

Memory loss is prevalent among individuals with dementia and elicits an array of emotional responses, including frustration and surprise in the early stages. If Alice, in Still Alice (Genova, 2007), were able to tell a nurse about her frustration as she loses her memory, she might share the following: “I didn’t make the pudding on Christmas Eve because I couldn’t remember a single step of the recipe. It was just gone, and I’ve made that dessert from memory every year since I was a kid” (p. 80). In contrast, Fiona, in The Bear Came Over the Mountain (Munro, 1999), might tell a nurse that she felt shock, sorrow, and confusion as her dementia progressed, and her husband might share that her “surprise and apologies about all this seemed somehow like routine courtesy, not quite concealing a private amusement” (p. 8). Similarly, Sylvia, Alfie’s wife in The Arsonist (Miller, 2014), might tell a nurse (while awaiting the results of Alfie’s memory tests) that “she was aware of her own tension, of her wish that he do it, that he triumph, and of the quickly dawning shamefully gratified knowledge that he couldn’t. That she was right that it was real, his failure” (p. 143).

Nurses understand the need to provide comprehensive assessments for memory loss that may be an early sign of dementia. Medications for dementia are often more effective when administered in earlier stages and will be included in a plan of care. Nurses will also offer referrals to support groups as a resource for coping with memory loss. However, what nurses can learn from fictional characters is the need to acknowledge and validate the patient’s and family’s emotional experience with memory loss as the diagnosis and treatment plans are made. When recognized as essential, nurses can help patients with dementia verbalize the many and varied emotions associated with memory loss.

Language Challenges

Many individuals with dementia lose the ability to communicate or confuse language, which also results in frustration. Patients and caregivers, who often do not know if the loss is a result of normal aging or an early sign of dementia, may be hopeful for the former and fearful of the latter. If Alice could, she might tell a nurse how it felt to stand in front of a group of colleagues and how “she simply couldn’t find the word. She had a loose sense for what she wanted to say, but the word itself eluded her. Gone…. She replaced the still blocked word with a vague and inappropriate ‘thing,’” (Genova, 2007, pp. 10–11). In The Last First Day (Brown, 2013), Peter’s wife, Ruth, might explain to a nurse how he used to be “uncannily good with names when he was younger—amazing really…but more now he relied on old-fashioned endearments: Sport, Champ, Buster, Pal” (p. 18).

As with memory loss, nurses acknowledge language challenges as a symptom of dementia during the assessment process and implement interventions to delay progression of symptoms as appropriate. However, nurses who personally experience the inability to remember an individual’s name can take these interventions a step further. Based on a deeper understanding of experiences of language challenges, such as those of Alice and Peter, nurses may also empathize with the frustration and worry of patients with dementia. This empathy will help nurses provide hope and encouragement to patients with dementia and their families while setting realistic goals for care.

Disorientation

Disorientation often accompanies dementia and places the patient at risk for danger. When individuals with dementia become disoriented, they are likely to be afraid; patients fear the confusion and inability to make sense of their surroundings. In turn, caregivers fear for the safety of their loved ones. When Alfie gets lost while driving home from a party, his wife might explain to a nurse how frightened she was as she asked him, “Where are we?” and how further frightened she became when he replied, “I don’t…know,” sounding almost “bemused by this fact, as if it had occurred to him just this minute that perhaps this was strange, that perhaps he ought to know” (Miller, 2014, p. 27). In a different nursing assessment, Alice might describe the similar panic she felt when she became disoriented during a walk, explaining that “she wanted to continue walking but stood frozen instead. She didn’t know where she was…. She knew she was in Harvard Square, but she didn’t know which way was home” (Genova, 2007, p. 21).

However, King Lear seems to notice his own disorientation and demonstrates profound sorrow (Shakespeare, 1608). Presenting this attribute of dementia provides insight and voice to King Lear’s loss, which reveals the emotion behind disorientation and memory and language loss, toward a total loss of self:

Does any here know me? This is not Lear: Does Lear walk thus, speak thus? Where are his eyes? Either his notion weakens, his discerning’s are lethargized—Ha! Waking? ‘Tis not so. Who is it that can tell me who I am? (Act 1, Scene 4, Line 214)

Disorientation poses a safety risk, which nurses must consider during the assessment and care planning process. Nurses caring for patients with dementia can also make substantial contributions to care by acknowledging the risk for disorientation and the accompanying fear and sorrow. Helping implement interventions to ensure the safety of patients within protected and caring environments may become necessary. Fostering safety will reduce the risk of actions related to disorientation, as well as associated fear, anxiety, and panic.

Judgment Problems

Issues in making judgments are common among patients with dementia. Although these problems may be of concern to patients, they are also problematic for family members who worry that poor decision making will impact their loved ones and family. Multiple characters in the literature reviewed reveal judgment problems and family responses.

When Jack attempts to buy a burnt, gold-colored sofa from a thrift store and a fur coat, his family could describe this to a nurse as “crazy” and share their worry about the impacts of his poor decision making (Wharton, 1981). Similarly, the poor judgment King Lear exercises begins when he parcels out his kingdom and later rejects his favorite daughter and dedicated servant (Shakespeare, 1608). As this once arrogant, powerful ruler becomes increasingly ill and aware of his incompetence, he continues to make decisions that result in devastating consequences for his family—perhaps as a way to maintain the last of his control. His family is at once angry and confused by his decisions, and tragedy results.

Education about the progression of symptoms and development of plans of care to keep the patient and family safe are essential. These plans may include the need for advanced directives, powers of attorney, and supportive care situations. Nurses can also provide emotional support as families cope with errors in judgment made by their loved ones. Good care management will diminish opportunities for judgment problems that lead to safety risks. The plans and good care management, in addition to emotional support, will help patients and families cope with poor judgment.

Sensory and Perceptual Disturbances

Two of the most profound symptoms of dementia are sensory and perceptual disturbances, which may lead to unsafe situations in which the patient acts to engage or avoid the disturbance. Sensory and perceptual disturbances are worrisome among caregivers who witness the behavioral and emotional response without seeing what the patient sees, which is illustrated when Alice mistakes an area rug for a black hole (Genova, 2007). In describing this experience to a nurse, she might say, “The mail had just been delivered through the slot in the door, and it lay on top of the hole, somehow hovering there” (p. 207). Alice’s mounting panic as she seeks to understand the appearance of the black hole is a logical response to this frightening experience. Visual and perceptual disturbances are also seen in Dad (Wharton, 1981). If Jack’s son were to describe what these disturbances looked like to a nurse, he might say that his dad started “reaching out as if there are butterflies going across in front of him. He’s reaching up with his fingers, very gently, very delicately trying to catch something out of the air in front of him” (p. 137). Alfie also experiences visual and perceptual hallucinations as he is “irritated at his shadow” (Miller, 2014, p. 79).

When nurses learn of these disturbing symptoms, they can offer education, support, and referrals as necessary. In addition, encouragement provided by nurses can help patients and families cope with frightening sensory and perceptual experiences. Often these experiences are so overwhelming that nurses may follow up with a visit or phone call to provide continued education, care, and support as patients and families adjust.

Fluctuating Course of Dementia

A fluctuating course of dementia (i.e., when dementia symptoms are worse some days more than others) causes concern and frustration among patients and caregivers. In describing Jack’s fluctuation to a nurse, his son might say, “It seemed such a shame after he’d been doing so well to see him slipping back. Then every once in a while, he’d come around, almost be himself for a minute or a few seconds” (Wharton, 1981, p. 399). Fiona’s husband expresses his concern, asking, “You mean she really might not know who I am?” and the nurse replies, “She might not. Not today. Then tomorrow—you never know, do you? Things change back and forth all the time and there’s nothing you can do about it” (Munro, 2007, p. 29). In The Arsonist (Miller, 2014), a physician explains the variable course of dementia, noting patients will “have days when [they seem] better suddenly. Or even quick switches in and out in a short period of time” (p. 146). The emotional roller coaster that accompanies this fluctuating course tosses patients and their families from hope to despair, with little time to adjust. Nurses can provide education about the course of dementia while ensuring care plans are maintained even when the patient seems to not need a higher level of care. In addition, nurses can provide emotional support to family members coping with loss as they come to understand that they can no longer depend on knowing who their loved one will be at any given moment.

Wandering

Wandering is a frequent consequence of dementia that greatly worries patients and their families. In The Bear Came Over the Mountain (Munro, 2007), Fiona wanders out of the grocery store and is found blocks away. Her husband, Grant, who panicked when he noticed her missing, might describe this to a nurse, saying, “In a while, it hardly mattered what label was put on it. Fiona, who no longer went shopping alone, disappeared from the supermarket…. A policeman picked her up as she walked down the middle of the road, blocks away” (pp. 8–9). Individuals with dementia experience fear when they wander, especially when they find themselves alone and in unsafe situations. When Alfie wanders from home in the middle of the night, a town-wide search extends most of the next day until he is found late that evening buried in leaves, trying to keep warm (Miller, 2014). This scenario illustrates Alfie’s increasing defenselessness. Similarly, Jack disappears during the day while his son is napping (Wharton, 1981). Just before the police are called, he is found in a closet, having defecated on himself. The shame and humiliation of such an event are transparent in this scene.

If Fiona, Alfie, and Jack were brought into the emergency department after wandering, nurses would efficiently warm and clean them, as well as tend to their wounds, which would substantially contribute to the end of their shame and restore dignity. Nurses would also continually reassure them that they are safe and help their families find care situations or safety interventions to prevent further incidences of wandering.

Physical Changes of Dementia

It is the physical deterioration resulting from dementia that usually leads to death. For example, Fiona experiences muscle wasting and weight loss from lack of appetite, which her husband describes as “her muscles were deteriorating, and if she didn’t improve soon they would put her on a walker” (Munro, 2007, p. 52). Dad (Wharton, 1981) begins with Jack already having dementia and living with the physical consequences: “He’s somehow dead already; yellowish skin but not a wrinkle. He’s lost so much weight, then gained some of it back; now he’s skeleton thin again” (p. 4). Ursula’s death in One Hundred Years of Solitude (Marquez, 1970) is also described as the result of physical deterioration of dementia:

Little by little she was shrinking, turning into a fetus, becoming mummified in life to the point that in her last months she was a cherry raisin lost inside her nightgown and the arm that she always kept raised looked like the paw of a marimonda monkey. She was motionless for several days. (p. 315)

The physical failing is also described in Life Drawing (Black, 2014) when Augusta refers to her father as “barely filled with his dwindling, flickering starlight self” (p. 40). Incontinence of bowel and bladder often occurs as part of the physical deterioration associated with dementia, which is seen when Jack is found “soaked in his own urine” and smelling like “shit” (Wharton, 1981, pp. 122, 141). When he dies, the reasons are not specifically discussed, but it may be assumed that the cause was the dramatic course of his dementia with superimposed delirium and the resulting physical effects (Wharton, 1981). The physiological and functional changes of dementia put patients at high risk for a shortened life span (Alzheimer’s Society, 2015).

Nurses are well versed in providing for the physical care needs of older adults with dementia. From promoting good levels of nutrition and physical activity to the care of bowel and bladder incontinence, these interventions are part of standard care plans for dementia. The spouses and children of literary characters with dementia experienced heartbreak and remorse, adding a new dimension to understanding patient- and family-centered care. As a result, future care plans should include anticipatory and actual grief therapy for families of older adults with dementia.

Relocation

A frequent consequence of dementia is the need to alter environments to ensure safety, which is seen when Fiona realizes her own move to Meadowbrook is inevitable:

“You know what you’re going to have to do with me, don’t you? You’re going to have to put me in that place. Shallowlake?”

Grant said, “Meadowlake. We’re not at that stage yet.”

“Shallowlake, Shillylake,” she said, as if they were engaged in a playful competition. “Sillylake, Sillylake it is.”

So they made the twenty minute drive in January…. It was all he could do not to turn around and go home. (Munro, 2007, pp. 10-11)

To make this challenging situation more intense, Fiona and Grant are informed upon admission that Grant cannot visit for 30 days to allow time for Fiona to settle. When Grant returns, she doesn’t recognize him. This passage reveals the depth of despair that occurs when couples are separated for one to receive nursing care.

Families often seek institutional care as a last resort. Jack’s family attempts to make the home environment safe by safeguarding the house (e.g., moving furniture, putting harmful items out of reach) (Wharton, 1981). However, despite the family’s best efforts, Jack still ends up in the rest home.

Sam, a usually docile character, has two violent episodes in his assisted living environment (Black, 2014). His threatening behavior forces him onto a locked dementia unit and he rapidly declines in this new environment. His daughter’s frustration and sorrow that the decision was made based on isolated behavior changes is similar to the experience of others coping with changes in environment.

Nursing homes and care facilities have protocols to help make the necessary transitions to ensure the safety and physical health of patients. However, this care needs to extend to families. In addition, nurses must also continually examine the effect of treatment decisions on patients and their families, and take every opportunity to help families examine the impact of care and living environments on their loved one with dementia. Nurses also play an essential role in helping families understand end-of-life decisions made throughout the course of cognitive and physical declines of their loved ones.

Discussion

The nature of dementia (including memory and language problems and disorientation) challenges patients’ abilities to share their experiences. Alienation and isolation caused by a lack of understanding of the impact of dementia can be potentially devastating. The characters reviewed provide firsthand accounts of dementia that allow nurses to see how dementia affects the patient and their family (emotionally and physically).

The characters and their families had a variety of responses related to dementia. For example, Alice and Alfie are aware they had forgotten things and are frustrated and perplexed by the memory loss and disorientation. In response to these emotions, nurses may develop heightened sensitivity to patients’ emotional reactions. Nurses may also strive to preserve the dignity of individuals with dementia. In addition, nurses may feel the need to protect increasingly vulnerable patients, such as protecting Ursula from her grandchildren, who treated her like a plaything. As the characters begin to show declining judgment, this protection is extended to their families (who become targets of poor decision making). Nurses may also seek to provide help as patients experience language loss.

A need to reassure and promise care and safety abounds as patients experience sensory and perceptual hallucinations and a fluctuating course. Education, psychosocial support, and referral to other support services can be made readily available as nurses continue to enhance understanding of these needs. Patient-centered nursing care, as seen in The Bear Came Over the Mountain (Munro, 2007), helps restore humanity for patients and families coping with dementia.

Conclusion

As the number of older adults in the United States increases, the incidence of dementia will also increase (WHO, 2015). Although new treatments are currently being researched, dementia remains a chronic, progressive syndrome that usually results in death (WHO, 2015). The experience of dementia can leave individuals with declining cognitive function that renders them unable to share their experiences. Consequently, not enough is known about the personal experience of living with dementia. The literature reviewed for the current analysis allows nurses to enter the imaginary experiences of patients with dementia, providing unprecedented, vivid, and personal accounts that are not always revealed during clinical assessments. The accurate portrayal of these characters provides a unique opportunity to gain greater insight into the patient experience. Through the characters’ experiences, nurses will have a better understanding of the fear, defenselessness, vulnerability, and shame associated with dementia. Greater understanding of how dementia is experienced by patients and families provides a level of added sensitivity to the care provided. This added awareness, insight, understanding, and reflection will result in a higher level of care and a higher quality of life among individuals with dementia.

References

  • Alzheimer’s Society. (2015). Later stages of dementia. Retrieved from http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=101
  • Black, R. (2014). Life drawing. New York, NY: Random House.
  • Brown, C. (2013). The last first day. New York, NY: Random House.
  • Genova, L. (2007). Still Alice. New York, NY: Gallery Books.
  • Marquez, G.G. (1970). One hundred years of solitude. New York, NY: Harper & Row.
  • Miller, S. (2014). The arsonist. New York, NY: Alfred A. Knopf.
  • Munro, A. (2007). The bear came over the mountain. New York, NY: Vintage Books.
  • Shakespeare, W. (1608). The tragedy of King Lear. London, UK: Nathaniel Butter.
  • Wharton, W. (1981). Dad. New York, NY: Avon Books.
  • World Health Organization. (2015). Dementia key facts. Retrieved from http://www.who.int/mediacentre/factsheets/fs362/en

Keypoints

Kazer, M.W. & Osborn, K. (2015). If They Were Real: Lessons Learned from Literary Characters With Dementia. Journal of Gerontological Nursing, 41(9), 42–47.

  1. Literary characters can help nurses understand how it feels to experience dementia and, in turn, will result in more sensitive and insightful nursing care.

  2. Based on a deeper understanding of how symptoms of dementia are experienced, nurses may empathize with the frustration and worry of patients and families coping with dementia and implement appropriate interventions.

  3. Encouragement provided by nurses can help patients and families manage the frightening and frustrating symptoms of dementia.

  4. Improved nursing care for individuals with dementia will contribute to the maintenance of human dignity.

10.3928/00989134-20150522-66

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