Caretakers of patients with Alzheimer and other types of dementia: Who is the real victim?

‘la víctima principal del Alzheimer no es el enfermo sino el propio cuidador’

[The main victim of Alzheimer is not the patient but the keeper]

Pablo A. Barredo

This is one of those sentences that send your body to a sudden stop while your mind races at the speed of light. You attempt to rationalize it, but cannot. What is going on? Does it apply to everybody and every single case? Is this a particular happenstance of our fast-paced productive-driven society?

Alzheimer’s disease (named after Dr. Alois Alzheimer) is considered the most common cause of dementia among older people, with the first symptoms usually appearing after age 60. It is an irreversible, progressive brain disease that slowly destroys memory and thinking skills, with other disturbances of cognitive function and personality change, and, eventually, even the ability to carry out the simplest tasks of daily living. Alzheimer’s is a slow disease that progresses in three stages—an early, preclinical stage with no symptoms, which most of the times goes unnoticed (Stages 1 to 4), a middle stage of mild cognitive impairment (Stage 5), and a final stage of Alzheimer’s dementia (Stages 6 and 7, if reached).

THE STAGES OF ALZHEIMER’S DISEASE

Mostly unrecognized(up to 10 years)	Stage 1	No impairment evident
	Stage 2	Intermittent memory lapses
	Stage 3	Mild cognitive impairment (MCI)
	Stage 4	Trouble with trivial activities
Obvious dementia stages	Stage 5	Help is needed – Forgetful – Hazy on major autobiographical events
	Stage 6	Noticeable personality changes; loss of coherent sense of surrounding  environment
	Stage 7	Loss of ability to talk, walk, eat; bed ridden, immobile, and helpless

According to Dr. Barry Reisberg sensu Gillies

Thinking about Barredo’s statement I discovered Andrea Gillies, a writer and journalist who ended becoming keeper of Nancy, her mother in-law. From her experience from the days spent caring for her she writes a memoir (A. Gillies. 2009. Keeper. Short Books, London and Broadway Books, New York). A memoir where, besides describing the physiological whereabouts of the disease and the ways they are experienced by the diseased, she lays bare how this very personal experience affected not just her life, but also those of each one of her family members.

Some of her concerns about the illness itself are expressed here:

The most widespread misconception is that dementia’s good way to go: “They’re in their own little world and pretty happy” (…) If I had to pick one catchall descriptor for Nancy’s life in the last few years it would be misery. Profound misery, unceasing and insoluble. She knows that something is wrong, very wrong, but what is it?

(…) Her mind [Nancy’s], unable to deal with not being able to make sense of things, makes its own sense, delivering explanations up from fragments, inventing new scenarios that make things seem coherent. (…)

There’s no cure for dementia. There’s no partial cure. All that’s available is a slowing down of the symptoms of fire damage. Sufferer’s experience of the drugs available is patchy and inconsistent. They don’t work for everyone. They’re hit and miss, and usually only of short- to medium-term use.

When Nancy is upset, distraction’s the only way out. Everything else, and especially reasoning, only escalates and intensifies the trouble.

Therefore,

People are afraid of this disease. (…) People act as if dementia were contagious, (…), and the social stigma is as strong as ever. (…) When things get difficult for old colleagues and fans, it’s easier for them to turn them away, untroubled by duty.

And then, she poses a poignant question regarding her own unrequested role:

Does anybody who hasn’t been through it understand just how dehumanizing caregiving can be?

This is, of course, a rhetorical question that refers mainly to non-professional caregivers, those thousands of ones that cannot go home by the end of the day because they are already there; those keepers who do not have breaks, weekends, or vacations because they care for a loved one; those who are caregivers 24/7, 365 days a year, and who have to pay an undeserved toll precisely because of that. Gillies continues:

I am not feeling well. This not-feeling-well feeling is persistent and low-key. I am not going to the doctor. I don’t want to have a conversation about stress and embarrass myself. Stress would be the word used at the consultation. It’s an easy word, protectively imprecise, a useful box to tip your feelings into. But a better word would be incompatibility. It’s the shock of daily, ongoing proximity to this “vegetable universe” of my in-laws: their lives pared back to the bone, to the medical, physiological, placed squarely in the raw, reduced to material struggle, an easy decline the most that can be hoped for.

Why is all this of important consideration?

• Because the risk of Alzheimer’s increases with age;
• Because beyond age 65 the amount of people with Alzheimer doubles for every 5-year interval;
• Because it is estimated that there as many as 5 million Americans aged 65 or older who have the disease; and,
• Because unless we can find a cure or a way to prevent it, with current population trends the number of affected people will significantly increase. And with that the number of caregivers needed to care for all of them: see the following graph.

Modified from: Alzheimer’s disease Facts and Figures 2014 Report, Alzheimer’s Association, Chicago.

These considerations bring to mind several questions directly related to our role as medical interpreters:

• How might be this affecting the outcomes of the medical encounters where patients have to be accompanied by their caregivers and are most likely unable to speak out by themselves?
• Are there any available symptoms or cues that may serve as an indication as to what extent keepers might be psychologically worn out by their own role? And how those distress them and might ultimately affect the medical caregiving to the demented patient they care for if the most trusted information regarding the patient’s condition should be coming from the keeper?
• Are there any specific cultural cues that interpreters might be able to spot that clinicians would likely miss due to cultural differences?
• Is an intervention by the interpreter appropriate in cases as such?

I trust that interpreters can be of invaluable help in acquainting medical providers with the nuances of cultural understanding, and socially driven responses, to Alzheimer’s disease and other dementia as well as to get useful insights into the patient’s (family and friends alike) expected management of their illness. September 21^st of each year has been established as the World Alzheimer’s Day; a day in which Alzheimer’s organizations around the world concentrate their efforts on raising awareness about Alzheimer’s and dementia. I was wondering how many of you did this year remember this particular date or simply knew about it and its significance.  Be this note of some help towards this goal of awareness to see if we can start answering some questions.

Additional references:

• Baldwin, C. and Bradford Dementia Group. 2008. Narrative(,) citizenship and dementia: The personal and the political. Journal of Aging Studies 22:222-228.
• Maurer, K et al. 2006. Has the management of Alzheimer’s disease changed over the past 100 years? The Lancet 368: 1619-1621.
• Interview: Pablo A. Barredo: “Un enfermo de alzheimer no pierde nunca la memoria emocional” www.lavanguardia.com. [in Spanish]

On Missing the Interpreter

If you have taken ‘Bridging the Gap’ you already heard of Anne Fadiman’s book “The Spirit Catches You and You Fall Down”.  But, did you have a chance to read it? I strongly recommend it.

Originally published in 1997 by Farrar, Straus and Giroux, ‘The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures’, a book recipient of The National Book Critics Circle Award, is a mandatory book for medical students at the University of Michigan.

 

The Book portrays the story of Lia Lee, a Hmong child diagnosed with severe epilepsy and the youngest daughter of a refugee family from Laos that settled in central California, who was treated for her condition in a small county hospital where no professional medical interpreters were available. More than the language barrier the book emphasizes the importance of the professional interpreter (an in this particular case, the lack of it) in bridging the cultural nuances among different world views and perspectives. It clearly places the interpreter’s role as cultural broker as important, if not more, than the interpreter’s role in bridging the language barrier.

“Dan [Dr. Murphy] had no way of knowing that Foua and Nao Kao [Lia’s parents] had already diagnosed their daughter’s problem as the illness where the spirit catches you and you fall down. Foua and Nao Kao had no way of knowing than Dan has diagnosed it as epilepsy, the most common of al neurological disorders. Each has accurately noted the same symptoms, but Dan would have been surprised to hear that they were caused by soul loss, and Lia’s parents would have been surprised to hear that they were caused by an electrochemical storm inside their daughter’s head that had been stirred up by the misfiring of aberrant brain cells.

(…)

Except through surgery, whose risks consign it to the category of last resort, epilepsy cannot be cured, but it can be completely or partially controlled in most cases by anti-convulsant drugs.

The Hmong are not the only people who might have good reason to feel ambivalent about suppressing the symptoms. The Greeks called epilepsy “the sacred disease”.

(…)

Although the inklings Dan had gathered of the transcendental Hmong worldview seemed to him to possess both power and beauty , his own view of medicine in general, and of epilepsy in particular, was, (…), essentially rationalist.”

Besides the contrasting visions and ways of approaching a given medical problem (disease, according to the physician’s point of view, versus illness, the patient’s point of view of the disease), the extremely different ways to address a patient or a family member or simply to who address questions and concerns, behavioral attitudes deeply embedded within each interacting culture (the Western culture of medicine and the traditional Hmong society culture), may cause intercommunication to miserably fail.

(…) When doctors conferred with a Hmong family, it was tempting to address the reassuringly Americanized teenaged girl who wore lipstick and spoke English rather than the old man who squatted silently in the corner. Yet failing to work within the traditional Hmong hierarchy, in which males ranked higher than females and old people higher than young ones, not only insulted the entire family but also yielded confused results, since the crucial questions had not been directed toward those who had the power to make the decisions. Doctors could also appear disrespectful if they tried to maintain friendly eye contact (which was considered invasive), touched the head of an adult without permission (grossly insulting), or beckoned with a crooked finger (appropriate only for animals). And doctors could lose the respect of their patients if they didn’t act like authority figures. (…)

Complementing the case of Lia Lee, the book intersperses and discusses other medical interactions where conflicting cultural approaches to medical problems highly influenced the outcomes.

(…) In his opinion [of Dwight Conquergood, an ethnographer sent to Ban Vinai by the International Rescue Committee], the physicians and nurses at Ban Vinai [camp hospitals in Ban Vinai refugee camp, Laos] failed to win the cooperation of the camp inhabitants because they considered the relationship one-sided, with the Westerners holding all the knowledge. As long as they persisted in this view, Conquergood believed that what the medical establishment was offering would continue to be rejected, since the Hmong would view it not as a gift but as a form of coercion.

Only when cultural barriers were tore down the possibility for medical outcomes to become satisfactory both to the medical team and to the patient and family alike became feasible.

Therefore, the book accentuates the importance for professional interpreters in a medical setting in bridging the cultural gap between interacting parties if achievement of satisfactory outcomes is sought. Mainly, because all parties are aiming to the same goal: the well-being of the patient.

Related links:

• http://us.macmillan.com/thespiritcatchesyouandyoufalldown/AnneFadiman
• http://www.youtube.com/watch?v=LwnPVHvK1wE

 

Some thoughts prompted by Atul Gawande’s ‘Complications’

In medical terminology, a ‘complication’ is an additional disorder or condition that develops during the course of an existing one (OED). During his training as a surgery resident Dr. Gawande became concerned with the uncertainties and dilemmas underlying within the medical system. In his own words: (…) the medicine that one cannot find explained in textbooks but that has puzzled me, sometimes troubled me, sometimes amazed me, as I‘ve joined the profession’s ranks.

From those concerns, was born in 2002 “Complications: A Surgeon’s Notes on an Imperfect Science”, a book where, with a fluent and engaging narrative, Dr. Gawande weaves, interspersed with a plethora of detailed examples, an engaging discussion on some widespread situations. Homogeneous as a whole, and also within each of its sections, the book can also be read as a collection of unrelated essays where no particular reading order is required; therefore, freeing the reader of any spatial and/or temporal constraints.

The book is structured in three distinct sections: (1) fallibility, where issues involving medical providers, mainly doctors, are discussed; (2) mystery, devoted to themes that puzzled and still puzzle the medical profession; and (3) uncertainty, on rare medical cases where apparently obvious evidences might be conducive to misdiagnose a particular disease.

Insightful as those essays are, they are not merely to be read passively but to be taken as a starting point for deeper discussions on the subjects they bring up. I found especially interesting those chapters where ethical dilemmas arise from given situations that prompted the author to reevaluate cases and the parties involved, putting everything in perspective to allow a discussion from a detached a point of view as possible.

Especially poignant, particularly regarding to surgery, is the need to balance medical training of new surgeons with the patient’s consent to be cared by a trainee, even under the attending’s supervision; mainly when the author himself admits that: One reason I doubt that we could sustain a system of medical training that depended on people saying “Yes, you can practice upon me” is that I myself have said no. (…). On the other hand, it appears that positive outcomes in teaching hospitals tend to be higher than in non-teaching hospitals because in them there is always more than one medical provider evaluating, checking, and rechecking every step in every single case. A chance for errors is always at hand.

Three decades of neurophysiology research have shown us numerous ways in which human judgment, like memory and hearing, is prone to systematic mistakes. The mind overestimates vivid dangers, falls into ruts, and manages multiple pieces of data poorly. It is affected by the order in which information is presented and how problems are framed.

(…)

The fact is that virtually everyone who cares for hospital patients will make serious mistakes, an even commit acts of negligence.

(…)

Operations like that (…) have taught me how easily error can occur, but they’ve also showed me something else: effort does matter; diligence and attention to the minutest details can save you.

Statements as those made me consider our profession as medical interpreters in similar parameters. As all we are aware of, there is a strong need for continuous evaluation. An assessment that should be performed in each and every encounter and not as a detached testing set up; thus, prompting a strong need to conscientious and continuous self-evaluation. This evaluation should entail not only our interpretation performance in itself, but our role as a bridge between provider and patient to facilitate the crossing as easier from one side as from the other. As interpreters, we aim to be considered as part of the caring team, to gain recognition from the medical staff. However, we should be asking to ourselves: Is this recognition going to enhance or jeopardize the benefits a patient might gain from our presence in the encounter? Is this going to favor or endanger the patient’s trust?

There is the interpreters’ need to be friendly enough to be trusted by the patient. To generate a warmth ambiance where the patient can feel at ease to ask questions, and as many questions as needed, to clarify issues without having the feeling of becoming inconvenient or even intrusive. And at the same time, detached enough from the patient for self protection (too much empathy can be detrimental) without giving the provider a false impression (i.e., that we teaming with the patient against the medical establishment). Therefore, there is a strong need for balance if we aim to succeed in our communication endeavors, both as language and cultural barrier breakers.

I would like to end these thoughts with some of Gawande’s comments on handling doctor-patient interactions as well as in addressing medical decisions. I believe it might as well be convenient to us, interpreters, to bear them in mind during the encounters in which we assist:

(…) I had come into residency to learn how to be a surgeon. I had thought that meant simply learning the repertoire of moves and techniques involved in doing an operation or making a diagnosis. In fact, there was also the new and delicate matter of talking patients through their decisions – something that sometimes entailed its own repertoire of moves and techniques.

(…) As one surgical professor told me, when you sit close by, on the same level as your patients, you’re no longer the rushed, bossy doctor with no time to talk; patients feel less imposed upon and more inclined to consider that you may both be on the same side of the issue at hand.

(…) The doctor should not make all these decisions, and neither should the patient. Something must be worked out between them, one on one – a personal modus operandi.

 

References:

• Gawande, A. 2002. Complications: A Surgeon’s Notes on an Imperfect Science. Metropolitan Books/Henry Holt & Company, New York; Profile Books Ltd, London
• Gawande, A.  Personal web page; http://atulgawande.com
• Oxford English Dictionary (OED); www.oed.com

On Depression, Madness, and Melancholia: One Patient, Two Visions

Depression is a persistent brain disorder, component of various psychoses that interferes with the patient’s everyday life. Its symptoms can include: sadness, loss of interest or pleasure in activities one used to enjoy, change in weight, difficulty sleeping or oversleeping, energy loss, feelings of worthlessness, and thoughts of death or suicide.

There is no single cause for depression, among them genetic, environmental, psychological, and biochemical factors. It is estimated that in the United States alone 20 million people suffer depression with feelings that do not go away, even though antidepressants and talk therapy have been considered effective treatments.

William Styron, an American writer best known for his novels The Confessions of Nat Turner (1967) and Sophie’s Choice (1979) had his worst bout of melancholia in 1985; a bout so severe that provided him with a seven week stay in the psychiatric unit at Yale –New Haven Hospital. Out of his experience with depression he wrote an article that appeared in the magazine ‘Vanity Fair’, which was later expanded and published as a book: Darkness Visible: A Memoir of Madness (Random House, 1990). There, he reflects on his knowledge of the malady acquired as a long-sufferer of this incurable and recurrent illness.

Here are some very interesting issues as expressed by him in regarding the illness and his own experience of it (underlined are mine). I trust that some of his comments about the malady are largely self-explanatory:

• Depression is a disorder of mood, so mysteriously painful and elusive in the way it becomes known to the self – to the mediating intellect – as to verge close to being beyond description. It thus remains nearly incomprehensible to those who have not experienced it in its extreme mode (…)
• My acceptance of the illness followed several months of denial (…)
• A disruption of the circadian cycle (…); this is why brutal insomnia so often occurs and is most likely why each day’s pattern of distress exhibits fairly predictable alternating periods of intensity and relief.
• (…) never let it be doubted that depression, in its extreme form, is madness. The madness results from an aberrant biochemical process. (…) such madness is chemically induced amid the neurotransmitters of the brain, probably as a result of systemic stress, which for unknown reasons causes a depletion of the chemicals norepinephrine and serotonin, and the increase of a hormone, cortisol. With all of this upheaval in the brain tissues, the alternate drenching and deprivation, it is no wonder that the mind begins to feel aggrieved, stricken, and an organ in convulsion. Sometimes, though not very often, such disturbed mind will turn to violent thoughts regarding others. But with their minds turned agonizingly inward, people with depression are usually dangerous to themselves. The madness of depression is, generally speaking, the antithesis of violence. It is a storm indeed, but a storm of murk. Soon evident are the slow-down responses, near paralysis, psychic energy throttled back closed to zero. Ultimately, the body is affected and feels sapped, drained.
• (…) certainly one psychological element has been established beyond reasonable doubt, and that is the concept of loss. Loss in all of its manifestations is the touchstone of depression – in the progress of the disease and, most likely, in its origin.
• (…) The pain is unrelenting, and what makes the condition intolerable is the foreknowledge that no remedy will come – not in a day, an hour, a month, or a minute. If there is a mild relief, one knows that is only temporary; more pain will follow.
• A phenomenon that a number of people have noted while in deep depression is the sense of being accompanied by a second self – a wraithlike observer who, not sharing the dementia of his double, is able to watch with dispassionate curiosity as his companion struggles against the oncoming disaster, or decides to embrace it. (…)
• (…), the hospital was my salvation, (…) – I found the repose, the assuagement of the tempest in my brain, that I was unable to find in my quiet farmhouse. This is partly the result of sequestration, of safety, (…) the hospital also offers the mild, oddly gratifying trauma of sudden stabilization – a transfer out of the too familiar surroundings of home, where all is anxiety and discord, into an orderly and benign detention where one’s only duty is to try to get well. For me the real healers were seclusion and time.
• Save for the awfulness of certain memories it leaves, acute depression inflicts few permanent wounds. There is a Sisyphean torment in the fact that a great number – as many as half – of those who are devastated once will be struck again; depression has the habit of recurrence.

Quite recently, Alexandra Styron, one of his daughters, has reflected on her personal father-daughter relationship and how this relationship has been, over the years, shaped by her father’s illness; personal impressions and thoughts made public in Reading My Father: A Memoir (Scribner, 2011). Therefore, father and daughter provide the public with a rare case, in which the interested reader can somehow experience firsthand the effects of a given mental illness from two different perspectives: that of the patient himself and that of one his most direct (though not quite sure if close) family members. Some of her impressions follow (underlined are mine):

• (…) He was also praised, perhaps by an even larger readership, for Darkness Visible, his frank account of battling, in 1985, with major clinical depression. A tale of descent and recovery, the book brought tremendous hope to fellow sufferers and their families. His eloquent prose dissuaded legions of would-be suicides and gave him an unlikely second act as the public face of unipolar depression.
• (…), he flatly refused the two forms of treatment universally acknowledged as beneficial for the maintenance of a mind inclined to melancholia: talk therapy and antidepressants. (…)
• (…) Wretched and panic-stricken, Daddy began suddenly clinging to my mother as if she were the last raft on the Titanic. He’s spent more than twenty years pushing her away. Now he wouldn’t let her out of his sight. (…) If she did manage to sneak away one hour, a passing rain shower was enough to convince him she and her car were wrapped around a tree.
• (…) His voice all but disappeared, his gait slowed to a palsied shamble. The fantasies of suicide he’d harbored through much of the fall turned still more lurid – although, institutionalized as he was, he did grow resigned to the fact that the option was probably out of his hands. (…) His hyperreactive system – hitched to his chronic hypochondriasis (…); every “possible side effect” tried out its routine on him. Electroconvulsive therapy (ECT) was suggested as a possible option, having proved to be a particularly efficacious treatment for unresponsive, older patients.
• Watching Daddy go insane was tough on all of us but utterly devastating for my mother. His obsessions were endless and exhausting. (…) But sometimes it looked at her and it seemed as if she could not breathe, as if the whole unbearable situation would literally suffocate her. (…)
• Some days I just looked at my father and thought: Are you really going to die of depression? (…) He knew he was losing the fight, but he drew the line at being forced to feel better. No trying was his toehold on personal dignity, his last stand.

Although depression affects everybody in a different way and degree of intensity, it is noticeable from both Mr. Styron and her daughter’s comments that depression is a difficult to accept long-standing illness that strongly affects both patients and family alike. However, as with many diseases, acknowledging it is the first step to fighting it. And it is important to keep in mind that in making public a battle such that can only help other affected people to cope and fight against it, while hiding it and denying it not merely delays to the point of suppression the patient’s options for recovery but also prevents fellow patients, caretakers, and medical providers alike to benefit from our understandings.

Additional References:

Medline plus (NIH: National Institute of Mental Health);

UMHS Depression Center

“How are you?” “Fine”

A colleague recently sent me an opinion piece from The New York Times. I really enjoyed reading this article and, in my opinion, it is very accurate. Now, do not get me wrong, I bet a lot of people (especially the younger generation) probably will disagree, but for me, and majority of my patients, this is very true. Though I must say that some Americans told me things I felt I did not want to know at all and some Russians guard their personal life and feelings as a top-secret.

I really do not think that Russians are unable to “fake fineness” due to some “opposition” to enthusiasm, proclamations of joy and optimism of the Soviet government.

I know that I can “fake fineness” almost perfectly after living in the US for almost 20 years. Most of the time, I do not feel like faking at all.

I actually think that traditionally Russian people are more open and direct and may be even more sincere and genuine than some Americans. Russians love to talk and some (but just some) of them are great at listening. And after all if there is a question mark at the end of the sentence that implies an answer (and not just a one word answer). If you ask old school Russians “How are you?” – you most likely will hear everything what happened to them, their family members, friends, neighbors, etc. for the last month (if not the last year or decade). There is a story I’ve told many times about having stiff facial muscles at the end of the day because of the constant smiling at strangers all day long. This is something I would never do in Russia, because people would think that I’m not well if I just smile without any specific reason for it.

And I suddenly realized, after reading this article, that I’m probably more depressed now, because I must smile and be fine all day long, while my patients are complaining non-stop and quite often angry and gloomy, but I do not get a chance air my own grievances!

Then, a couple of days after reading this article, I went to get some gas early in the morning. There was a wind chill warning that day (the wind chills to – 30F) there were just a few cars at the gas station. As soon as I got out of the car, I was frozen and almost blown away by an awful wind. An employee appeared in front of me. A shapeless, ageless female in her winter uniform and neon orange vest over that, and her face covered by a balaclava hat so I could see only her eyes behind the eyeglasses.

“How are you?” she asked.

“Cold,” I replied. “How are you?”

“Great!!!” she answered enthusiastically.

“Aren’t you cold???” I asked with disbelief.

“It is not too bad today,” she replied. “During the recent Polar Vortex we got wind chills to – 52F in here, so today is not bad at all.” She actually sounded happy. “And I’m almost done with my shift.”

“I’m happy for you,” I said, thinking that she is probably counting seconds to go home.

Instead, she replied, “I have less than 5 hours to go.” And with that, she moved on to cheer up the other drivers getting out of their cars.

When I got back into my car I could not feel my hands or feet, but I realized that this woman made my day, that I would take this small talk, this optimism, and this smile a hundred times over the angry, grim, murky, and gloomy outlook from my former fellow-countrymen.