Maintaining Autonomy and Personhood with Alzheimer’s Dementia

Sretta Clark

GERO 510 – Spring 2014

Abstract

Alzheimer’s is an insidious disease, quietly taking the individual hostage, slowly

stripping away at the very fiber of their soul. The literature shows that the diagnosis brings with

it a unique set of ethical, moral and legal dilemmas. Much has been learned over the decades

regarding not only what is lost, but what remains of the person affected by the disease. Today

caregivers focus not just on the medical aspects of Alzheimer’s, but more importantly on the

survival of autonomy and personhood through enhanced communication techniques; a reflective

observation of social behaviors; and attunement and consideration of the individual’s needs.

Introduction

Certainly nothing can be more frightening than the thought of slowly losing every person,

every place, every memory one has accumulated over a lifetime. There is nothing more

unsettling than the notion of depending on the good graces of family, and often complete

strangers to navigate you through the unfamiliar scenery that becomes your world. Such is the

reality faced by each person diagnosed with Alzheimer’s. In the paper that follows, I combine a

multitude of previous literary works to map a path of the journey made by those diagnosed. It is

my hope to paint a picture of what the journey might entail for such a person; offering an

understanding of how we as caregivers can assist these individuals in maintaining whatever level

of dignity and autonomy possible as they face the changes before them.

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Historical Perspective and Treatment

Though we no longer refer to those suffering with Alzheimer’s as “demented”, the early

work of Dworkin, specifically his article, Autonomy and the Demented Self, was the impetus for

this paper. He notes that there are two ways in which we may consider a person suffering from

Alzheimer’s, either as a demented person, which emphasizes the individual’s present condition

and their subsequent abilities and limitations, or as a person who became demented, which

conversely sees the dementia as an event that has occurred as a part of the totality of the

individual’s life (Dworkin, 1986). The past century has witnessed a much needed shift from the

harsh view of the individual as “demented” to a more humanistic stance of an individual who is

experiencing dementia.

To expand on Dworkin’s work, it is necessary to examine our historical definitions,

assessments and treatments of persons found to be incompetent, presumably resulting from some

form of dementia. The 2007 work of Shackelford and Freidman provides an overview of the

attitudes and circumstances held by society and the courts in the mid-twentieth century, under

which an individual could be deemed incompetent and often institutionalized. It is difficult not to

view the declaration of incompetence, at least to some degree, as tantamount to the robbing of

one’s personhood. A psychiatrist today might be shocked to learn that the frail elderly were

institutionalized in asylums alongside schizophrenics and declared to be “insane” as recently as

1940. Mental incompetence was then gauged not by the medical milieu, but by the court, and

could be based on something as ambiguous as abdominal pain or alcoholism. A staggering 79%

of the incompetent wards were over the age of 60. This group was the most vulnerable, not only

by virtue of age, but often most vulnerable at the hands of those family and friends who had been

appointed by the courts to protect them, as well as the individuals employed to provide care in

the institution. Though the term “elder abuse” had yet to be coined, it was a reality in the

financial, mental and physical sense. Asylum life was difficult; reports of suicides and

maltreatment filled newspapers. By 1940, electroconvulsive therapy, insulin shock therapy, and

frontal lobotomies were acceptable treatment modalities. The courts did allow for the possibility

of “temporary incompetence”, in which an individual’s rights, and thus personhood could be

restored, however the line between who was incompetent, insane, or simply temporarily forgetful

was at best, blurred. It is not unrealistic to assume that those suffering from dementia could not

be deemed “temporarily incompetent” as dementia is a progressive disease, thus once

institutionalized, their fate was sealed.

Today we recognize that those diagnosed with dementia are not “insane”. To be certain,

they do require specialized care, but that care is provided in a manner designed not only to

safeguard the individual but also to optimize their quality of life.

Aging of Society in the Modern Era

The aging of society has been referred to as the “Silver Tsunami”. It’s a quirky little

phrase, that provokes a giggle and according to the marketing gurus employed by countless

products and services, it will be the time of one’s life. Images of elders leading the aerobics class

or taking kayaking lessons are both hope-filled and promising, however as is always the case,

there is another side to this story which receives much less accolades. The proportion of older

persons is expected to nearly double to 20% by the year 2030, but is living longer a good thing

for everyone? Longer life spans and low birth rates in recent decades mean that there will be

relatively fewer working-age adults to assist the increasingly larger number of older persons that

may be in need. In the United States, the responsibility for our elderly population is one

shouldered predominately by female family members. This tradition stems from the ideology of

familism; the belief that families should maintain a sense of privacy, free from outside intrusion.

The ideal type is typified when women are available and willing to assist the other members

(Killian & Ganong, 2002).

Among the multitude of possible diagnoses that may come with aging, is that of

dementia. Dementia is a global term referring to a class of diseases, associated most frequently

with the aging population. It becomes clear that as the population ages, so shall the number of

persons diagnosed with this disease. The disease course entails a progressive loss of cognitive

functioning, which will eventually hinder one’s ability to perform even basic self-care activities.

Of all forms of dementia, Alzheimer’s is the most common, accounting for two-thirds of all

identified cases and beginning with the development of amyloid plaque deposits in the brain.

These deposits are believed to cause inflammation that first alters the neurotransmitters, leading

eventually to neuron death. The first recognized signs of an evolving problem typically include

deficits with episodic memory and problem-solving, questionable judgment, and a struggle with

the use of ordinary language skills (Gatz, 2007). It is at this time, that medical intervention is

often sought.

To Tell or Not to Tell

The sense that something is wrong must teeter between pensive concern and paralyzing

fear. Regardless of the emotion felt, eventually the individual will find their way most probably,

to his or her primary care physician. It is at this juncture that the first of many ethical dilemmas

appears; should a physician tell or not tell the patient of the diagnosis. One would assume that a

physician would undoubtedly tell the patient of the medical findings, regardless of how difficult

the news might be, but that is not the case, nor is it even required. The Hippocratic Oath makes

no explicit statement about telling the truth. The Declaration of Geneva (1947), a modern

restatement of the Hippocratic Oath, states that the health of the patient should be the doctor’s

first consideration, but again does not address the veracity of his actions. The International Code

of Medical Ethics (1968/1983) demands that a physician deal honestly with patients in regards to

competence and professional misconduct, still yet it does not address honesty with regards to

disclosing a diagnosis. The World Medical Association in the Declaration of Lisbon (1981)

implies truth telling about diagnosis when it declares that patients have a right to accept or refuse

treatment after receiving adequate information. Finally, The General Medical Council (1995)

recommends that to establish and maintain trust in their relationship with patients, a physician

must give them “the information they ask for or need about their condition, its treatment and

prognosis…in a way they can understand” (Marzanski, 2000), but as we see, none of these

guidelines mandate truth-telling. Is it possible that physicians believe that with no viable

treatment or cure and with the insidious nature of the disease, disclosure would in fact be

detrimental to their patient? According to Marzanski, a survey of geriatric psychiatry consultants

showed that the majority of them “rarely” or only “sometimes” informed their patients about the

diagnosis and almost never about the prognosis. The determination to disclose information was

based on the level of impairment, with disclosure being made “nearly always” to those mildly

impaired, but rarely to those with moderate to severe impairment.

Given the fact that there is currently no known cure, relatively few effective treatments

and that the prognosis is certain only in that the condition will slowly lead to death, perhaps

withholding information is simply a form of benevolent deception. To explore this concept, we

look at principle-oriented bioethics, which suggests four points with regards to truth-telling to

patients: 1) autonomy, 2) non-maleficence, 3) beneficence and 4) justice. From the prospective

of autonomy, patients who are competent to make decisions should have the right to, and

physicians should have the duty to respect their preferences regarding their own care. This

presents the problem of considering competence. Is competence something that is all-or-nothing?

Depending on the stage of the disease at the time the patient seeks initial medical intervention,

competency may be called into question. Does a person with dementia who is perhaps no longer

competent to manage financial affairs, still competent with regards to making at least some

medical decisions? Non-maleficence refers to doing no harm. This is accomplished by weighing

the benefits versus the potential harm of disclosure and seeking an outcome that will yield

maximum good for the patient. Noble as it may seem, can a physician truly make such a decision

without having prior knowledge of the patient’s current life circumstances, support structure, and

so on? Justice points to the fair, equitable and appropriate treatment of the patient, which would

seem to imply truth-telling at all costs. To practice beneficence is to be concerned with and to

promote the welfare of the patient (Fu-Chang Tsai, 2001). I would suggest that when the

decision is made to withhold diagnostic and prognostic information from a patient, it is in fact

made with as a form of benevolent deception. I would further suggest that a withholding,

regardless of the reason, is to rob the individual of the autonomy and personhood he still

possesses. It remains controversial when, if ever, a person loses that right and whether

incompetence, defined by some as the inability to understand diagnostic information, is enough.

Akin to the dilemma of whether or not the physician chooses to divulge the diagnosis, is

that of the patient’s desire to be told. In a study of 30 participants (Marzanski, 2000), 20 reported

that nobody had ever talked to them about their illness. In cases where discussion had taken

place, disclosure was not always made by a physician; was presented with a minimizing

description of the situation; or was blatantly presented as a different finding (hearing impairment,

angina pectoris, and bereavement had been suggested as responsible for their present condition).

The overwhelming majority (21/30) of participants stated that they wanted to know what was

wrong with them, and in cases where diagnosis was known, wanted information as to the cause

and prognosis. They additionally stated that they would like to have this information provided by

their physician. With that said, one-third of patients in the study did not want to know, and this is

a significant enough number to suggest that not everyone is prepared to live with such

devastating news.

Having considered both the patient and the physician, it behooves us to also include the

feelings of the family members in the receiving of the diagnosis. It would be remiss to assume

that such news will not impact them, as it is this group of people who must determine in what

ways, if any, they are willing or able to assist the individual. According to Marzanski (2000) the

majority of dementia suffers’ relatives do not want the patient to be told his or her diagnosis, but

they themselves state that they would want to be told the truth if they had the disorder. This

appears to be the first act of role-reversal, inasmuch as they are attempting to protect the loved

one (as you would a child) from a frightening situation by instead bearing the burden themselves

(as a parent would do). Conversely, another reason we are tempted to lie is in order to

manipulate others into making choices we think appropriate, in which case we may be interfering

with their right to self-determination (Jackson, 1993). It is for this reason, that the physician must

closely evaluate the decision to honor wishes of the caregiver over those of the patient.

It cannot be forgotten that such knowledge for the children of the individual also brings

an additional question of angst: Am I going to acquire Alzheimer’s? Genetic testing is available

to individuals concerned with the inheritance of mutations which cause Alzheimer’s. With

regards to the genetic component of Alzheimer’s, there are two types of genes (causative and

susceptibility) that play a role in the risk of developing the disease. Causative genes are

autosomal dominant, giving the child of an affected parent a 50% chance of inheriting the gene.

Furthermore, inheriting one copy of the mutated gene is all that is required to develop the

disease. Susceptibility genes are unique in that they increase the chance of a person developing

Alzheimer’s. Though they are not sufficient alone to cause the disease, they do account for more

of the genetic risk for acquiring it (Gatz, 2007).

Alas we find ourselves, patient, family, and doctor, sitting in the physician’s office,

awaiting the news. How might the autonomy and personhood of the individual best be protected

at this first of many crossroads? I would suggest the use of benevolent paternalism. Benevolent

paternalism is generally considered inappropriate in modern society, where the standard for

patient-doctor relationships is now more akin to a meeting of equals than that of a parent-child

relationship. However, some aspects of paternalism may still be considered as elements of good

patient care. It allows the physician to use strategies to disclose the findings in such a way that

the patient has time to grieve the losses that he or she must certainly fear, a process referred to as

“holding” the patient. A reliable, empathetic relationship with a provider may afford patients

and their families an environment in which they feel empowered while adjusting to and coping

with a life which now includes a life-altering diagnosis (Nessa & Malterud, 1998).

Competency, Guardianship, Advanced Directives and Autonomy

Sadly, once a diagnosis is given, so is the accompanying stigma attached. Any decision

made or act performed by the individual is called into question. It seems that everyone becomes

judge and jury, issuing a verdict on the competency of the person diagnosed, both consciously

and unconsciously stripping them of their autonomy and personhood. However, before we attack

the masses, we must recognize that different groups subscribe to different definitions in terms.

Albeit ever so slightly in some cases, this can result in much different outcomes for the

individual in question. To elucidate this point we look at the differences found between the

medical and the psychiatric communities.

The World Health Organization defines dementia as a spectrum of chronic progressive

disorders that produce psychosocial or occupational impairment due to the compromise of higher

cortical functioning within one or more of the following domains: memory, thinking, orientation,

comprehension, calculation, learning capacity, language and judgment. The American

Psychiatric Association’s definition differs, yet similarities exist. Dementia is characterized as a

significant decline in social and occupational functioning due to memory impairment with one or

more of the following associated disturbances: aphasia, apraxia, agnosia, or dysexecutive

disorder (Reilly, Rodrigues, Lamy, & Neils-Strunjas, 2010).

Competency and decision making capacity (DMC) are terms often used interchangeably

in the medical setting. However, not everyone, even within the medical arena assesses the two in

the same manner. This tendency is well developed by the work of Schneider and Bramstedt in

their 2006 single case study in which a bioethicist and a psychiatrist reached much different

conclusions during the evaluation on one gentleman. In determining an individual’s decision

making capacity, the bioethicist asks: 1) does the patient understand the medical condition; 2)

does the patient understand the risks and benefits of the proposed interventions; 3) does the

patient understand the consequences of refusing the proposed intervention; 4) can the patient

weigh the burdens and benefits of each proposed intervention; 5) does the patient understand the

concept of life-saving interventions; and 6) can the patient express his or her health care values?

Conversely, the psychiatrist administers a Mini-Mental Status Examination and asks: 1) is the

patient a danger to self or others; 2) can the patient manage activities of daily living; and 3) is the

patient holdable under state mental health law?

As applied to the individual diagnosed with Alzheimer’s disease, the bioethicist’s

determination seems to be significant only with regards to medical decision making, whereas the

approach used by the psychiatrist can be applied to global decision making. This does not

however, mean that the patient is incompetent overall, thus perhaps modifications should be

made when applying the definition. For example, perhaps the individual is a “danger to

themselves or others” if living in the community, but does this apply if living in a secured

environment? Once in that secured environment, should not a different assessment be used to

determine “modified” DMC? Certainly it is not safe to drink bleach, however if only safe options

are presented, should the individual not be afforded the decision of what he or she chooses to

drink? This may appear to some to be a trite choice, but when one is faced with the eventuality of

losing all choices, even the simplest of things can assist one in maintaining autonomy and

personhood. Likewise, with the assessment of the ability to perform activities of daily living,

even though the individual may not remember in and of themselves to bathe, that should not

necessarily imply that once appropriate verbal cuing is offered, that the individual cannot

perform the task independently.

Traditionally, the notion of autonomy describes a free and independent individual;

autonomy is a sort of mental competence that determines both our inner state and our outward

behavior, as such, it has a close relationship to mental health. Within the realm of ethics, being

autonomous has been defined as having and freely actualizing a capacity for making one’s own

choices, managing one’s own affairs, and assuming responsibility for one’s own life. Autonomy

as a “right” presupposes a mental competence to “act” autonomously (Nessa & Malterud, 1998).

Again, it must be remembered that Alzheimer’s is not equivalent to sudden brain death, it is a

progressive disease and caregivers must be vigilant in allowing and empowering the individual

to continue making decisions.

The desire to promote autonomy is not to be equated with a Pollyanna attitude that

dismisses the true cognitive destruction that accompanies Alzheimer’s disease. Fiduciary

matters, requiring higher levels of cognitive functioning must be addressed. Society bears the

responsibility of protecting an incompetent person from acting against his or her best interest

while at the same time respecting the patient’s own choice and autonomy. It is at this point that

the next dilemma is presented, that of choosing a trusted person to act on one’s behalf. Ideally,

this matter was resolved at the onset of diagnosis, however that is not always the case. Legal

capacity refers to the individual’s ability to make certain legal decisions and to perform legal

actions. Dementing illness causes a deterioration in the ability to manage financial affairs and to

make other critical decisions. Deterioration must be assessed in relationships to the particular

decision an individual purports to make. If a person does not appoint their own power of

attorney, a guardianship appointment may become necessary. Most guardianship orders are

issued for elderly people with dementia. Unlike the 1940’s process discussed at the beginning of

this paper, doctors are usually expected to initiate discussions concerning guardianship measures,

including topics such as financial management, living arrangements, and healthcare decisions.

The appointment of a guardian today always requires a physician’s statement, as well as a

thorough assessment of the risks for both the patient and the environment. In nursing homes,

decision making incapacity is common (44-69%) and court appointed guardians are also

common (23.6%) (Raivio, Maki-Petaja-Leinonen, Laakkonen, Tilvis, & Pitkala, 2008).

Ruholl (1992) offers a perspective of the battle faced by family members, who must

weigh autonomy with their role as guardian. She explains that our culture has come to value

autonomy and independence so highly that the right of elders to choose is the rallying cry of

reformers who call for a “clearly conveyed willingness to accede to an elderly consumer’s

decisions, even if foolish or risky”. Legal guardianship is one process recently targeted as an

absolute barrier to empowerment of the elderly. Stressed family members may be less inclined to

accept guardianship, leaving the impaired elder to an uncertain and unloving fate. Taking over

another’s life can be a painful responsibility, one that many people understandably are reluctant

to shoulder. Yet guardianship may be the only way to ensure that a loved one is safe and secure

and receiving the care he or she needs. Thus begins the dilemma of walking the fine line between

safeguarding the individual while at the same time respecting his or her autonomy.

Modern Perspectives on Autonomy

Is it right to assume that dementia destroys the person as it destroys the brain? When

Alzheimer’s is diagnosed, reliance on others grows exponentially. Independence turns to

codependency, yielding finally to complete dependency on those around the person with

dementia, to act as surrogates in interpreting and communicating that which comprises his or her

unique identity. According to Murray and Boyd, persons with dementia are faced with the task of

having realistic expectations for the future and maintaining a sense of self and continuity. To

maintain our socially presented self, the cooperation of others must be enlisted. It is clear that

interactions with others can positively or negatively affect the ability of the individual to

maintain and communicate their sense of self (Murray & Boyd, 2009). How is it possible for

others to provide the cooperation necessary to promote the maintenance of the socially presented

self? Furthermore, how can others manage the task of interpreting and communicating the

identity of the person with dementia when it is no longer possible for the individual to

accomplish this independently? These goals come only to fruition when we evaluate the

individuals beliefs, values and life managing techniques prior to diagnosis and subsequently use

this knowledge to decode their behaviors and actions, acting upon them accordingly, and then

monitoring the outcome to determine the accuracy of our summation, making ongoing

adjustments as needed.

Dworkin suggests we should respect “precedent autonomy”, which is predicated on the

view, that personal identity survives dementia: “if we cannot respect a demented person’s

autonomy now, we can respect the autonomous decisions arrived at before the dementia”

(Hughes, 2001). Dworkin is correct in his assessment. The fact that we cannot easily peer into

the internal dialogue of the individual with Alzheimer’s should in no way suggest that one does

not exist. We traditionally recognize personhood in part, through an individual’s ability to

outwardly articulate that personhood. What we are now realizing is that in fact, the individual,

though unable to effectively communicate in a traditional manner does still attempt to engage the

outside world. By employing the concept of precedent autonomy, we may be able to decipher

that which is being communicated now. Furthermore, if we seek out significant others from the

individual’s past, we may glean a picture of the person as he or she was prior to diagnosis. This

endeavor will surely help us to better anticipate and meet the needs of the individual more

accurately. “Personhood can only be guaranteed, replenished and sustained through what others

provide.” (Kitwood, 1993)

What is truly being discussed here is the continuation of simple respect for the individual

as a human being. In modern bioethics, Singer distinguished two meanings of human beings –

one, a member of the species homo sapiens…without regard to their degree of maturity of decay

and two, a being who possesses certain qualities such as “self-awareness, self-control, a sense of

future, a sense of the past, the capacity to relate to others, concern for others, communication and

curiosity” and that only human beings in the second sense are deserving of rights and respect

(Fu-Chang Tsai, 2001). This distinction is far too extreme. All human beings should be afforded

rights and respect, regardless of their ability to demand such. Singer’s laundry list of preferred

qualities, potentially ostracizes not only individuals with dementia, but also those with autism,

amnesia, and a full panacea of psychiatric disorders. The person with dementia does possess

these qualities to varying degrees in the early to mid-stages and it is our role to affirm and

reassure the individual that this is recognized and that they are being heard. To respect others’

autonomy requires that we make consent possible for them, taking account of whatever partial

autonomy they have. All autonomy implies adequate autonomy in human interactions, namely to

be respected by others (Nessa & Malterud, 1998).

The antithesis of Singer’s view is put forth by Kitwood, who believes the dementia

sufferer is viewed as a person in the fullest possible sense; he or she is still an agent, one who

can make things happen in the world, a sentient, relational and historical being. This has led to a

new way of conceptualizing dementing conditions (Kitwood, 1993). Kitwood made this

declaration over two decades ago, yet it continues to be the timely and appropriate view. The

diagnosis of Alzheimer’s may mitigate, but in no way eliminates a person’s participation in life.

Though the mechanics of engagement may seem foreign to the onlooker, persons with dementia

continue to exist. It may appear that they are merely existing, however they feel, share and

interact with the world around them all the same. Again it is we who must seek to find a way into

their existence through remembering that they, like all individuals continue to have needs.

Kitwood (1997) defines a need as “that without which a human being cannot function, even

minimally, as a person”. These needs are: attachment (bonds that create a safety net); comfort

(tenderness, closeness, and calming of anxiety); identity (maintaining a sense of continuity with

the past and consistency across the course of present life); occupation (involvement in the

process of life in a way that is personally significant); inclusion (a group to belong to); and love.

Our strides in medical knowledge and technology yield both blessings and curses. As

society ages, so too does the instance of Alzheimer’s increase. We clearly find ourselves at a

more informed and humane place than that of the 1940’s. The frail and confused elderly are no

longer sentenced to asylums and assessed with the same diagnostic criteria as the chronically

mental ill. In home services, adult day centers and a wide variety of specialized long term care

facilities now exist to provide for changing needs over the course of the disease process and to

attempt to lighten the emotional burden surely felt by families and other caregivers. Though

there are many challenges that come with such a devastating diagnosis, trends in our view and

treatment of person’s with dementia are evolving as well. However this area is also the one of

greatest need in the future. Continued development of appropriate assessment measures and

implementation of approaches to assist the individual with maintaining autonomy and

personhood demand our ongoing attention if we are to ensure the highest quality of life possible

for these deserving individuals. With this in mind, we must remember that, “whatever ruin and

chaos there is within the psyche, the human context will still provide enough love and stability to

make life livable” (Kitwood, 1993).

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