1-8 A Phenomenological Review of Alzheimer’s Disease: Philosophical and Psychotherapeutic Considerations
Alzheimer’s disease (AD) is a neurodegenerative disorder that currently accounts for 80% of all dementias (Smith & Bondi, 2007). Whereas rates of other dementias are declining, AD continues to grow. Although estimates vary, the risk of AD increases with age. Most believe that individuals aged 65-70 carry a 2.0% – 6.0% risk, which increases dramatically to 25.0% – 50.0% by age 85 (Glass et al., 2011). As the most populous generation in American history advances towards retirement, Alzheimer’s disease is now believed to be one of the most significant medical issues today. By 2030, when all baby boomers will be over the age of 65, AD is expected to be prevalent in 7.7 million Americans, a 50% increase from 2010 (Glass et al., 2011). As such, all current generations must reckon with the devastation AD may potentially inflict on themselves or their loved ones. Reflection on AD is necessary not only from a clinical standpoint, but from an individual level as well—one that maintains and understands that we are all likely to deal with AD at some point or another, whether from a first- or second-personal experience. Indeed, the lessons drawn in this essay are premised on the humanistic belief that attunement to the person’s experience – before his or her pathology – ought to be maintained in every encounter.
All types of dementia are due to damaged brain cells and involve a loss in memory as well as other impairments such as aphasia, apraxia, agnosia, delusions, and the possibility of other superimposed features like delirium. Dementia of the Alzheimer’s type is progressive. It first impairs subcortical regions, including the hippocampus (responsible for memory-formation), and then spreads to neocortical regions. This physiological progression accounts for the course of AD symptoms: depression and difficulty remembering new information are common early symptoms; confusion, disorganized thinking and/or judgment, and inappropriate behavior are moderate symptoms; difficulty with basic motor tasks (including speaking, swallowing and walking) and seizures are found at the advanced stage. AD also increases susceptibility for pneumonia and other infections, indirectly leading to death.
Although the symptoms of dementia of the Alzheimer’s type are well known, AD is specifically defined by the histopathologic presence of neurofibrillary tangles and amyloid beta plaques. These were the hallmark features first documented by Alois Alzheimer in 1906 (Maurer, 2000). Alzheimer described the course of a 51-year old patient whose case featured progressive dementia, hallucinations, and delusions. Through postmortem analysis of his patient’s brain tissue, Alzheimer discovered numerous senile plaques and twisted bundles of neurofibrillary tangles. This is what differentiates AD from dementias with similar clinical profiles like vascular dementia.
Although these neuropathological features continue to define the psychiatric definition of AD, other associated symptoms are now known. In the 1980s biomedical research on AD was propelled by the discovery that Alzheimer’s patients were also distinguished by deficits of acetycholine, a neurotransmitter that plays a role in memory and learning. Better known as the cholinergic hypothesis, researchers began speculating that AD is caused by neurochemical abnormalities. Although this hypothesis has been seriously challenged, the majority of pharmacological interventions are still based on it (Mebane-Sims et al., 2009; Scrapini et al, 2003). Additionally, genetic studies have revealed that individuals bearing the APOE ε4 allele have increased risk in developing early-onset AD (Glass et al., 2011).
Introduction to the Humanistic and Phenomenological Perspectives
This paper adopts a phenomenological perspective of Alzheimer’s disease, which essentially involves attunement to the patient’s lived experience. Phenomenological psychology is a clinical approach to treatment rooted in humanism, a theory that the human being cannot be reduced or studied in parts. To study human life means to appreciate it within the larger context it manifests. As such, humanism cautions against overemphasizing biomedical facts like neuropathology, and to study the context in which neuropathology appears. Further, phenomenological psychology commands attention to the lived experience of neuropathology – what it is like to experience an increasingly incoherent world – and the way in which this experience is instructive for treatment.
Historians trace the roots of humanistic psychology to the middle of the 20th century when psychology was dominated by behaviorism and psychoanalysis (Wertz, 1998). Humanistic psychology began as an alternative to a scientific model that attempted to understand human beings through abstractions divorced from lived experience (Giorgi, 1970). Davidson (1992) argues that humanistic psychology is unified with the convictions of humanism as a philosophical movement that Bullock (1985) describes as extending back to fourteenth century Italy. Davidson writes: “Humanistic psychology represents [an] echo of [a] long-standing desire to study human beings which begins with human experience and does not reduce human to non-human” (p. 15). In accordance with these movements, humanism and phenomenology are not auxiliary to the natural sciences. Rather, they are fundamental dimensions to it, serving as a reminder that experiences is inextricably linked to surrounding culture and lifestyle (Barclay, 2000).
Phenomenology is a philosophical perspective that investigates the structures of human consciousness. Inquiring about how the individual lives cannot be achieved without consideration of the broader horizon. Beginning with Husserl (1931), phenomenologists focused on the lived world, the way a person actually experiences the world, and the underlying structures that give rise to such experiences. For example, the phenomenologist van den Berg (1972) argues that we gain the most accurate impression of the individual when we ask her to describe how she experiences commonplace objects in the world.
Phenomenology contributes to knowledge of AD by providing insight into the lived experience of a world that is progressively confusing and unpredictable. In the early stages of AD, short-term memory is impaired and individuals experience difficulty finding their keys, notebooks with frustration. As memory functions worsen, AD patients experience difficulty recalling the people with whom they interact on a daily basis. The world grows increasingly unfamiliar as the patient is impaired with regards to situating new things and people in a meaningful schema. Brooke (2002) refers to this symptom as “the disintegration of narrative coherence” (p. 137) as memory impairment injures one’s ability to contextualize objects and people in the world. He writes that “[t]hings and events no longer have stories to tell, and their presence tends to become uncanny” (p. 137). Upholding humanistic values, the phenomenological tradition avoids reducing delusions to symptoms by studying them within a broader experiential context. Further, phenomenology reveals that delusions are not merely expressions of neuropathology per se but are rather efforts on behalf of the patient to establish an explanation of a world that increasingly appears confusing and frightening.
Limitations of the Biological Perspective
However much phenomenological psychology seems to capture the immediacy of Alzheimer’s disease, it is most often understood through the biomedical model and its emphasis on brain deterioration. Most likely because knowledge of AD is defined by its neuropathology, clinicians tend to interpret dementia as a psychostatic rather than psychodynamic entity. Very often clinicians are convinced that reference to neuropathology alone offers sufficient explanation of the clinical symptoms expressed. Yet this approach confuses the difficulties that are a consequence of the neuropathology with the neuropathology itself (Lanksy, 1984). However much dementia is related to the neuropathology of AD, there are other contributing factors to the symptoms patients exhibit. As Lewis et al. (1990) wrote over twenty years ago, “We certainly do not want to hearken back to outdated concepts of ‘organicity,’ in which brain damage was thought of as a monolithic entity” (p. 70). Nevertheless, such understandings of AD contribute to the misrecognition that the symptoms associated with neurological failures have nothing to do with broader psychological issues.
Emphasis on neuropathology also leads to clinical pessimism and misunderstanding. We misunderstand patients when their symptoms are treated as mere expressions of neuropathology, and not of their experience of living in a world with it. This leads to clinical pessimism where we assume little can be done to improve a patient’s psychological conditions. As such, interventions like psychotherapy appear inappropriate and futile. Lansky (1984) writes, “By and large [AD] patients are uninteresting to therapists because their future possibilities seem so small” (p. 121). Other writers have described the bleak outlook many clinicians adopt believing that AD imposes the harsh reality that, despite supportive interventions, deterioration will occur (Cheston, 1998; Hausman,1997; Lewis et al., 1990; Unterbach, 1994;). In addition to purported futility of psychotherapy, work with AD patients is especially difficult due to the countertransference that may surface for therapists, notably feelings of guilt for being mentally sound (Lansky, 1984); resentment for lack of reciprocity (Hausman, 1997); and a concerned panic that asks, “Will this eventually happen to me?” These are issues that must be identified and contained if therapists are able to meet patient’s needs – issues that ultimately cannot be addressed through biomedicine.
The phenomenological tradition contributes in providing secure and optimistic grounds for psychotherapeutic treatment. Symptoms of organic pathology reflect more than just the organic failures that underlie them. To this end, Oliver Sacks (1985) writes that a disease is more than neuropathology because it always involves a reaction by the individual to continue living his or her life (p. 6). Symptoms of a disease are never merely expressions of underlying biological causes because they are situated by an individual’s broader attempt to maintain a coherent life. Further, phenomenological psychologist Robert Romanyshyn (2012) describes how individuals suffering from Parkinson’s disease ought to first be witnessed as individuals struggling with organic impairments. Although he recognizes that a lack of dopamine is cause for motor dysfunction, all forms of behavior ought to be considered “symptoms” in Oliver Sacks’ sense of the word – expressions of a way of being in the world. A phenomenological approach to AD involves witnessing a patient’s delusions as behavior adopted to cope with the conditions imposed by the pathology. As Brooke (2002) writes, “There is always a person first, and that person is using whatever cognitive and psychological resources he or she has to understand and deal with the disintegration of a world” (p. 138). Further, as McInerney and Walker (2002) argue, human beings are more than passive input/output neural machines, and all symptoms of neuropathology are more than systemic breakdown. As much as AD is unquestionably is a result of neuropathology, the individual nevertheless compensates for the constraints placed on her life.
Towards a Phenomenology of (Demented) Selfhood
Perhaps the biggest obstacle in recognizing meaning behind AD symptoms concerns our shared assumptions about selfhood. As AD progresses it becomes increasingly difficult to recognize the patient as the same person. To many, AD represents the dissolution of characteristics that defined the individual. Books with titles like Alzheimer’s Disease: The Loss of Self (Cohen & Eisdorfer, 2002) resonate with larger understandings of AD as a disease that effaces who the person once was. For this reason, it is crucial to clarify what we actually mean when we talk about the “self.” In this section I will review key cultural assumptions and proceed to discuss how common understandings of selfhood are inadequate when confronting the AD patient.
Many writers have demonstrated that the modern concept of selfhood is situated in our broader cultural milieu. For example, Charles Taylor (1992) argues that interiority – a core feature of selfhood – is not actually inherent to the self, but rather the consequence of a historical unfolding that defines values in culturally-specific ways. Others make a strong case that the primary cause of the loss of self in AD patients is less a direct result of the disease, and more related to the ways in which others view and treat the sufferer (Sabat & Harre,1992). Further, historical analysis reveals that the symptoms of senility have been interpreted differently in various time periods. In the United States in the 17th and 18th centuries, for example, senility was an accepted fact of old age, understood as an expression of one’s ultimate dependence on community and God (Ballenger, 2006).
The phenomenologists reviewed above differentiate between distinct lived experiences of “the self,” and call for clarification about which type of “self” is threatened by AD. Dan Zahavi (2012), another phenomenologist, distinguishes what he calls the “minimal self” from the “longitudinal self.” Essentially, the minimal self refers to a person’s immediate experience of selfhood, unextended in time. The longitudinal self (also referred to as a “narrative self”) refers to a person’s experience of temporality, of being situated on a continuum between the past and future. Neurological studies demonstrate that the minimal and longitudinal selves call upon overlapping brain systems, and that the minimal self provides a neurological foundation for the longitudinal self to function (Steeley & Miller, 2005). As AD unfolds, we witness progressive degradation to the longitudinal self. In more severe stages of the disease we may glimpse the minimal self in its purity. Yet even at this stage the minimal self is constituted by its environment and is thus shown to indissolubly exist in its relationship with the world.
The phenomenological critique of the biological self is essentially against the notion that selfhood can be conceptualized as an entity composed of distinct (neurological) parts. As discussed above, phenomenologists argue that human consciousness is shaped by the world and interactions with it, suggesting that life cannot be reduced to the sum of its parts, and that neuropathology alone is inadequate to explain symptoms associated with diseases like AD. One way phenomenologists make this argument is through recourse to intentionality – prior to conscious awareness of any experience, a person must first be attuned to its presence (Husserl, 1931). As Ellis (1999) writes, meaning-intention must be in place before meaning-fulfillment can occur. Ellis buttresses his argument with recent findings within cognitive neuroscience, which suggest that, prior to the activation of the occipital lobe (which processes visual stimuli), the parietal lobe is activated by the frontal lobe (which signals what is important to be attentive to). Ultimately, Ellis argues that efferent neural activity is always presupposed and implicated to direct afferent activity, suggesting that there must be some degree of intentionality prior to the reception of sensory stimuli. In contrast to the biological conception of the self that postulates that human experience can be divided into discrete parts, phenomenologists argue for an “enactive approach” to conceptualizing mental life. Ellis (2006) writes: “The living process is not merely driven by lower-level mechanical events; on the contrary, it seeks out, appropriates, and replaces the micro-constituents… there is a top-down rather than only a bottom-up causation at work…” (p. 35). As mental life is best understood as an enactive process, the symptoms associated with AD are never mere expressions of neuropathology alone. Ellis’ findings provide a neurological framework for appreciating the phenomenology of AD – whilst avoiding the tendency to reduce symptoms to neuropathology.
Contrary to the biological model, the self is not simply comprised of the sum of neurological parts, because the self is entwined with the surrounding world. Stated differently, consciousness is constituted by one’s manner of being-in-the-world. This is one rationale for the phenomenological call to remain attuned to the experience and meaning of dementia symptoms. Whether or not the expressions of dementia correspond to reality, phenomenology shows that dementia is nevertheless an expression of one’s relationship to the world.
Phenomenological Sensibilities in Treatment
In the remainder of this essay I will outline what a phenomenological sensibility looks like in practice. I will argue that assessment and therapeutic approaches require the intervention of phenomenological psychology to ensure treatment meets the needs of patients who encounter progressive difficulty maintaining consistent engagement in the world.
The Assessment Process
Most neuropsychological assessments are administered to identify the presence, prognosis, and severity of a suspected neuropathology. Individuals who are testing for dementia are referred because of symptoms that hint of increasing impairment in daily life. It is important to be attuned to how disintegration of the experienced world is present even in early stages of AD. While the assessment is administered to verify the existence of dementia, the experience can become distressing and threatening. For most, the possibility of being told one has AD may be equivalent to being dealt a death sentence.
Some writers suggest that pre-adjustment counseling should be provided to meet a patient’s concerns (Cheston, 1998). The need for a phenomenological approach to assessment grows larger as developments advance for screenings for AD. In the last decade practitioners have the opportunity to screen for genetic susceptibility of specific chromosomes and alleles known to increase the risk for early-onset AD. More recently, the Alzheimer’s Association proposed significant changes from the 1984 diagnostic criteria adhered to today (Albert et al., 2011). A new “preclinical” diagnostic stage of Alzheimer’s based on the presence of biomarkers will lead to issuing diagnoses prior to the development of cognitive impairment. This diagnostic shift is intended to serve research purposes, but it will undoubtedly influence clinical practice (Carrillo et al., 2013). From the clinical perspective, it is assumed that earlier diagnosis entails earlier clinical interventions. Yet we should question the implications of this approach. Receiving a “preclinical AD” diagnosis may not be clinically advantageous since no medical treatment halts the progress of AD. At best studies suggest that medicine is able to temporarily delay symptom development for six months. Preclinical diagnoses will likely carry social-psychological implications. Advancements in the assessment process show a greater need to be attentive to the humanistic sensibilities outlined below.
Typically, neuropsychological assessments invite the participant to undergo a series of performance-based tasks, and attempt to identify areas of cognition that are impaired. The information-gathering model of assessment has a goal of collecting data that will subsequently inform decisions made for clients. This is compared to the phenomenological model of assessment, which has a goal of producing positive change in the clients, by presenting the assessment experience as a positive therapeutic experience in itself (Fischer, 1994).
Writers in the phenomenological tradition maintain that both models are complementary, yet many clinicians are omitting vital opportunities for supporting the patient by merely focusing on identifying information about cognitive impairment (Finn & Tonsager, 1997). If the purpose of assessment is to assist patients to regain their health, causal explanations provided by assessments do little to practically assist people to re-engage with the world (McInerney & Walker, 2002). As Brooke (2002) writes, psychological assessment done well helps the patient feel understood, not simply categorized. The phenomenological approach to assessment instructs us that the point of assessment is to help individuals continue living their lives by categorizing impairments while identifying remaining capacities. The clinician’s awareness of the ordinary tasks that have recently become difficult provides a glimpse of how the patient lives in response to neuropathology.
McInerney & Walker (2002) advocate what they term “neurophenomenological assessment” as a practical method premised on explanation and description of the patient’s life world, correlated with neurological findings through test results. They argue that this collaborative approach moderates the dangers of neurological reductionism while inviting patients to contribute to their own assessment formulations and treatment recommendations. This approach reminds us that a warm and collaborative atmosphere helps clinicians gain necessary knowledge of a patient’s daily experiences (Cheston, 1998; McInerney & Walker, 2002). For example, inquiring about the “when/ when not” a patient experiences symptoms helps both parties identify what contexts are particularly impacted (Fischer, 1994). This approach also encourages clinicians to translate abstract and technical information into a concrete description of how the patient lives his or her life. Assessment reports include life world descriptions and remains individualized to capture how neuropathology impacts daily functioning. Further, including an additional diagnosis of adjustment disorder helps remind future care providers that the patient is more than underlying neuropathology (Brooke, 2002; McInerney and Walker, 2002;).
The Psychotherapeutic Process
Historically, the presence of dementia typically contraindicated psychotherapy. Freud (1924) considered psychoanalysis inappropriate for older people because he believed modifications to one’s character were unlikely to occur in late stages of life. This assumption has generally been assumed for the geriatric population and underlies the major reason why psychotherapy is considered inappropriate for patients living with AD. Yet research suggests that elderly individuals who undergo psychotherapy have a comparable, sometimes better, outcome than younger patients (Garner, 2003). With regards to AD, many authors describe the pessimism that pervades the clinical sphere (see, for example: Lansky, 1984; Unterbach, 1994): despite supportive interventions, AD is progressive and patients inevitably decline.
For this reason, it is important to be aware of how individuals respond to the social responses to their diagnosis. Individuals suffering with AD are prone to withdraw and isolate themselves, perpetuating secondary symptoms, including the possibility of more severe dementia. Butler (1963) challenges us to distinguish between endogenous depression due to the life review process versus the form of depression that is hypothesized to be induced by neurochemical changes associated with AD. The injuries caused by AD may induce psychological issues that ought to be dealt with through psychological measures. Given the treatment options of working with demented patients, the affective conditions of AD may be equally as important as the neuropathological ones.
It is precisely because we have grown so pessimistic in the treatment of AD that phenomenological psychology – attunement to the lived experience of dementia – becomes instrumental. The phenomenological approach suggests that all individuals – including patients in different stages of AD – may benefit from psychotherapy so long as the treatment is tailored to their specific needs and limitations. The phenomenological tradition reminds us that human beings must be prioritized before abstractions are made to conceptualize them. Clinicians should not prioritize theory of neuropathology before the lived experience of it because psychology is a human science that differs from the explanatory framework inherent to the natural sciences.
Today’s clinical pessimism is rooted in a confusion of these two models of science; often clinicians mistakenly believe that psychotherapy is suitable only for individuals who have a hope for a future because we are implicitly formulating explanatory assumptions that have more to do with theory than with the existential facts of the lived world. Instead, a phenomenological approach brings recognition that the individual with dementia has psychological as well as physical needs, contending with impact of living with AD and the social consequences of the diagnosis.
Most writers on psychotherapy for AD stress the importance of working within the larger family or institution within which a patient is situated. Indeed, if psychotherapeutic work is to be long-term it can only occur within the larger institutional systems that can provide medical and psychosocial support for the patient (Cheston, 1998). Family therapy is one step towards resolving preexisting family issues which often become intensified through the onset of a family member’s dementia (Lansky, 1984). By having an opportunity to talk about their difficulties, family members may begin to address problematic role assignments and other assumptions made about the demented family member. There are solid grounds for treating dementia through a systemic approach: Addressing how one’s family, friends, and other individuals respond to the patient certainly works in improving the patient’s quality of life. Yet while the social consequences of dementia contribute to related psychological issues, if taken on their own, a clinician risks failing to address the dementing process as it occurs from a first-person perspective. Ultimately, discussing how roles are negotiated within one’s family does not address the individual-existential concerns that a terminal illness is likely to engender.
A different dilemma exists when a dyadic approach to psychotherapy is taken. Although there exists scant literature on individualized psychotherapy with AD patients, some writers have advocated its use (Cheston, 1998; Gabbard, 2005; Hausman, 1997; Untrbach, 1994). They conceptualize AD through a psychodynamic model, postulating that dementia progressively weakens ego resources and the effectiveness of defenses. Psychotherapy is believed to center on the function that the therapist serves as an “auxiliary ego,” essentially replacing the patient’s agency that progressively diminishes through the course of dementia. As an auxiliary ego, the therapist serves to perform what the patient experiences difficulty doing him or herself, like remembering a specific word or summarizing what occurred last session. Essentially, the therapist in this role articulates the feelings and thoughts that are difficult to communicate for the demented patient. These authors also suggest that other considerations must be made when working with dementia, such as providing more frequent and shorter sessions, scheduling sessions at most productive time of day, encouraging patients to keep a notebook to record events, and more tailored approaches. This approach to treating AD provides an opportunity for the patient to feel emotionally understood. Circumventing the experience of losing one’s words and recent memory helps the patient avoid the concomitant frustration caused by AD. This therapeutic relationship also has the potential to facilitate exploration of larger existential issues, such as the reminiscence process (Butler, 1963).
This said, a narrow focus on the therapeutic relationship minimizes the extent to which dementia impairs a patient’s larger social world. The concept of the “auxiliary ego” also carries a risk of infantilizing patients by viewing them as individuals who cannot form judgments for themselves. Often when the auxiliary ego is discussed, it is likened to developmental models of early life where children are unable to identify what they want and how to achieve it. Ultimately, the psychodynamic approach is beneficial, but ought to be practiced with caution. As Wertz (1998) argues, the psychodynamic approach is congruent with a phenomenological sensibility insofar as its assumptions are recognized as theoretical “scaffoldings” and not mistaken as actual facts of psychic life. This applies to work with AD patients: theory about a “weakened ego” may be useful when orienting one’s work as a therapist, but the theory must be secondary to the observational facts of the patient’s life as it is lived in the world.
Both dyadic and social interventions in tandem are beneficial, and are best practiced with phenomenological attunement to lived experience. Phenomenological considerations are important concerning all levels of dementia, but especially in end-stage situations where language is significantly impaired. This moment in the disease provides a poignant illustration of how theory about ego functioning ultimately loses ground, and attunement to a patient’s being-in-the-world is vital to therapeutically meet needs that are difficult to express.
The tendency to think biologically about AD impedes consideration for the psychological meaning it inextricably carries. Recognition of the limitations of the biological perspective helps foster awareness that symptoms express a way of being beyond underlying neuropathology. Phenomenology appreciates symptoms like delusions – not for their discontinuity with the shared world – but for how they are expressive of an increasingly confusing one. Phenomenological psychology maintains that concrete description supersedes causal explanation because abstractions are inevitably inadequate to meeting the direct needs of patients. The phenomenological approach to AD requires flexibility and a capacity to engage with patients on levels that are appropriate to their psychological capacities.
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