by Edmund Howe, MD, JD
Dr. Howe is Professor, Department of Psychiatry, Director, Programs in Medical Ethics, and Senior Scientist, Center for the Study of Traumatic Stress, Uniformed Services University of the Health Sciences, Bethesda, Maryland.
Innov Clin Neurosci. 2011;8(7):18–25
Funding: There was no funding for the development and writing of this article.
Financial disclosures: The author has no conflicts of interest relevant to the content of this article.
Key words: Dementia, Alzheimer’s nonmedical, caregivers, quality of life, initiatives, end-stage disease
Abstract: This article reviews some nonmedical interventions that psychiatrists and other clinicians in the field of neuroscience can provide to their patients with dementia. The author discusses how clinicians can help patients and their caregivers understand the diagnosis causing the dementia (whether it be Alzheimer’s, traumatic brain injury, Parkinson’s disease, or vascular dementia) and help them to set realistic expectations of the treatment process for the patient and his or her loved ones. The author also reviews how clinicians can help caregivers modify their interactions with the patients when required to enhance not only the quality of life for the patient but the quality of life for the caregiver as well. Finally, the author reviews how clinicians can take on new initiatives that may help both the patients with dementia and their loved ones/caregivers when the patients are at the end stages of their disease.
Introduction
When treating a patient with dementia, the psychiatrist can help the patient and his or her loved ones immensely by providing nonmedical interventions or by referring the patient to others who can provide such interventions.[1] Essentially, providing nonmedical interventions to a patient with dementia can be done during any stage of the dementia.[2] Nonmedical interventions can be very important to a patient suffering from dementia because medications, unfortunately, still only offer limited benefits.[3–12] According to Powers,[13] “…[W]e can take these successes and the very real benefits [of nonmedical approaches] that many of us have seen and create a road map that shows where this journey can take us, if we dare to embark.”
Making the Diagnosis of Dementia
First suspecting dementia. The psychiatrist may be the first healthcare provider to suspect dementia in a patient, but making the initial diagnosis of what is causing it may be difficult. A patient may initially present with what appears to be a functional psychiatric disorder. For example, signs and symptoms of dementia can appear very similar to signs and symptoms of depression, and differentiating the two can be difficult.[14–17] Dementia has even initially appeared as schizophrenia.[18]
When dementia is actually depression, or vice-versa, some general guidelines may be applied to help distinguish the two. Patients who are classically depressed may be more likely to complain about their memory, may show less effort during formal testing, and may be more likely to come in for appointments alone.19 Contrariwise, patients with dementia classically may be more likely to come to their medical appointments with their partner and to look to their partner prior to answering the psychiatrist’s questions.[19] They also may be more likely to refuse interventions that others might not,[19] which may be because they do not want others to know that they have impairments. These guidelines certainly cannot be applied to every patient. For example, a patient I treated with dementia continued to come to his appointments with me alone for as long as he could, as a simple matter of pride.
Confirming the presence of dementia. A psychiatrist’s special expertise and experience may enable him or her to suspect dementia more quickly than another healthcare professional. When the psychiatrist does suspect dementia, he or she should first determine with as much certainty as possible whether it is true dementia or whether the impairments can be attributed to another medical condition (e.g., depression). Once the psychiatrist suspects (from the patient’s and/or others’ reports) that the patient may have some form of dementia, the psychiatrist may want to tell the patient the potential benefits and risks of doing further testing (e.g., the benefit of acquiring earlier treatment versus the risk of knowing with much more certainty the nature of the disorder and, perhaps, its dire prognosis).[20] While most patients will most likely want the further testing, by asking a patient first before proceeding with additional testing the psychiatrist respects the patient’s autonomy to a greater extent. This may also enhance the psychiatrist/patient relationship in the long run, regardless of what the patient initially chooses.[21]
Utilizing assessment tools. If the patient agrees to further testing, the assessment tools the psychiatrist uses to assess the patient is according to the psychiatrist’s own discretion.[19] Many psychiatrists, however, utilize the Mini-Mental Status Exam (MMSE),[22] in part because it is a well-established tool and they are familiar with it. Some experts strongly advocate, however, using the Montreal Cognitive Assessment Exam (MoCA).[23] Jain[24] recently presented a study in which the MoCA detected cognitive deficits in patients with depression better than the MMSE. The MoCA can be obtained, with instructions for administering it, online.[25] It takes about the same amount of time as the MMSE to administer. It can be adjusted to take into account a patient’s years of education and has a version for patients who are blind.[25] Important to note: When the MoCA was presented at the American Psychiatric Association’s annual meeting this year in Hawaii, participants in the session who were familiar with the tool recommended that when administering the clock drawing part of the assessment, a whole, blank sheet of paper should be provided to the patients because the spot provided in the test is too small.
Making the diagnosis—what is causing the dementia? Next, it may be helpful to a patient if, once the presence of dementia is ascertained, the psychiatrist determines the specific cause of the dementia. Dementia may be caused by more than 100 different disorders. Thus, the testing required may vary depending on the disorder(s) the patients’ signs and symptoms suggest.[20] This additional testing most often includes a neurological and physical exam; further memory and neuropsychological tests; laboratory tests, particularly a complete blood count (CBC) with differential, thyroid, B12 and folate, fasting chemistry, sedimentation rate, and urinalysis; and neuroimaging.
Psychiatrists may detect causes of dementia that can be reversed.[19] For example, obstructive sleep apnea can cause problems with cognition, memory, and attention. All of these symptoms often disappear when normal sleep is restored with appropriate treatment.[19] Another possible diagnosis is vascular dementia.[26] Psychiatrists can help confirm a diagnosis of vascular dementia by using the Hachinski scale, which measures the signs and symptoms of vascular dementia.[27] Signs and symptoms of vascular dementia include abrupt onset, fluctuating course, a prior stroke, focal neurological abnormalities, stepwise deterioration, and preservation of personality.[28] If a patient has vascular dementia, he or she may benefit from treatment or prevention of other comorbidities that contribute to the dementia, such as hypertension and diabetes, because treatment of these comorbid conditions may slow the progression of dementia or even prevent it (e.g., by preventing small strokes). Important to note, however, is that vascular dementia and Alzheimer’s disease (AD) can occur together. In one study, they co-occurred in 40 percent of the patients studied.[27]
Helping Patients and their Caregivers Understand Patient Behavior
Psychiatrists who are taking steps to detect dementia (or significant cognitive deficits) may help patients and their loved ones gain greater understanding of why the patients may be displaying certain behaviors. Loved ones who do not understand why a patient is behaving the way he or she is may react negatively to the patient, and this may cause the patient’s behavior to worsen. A patient with dementia, for example, may lose impulse control. A caregiver not knowing about the dementia nor understanding the nature of the disease may attribute the impulsive behavior to the patient’s volition, and thus blame the patient.
Analogous changes may be more subtle, but no less destructive. A patient with dementia may begin to show what appears to his or her loved ones as a lack of empathy.[29] The patient’s lack of empathy may directly reflect underlying deficits or may come about indirectly (e.g., loss of the ability to accurately “read” other people’s facial expressions or show empathy in his or her own facial expressions). Others may misinterpret this apparent lack of empathy as a sign that the patient no longer cares, which can negatively impact the patient and those around him or her.
Likewise, a patient with dementia may show exaggerated, inappropriate laughing and/or crying (e.g., pseudo-bulbar palsy).[30] The patient’s loved ones may misattribute this laughing to the patient being newly insensitive or misattribute the patient’s weeping to insensitivity on a family member’s part. Foy et al[31] describe a case of a 44-year-old woman, who happened to be a psychotherapist, who had “inappropriate” episodes of laughing with her patients due to idiopathic Parkinson’s disease. Before she was treated successfully, she felt ashamed, feared she would lose her patients, and avoided her family and friends.[31]
Finally, loved ones may misattribute apathy associated with dementia to laziness. They may respond to the patient in negative ways, ranging from outright hostility to distancing themselves from the patient. This risk may be increased when a patient’s dementia is due to Parkinson’s disease because the patient may have motor slowing and the patient’s loved ones may not know that dementia so often, especially over time, is present in this disease.[11,32]
Psychiatrists detecting impulsive behavior and inappropriate expression of emotion can educate the patient and the caregiver on the disease and by doing so help them to understand that the behavior is likely due to the disease, not the willfulness of the patient. This understanding can break the potentially ever-expanding, vicious cycles of negative reactions by the patient and the caregiver to one another.
Helping Patients and their Caregivers Have Realistic Expectations
A patient with dementia and his or her caregiver may retain certain ambitions for the patient that he or she no longer can meet. The discerning psychiatrist can help both parties better understand the patient’s new limitations and aid in re-setting their expectations accordingly. Detecting and addressing newly emerging limitations in the patient is particularly important because cognition issues are not always obvious. For example, a patient with a substance abuse problem and/or human immunodeficiency virus infection brought about by drug-associated behavior[29,33–38] may no longer be able to carry out some related responsibilities due to poor memory and difficulty sustaining attention. In a case like this, it would be important for the caregiver to understand that this lack of attention to these responsibilities by the patient is due to the patient’s disease state and not to the patient’s choosing to do or not do certain things.
When treating patients with dementia, the psychiatrist can help the patient and caregiver establish more realistic expectations about what the patient can and cannot do due to cognitive limitations. This may be the case even when a patient has cognitive deficits that may improve, such as those caused by a traumatic brain injury (TBI). For example, let’s say a smart, college-aged woman suffers a TBI and subsequently has significant memory and executive deficits. She decides she would like to resume college and then enter medical school. Her parents support this decision. To tell her and her parents bluntly that it is likely she will not succeed in this plan in her current state, at least not now, most likely will provoke resistance and conflict in the patient and her family. Thus, the psychiatrist and other specialists involved in her care might suggest to her and her parents that they take her reintroduction into college one step at a time by first enrolling in a single course at a local community college to “test the waters” and go from there. The family is given the opportunity on their own to modify their expectations.[39]
The psychiatrist should follow the same basic principle when a patient has dementia due to Alzheimer’s. The psychiatrist can advise the patient and his or her loved ones to generally take things one step at time, which allows them, as a team, to decide what to do and when to do it, one event at a time.
Responding Optimally to Patients with Dementia
Powell[13] describes optimal approaches caregivers can carry out at home that psychiatrists can teach them. According to Powell, if a patient has problems with his or her memory, those around the patient should avoid asking the patient questions that will require him or her to remember something. Asking the patient a question that requires remembering something may trigger in the patient awareness that he or she cannot remember, which may cause the patient to feel shame, and it places a burden on the patient of still having to respond to the question, even without remembering. Powell suggests that caregivers rephrase what they say to the patient. For example, rather than ask, “What did you have for lunch?” the caregiver could say, “I hear you had lasagna for lunch.” Powell also suggests always giving the patient a choice. For example, the caregiver can ask, “Is this okay?” rather than, “Do this.”[13]
Caregivers may fear that if they always provide the patient with a choice, they are giving the patient the option of saying no, which may result in a self-fulfilling prophecy of nonadherence and difficulty in the patient. The skilled psychiatrist knows better, however. Clinical experience suggests that when a psychiatrist asks a patient if he or she feels suicidal, simply asking the question reduces the risk of suicide, rather than increases it.40 The same principle can be applied to treating a patient with dementia.
Let’s apply this intervention technique to giving a patient with dementia a bath. First, the caregiver explains each step of the bathing process prior to doing it. Second, the caregiver asks the patient if he or she understands the process. The caregiver can best do this by asking the patient to repeat to the caregiver what he or she just said, as opposed to just asking the patient, “Do you understand?” (The patient can respond to the latter question, of course, by just being “compliant,” and simply saying,“Yes.”) Third, the caregiver asks the patient if he or she accepts what the caregiver wants to do. If the patient says no, the caregiver then, rather than becoming forceful, asks the patient, “Why?” The patient then responds to this before the caregiver proceeds.[13]
Another example of giving the patient choices is giving the patient a “forced choice,” as opposed to asking the patient more open-ended questions. In other words, the caregiver gives the patient a choice between, say, two or three options, as opposed to giving the patient the harder task of coming up with what he or she wants on his or her own. For example, the caregiver might ask the patient, “Would you like a ham sandwich or a turkey sandwich?” rather than, “What kind of sandwich do you want?” Extrapolating this forced choice approach to patients who will not bathe, the caregiver might ask, “Would you like me to wash your hands first or your face?” [Emphasis added].[13]
Gitlin[41] recently reported on pioneering work she and others have carried out teaching caregivers how to make physical changes for these patients in their homes. The caregiver, for example, can help the patient greatly by taking such simple steps as clearing clutter from the pathway the patient usually takes to go to the toilet and by laying the patient’s clothes out in advance on the bed before he or she gets dressed. These interventions have been shown empirically to reduce both the costs of caring for the patient and the time spent by the caregiver caring for the patient.[41] These interventions can also help a patient no matter how severe his or her MMSE score is.[2,41,42] Research shows that giving a caregiver more personal time helps both the caregiver and the patient. It can improve the relationship between the caregiver and patient, which in turn has a positive impact on the patient and may allow the patient to live at home longer before requiring full-time care at a nursing home.[43]
Holwerda[44] recently presented new findings that showed that not being alone but feeling alone may increase a patient’s risk of developing AD.[44] With this in mind, the psychiatrist should research evidence-based interventions the caregiver can use at home, such as the ones described here, and then educate the caregiver regarding these interventions. Not only will this help the caregiver care for the patient more effectively, but perhaps may also help the patient feel less alone.
Helping Patients and their Caregivers with End-of-life Issues
Rabins, coauthor of the well-known book, The 36-Hour Day,[45] recently presented three recommendations that may change what some psychiatrists currently do in their care of patients with dementia.[46] First, he recommends that patients with dementia not issue advance directives, a document prepared by the patient that indicates with some specificity what interventions the patient would and would not want if and when the patient loses the capacity to express his or her desires regarding treatment. Presently, many clinicians believe that they should encourage all patients to issue advance directives. It is presumed that doing this respects a patient’s autonomy to the greatest degree. By enunciating advance directives, the patient has greater opportunity to influence what care he or she receives later in life. This also helps the clinician decide how to treat the patient later in life. Rabins states, however, that many patients issuing advance directives change their minds later and that patients with AD, due to their dementia, may be unable to express a desire to make a change regarding their own treatment.[47] For example, a patient may view dialysis as “worse than death” when he or she is healthy, but then have a change of heart at a later time and be willing to undergo dialysis.[48]
Another example might be the patient who issues advance directives, but then later wishes to modify some directives to accommodate his or her loved ones’ concerns. In other words, that patient, later in life, may give more weight to certain issues that may cause distress in his or her loved ones, and will adjust treatment choices accordingly.[49] A patient with dementia may be incapable of expressing this desire to make this change in treatment. Thus, Rabins suggests, the clinician should encourage the patient, while still cognitively able, to designate a surrogate decision maker to make decisions for him or her rather than issue advance directives.
If a patient moves forward with designating a surrogate decision maker, the psychiatrist should ask both the patient and the potential decision maker to carefully consider how assuming this role will affect both of them and their relationship together. For example, a loved one who has been designated as the decision maker may unconsciously distance him- or herself from the patient in order to protect him- or herself from later emotional stress. The patient may then want to consider designating someone not as closely related to be the decision maker.
Rabins states that another factor to consider is that often those who are assigned the role of decision maker may later “feel bad” about decisions they made, regardless of what they decided, even when advance directives were in place.[47]
Rabins’s assertion above (as his others) is wholly sound. In one review of 40 studies and 2,854 people, nearly one-third of surrogate decision makers indicated that their emotional burden from making treatment decisions was “substantial,” and it lasted, in some cases, several years. Chief among these negative feelings was guilt and doubt over whether they had made the best decisions.[50] Loved ones of patients with TBI may experience this also, even when “a pathological response is not present.” [Emphasis added].[39] They may feel “grief, anger, guilt, and even denial” even 20 years later.[39]
In light of this, Rabins suggests that the psychiatrist support the surrogate decision maker as much as possible. This last suggestion may go against some psychiatrists’ beliefs that they should remain “value neutral.” Clinicians abandoning their more traditional “neutrality” by making recommendations is, for both the patients and their loved ones, sometimes problematic.[51] I suggest, nonetheless, that psychiatrists give future surrogate decision makers the support Rabins recommends by indicating to them well in advance that whatever decisions they make later on will be right. The psychiatrist can forewarn the decision maker that likely he or she will at some point second guess his or her decisions. If this occurs, the decision maker must remember that he or she could only do then what he or she deemed best. When the psychiatrist says this to the decision maker in advance before his or her duties as the surrogate decision maker are needed, this may give this truth greater weight if and when the time comes.
Conclusion
Psychiatrists can help patients with dementia and their caregivers by using their unique skills in several nonmedical ways. The psychiatrist may be the first clinician on the scene to suspect dementia in a patient, and once a diagnosis is sufficiently established, the psychiatrist can help both the patient and his or her loved ones understand what the patient is experiencing, as well as help them all set realistic expectations moving forward. As the dementia progresses, the psychiatrist can help the patient’s caregiver learn optimal, new approaches for managing the patient that will maximize the care the patient receives and ease the burden on the caregiver.
The psychiatrist can also ask the patient with dementia early in the disease process who he or she would like to designate as his or her surrogate decision maker when the time comes that the patient is no longer able to determine a course of treatment. Establishing a surrogate decision maker may help the patient more in the long term than establishing advance directives because eventually the patient may be unable to express a potential change of heart regarding a pre-established treatment regimen. The patient and the potential surrogate decision maker should consider the decision to assume this role carefully, as it might negatively affect their relationship with one another and potentially cause high levels of stress and guilt in the surrogate decision maker after the patient dies. With this in mind, the psychiatrist should then verbally recognize the emotional difficulties the surrogate decision maker potentially may encounter and should provide him or her with the support he or she may need before the time comes.
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