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.

Psychiatry (Edgemont) 2009;6(11):40–47


There are several treatment initiatives a psychiatrist should consider when treating a patient with Alzheimer’s disease. The author discusses five treatment initiatives in the order in which they tend to arise during the illness progression of a patient with Alzheimer’s disease: screening for Alzheimer’s disease, providing information to patients on nonevidence-based treatments of Alzheimer’s disease, assisting patients with contacting loved ones as the disease progresses, confronting patients with difficult decisions, and discussing moral concerns of the patient with his or her loved ones. Case examples and a review of literature are also provided.

Key Words

Alzheimer’s disease, moral dilemma, caregiver, treatment initiative


When a psychiatrist treats a patient with Alzheimer’s disease (AD), there are several treatment initiatives the psychiatrist should consider. These initiatives may be particularly important if the psychiatrist has an established, trusting relationship with the patient or the patient’s loved ones, because the psychiatrist may be the only care provider who is able to “successfully” carry out certain tasks. In other words, the psychiatrist may be the only person in the patient’s life who is trusted enough to approach certain difficult issues with the patient, such as the need to discontinue driving a car or move into a nursing home.

In this article, I discuss five treatment initiatives in the order in which they tend to arise during the illness progression of a patient with AD: screening for AD, providing information to patients on nonevidence-based treatments of AD, assisting patients with contacting loved ones as the disease progresses, confronting patients with difficult decisions, and discussing moral concerns of the patient with his or her loved ones.

Screening for AD

When a patient presents to the psychiatrist with concerns of poor memory, the psychiatrist may want to screen the patient formally for AD. The psychiatrist may also want to screen the patient for AD if a patient’s loved ones report that the patient’s behavior has recently changed. Doing the screening as early as possible in the disease process may help the patient significantly.[1,2] For example, if the patient does actually have AD, a trial of a cholinesterase inhibitor may be started right away.[3] A patient might also benefit from the knowledge of having AD because he or she will have a better opportunity to plan for the future while he or she is still capable of such. More importantly, this early screening and subsequent knowledge of the disease may enable the patient to better choose what he or she can do to maximize the quality of his or her life while he or she still can.

Some patients who present with memory problems, however, may prefer not to know whether or not they have AD, even if fully informed of the screening process and the benefits of early diagnosis of the disease,[4,5] and psychiatrists should allow them this option.[2,6] Therefore, psychiatrists may take initiative to ask all of their patients who present with memory problems whether or not they would want to know if they have AD prior to conducting this screening. Several arguments favor this.

First, in many other cultures, physicians do not always tell patients when they have fatal illnesses. The principle of autonomy is not given the priority to the same extent as it is in the United States.[7] According to Akabayashi et al,[8] “In many countries around the world, the cancer diagnosis is not routinely disclosed to the patient. For example, the practice of nondisclosure is reported to occur in many countries in Eastern and Southern Europe, the Middle East, Africa, Asia, and other parts of the world.” Akabayashi et al go on to describe Japan as an example: “Ultimately, without the family’s consent for disclosure, a large number of physicians feel there is no alternative but not to disclose the diagnosis fully and to deceive the patient if asked directly.”[8] [Emphasis added]

In the past few years, attitudes and practices have shifted more toward truth-telling.[7] Patients may have different preferences, however, even when they share the same culture.[9] Asking patients about their preferences regarding disclosure of truth may optimally respect the patients, though they may benefit more medically from disclosure, even when they have Alzheimer’s disease.[10] This practice has been referred to as obtaining “advance directives for truth disclosure.”[10]

Present ethical thinking supports this. Beauchamp and Childress, for example, are widely recognized authorities in medical ethics. They say in their latest (2009) ethics text, ”…[S]everal studies reflect a misinterpretation of what the principle of respect for autonomy and many laws and policies require…A fundamental obligation exists to ensure that patients have the right to…accept or decline information.”[11]

Second, patients may benefit from not knowing that they have AD by enjoying a better quality of life for a longer time. This may be because they are able to proceed with their lives in a more normal fashion believing that their memory problems are simply due to getting older.[12]

Third, even if a patient wants the screening for AD, he or she may appreciate the psychiatrist offering the option of declining the screening. When a psychiatrist respects a patient’s autonomy in such a way, it may have deep and long-lasting positive effects on the physician/patient relationship. A patient may infer, for example, that his or her psychiatrist strongly values the patient retaining greater control over his or her life. A patient trusting the psychiatrist with the idea that the patient has greater control may benefit the patient immensely, especially later on in the course of the illness.

In addition to the psychiatrist, family members and other loved ones should also give the patient with AD as much control as possible over his or her own life. As the patient’s illness progresses, loved ones should ideally constantly try to determine what the patient can still do on his or her own, and, based upon this, enable the patient to do all he or she can. For example, the spouse of a patient with AD can perform the preliminary task of laying out the patient’s clothes on the bed each morning, enabling the patient to dress him- or herself. Likewise, the spouse can ensure that the clothing is easy to put on (e.g., pants and shirts with no zippers or buttons). The patient can continue to dress him- or herself each day, which helps the patient retain self esteem.

Informing Patients of Nonevidence-based Treatments

Once the psychiatrist has made the diagnosis of AD, or even minimal cognitive impairment (MCI), he or she may face the question of what nonevidence-based treatments should be given to the patient. When a patient has MCI, for example, some psychiatrists might prescribe a cholinesterase inhibitor, whereas others would not.[13–15] If a psychiatrist would not prescribe a cholinesterase inhibitor to a patient with MCI, there is a treatment initiative the psychiatrist should consider. Namely, the psychiatrist could tell the patient with MCI that although he or she will not prescribe a cholinesterase inhibitor, there are other psychiatrists who might. The patient then can decide for him- or herself whether or not to pursue this intervention. The psychiatrist could take it a step further and help the patient find a psychiatrist who offers this nonevidence-based intervention.

This same ethical dilemma may also occur later in the course of illness. For example, the psychiatrist may not know whether or not to treat a patient with AD for depression.[16,17] Depressive symptoms may co-occur with dementia at rates that have been reported to be as high as 60 percent.[18] Yet when the presence of potentially treatable depression is uncertain, the psychiatrist may have difficulty deciding whether he or she should give a patient with AD an antidepressant.[19,20]

Some psychiatrists may; some may not. Here again if the psychiatrist does not prescribe antidepressants to patients with AD, he or she can tell the patient that if the patient wants to be treated with an antidepressant, there are other psychiatrists who offer this nonevidence-based intervention, and then offer to help the patient find such a psychiatrist.

Although psychiatrists have an obligation to try to help their patients as much as they can, respecting the autonomy of patients with AD and giving them more control by taking this initiative may, at the same time, pose greater risks. One patient I treated with AD who was depressed said, for example, “I’d want anything if it could make me feel better.”

During the last stages of illness for patients with AD, psychiatrists may also struggle with whether or not to give these patients antipsychotics. For patients with AD, these medications have a black box warning. Yet, psychiatrists may want to prescribe them nonetheless.21,22] For example, a patient with AD may become aggressive. An antipsychotic may be the only medication that will curb this aggression sufficiently to enable the patient’s loved ones to be able to continue to care for him or her in the home.[23] If a psychiatrist would not use antipsychotics in this type of situation when other medications have not worked, the psychiatrist could again take initiatives analogous to the examples above involving screening and the use of antidepressants. The psychiatrist could inform the patient and his or her loved ones that while he will not prescribe an antipsychotic to a patient with AD, there are other psychiatrists who will, and again, the psychiatrist might offer to help the patient or spouse find a psychiatrist who will prescribe an antipsychotic.

Contacting Long-Lost Relatives

A third treatment initiative a psychiatrist might want to consider exploring with a patient with AD is whether or not there are loved ones with whom the patient has lost contact and with whom he or she may wish to communicate. Efforts to locate lost loved ones are surprisingly successful. One group seeking to do this found a patient’s family who had not known where the patient was for 41 years.[24] Of course, when the location of such loved ones is known, this task may be much easier. Psychiatrists can offer to contact the loved one(s) on the patient’s behalf.[25] The loved one(s) may agree to meet with the patient, either in person or by phone. The loved one may agree to a reunion, even after previously vowing to never speak to the patient again.

It is important for the psychiatrist to consider taking on this initiative early in the patient’s illness. This is because a patient’s ability to remember loved ones will diminish over time, and even if a patient with AD is reunited with a loved one, he or she may not remember the loved one very well or at all later on. I once arranged a meeting between a patient with AD and his brother, whom the patient had not seen for 30 years. They conversed and, thereafter, stayed in touch. Now, years later, this same patient recognizes only his wife.

A psychiatrist can infer a patient’s desire for a reunion with a loved one from many signs. The psychiatrist, for example, may observe the patient smiling as he or she describes good times he or she had with the “long lost” loved one. A patient may do this when reminiscing. Reminiscing is, of course, one of the best ways a psychiatrist and others can continue to relate to the patient with AD most meaningfully. This is increasingly true as the illness progresses.

The psychiatrist should first obtain the patient’s permission to contact the loved one. Then, once contact with the loved one is made, the psychiatrist can say, “I need your help. You, and only you, can do for my patient something I cannot.” The psychiatrist then can add that he or she wants to be sure that the loved one knows that even if he or she decides to leave or hang up immediately after reuniting with the patient, the psychiatrist will still be exceedingly grateful to him or her. The psychiatrist can explain that he or she would feel grateful because in spite of emotional risk the loved one may feel, the loved one has tried to reconnect with the patient. Psychiatrists choosing to take this initiative should be prepared to go as far as possible to try to bring these reunions about. For example, one patient’s sister agreed to see a patient I was treating only if I brought him to her house and would leave the house with the patient if and when she gave me a pre-arranged signal.

When patients with AD are in earlier stages of the disease and can comprehend and use advice, psychiatrists can advise them on what, when first reuniting with a loved one, they optimally should do. For example, if while reuniting, the topic of why a patient and his or her loved one became estranged comes up, the patient should strive initially to hear the loved one’s point of view. Both can be informed before they meet that throughout the meeting they should both try to understand and identify with each other’s view and try to remember times when they had positive feelings for each other.

These reunions may occur when the patient with AD has progressed in the disease and is unable to use this advice. The psychiatrist can still help, however, by counseling the loved one(s) during the reunion on how best to relate to the patient. For example, the loved one(s) should move slowly and speak softly around the patient to appear as nonthreatening as possible to the patient. The loved one should also try to smile, and if the patient is receptive, touch the patient.[27] The psychiatrist might also suggest that the loved one not confront the patient with AD if the patient says something that is not true. If a patient with AD says something that is not true, the loved one, rather than confronting or contradicting the patient, can share a related thought or ask a question that is in some way connected to what the patient is trying to say.[27] For example, if the patient says to her sister, “I want to see Mom,” but her mother has been dead for some time, the sister could say, “I remember how Mom did such a great job styling your hair,” or, “Do you remember the fun we had cooking with her?”

If the patients and/or loved ones can do what I have described here, the reunions are more likely to succeed.

Raising Difficult Issues with the Patient

As AD worsens in a patient, agonizing decisions often must be made.[28] Two examples of this are when the patient needs to go to a nursing home and when the patient should no longer drive a car.[29,30] It is most important that psychiatrists or other care providers, not the patient’s loved ones, raise these questions with the patient. If a loved one raises them with the patient, the patient with AD may lose his or her trust in the loved ones. The patient may lose his or her trust in the psychiatrist too, but there are ways to reduce this risk.

The psychiatrist always should ask the patient first whether he or she is willing to discuss the issue in a general and nonthreatening way. For example, the psychiatrist might say, “There are some particularly difficult decisions that could arise, not soon, but in the future. It might be best for us to begin to consider them a bit now. What do you think? Would you want to discuss them a bit now or would you want to wait until some time later?”

In regard to possibly entering a nursing home later, the patient should ideally determine him- or herself which nursing home he or she most likes. The patient might even initially work there as a volunteer. Next, the patient may go to the nursing home, but only during the day. And later, if or when the time comes, the patient is admitted to the home as a resident.[31]

A similar approach may be used in regard to driving. That is, a psychiatrist might say early on in the patient’s illness, before driving has become an issue, that driving is an issue that could arise later on. The psychiatrist can add then that if the patient can no longer drive safely, the patient, no doubt, would not want to endanger his or her own life or other lives. The psychiatrist may then ask the patient how he or she might want them both to approach this or if he or she would like to postpone this question to a later time. To soften the impact the idea of not driving may have on the patient, the psychiatrist can add that it may be possible for the patient to change his or her driving habits gradually (e.g., by limiting trips to places less far away). The psychiatrist may then mitigate the interpersonal effect the discussion may have on the patient by stating that he or she knows that giving up any driving may be a great loss for the patient.

Patients with AD who pose a danger to themselves and others by driving may be willing, especially over time, to give up driving in order to avoid creating these risks and/or causing their loved ones to feel fear that bad accidents will occur. If, however, a psychiatrist lacks the opportunity to discuss this issue early on in the patient’s illness, the psychiatrist’s options may be more limited. Once driving becomes a safety issue, and if the psychiatrist has not addressed this issue previously with the patient, the psychiatrist may need to request that the patient give up the car keys (to a loved one) while still in the room with patient. This may succeed when loved ones have not or could not do this solely on their own. The psychiatrist considering this should be aware that the patient may say that he or she will give the car keys up but then later change his or her mind or not remember that he or she agreed to do this. That is why it is ideal for the psychiatrist to persuade the patient to hand over the car keys to the loved one right there during the appointment before the patient leaves.

Helping Loved Ones Feel Better about “Moral Distress”

As the patient’s condition worsens, the psychiatrist should pay more attention to the needs of the patient’s loved ones. The loved ones’ difficulties are likely to greatly increase as they care for the patient.[32] If the psychiatrist can help the loved ones, this may in turn help the patients.[33–35]

As the patient becomes more impaired, one of the sources of greatest distress for many loved ones includes moral concerns that arise and have no precedents. Psychiatrists can help by taking initiatives to raise and then address these moral concerns. These concerns involve both how the loved ones should respond to the patient and what they themselves feel, regardless of what they do. An example of the former is whether or not a loved one should lie to the patient. An example of the latter is a care giver feeling negative emotions, such as anger or sadness, about the patient.

Lying. Concerns regarding lying to the patient may arise in many contexts. Loved ones may, for example, be advised to carry cards with them that say that the patient is impaired.[35] They show the cards to people such as salesclerks surreptitiously when it seems to them that this may help. By showing these cards, it may prevent the salesperson and the patient from experiencing greater misunderstanding and distress; however, to the loved one it may seem somewhat deceitful to the patient. Loved ones also may be advised to hang curtains over exit doors to hide these doors so that the patient will not be tempted to open them and go out. This helps to keep the patient safe, but again, the loved one may feel bad doing this because it seems deceitful.

A more obvious example of lying would be, as previously exemplified, when a patient continues to ask to see a parent who is deceased. As I discussed earlier, rather than tell the patient the truth (“Mom has been dead for 10 years.”), which may repeatedly cause the patient much distress, the loved one may instead focus on things the parent did that the patient enjoyed (“Remember how much we loved helping Mom cook?”). Responding in this way does not directly address the patient’s statement about wanting to see Mom, but indirectly responds to what seems to be the patient’s underlying feeling: missing his or her mother. Some say this is an example of an emotional truth.[36] When loved ones meet with patients, this emotional truth is the goal they should try to achieve.[27,36]

Emotional truth is the core goal sought in validation therapy, a therapy developed by Naomi Feil, a social worker, decades ago.[27,36,37] The following are examples of what Feil specifically suggests:

• Loved ones should stay in the “here and now” when interacting with the patient, and they should avoid asking the patient, “Why?”
• Loved ones should try to verbalize the patient’s most likely emotional needs. Suppose, for instance, that the patient says he or she wants to see his or her adult children. The loved one might say, “You must miss your children.”
• Loved ones should try to interpret the patient’s feelings when he or she cannot make them clear. For example, in response to the patient having a threatening body posture, one might ask, “Are you angry?”[23]

What can psychiatrists say to the loved one who is concerned about lying to the patient? One psychiatrist asks rhetorically, “…[W]hat does telling the truth mean, when someone is already deceived by their illness?” To this psychiatrist, her patients psychologically are living in their past. To correct them would, she believes, be “cruel.”[35] Rather, we should use our imagination at these times, she suggests, to try to enter our patients’ worlds so that we can then be more with them.[32] The psychiatrist can take initiative to inquire whether a loved one feels moral distress. If the loved one does, the psychiatrist can then also share another perspective: It may be most important to respond to patients with AD with compassion. This may mean specifically helping them to be able to continue to feel both safe and “connected.” It may be that these values should prevail, whether loved ones would see this as lying or not.

Loved ones may also have more subtle concerns in this area. The psychiatrist can advise the loved ones that as the patient’s disease worsens, they can help the patient most by offering the patient only limited, specific options, as opposed to asking the patient open-ended questions. For example, one might ask the patient with AD, “Would you like a ham or turkey sandwich?” instead of, “What would you like to eat?”
Loved ones may similarly be advised that they can help the patient more by asking them “Yes” or “No” questions, since the patient is likely to find these questions easier to answer. Loved ones may feel that if they give only limited options, they are being “bad” or immoral because they are “failing” to respect the patient’s autonomy fully by giving the patient options as they have in the past. They may fear that they are even manipulating the patient and, again, deceiving them.

Feeling negative emotions or ambivalence. As the capacities of a patient with AD deteriorate, it may be more likely that their behaviors will trigger negative feelings or ambivalence in their loved ones. For example, the spouse of one of my patients with AD had cancer. She lost her hair during her treatment with chemotherapy and then recovered. Her husband, who had AD, had been with her through all this. Some time later, he said, “You had cancer?” Negative feelings or ambivalence may, for loved ones, be unbearable. They may believe that if they have negative feelings, they are “bad,” because they tell themselves it is the patient who has AD, not themselves.

Psychiatrists may experience negative feelings too. Family physicians have been found to not only have these feelings, but to discriminate against the patients when these feelings occur.38,39 Loved ones may find these negative feelings particularly unbearable if and when the patient must be admitted to a nursing home.[40,41] They may feel extraordinary guilt. One expert in this area states, “Guilt over institutionalizing a relative is the most difficult feeling to dissipate and usually professional intervention is the only way to work through these feelings.”[42] The pain a loved one may feel due to having to institutionalize a patient with AD may be exacerbated if he or she had to weigh the patient’s best interests against his or her personal financial needs.

When equipped with this knowledge, the psychiatrist can take several initiatives. The psychiatrist should first inform the loved one that negative and/or ambivalent feelings are normal and common among loved ones of patients with AD, and if the loved one does have these feelings, it does not mean he or she is “bad.” Next, the psychiatrist can explore with the loved one(s) whether these negative feelings or ambivalence exist. The psychiatrist can also tell the loved one that if he or she finds him- or herself facing financial issues, additional “irrational” feelings of guilt may occur. Sometimes just addressing these issues with the loved one provides instantaneous relief. This was addressed in a book by a woman whose husband suffered severe brain damage from an accident. In the book, the woman describes her experiences adjusting to this life-changing event. She wrote that she actually adjusted well but then felt extremely guilty that she had adjusted so well. The author states, “And then one day I asked myself a terrible question. If I could make Richard’s accident never to have happened, would I do it?…And instead of yes, I hesitated….Finally I told my sister.

‘But it’s not about Rich’s accident,’ my sister said. ‘You don’t want to return to unhappiness. That’s all.”

In response to hearing this from her sister, the author wrote, “I will never forget that instant of absolute clarity. And just like that, I was free.”[43]

Grieving. Psychiatrists should take initiative to explore with loved ones of patients with AD whether or not they feel sad.[44–46] The psychiatrist should seek to help the loved ones “normalize” this feeling. A loved one of a patient with AD may feel guilty if he or she experiences grief. As described above, he or she may believe that it is the patient, not the loved one, who is worse off, and thus the loved one has no right to feel sad. The culture of the patient and his or her loved ones may further this belief. One expert says, “Grief has been identified as disenfranchised by the shame, secrecy, and stigma associated with Alzheimer disease.”[38] This same expert goes on to explain an important implication of this for psychiatrists: “…healthcare professionals need to know that a substantial number of caregivers only recognize they are grieving after they are told that this is happening to them.”[42]

Grief may start, of course, when an individual first learns that his or her loved one has AD and may continue throughout each stage of the patient’s illness. This grief recurs when the patient dies. Thus, some say the loved ones of a patient with AD grieve the death of the patient twice.

Loved ones of patients with AD also may have more difficulty grieving than loved ones of other patients who are dying, such as those who have cancer. This is because as AD progresses, a patient with AD may lose insight. Thus, the patient and his or her loved one(s) may no longer be able to share their grief together.[42]

Most importantly, the loved one of a patient with AD who insists he or she is doing “fine” and does not need help from others may end up actually doing worse than those who ask for help. The individual who seems to benefit from taking on this role may be, in fact, “a predictor for having a complicated grief experience after the death of the family member.”[42] Some individuals feel that it would be immoral for them to seek any respite for themselves because it is the patient who is experiencing the far greater loss, and furthermore, if they did seek respite, they would be abandoning the patient. Thus, they may, perhaps as a defense, throw themselves wholly into caring for these patients, adamantly refuse all help, and not feel any grief consciously. I treated a man who felt this way. His wife had AD. After she died, he wept incessantly. When she was impaired but still could care for herself with the help of neighbors, he went away for a weekend to visit their adult children and grandchildren. After that, however, he refused to leave her side.

“I shouldn’t have left her,” he would cry. “I was bad and I don’t deserve now to live.” He eventually recovered.

Psychiatrists should consider, therefore, taking initiative to inquire whether loved ones are experiencing grief. If they say they are not, the psychiatrist might then take initiative to inform them that meeting their own needs and those of the patient are not necessarily always mutually exclusive. That is, the psychiatrist can tell them that as opposed to their having to choose between meeting their own needs or those of the patient, it may be that, in some instances, they can help the patient by meeting their own needs first. For example, if they can arrange times of respite, this may leave them refreshed and, especially over time, better able to cope with the needs of the patient. The psychiatrist can point out that unless family members or loved ones meet their own needs to some extent, they may be less able to meet the patient’s needs to the greatest extent. Psychiatrists should not, however, “push respite” too hard or too early, because if they do, this may—like raising the topic of a nursing home too early—have a negative net effect.[42]

Finally, prior to making any recommendations to the loved one(s) of a patient with AD, the psychiatrist should ask the loved one if he or she wants to hear recommendations from the psychiatrist.[47,48] The loved one may believe that he or she struggles with enough questions as it is, without being presented with more, and the psychiatrist should respect this.


There are several treatment initiatives psychiatrists might take with patients with AD and their loved ones. These include maximizing a patient’s autonomy by asking the patient whether he or she wants to be screened for AD, telling the patient about nonevidence-based treatments, even if the psychiatrist will not offer them, helping the patient reunite with long-lost loved ones, and bringing up difficult decisions, such as considering a nursing home and not continuing to drive.

These and other initiatives not only help the patient with AD, but also help the patient’s loved ones cope better with moral distress. It may be that in regard to taking these initiatives, a psychiatrist’s position is unique. If the psychiatrist already has a trusting relationship with his or her patients and their loved ones, the psychiatrist may be able to pursue these initiatives with success.

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