Q57. I heard you say that people with dementia can experience a positive quality of life, even when the disease is severe. I can’t imagine that. In fact, I can’t think of anything worse than knowing you have Alzheimer disease.
A57. I appreciate your raising this because others have made similar statements in my office, but rarely is the issue brought up in public. I will answer it both from my clinical experience and from a research perspective.
When I interact with people who have dementia, they often seem happy, engaged, and aware of what is going on. Of course, some people with dementia are sad, distressed, and not engaged. When I have conversations with people who are aware that they have dementia, many of them tell me that life seems the same; they might not be able to do everything they want, but when they are with family and friends, when they are engaged in activities they enjoy, or even when just sitting around, they say that, all in all, things are “OK” or “could be worse.” I do not want to sugarcoat what it means to have dementia, and do not want to downplay the fact that not everyone is so positive. However, I have treated medically and psychiatrically ill people throughout my career and remain struck that people face adversity in many different ways. Many can recognize the negatives of their illness or situation and yet appreciate what they have had in the past and still have.
In my research on quality of life in people with dementia, several findings bear emphasizing. First, some people with dementia experience a positive quality of life throughout their disease, even when it is severe. Second, the main aspects of quality of life in people with dementia are a positive mood, enjoyment of activities, amount of social interaction, awareness of their past, and awareness of their surroundings. Third, many people simultaneously express negative and positive thoughts about their current situation. Finally, people experience and express similar types and ranges of emotion whether they have good health, dementia, or a major physical disability.
I have heard people make statements similar to the last sentence in your question about having a debilitating physical illness, undergoing an amputation, having a mental illness, becoming blind, and being diagnosed with a terminal disease.
Over my career I have observed a wide variation in how people respond to bad news. Some describe both negative and positive emotions while others report a predominance of one or the other. Having an opportunity to talk openly about the negative feelings seems to help many people feel better, but not everyone.
What has struck me the most when discussing “bad” medical news with people is that many people have the ability to adjust to very difficult circumstances. I do not believe this is denial or an inability to accept reality, and I recognize that it is more difficult for some people than others. The most common mistake I see in talking about the impact of bad medical news is to expect that everyone reacts the same. As a professional, my job is to help those who are suffering, but not everyone in difficult situations is suffering or needs professional help.
This is as true for dementia as it is for other medical and psychiatric illnesses. I have learned that having dementia does not necessarily prevent you from being a wonderful grandparent, getting pleasure from visitors, enjoying being hugged, or watching others have a good time.
Q58. I have just been diagnosed with Alzheimer disease and am still working. Should I tell my boss? My family? My friends?
A58. This is a difficult question and one for which there is no single right answer. If you have a life partner, I do think you should tell that person and discuss your preferences about the future with them (see Q59 about legal documents). If you have children, I think you would want to tell them and also talk with them about the future. The same would be true for anyone who has a serious medical condition. Talking about your health with those close to you should give you a forum to talk about your fears and receive emotional support.
In some circumstances, Social Security Disability Insurance benefits can be “fast tracked” if a person has dementia.
There are positives and negatives about informing work supervisors. The risks are that you will be asked to retire or be terminated and the difficulties this could cause for you. On the other hand, you may not be able to recognize whether your dementia is causing problems with your job now or in the future. If your illness is already causing problems at work, that could not only cause bad outcomes but lead to your termination and loss of disability benefits. Dementia is now recognized by Social Security as a cause of permanent disability. In some circumstances, Social Security Disability Insurance benefits can be “fast tracked” if a person has dementia. Over the years I have had many patients who did not know they had dementia and lost jobs as the result of declining job performance before they came for the evaluation. Even though it was clear, in retrospect, that dementia had led to their job loss, they have generally been unsuccessful when they retroactively applied for disability.
If you have received a diagnosis of dementia and the disease is likely to progress, you should plan for the likelihood that someday you will not be able to make financial and health decisions for yourself.
As for as telling friends and acquaintances, I think it depends on how well you know them, how close you are with them, and whether you think something adverse is likely to happen. Today, most people know someone with dementia, often a parent or other relative. That should make them more understanding than people have been in the past. Not telling people out of shame does not make sense, but that does not mean that you have to tell everyone. Talking about this issue with your partner or someone you trust can help you decide whom to tell.
If you have received a diagnosis of dementia and the disease is likely to progress, you should plan for the likelihood that you will not be able to make financial and health decisions at some point. As I discuss in Q59, I think it best to immediately write a will and establish durable power of attorney documents both for health decisions and for financial decisions, if you haven’t already done so. You should contact all financial institutions where you have accounts and find out what procedures they want you to follow to appoint someone to substitute for you in the future, because not all companies accept durable power of attorney documents. If you have a lawyer, you should discuss all these issues with that person.
Q59. What is the difference between designating a power of attorney and identifying a durable power of attorney? Can I change my will if I have dementia?
A59. These are complicated legal matters, and you should consult an attorney about the specifics of your situation.
In general, a power of attorney document appoints the person named in the document as someone who can substitute for you in the ways that you specify in the document. For example, you might appoint someone as your power of attorney if you will be traveling and know that a document to sell property must be signed while you are away. Importantly, you must be competent when you sign a power of attorney document. If you later become incompetent, meaning you are not able to make decisions for yourself, then the power of attorney document becomes void.
Immediately after receiving a diagnosis of dementia, you should write a will and establish durable power of attorney documents for health and financial decisions, if you haven’t already done so.
For this reason, all states and the District of Columbia have established documents titled “durable powers of attorney” or some similar label. The key word is “durable.” This means that the document remains in force even if the person signing it becomes incompetent. These documents indicate whom you would want to substitute for you if you are declared incompetent. The specific mechanism by which a person is declared incompetent varies by jurisdiction.
Almost all jurisdictions separate the making of financial decisions (durable power of attorney for finances) from the making of health care decisions (durable power of attorney for health). Some states have added other categories. I believe strongly that all adults should legally identify a durable power of attorney because anyone can have an accident or develop a sudden, severe illness and become unable to make decisions for themselves. Unfortunately, most people do not have such documents. Receiving a diagnosis of dementia or a life-threatening condition such as cancer is often the trigger for doing so.
Many states also have established living wills or similar types of documents. In some states these documents are only applicable at the end of life, but many jurisdictions allow for people to express their health care wishes verbally to the person who will be making substituted decisions for them. In some jurisdictions, wishes about future care can be expressed in durable power of attorney documents.
There is a lot of variability about these issues, so it is important to be informed about the specific rules in the place where you live. You may be able to find this information online, from the attorney general’s office of your state. Many health care facilities have information about these matters, as do local departments of aging. Family attorneys and estate attorneys are knowledgeable about these issues.
Wills dictate what is to happen to people’s belongings, including money and property, when they die. If there is no will, the state will determine to whom and how the estate will be distributed. The opportunity to write a will was established by common law even before the United States became a country. The overriding principle reflected in legal precedent and legislation is that people should be able to distribute their estate however they want, even if others think their decisions are foolish. However, to write a will, people must know what a will is, must know, in general, what their assets are, must have some idea of how people commonly distribute their assets, and must express whom they want to inherit their belongings. People who have dementia and are able to do these things retain the capacity to write or change a will. However, people with progressively worsening dementia eventually lose the ability to know these things. This is why it is important to write a will if you receive a diagnosis of dementia and have not already done so.
Q60. Should a person stop driving when given a diagnosis of dementia?
A60. There is wide disagreement among knowledgeable experts on this issue. The answer also varies by state. Some states require that the motor vehicle bureau be notified when a diagnosis of dementia is made, while others do not allow physicians to break confidentiality and report the person’s diagnosis.
All experts agree that people with moderate dementia due to any disease should not drive. By this stage of dementia, the likelihood of impaired judgement, perception, reaction time, and multitasking is high, and the risk of having an accident is significantly increased.
The disagreement about when to stop driving relates to people with mild dementia (recognizing that this is not a well-defined term). Studies have shown that accident rates are higher for people with mild dementia than for the average driver, but they are equivalent to the accident rates for teenage boys. Hence the dilemma.
Driving evaluations can be performed by some occupational therapists, and some states will provide driving evaluations if asked to by a person with dementia or by a family member, or if a professional reports that the person is possibly impaired.
If a person has had an accident after receiving a diagnosis of dementia they should stop driving, in my opinion, because one can never be sure that the dementia did not contribute. This is true even if the other driver is charged. Some professionals talk about the “grandchild test”—If you would not let a person drive your grandchildren, then they shouldn’t be driving.
Q61. Our family has gone on cruises together once a year for the past 20 years. My husband was diagnosed with dementia of unclear cause 2 years ago, and I am wondering if we should continue this tradition. One of our sons says definitely not, while our other children agree with me that we should try it. What do you recommend?
A61. I am assuming from this question that your husband has always enjoyed going on the cruises. It also sounds like you would like to continue this tradition because you want to continue that source of pleasure for him and want to do something together as a family that has always been a source of fun for everyone.
The risks of going on a cruise with your husband include his getting lost in an unfamiliar place and the worry that would cause him and you. He might be less able to participate in shipboard and off-ship activities than he did in the past, and that, too, could be upsetting. He may need to have someone with him at all times to ensure his safety, but may resent this and not understand or accept the need.
There are many potential benefits of going on a cruise for your husband, you, and other family members. Your husband would be doing something familiar to him and something he has always enjoyed. For everyone in the family, going on the cruise would be a way to continue a family tradition that has long been special. For you, the cruise would be both a way to be with everyone in the family and a way for you, as the primary caregiver, to get away from caregiving when others are spending time with your husband.
If you went on a trip last year and there were no problems, the likelihood of major problems this year seems low. Since problems are still possible, you should ask your family how they would feel if problems did develop. If everyone accepts the low risk, then it is a risk worth taking.
If there were problems last year, then the likelihood of more difficulties this year is significant. I recommend discussing this openly with other family members.
Another possible approach is to take a short (2-day or 3-day) trip to a nearby hotel and see how that goes. If there are no problems, then a longer trip is likely to work out. Also, look into the availability of “dementia-friendly” cruises.
There is no way to predict whether a time will come when these trips are no longer possible. Every adult on the trip should be aware that your husband’s dementia increases the risk of problems but does not make them inevitable. His safety and enjoyment are important. You should weigh both of these as you make your decision.
Q62. My husband was diagnosed with Alzheimer disease about a year ago, but he continues to deny that he has anything wrong with his memory. He is able to drive and be left at home alone without any problems. Is there anything I can do to convince him that he has an illness that affects his memory? Is this denial?
A62. More than one-third of people who have been diagnosed with Alzheimer disease are unaware of their difficulties or deny that they have problems when told of their diagnosis. An even higher percentage of people with Alzheimer disease will say things like, “Of course I have memory trouble. So does everyone my age.” This is also evidence of unawareness.
In my opinion, this unawareness is usually a symptom of Alzheimer disease (see Q94). One reason for concluding this is that rates of unawareness are much lower in people who have vascular dementia or Huntington disease of the same severity. Even if I am wrong and this unawareness or denial is the result of an inability to “accept” the diagnosis, the bottom line is that the person either is unable to know or does not want to know. In either case, trying to “convince” him is not appropriate and can be upsetting to him.
Unfortunately, this unawareness can lead to problems if he should not drive, go out alone, be home by himself, pay bills, babysit, or take medications on his own.
I recommend that you always remind your husband that the diagnosis was made by his doctor. You could say, “Don’t forget, Dr. Smith is the one who made the diagnosis.” That way, if he disagrees, you can say, “Well, we are scheduled to see Dr. Smith in a few weeks. You need to tell him directly that you disagree.” If there is something he should not be doing because it is dangerous you can add, “In the meantime, I don’t think you should [whatever the activity is, such as go walking by yourself] until Dr. Smith gives the go-ahead.”
Q63. How do I start a conversation with my wife, who has early-stage dementia, about getting additional support when she eventually needs more care?
A63. The answer depends on whether your wife is aware of her diagnosis and can appreciate that she has a problem. If she is able to recognize that she has dementia or a memory problem, then I suggest you have a general discussion about future plans. A good place to start is either establishing durable power of attorney documents and writing a will, if you and she have not already done so, or reviewing these documents, if you already have them. This discussion can provide an entrée into talking about and planning for a variety of possible scenarios for both of you in the future.
Use her response to guide how much detail you can go into. If she is becoming restless or upset, then back off a little. In general, I recommend trying to acknowledge her being upset (“I know this is hard to talk about. It is for me, too.”), but if that further upsets her, then stop and restart the conversation another day. If she is able to talk about these issues, it may be helpful to discuss them as possible situations (“What if I get sick or am not able to help you as much as I need to?”). If her response is, “Oh, that will never happen,” it is fine to say, “I hope not, but what should we plan to do if I can’t give you the help you need?”
Such conversations are difficult for most people. Dementia can render some people unable to participate because of impaired reasoning capacity, because they become upset easily, or because they lack insight.
However, they still may be able to discuss these issues in a general way. You might try stating your preference for what you would like and then ask her what she would do. For example, “If I got really sick and needed more help than you could give, I would want [whatever you would want, such as to be cared for by home health care workers in our house]. How about you?”
Unfortunately, some people are not able to discuss these issues even when their dementia is mild. If you have had prior discussions about these issues, consider using those conversations as a guide to her preferences.
Q64. My 10-year-old daughter has asked several times why her grandfather, who has been diagnosed with Alzheimer disease, has changed. Should I discuss his diagnosis? What is she likely to understand?
A64. I do think you should talk with her and use her responses to guide you in deciding how much detail to provide. At a minimum, explain that what she has noticed is caused by a sickness. I suggest emphasizing that he loves her and that the family still loves him. Highlight the things they enjoy doing together. If she asks about the sickness, it is reasonable to tell her the name of the disease. There are several books written about Alzheimer disease for children and teens. She might want to read one alone and ask questions, or she might want to read it with you.
Q65. My 78-year-old father has cared for my mother for almost 3 years. I have suggested several times that he attend a support group, but he always replies that he doesn’t need it. Is there anything I can say to him to convince him?
A65. I believe that support groups are a wonderful resource. I have always encouraged the caregivers I interact with to consider going to one. Support groups are a great source of information about community resources and potential solutions to challenging problems. They are also a source of emotional support from people who are facing similar challenges.
That said, support groups are not for everyone. Some caregivers are doing well and don’t need more support or information. Other caregivers are too “private” for the experience that support groups offer. If your father seems to be doing well, I don’t think you should try to convince him to go to a group.
On the other hand, if he seems demoralized, tired, angry, or overwhelmed, I suggest you gently share these observations with him and tell him that there are many sources of support available. Among them are family members, friends, clergy, counseling services, and support groups.
If he seems to be struggling emotionally I also recommend telling him that you are concerned about both your mother and him, and that his getting help will be good for both of them. If he is worried about the cost, find out if there is a charge; most support groups are free. You could offer to attend the group with him to test it out. If he continues to resist getting help and he seems to be doing worse, you might ask if he would consider respite care or long-term care for your mother.
Q66. My mother has always been a cheerful person and has done well as a caregiver for my father for several years. Recently, though, she has seemed sad and depressed. She talks much less on the phone, doesn’t seem to want to see my children, and cries at the drop of a hat. I told her I was concerned that she was depressed, but she passed it off as “just part of being a caregiver.” What do you think?
A66. Although being a caregiver doubles or triples the risk of feeling demoralized, the majority of caregivers never develop clinical depression. The fact that your mother seems “changed” from her usual self does suggest that she is experiencing clinical depression; her diminished energy, avoidance of usually enjoyed activities, and frequent crying further support this.
If a person with dementia can carry a phone, their primary caregivers should put their own phone number and that of other emergency contacts in “ICE” (In Case of Emergency), under “favorites,” and in the phone’s address book under “wife,” “son,” “daughter,” or “friend.”
I suggest telling your mother several things. First, tell her that you see her as a changed person and that this is not a usual outcome of being a caregiver. Tell her that she has certain symptoms (listed in the previous paragraph) that suggest she has clinical depression. Also tell her that you are only recommending that she be evaluated, and that, if you are wrong, then you will be relieved. Finally, tell her that there is strong evidence that depression responds to treatment and that research has shown that when depression in a caregiver improves, the mood and behavior of the person with dementia also improve.
Q67. Since this is anonymous, I will tell you that I have yelled at my husband twice in the past month. He has dementia and I know it’s wrong, but it happened so quickly that I couldn’t control it. I would never hit him, but I feel so guilty. Do you think this means that I should place him in a nursing home?
A67. Guilt and frustration are very commonly experienced by caregivers of chronically ill people, particularly caregivers of people with dementia. Guilt may be a sign that you are overwhelmed, so you should ask yourself whether you need more help in the house, a brief vacation, or the help offered by a support group (see Q53).
I am guessing that you are not in a support group or, if you are, that you haven’t mentioned that you yelled at your husband. If you had, you would likely have found that almost everyone in the group had done the same thing on occasion. And, like you, everyone would have expressed regret about it.
Frequent losses of temper suggest that a caregiver is overwhelmed, but occasional episodes are so common that I consider them normal. Finding an outlet for your frustration such as talking with friends, joining a support group, or discussing the matter with clergy can help, as can taking time away from caregiving. If the problem continues, consider talking with a counselor. If these steps don’t help, you should think about alternative living situations.
Q68. How do you support a caregiver long distance?
A68. Only about half of family members live close to a loved one who has been diagnosed with Alzheimer disease. In most circumstances, when there is a partner living with the person or there are family members nearby, they shoulder most of the caregiving responsibilities. I think this is important for out-of-town family members to keep in mind, because it is often difficult to tell from a distance exactly what the issues are.
An important first step for people living out of town is to acknowledge that those living close by are most likely to know about the day-to-day issues, both positive and negative. Realize that both the person with the disease and those providing care need support. I suggest that you check in by phone regularly. I think phone is better than text or email, because it is more personal and you can detect some things by hearing that you cannot in writing. If you do check in regularly, be sensitive to the possibility that the caregiver might feel that you are checking up on them. If this might be the case, reassure the caregiver that you want to be kept in the loop and want to help, but that you are not questioning their ability. If you are concerned that the caregiver is overwhelmed or no longer able to provide what is needed, then you should try to visit in person to assess the situation.
I believe strongly that the more facts people have, the more likely they are to be able to figure out what needs to be done. Ask the caregiver to tell you about the results of visits to the doctor and other professionals after each contact. Recognize that many caregivers who are “on-site” or close by believe they are most knowledgeable about the situation. This may well be true. Ask about their observations and opinions.
Visit as often as possible to see for yourself how things are going and to assess what is needed. If possible, provide some caregiving yourself and give the person providing most of the support some time off. Make sure that your visit is not adding to the caregiver’s responsibilities.
Encourage the local caregivers to utilize available agencies and supports. Be sensitive to the possibility that they might see this as admitting defeat. Recognizing that regular caregivers may be reluctant to use extra help is important, because you might be able to convince them that getting this help is best for both the ill person and the caregiver. If the caregiver believes that no one can do as good a job as they do, empathize with their dilemma—they may be correct, but getting extra help might still help things go more smoothly. You may need to repeat your offer to relieve the caregiver more than once.
Q69. How do I find good people to help me at home?
A69. Getting help at home can prolong a person’s ability to remain in their own home, a goal of almost all people with dementia and caregivers. Some caregivers need help with tasks such as bathing, dressing. or moving a bedbound person, while others need help with meal preparation, cleaning the house, or respite from caregiving. All of these are valid reasons to get help at home. Of course, there are many others.
Many agencies provide this kind of help. If you know someone else who has obtained help, ask them. They may be able to recommend an agency or a specific person who has helped them, or refer you to someone who knows what or who is available. If you are in a support group, ask people if they can recommend someone or some agency. A social worker may know of an agency that pays special attention to the needs of people with dementia.
Make sure the agency is bonded. This means that the agency has reviewed the credentials of the people they hired and has made arrangements for you to be reimbursed if theft or financial abuse occurs.
If you are unhappy with the person, let the agency know. Tell them directly what your concerns are, and ask the agency if there is someone else who can better meet your needs. If you hired a person directly and are unhappy with their services, you can terminate them and try to find a more suitable person, but keep in mind it might take a while to find a replacement.
If you are looking for help at home, ask people who have already had this kind of help. They may be able to recommend individuals, agencies, or referral services.
Q70. My father has dementia and is scheduled to go into the hospital next week for a hip replacement. Is there anything I need to worry about because he has dementia?
A70. Dementia increases the risk that he will develop delirium as a complication of the anesthesia, surgery, or postoperative medical care. Delirium is characterized by a sudden worsening of cognition (thinking) and an altered level of alertness (people are either drowsy or hyperalert). Delirium prolongs hospital stays, interferes with recovery and rehabilitation, increases the cost of care, and increases the risk of dying in the next year.
Importantly, delirium can be prevented if the following steps are taken:
I recommend having a family member or paid sitter with your father 24 hours a day. This person should remind him, as frequently as he needs, where he is and why he is there, keeping in mind that he may not remember what he has been told after just a few minutes. This person can also answer his questions, keep him stimulated when he is awake, and call staff if there is a problem.
Q71. My mother, who was diagnosed with Alzheimer disease several years ago, has started accusing me of stealing money from her. This really hurts, because she lives with us and I am her primary caregiver. I know these ideas probably come from the disease, but it still hurts me when she says it.
A71. This is a common and distressing occurrence. You know it isn’t true but others who hear the accusation may not. If that is the case, discreetly let them know that this is a symptom of her disease.
If someone else is being accused, do your best to find out whether the accusation is true. Unfortunately, there are people who take advantage of those who are ill and dependent.
The person making the accusations may be misplacing a purse or wallet and assuming that someone has taken it. If that is the case, ask if you can help her look for it. If this helps, keep an extra purse or wallet in her room. Some people are reassured if they have a few dollars readily available. If having some money reassures her, show her the wallet with the money and give her an out, such as, “I can understand how upset you were when you couldn’t find your wallet.”
One frequently effective approach is to distract and reassure the person. If you tell her you will look into it but ask her if she could, for now, help you with a chore or tell you what happened earlier in the day, she may become engaged and forget about her accusations, at least for a while.
Avoid antipsychotic medications if at all possible (see Q52). Suspiciousness and accusations should not be treated with medication unless they place the person or someone else at meaningful risk of harm.
Q72. My brother has been diagnosed with Alzheimer disease and now has a lot of trouble coming up with words and names. Should I help him, or is it better for him to stimulate his memory by trying to find the words he wants to say on his own?
A72. When we do physical exercise, we generally think that the harder people work, the more benefit they get. However, we know that when people have been physically injured and are unable to do an activity, they benefit more if we provide them with the help they need to function and participate actively. For example, if a person has had a stroke and is very weak on one side, we provide the support needed to stand and walk—a cane or walker, for example—and design a rehabilitation program that seeks to strengthen their weak muscles.
A similar principle should be applied to helping people with dementia and other diseases that impair thinking. Many people with dementia who have word-finding problems are frustrated by their difficulty in retrieving the words they want to say. This frustration makes it even harder for them to retrieve the word they are searching for. I conclude from this that most people with a language impairment caused by dementia (see Q8) do better when they are given the word they appear to be searching for. This enables them to continue the conversation, which is their goal. If you are not sure what word your brother is trying to say, you can give him several words to choose from.
Occasionally, people become more frustrated or angry if you try to supply them with the word they are searching for. If that happens repeatedly, stop giving them suggestions. You can ask them what their preference is, but they often are unable to understand that question or express a wish.
Some people with the language disorders of Alzheimer disease or frontotemporal dementia (FTD) do not recognize their impairments or are unable to use words to clarify what they want to say. People with this kind of aphasia are sometimes not able to recognize that they are having a problem communicating.
Most people with a dementia-caused language impairment do better when they are given the word they appear to be searching for.
Some people with language problems are able to understand nonverbal cues, that is, communication through visual or tactile information. For example, if you are asking someone to walk to the dining table and move your body in that direction, they are more likely to comprehend your request than if you only use words. Gently touching their elbow and directing them towards the dining room is a way of nonverbally communicating the same information.
Q73. Is there anything I can do when my wife refuses to take her medications?
A73. It is important to make sure that she (and each of us) is only taking medications that are necessary and potentially beneficial. Reducing the number of pills by eliminating unnecessary medications, by giving medications as few times per day as possible, and by maximizing the amount of medication in a single pill can sometimes help with this problem.
Ask your wife if there is a reason she doesn’t want to take the medication. Does it taste bad? If she is taking pills, does it hurt to swallow them? Does she feel that her situation is hopeless and that taking medication will not help? If she is able to express a reason, is there something that can be addressed to make the situation better for her?
Some medications have longer-acting formulations that are equally effective and would decrease the number of times that she is presented with pills. Ask her if she would prefer a liquid. Find out if a patch is available and, if so, ask her if that would be more acceptable. Determine if she is more comfortable taking a few pills at a time over 15 to 20 minutes.
Some people are more accepting of care at one time of the day rather than another. If such a person is refusing medications, ask her health practitioner if you can give the medication at the time of day when she is more likely to cooperate. There are medications for which a dose can be safely skipped once in a while, but this is uncommon. Ask her doctor or nurse what to do if a dose is skipped.
It is important to find out whether the person who is refusing medication has the ability to make a choice based on the risks and benefits of the medications. This determination depends on an assessment of competency by a professional. One reason to appoint a durable power of attorney for health is that the designated person can make such judgements for someone who has become, and has been declared, incompetent to make such decisions. Just because a person with dementia refuses a medication, medical test, or medical intervention does not mean that they lack the competency to make decisions. If the person is competent and able to weigh risks and benefits, we should honor their wish.
People have different opinions about surreptitiously putting crushed pills in food like applesauce or dissolving them in a liquid if a person is refusing to take medications. I believe it is appropriate to do so if the person has lost the competency to make medical decisions and if the individual who is their substitute decision maker agrees that this approach is acceptable. I recognize that this ignores a person’s freedom to choose, but if they have been declared incompetent to make medical decisions, they are not able to make reasoned choices.
Q74. I am concerned that my husband will wander away from home. I want him to be safe, but I also want him to have as much independence as possible. What technology can I use to make things safer?
A74. An “old” technology, a bracelet with a person’s name, phone numbers for emergency contacts, and diagnosis, is worth looking into. If he regularly carries a wallet, put a card with emergency contact information in one or several places in it.
Cell phones offer features that can make a person safer. Many phones have health apps or “ICE” (In Case of Emergency) settings that can be accessed even if the phone is locked. Put your phone number and that of other emergency contacts in “favorites” so someone can contact you. Also list contact information in the phone’s contacts’ list under “wife,” “son,” “daughter,” and “friend” to identify who should be called in case of an emergency.
Your husband may be able to remember how to use his cell phone even if he is becoming forgetful. Make it as simple as possible for him to call you and have him practice doing this. People with Alzheimer disease retain the ability to learn new tasks for a long time, even if they have trouble remembering recent events. This is why your husband may be able to learn how to use a cell phone even if he hasn’t had one before, or learn a new way to get in touch with you using a phone he has had for a while (see Q37).
The Health App has an emergency contact, or “ICE” (In Case of Emergency), button.
Call your husband regularly so your name and number will be listed in “recent calls,” which is another place a stranger might look for emergency contacts. If you have labeled your contact information as both “wife” and “ICE,” these labels will appear on the recent calls list.
There are apps that can help you locate or follow your husband. They vary by phone manufacturer and carrier. They have names like “Find My Friends” and “Find My Phone.” The Health App has an emergency contact, or “ICE” (In Case of Emergency), button. Locator chips that are made to help find keys and glasses can be put into a wallet, purse, or something else a person always wears or carries.
Q75. My husband paces around the house a lot. Is this bad for him or is it good exercise?
A75. Words like “wandering” and “pacing” are not easily defined. Many people with dementia do appear to walk about their home or a facility without a clear goal, but it is important to ask whether or why this is a problem.
Books and songs written about “wanderers” and “ramblin’ men” often paint these actions in a positive light. I take this to mean that some people choose to walk about more than others, and that this is not necessarily negative. I dislike the term “wandering,” because it has a negative connotation.
People with dementia who walk about when others do not might be bored, feel lost, or feel uncomfortable in an unfamiliar place. They might be looking for something or someone familiar, or be exercising.
You are more likely to find activities that the person can sit through and enjoy if you know what they enjoyed earlier in life and what they are able to enjoy now. It may take trial and error to find activities that engage them (see Q46). It may mean allowing a person to participate in an activity for just a few minutes, then get up and move around, and then encouraging them to return to the activity several minutes later.
It is quite possible that your husband is enjoying walking and exploring the environment. For people in a facility where there is no danger or negative impact on the quality of life of other residents, allowing the walking or moving about (not interfering with it) is often best. Family members are sometimes upset when they observe the person continually moving about. Educating them about the issue might help them understand that wandering is not necessarily a problem.
However, there are times when moving about places people at risk of harm or danger, or puts others at risk of harm. Examples include walking outside during bad weather, leaving home or a facility and being unable to find their way back, and walking in a place where there is a risk of being hit by a car, being assaulted, or being taken advantage of.
A very small number of people appear to be “driven pacers.” These individuals walk constantly during their awake hours, do not stop even to eat, and appear restless. Attempts to engage them in activities are unsuccessful. They often are not able to sit with loved ones or other visitors. I think it likely that this rare occurrence is a brain-based symptom. I know of no intervention that changes driven pacing, so it should be tolerated unless it puts others at risk (for example, if the person bumps into frail people). Even if the person is at risk of harm from falling, the risk of harm from restraining them is often greater.
Antipsychotic medications can cause pacing and should be eliminated, if at all possible.
Q76. My father has Alzheimer disease and doesn’t recognize me. When I tell him that I am his oldest daughter, Jill, he becomes very upset and calls me a liar. He has lived with us for 2 years and this just started recently. How can this be, when he can still tell me what city he grew up in and what college he went to?
A76. “Agnosia” is the word used to describe the inability to recognize the familiar even though vision is intact. Agnosia is one of the symptoms that usually develops in the second stage of Alzheimer disease (see Q8) and in people who have had a stroke in the right parietal lobe (see the figure in Q18). That your father knows where he grew up suggests that this is not a memory problem. He likely is able to tell you the names of all his children, further making the point that he has not forgotten he has children or who they are.
Some people are unable to recognize familiar objects such as a fork or their home, even though they have lived there for many years. Some people can see only one object at a time when there are several in their field of vision. For example, some people can see only one of several foods on their plate. Agnosia can be distinguished from forgetting because the person with agnosia can tell you about the person whose face they cannot recognize, describe details about the appearance of their home, or tell you what different foods look like.
Trying to convince your father of “the truth” will only make him more upset, because this information cannot correct his impaired ability to recognize you. Many people with this symptom are comfortable around loved ones even though they cannot specifically recognize them. Your father might recognize you by your voice but not your face.
Agnosia can be an especially upsetting symptom for caregivers. It may help to discuss your hurt with others who are understanding. Keeping in mind that this symptom does not reflect on his love for you won’t make the upset go away but it might buffer it a little.
Q77. How do you differentiate incontinence from lack of recognition of where to go to the bathroom?
A77. By incontinence, I think you mean the inability to voluntarily control urination and bowel function. A person who develops incontinence should be assessed by a doctor or nurse to make sure it is not being caused by an infection or some other treatable problem. If that evaluation does not find a treatable cause, then you should focus on whether the problems associated with incontinence can be avoided.
Your question highlights the fact that there are multiple reasons adults might not be able to use the toilet correctly. People may have incontinence because they cannot find the toilet, cannot visually recognize a toilet, or are unable to sit on the toilet because they cannot visualize where the toilet is when their back is facing the toilet (as it is when we sit on a toilet seat), or because the parts of the brain that control voluntary urination and bowel evacuation have been destroyed by a brain disease.
The perception problems that develop in the middle stage of Alzheimer disease explain people’s inability to accurately perceive the toilet (they do not know what they are seeing and so do not recognize it as a toilet) and people’s inability to sit on the toilet when their back is towards it. They cannot form a mental picture of a toilet when they are not looking at it, and they are not able to lower their body to sit onto something they cannot see. These are examples of an agnosia, the inability to recognize a familiar object or to locate in space an object that one is not directly looking at (see Q8 and Q76).
People may be incontinent because they do not know where the bathroom is located, whether at home or in a facility. Interestingly, many people with Alzheimer disease can learn the location of the bathroom several weeks after moving to a new home or facility.
People, especially men, may urinate in pots or plants. This would suggest that they still have voluntary control but do not know where the bathroom is, cannot recognize a toilet, or do not know how to use a toilet.
Most people with advanced dementia lose the ability to voluntarily start and stop urination and bowel movements.
No matter what the cause, many people who have developed problems with urination and bowel movements can stay dry if they are put on a bathroom schedule. This means encouraging them or taking them to a bathroom every 2 hours. To determine if scheduling is going to help, it is imperative that the schedule be followed as strictly as possible. Every 2 or every 3 hours means exactly that. Realistically, you may not be able to do this at times, but it should be possible most of the time.
Some people with dementia and incontinence may not like being on a schedule or feel embarrassed and say they are being treated like a child. You are more likely to be successful if you are casual when you make the suggestion to go to the bathroom. The more you can make this natural—for example, “Since we’re going to the supermarket, why don’t you try going to the bathroom before we leave. You know how hard it is to walk all the way to the store bathroom.”—the less likely it is to be taken as an insult.
Encouraging people who are incontinent to use the toilet every 2 hours can help keep them dry during the day.
Q78. How can I get my husband to sleep better? How do I calm his fears in the middle of the night? His doctor has prescribed sleep medications, but they don’t work.
A78. Disturbed sleep is common in dementia. As with any problematic issue, it is important to ask several questions.
1. Why is this a problem? Is it a problem for the person with dementia? A problem for the caregiver? A problem for others?
2. If the problem is causing distress for the person with dementia or placing that person at risk of harm, then it should be addressed. If it is a problem for the caregiver but not for the person with dementia, it is reasonable to ask whether the caregiver is able to adapt to his sleep schedule. If the problem is affecting your ability to continue to care for your husband, then it should be identified as a problem and attempts should be made to address it.
3. What are the likely or potential causes of his disturbed sleep? Discussing this issue with a professional who is knowledgeable about dementia might help clarify whether it is related to some of the following:
• Medications or stimulating substances. “Fluid pills” (diuretics) given in the evening or at bedtime can interrupt sleep by causing the person to awaken at night to urinate. Caffeine-containing drinks or foods eaten with or after dinner might be contributing to difficulty falling asleep. Some drugs given to enhance sleep may sedate a person but also suppress dreaming (REM) sleep and cause awakening in the middle of the night. Alcohol can do this, too, and also act as a diuretic. Antidepressant medications and anti-Alzheimer medications can cause vivid dreams that awaken people. If prescribed medications are possible causes, ask the person who prescribed them if they can be stopped, if the dose can be lowered, or if they can be given at a different time of the day. If they are not prescribed medications, make these changes on your own. If your husband is able to understand, talk with him about why you are making the decisions.
• Medical conditions such as chronic heart failure can cause shortness of breath when lying down and interfere with sleep. Obstructive sleep apnea (OSA) causes frequent awakenings during the night when a person is asleep and leads to daytime drowsiness. Snoring is one symptom of OSA. Another is stopping breathing when asleep, often after a period of snoring.
• Pain due to a medical condition such as arthritis may be interfering with the ability to fall asleep or stay asleep, or may awaken the person early in the morning.
• Lack of daytime activity. Engaging in physical activity during the day can help people sleep better at night. However, not all people want to engage in activities. It is important to determine what the person enjoyed earlier in life and what they are able to participate in at the present time. Many people will participate in activities that meet these criteria, but not always. Respect the person’s wishes but recognize that refusal is sometimes an indication that the person is being overwhelmed.
• Anxiety can cause difficulty falling asleep. In depression, people often are able to fall asleep normally but awaken in the middle of the night or early in the morning and be unable to get back to sleep (see Q49).
• A disorder called “REM Sleep Behavior Disorder” is associated with Lewy body dementia (see Q16). It is characterized by vivid dreams in which a person may become physically agitated, may kick or swing at a dreamed “attacker,” and appear to others to be awake and frightened.
• Alzheimer disease can cause the death of brain cells in the area of the brain (called the “suprachiasmatic nucleus”) that controls sleep. In my experience, patients whose sleep problems are related to damage in this area have a dramatically disturbed sleep/wake cycle—they sleep for several hours, then awaken for several hours, then sleep again, and then awaken. This often goes on for much of the day.
• Awakening and feeling that they are in an unfamiliar place.
General steps to try in addition to those mentioned above:
1. A person who awakens in a frightened state might have had a bad dream or awakened with the feeling that they are in an unfamiliar place. Reassuring them in a calm but confident manner (“You must have had a bad dream. We’re at our house in Cincinnati and everything is OK.”) might be enough to help them feel better and get back to sleep. Some people are more reassured by being hugged, stroked, or held.
2. If there is a potential medical disorder, talk with the person’s doctor.
3. If a medication might be contributing to the sleep problem, discuss this with the person who has prescribed the drug and ask if other options are possible.
4. The person with REM sleep behavior disorder is safest if sleeping in a big bed without another person in the bed with them.
5. Some studies have shown that exposure to bright light during the morning or daytime improves nighttime sleep. While I am not convinced that daytime bright light exposure is effective in improving sleep, it should not be harmful unless it distresses the person who has dementia.
6. When the person is in a facility, allowing them to be awake at night and sleep when they do is usually the best approach if a daytime activity program doesn’t help. If the person is at home and the caregiver’s ability to function during the day is impaired or the caregiver’s well-being is adversely affected, then a cautious trial of medication might be warranted.
7. No medications are FDA approved to treat sleep disorder in people with dementia, and there are no convincing studies demonstrating the efficacy of any medication for improving sleep in people with dementia. However, if all the above have been considered, and interventions based on them have not helped, and the problem persists, and if the person with dementia’s inability to sleep at night is interfering with the family caregiver’s well-being, a medication might be considered. In general, benzodiazepine sleep medications such as Ativan (lorazepam), Valium (diazepam) and Klonopin (clonazepam) are as likely to cause paradoxical worsening of sleep, memory, and behavior and to increase the risk of falls as they are to help, so I think they should be avoided if possible. Antipsychotic drugs increase the risk of death in people with dementia and it is my opinion that they should not be used as a sleep aid unless there is some other symptom that requires their use (see Q92). Some doctors prescribe imidazopyridines (such as Ambien [zolpidem], Sonata [zaleplon], or Lunesta [eszopiclone]); melatonin; or the antidepressant trazodone, even though these drugs have not been shown to be effective. If a brief trial at an appropriate dose is unsuccessful, the drug should be discontinued. Again, studies have not shown these drugs to be beneficial in people with dementia.
Q79. What can I do when my husband, who is diagnosed with Alzheimer disease, demands to drink alcohol? If there is no alcohol in the house, he threatens to go buy it himself. Is he drinking because he wants to escape the thought that he has dementia, or because he can’t remember how much he has consumed? The doctor said he could have 2 drinks a day to relax. Is he doing himself any harm physically? Will it make his dementia worse?
A79. The injured brain is more vulnerable to almost all drugs and medications. This is especially true of mind-altering substances that are taken to affect how people feel. It sounds as if your husband has been drinking alcohol for a long time. A few people begin drinking heavily as a result of dementia, and that raises different issues.
Since you discussed this with your doctor, I assume your husband is not having health problems as a result of his current alcohol intake. If he is, then his cutting back on the amount of alcohol he is drinking would be a higher priority.
Are there problems arising from his drinking now? Is he more belligerent, aggressive, or tearful? Has it increased his risk of falls? Again, if any of these is true, then helping him cut back is a high priority.
If there are no obvious problems now and drinking is one of your husband’s pleasures, then I would agree with your doctor. However, as the dementia progresses it is very likely that he will not be able to tolerate alcohol as he has in the past. You will need to control both how it gets into the house and how it is dispensed once in the house.
You may be able to call the store where he buys alcohol and get them to agree to stop selling to him. If you are able to control the amount he drinks you could try to serve fewer drinks or to water down the drinks you serve him.
Actions such as serving watered-down drinks are underhanded and deceptive, but they would allow him to have the pleasure of drinking while also lowering the risk. If he detects the dilution (this has happened with people I have cared for) and becomes upset, then you should not do it.
Treating alcoholism is difficult whether the person has dementia or not. You may have to consult an expert, but since he has dementia it is unlikely that any treatment program would be available to help him and you.
As with all decisions involving the care of people with dementia, you are doing what you can to maximize his quality of life and moderate his risk of harm. Over time the risk of harm may increase. If it does, you will need to be more restrictive, if you can. Right now, alcohol is a positive for his quality of life from his perspective. This supports allowing him to drink unless alcohol presents a danger.
Q80. My husband has fairly advanced Alzheimer disease and is not able to talk in full sentences. He looks sad and I worry he is depressed. How do you diagnose depression in a person who isn’t able to understand questions about it?
A80. One of the challenges in identifying depression in people with dementia is that many people with dementia either cannot understand the questions they are being asked or cannot remember how they have been feeling in recent days or weeks. Family members, on the other hand, can often describe symptoms compatible with depression in their loved one.
Depression should be considered if a person:
Q81. My wife has Alzheimer disease and seems depressed to me. She had an episode of depression after the birth of our second child and seems the same way now. Might counseling or medication help, even though she has dementia?
A81. In my experience, people with early dementia who are aware of their diagnosis can discuss their concerns and symptoms and may benefit from talking about them. Some people with both dementia and clinical depression (see Q80) benefit from increased stimulation, group participation, and physical activity.
The studies of antidepressant medications as a treatment for people with both dementia and depression have shown mixed results. About half show a benefit and about half do not (see Q49). If the symptoms of depression are severe, medication should be considered, in my opinion, but the nonmedication approaches should always be tried as well.
People who have had an episode of clinical depression prior to developing dementia are at increased likelihood of becoming depressed after their dementia develops.
Q82. My mother asks the same question over and over, even within a minute. Is there anything I can do?
A82. Repeatedly saying the same thing, whether it is a question or a statement, usually reflects severe memory impairment. The person does not remember having just asked the question or making the statement. It can also reflect language impairment if the person with dementia is unable to talk in complete sentences or have a conversation in which there is the usual “back and forth.”
Repetition may also reflect boredom or fear of being alone, or it may be a way for people with dementia to combat the worry and anxiety that accompany not knowing where they are or what is happening next.
There are several things to try. For people who are worried or anxious, try reassuring them that everything is fine and that you are taking care of things. You might ask them if they are afraid or worried, but if that upsets them further, try other strategies.
Boredom can be counteracted by trying to engage the person in activities such as going on a walk, talking with others in a group, playing a game, or having a conversation about issues they enjoy, such as what the grandchildren are doing. Previously enjoyed activities are more likely to engage people than activities they have never done before.
Gently moving the focus of the conversation to a topic related to whatever they are repeating might help. For example, if the person keeps asking when her mother is coming to pick her up, ask her about her favorite memory of her mother or talk about some other issue that involves her mother, such as your favorite remembrance (even if her mother is deceased).
Breaking a cycle of repetition sometimes requires lying. The ethics of this is discussed in Q88, Q96, Q97, and Q98.
Q83. I work in a nursing home. How can we tell when people with severe dementia are in pain? Does dementia cause hypersensitivity or lack of sensitivity to pain?
A83. Pain is an important issue, whether the person is at home or in long-term care. The common causes of dementia do not impair or lessen the ability to experience pain, but detecting it can be challenging. What dementia does impair is people’s ability to express that they are in pain, to describe what they are feeling, and to recognize what is bothering them. If they have had a stroke that affects sensation, they may have a diminished or increased ability to experience pain in one part of the body.
People with dementia may not be able to say that they are in pain, describe what time of day it occurs, or describe where their pain is located. Therefore, caregivers must be attuned to the possibility that people with dementia who are crying, not moving a body part, becoming less involved in activities, becoming more irritable, or striking out, may be in pain. This means it is important to ask every person with dementia who is exhibiting any of these signs whether they are in pain. They may be able to respond accurately but might not. If a person appears to be “guarding” or not moving a body part, ask their permission to touch and gently move it. If the person grimaces, then further investigation is indicated. Look for bruises or other evidence of an injury.
If the person is in a facility, inform the staff and ask that a medical professional examine the person. If the person is at home and pain is a possibility, notify a medical practitioner. A thorough physical examination can detect and localize pain.
I have had patients who may have been in pain, but neither the family, other staff, nor I could be sure. Attempts to soothe them, redirect them, engage them, or otherwise involve them failed. Such situations are uncommon, but when they happen, a trial of an analgesic (pain medication) is worthwhile. Giving the person several doses of acetaminophen (Tylenol) or ibuprofen (such as Motrin), if not contraindicated, is one way to assess if a noncommunicative or agitated person is in pain. A cautious trial of a low-dose opiate is occasionally appropriate.
Q84. My husband sometimes cries suddenly, especially when we are in public. Why does this happen and can I do anything to help him feel better?
A84. Sudden crying can indicate pain, depression, fear, or a sense of being overwhelmed (see Q78, Q80, Q81, Q82, and Q83). Ask yourself if the crying always occurs in a specific circumstance. This might identify the trigger.
If pain or depression is a possibility, talk with his doctor. If he appears frightened or overwhelmed before he cries, think about changing the environment so it is less stressful, more supportive, and more attuned to his needs.
In addition, a disorder called “pseudobulbar affect (PBA),” sometimes referred to as “emotional incontinence,” can occur in people with brain damage due to dementia, brain trauma, multiple sclerosis, multiple strokes, or ALS (amyotrophic lateral sclerosis). PBA is characterized by sudden crying or laughing. Sometimes there is a trigger but sometimes not. If there is a trigger, the crying or laughter is often out of proportion to whatever is stimulating it. Many people who have PBA describe their crying or laughing as “more extreme” than they are actually feeling and will say that it is not a genuine reflection of what they are experiencing. Many of these individuals can identify a trigger, for example, the national anthem, a sad scene in a movie, or a photograph of a familiar person, but still say that they are not feeling as upset as they look. Some people have easily teared up all their lives, and for them this is normal.
Explaining that this is a symptom of their illness helps some people accept it and be less distressed by it. Others complain of being embarrassed by the expression of this extreme emotion. One medication, Neudexta (dextromethorphan/quinidine), has been approved by the FDA to treat this condition. While not FDA approved to treat PBA, standard antidepressants can also diminish or abolish frequent crying in some people and may be less expensive.
Q85. My mother has pretty advanced Alzheimer disease. I try to visit her at least twice a week but am at a loss about what to say to her. Having a real conversation is hard. Any suggestions?
A85. When I was first learning about Alzheimer disease, I came across an article by geriatric psychiatrist Jack Weinberg titled “What Do I Say to My Mother When I Have Nothing to Say?” In the article Dr. Weinberg answered his own question. He wrote that he came to realize that the most important things to his mother were his visits and the fact that he and she were talking to each other, not the specific content of their conversations. He also realized that repeatedly having the same conversation might be boring to him, but it was not to his mother. She loved hearing about the grandchildren, about his current work, and about other events in his life, even if they had talked about it 5 minutes or 5 days ago.
Dr. Weinberg’s observations helped me realize the value of seeing things from the perspective of the person with dementia. Having a conversation is what is pleasurable at that moment. Whether the person remembers that they had a similar conversation recently is unimportant. People with severe memory impairment are “living in the moment.” For them, interacting with people is their greatest source of pleasure. This can help overcome feelings of being alone, lost, or in an unfamiliar place. Your mother may not remember that you had visited earlier in the day or yesterday, but she will know, while you are talking with her, that you are her daughter and that you are important to, and enjoy, each other.
Often, what is most important to a person with dementia is visits from loved ones, not the specific content of their conversations.
Q86. What can I do to deflect or redirect my wife’s infidelity accusations?
A86. Unfortunately, this is a relatively common symptom. In fact, Dr. Alzheimer’s initial patient had this symptom. She became increasingly distressed and physically aggressive, and these were the triggers that led her husband to bring her to a doctor for an evaluation.
I assume the accusations are false. Unfortunately, it is sometimes impossible to convince others that this is the case. However, there are often aspects of the ill person’s complaint which show that the accusation is a symptom of an illness and not true. For example, one patient I treated with this symptom repeatedly told me that she knew her husband was having an ongoing affair because she saw wrinkles in the blanket on their bed almost every day.
I also assume that, like the husband of Dr. Alzheimer’s first patient, you have told your wife that her concerns are not true. If you have not done so, it is reasonable to do so once or twice, just to convince yourself that this doesn’t help. It is also worth trying to change the subject, have her engage in activities with others, enroll her in day care, and even tell her that the infidelity has stopped.
In Q88, Q96, Q97, and Q98, I discuss some of the ethical challenges that arise when we lie to a person or don’t directly address their concerns, correct incorrect ideas, or address repeated complaints.
Part of the challenge of the symptom you are describing is that the person with dementia who is making the accusation is often repeatedly telling others about it—children, friends, neighbors, and professional caregivers. I think it is OK to tell these individuals, in private, that your wife’s accusations are not true but are a symptom of her illness. Tell them that you are trying to shield her from the distress that these thoughts are causing and could use their help. I suggest telling them it is OK for them to tell her that they will ask you about it, to tell her that they will look into it, or to comment on how distressed she looks. If any of these replies stop her from making the accusations (usually temporarily) or seem to help her calm down, then that is the best that can be done.
Rarely, these beliefs lead to physical aggression. If this happens repeatedly and her concerns cannot be deflected, then a very cautious trial of medication might be necessary. If the symptom occurs only when you are present, and her distress cannot be relieved, then you might need to spend less time with her.
Untrue accusations of infidelity are common. If telling the person once or twice that it is untrue doesn’t help, try to
If you find something that works, do that whenever you need to, if you can.
It is also important for you to get your own support. Accusations like this hurt. Being able to talk to someone (a friend, family member, clergy, or mental health professional) about your hurt, frustration, sadness, and loss (of her companionship, for example) doesn’t make the problem go away, but it can help you from becoming overwhelmed by it.
Q87. My husband was always gentle and calm. Now he gets angry at the drop of a hat. Are there things I can do to address his anger issues?
A87. About 30% of people with Alzheimer disease undergo what people describe as a change in personality. I’m not always sure what this phrase means, since some people seem to be themselves in many situations but different in the way you have described.
If your husband is himself in many situations but becomes easily angered, you are describing what is sometimes referred to as a “catastrophic reaction.” This term refers to the fact that the person seems to be reacting as if there were a major catastrophe when the trigger was either minor or indiscernible. Catastrophic reactions are common in people with all types of brain disease. They reflect a problem with modulating or tamping down emotional responses. They are thought to reflect damage to the frontal lobes (see the figure in Q18), the part of the brain that assesses social circumstances, helps us use thinking processes to control our emotions, and contributes to mental flexibility in the face of challenges.
Catastrophic reactions usually develop quickly. They are characterized by facial flushing, verbal expressions of anger (including yelling), and, sometimes, physical expressions of anger such as pushing or striking out.
The triggers of catastrophic reactions differ from person to person. They can seem quite minor but are overwhelming for that person. If triggers can be anticipated, do your best to avoid them, but recognize that this is not always possible. Examples of triggers that are sometimes unavoidable are necessary daily routines, medical care, and avoidance of unsafe situations. In addition, environmental stimuli such as a siren or a crying baby can trigger a catastrophic reaction.
Catastrophic reactions can sometimes be detected at the very beginning, especially by a caregiver who knows the person well. Early manifestations of a catastrophic reaction include facial flushing, restlessness, mumbling, or signs of distress.
If the triggers cannot be anticipated, avoided, or minimized, or if a catastrophic reaction has already begun, its severity can be lessened or minimized by distracting the person or removing them from the situation. The care provider should remain calm but in charge. It usually helps to reassure the person that you recognize the problem, that you are addressing it, and that they will be safe. Care providers should avoid raising their voice, grabbing the person, appearing frightened, or acting overwhelmed. Some people with catastrophic reactions are helped if their emotional upset is acknowledged, but others are made worse by commenting on their distress.
It is not always possible to avoid the events that trigger a catastrophic reaction. Steps that may help abort the reaction or minimize its severity include
Q88. My wife cries almost every afternoon because she thinks her mother should be picking her up and is late. When I tell her that her mother died 25 years ago, she becomes even more upset and often begins to cry.
A88. The term “sundowning” is often used to describe the regular occurrence of distress and agitation in the late afternoon or evening. Interestingly, it has been very hard for researchers to verify that distress and agitation occur more often at one time of day than another.
It is less important to prove that sundowning exists than it is to help people who are reported to have this problem. Potential causes include boredom, fatigue in the person with dementia, fatigue in the caregiver, lower staffing ratios in the afternoon and evening, and more noise and stimulation later in the day because visitors tend to come later in the day. I doubt that lower light levels play a major role, because there is no evidence that sundowning occurs later in the day during the summer, when it stays light outside much later.
You might try to:
I recommend trying one approach at a time, because that makes it easier to determine what doesn’t work and what does.
It almost never helps to “correct” the person (for example, “Dear, don’t you remember? Your mother has been dead for 25 years.”). See Q96, Q97, and Q98 for more discussion of this issue.
Q89. My husband has been in an assisted living facility for 6 months. For the past month he has been spending all his time with one female resident. They often walk the halls holding hands and talking to each other. Lately, he doesn’t even seem to know me when I visit. I am sure that he was faithful to me during our 45-year marriage, so this is a shock. What should I do?
A89. I can understand your surprise and hurt. It is likely that he does not recognize you because he has the symptom called “agnosia,” in which people are not able to recognize familiar faces, places, or objects (see Q8 and Q76). If this is the case, telling him who you are will not help. His “ignoring” you is not a purposeful action. It is a reflection of his inability to recognize who you are.
He may still enjoy your visits, even if he does not know exactly who you are. If he does not interact with you or always becomes upset, then you might have to decrease the frequency of your visits. If you have to do this, I encourage you to touch base with the staff regularly to make sure he is being well cared for.
In my experience the ability to recognize familiar people sometimes comes and goes, especially when it is a new symptom. He might recognize you one time and not another. When he does not recognize you, I recommend limiting the time you are there—this will be better for both of you.
In some ways you are experiencing a double loss. Your husband has been changed by his dementia and your marriage has been taken from you. Discussing your feelings with family, friends, staff, or a professional counselor may help.
Q90. My father is very ill with cancer and likely to die soon. My mother, who has had Alzheimer disease for 4 or 5 years, seems unaware of this, and we haven’t brought it up. Should we discuss his illness with her now? If he dies, will she remember that? If she doesn’t remember, should we keep reminding her?
A90. Grieving is a long-term process. Most people need to talk about potential or actual losses and feel comforted by the ability to do so with people they are close to. If your mother has not noticed that her husband is ill, it is likely but not definite that her unawareness is coming from her illness. Nonetheless, I think she should be told how ill he is, because we cannot be sure what she does and doesn’t know. You can use her response to guide you in what to do next. If she becomes upset and is able to talk about her feelings, then she should be supported, listened to, and empathized with as you would anyone in that situation. If she isn’t able to understand what you are telling her, denies that he is ill, or repeatedly becomes upset and is unable to talk about her feelings, you should stop bringing it up.
I would approach the question of what to say to her after your father’s death in a similar fashion. Informing her when it happens, as you would anyone, seems appropriate. If she forgets quickly, repeatedly becomes distressed when you remind her of his death and then again forgets it several minutes later, or seems unable to talk about it, it is likely that her illness has robbed her of the ability to grieve.
Many people with dementia, even advanced dementia, seem to have some remembrance of a significant loss, even though they are vague on details. This awareness might come out during a conversation, even if they are unable to retrieve the information when asked directly. If this is the case, I recommend using their reaction as a guide for what to do next. If you say something like, “I really miss Dad a lot, too,” and your mother becomes very agitated, I would be hesitant to continue the conversation. Helping her calm down by holding her hand, hugging her, just being with her, or changing the subject might be best. If she becomes tearful, seems to understand, and seems to be benefiting from the discussion, then proceed as you would with anyone in this difficult time. In the end, you should do what seems best for your mother’s emotional well-being.
Q91. Why do people with dementia develop swallowing problems?
A91. Swallowing requires the coordination of muscles in the mouth and throat and requires the closing off of the breathing tube (trachea) and the opening of the swallowing tube (esophagus). The centers of the brain that control these functions are located in the brain stem, which is at the bottom of the brain (see the figure in Q18).
Most progressive dementias either directly damage the areas of the brain that initiate and coordinate swallowing or they damage fibers that come into those areas of the brain from above. This happens earlier in some diseases than others.
When the swallowing mechanism becomes paralyzed or uncoordinated, liquids and solids can go into the lungs (because the trachea has not been correctly closed off) instead of down the esophagus. This is referred to as “aspiration.” Aspiration can lead to pneumonia due to chemical irritation or infection.
If a stroke damages the swallowing control system, swallowing problems develop immediately. Since most dementias progress slowly, the swallowing problems they cause develop gradually. At first a person might choke occasionally, especially on thin fluids like water or on poorly chewed food. Secretions are constantly being produced in the nose and mouth, and these might also stimulate coughing when they go into the breathing system. Some people have reflux, a regurgitation of stomach contents up the esophagus, which can lead to aspiration.
Speech and language pathologists can evaluate a person’s aspiration risk and advise steps that can be taken to lessen this risk, including the use of thickened liquids and pureed food. These may lessen the risk of aspiration, but they cannot fully prevent it. Feeding tubes do not prevent aspiration, either.
Q92. Why do people with dementia lose the ability to walk?
A92. In Alzheimer disease, the brain cells directly controlling the muscles of the legs are not impaired, but the pathways that connect these cells to other parts of the brain become damaged. Walking ability gradually declines as these connecting pathways are destroyed.
Early impairment of balance can occur in Parkinson disease (Q17), whether or not dementia develops, and in dementia with Lewy bodies (Q16). Progressive supranuclear palsy (PSP) and cortico-basal degeneration (CBD) can also impair walking early in the disease. In vascular dementia, strokes either directly kill the cells that control leg movement or impair the pathways involved in walking. As a result, walking difficulty due to vascular brain disease usually develops suddenly.
Any person who develops unsteady walking within the first year of developing symptoms of dementia should be assessed for normal pressure hydrocephalus, which can be treated if recognized early.
Normal pressure hydrocephalus (NPH) causes unsteady walking, urinary incontinence, and dementia. These symptoms often begin within 6 months of the first symptom. Importantly, NPH can be treated if recognized early. Any person who develops unsteady walking within the first year of developing symptoms of dementia should be assessed for NPH.