Q37. Can people with Alzheimer disease learn new things? My husband was diagnosed about a year ago and can remember some things (not everything, but neither can I) that happened days ago.
A37. The answer is “definitely yes” and “it depends on the cause of their dementia.”
People with mild cognitive impairment (MCI) and mild Alzheimer disease are able to learn new information, although not as well as they once did. As MCI evolves into Alzheimer disease or another cause of dementia, this ability to learn and retain new information becomes increasingly impaired.
There are several different types of memory. Alzheimer disease initially impairs the memory system that is responsible for the learning of facts—for example, remembering what you ate for breakfast this morning. Information that has strong emotional significance, whether positive or negative, is more likely to be recalled.
The ability to learn new tasks, called “procedural memory” or “motor memory,” is relatively preserved in people with early and mid-stage Alzheimer disease. This ability may even be present into later-stage disease. As a result, people with Alzheimer disease can learn to do new activities. The ability to learn a new task improves with repetition, as it does in everyone. The learning of a new task is also enhanced by starting small and building up to more complex sequences, and by minimizing the pressure to learn.
Because there are multiple types of memory, and because each type of memory involves a somewhat distinct set of brain structures, different causes of dementia lead to impairments in different types of memory or to the development of impairments in a different order. For example, the dementia of Parkinson disease initially impairs the ability to access memory. As a result, people with the dementia of Parkinson disease are slow to answer questions and to perform requested actions but retain the ability to learn new facts into the moderate stages of dementia. In the early stages of frontotemporal dementia (FTD), memory for new facts is often normal. Generalizations about memory cannot be made about vascular dementia because the location of the strokes in any particular person determines what structures and systems are impaired.
Q38. What do you think about music therapy?
A38. Many people with dementia respond to music in a very positive way, especially to music they knew and enjoyed earlier in their lives. Examples include popular songs from their youth and younger adulthood, hymns, anthems, and the alma mater of their high school or college.
Music has a number of elements to it. These include rhythm, tune, words, and tempo. To some extent, each involves a different brain area. This may explain why some people who have lost the ability to speak can still sing, or why someone who has trouble dressing can still play an instrument like the piano. Also contributing to the high value that most people and cultures place on music is its engagement of and association with particular emotions (see Q37). These emotional linkages probably strengthen the memory for familiar music.
Music is an effective and important form of treatment for many people with dementia. The joy it brings them attests to its power. If the person with dementia is unable to identify favorite songs or types of music (hymns, classical, rock ’n’ roll, or hip hop), family members or friends might be able to do so.
Music engages many people with dementia. It provides pleasure and helps them maintain connections with their past and with others.
Q39. My wife used to love the symphony but recently she has been very reluctant to go. The last time we went she demanded that we leave early. Isn’t it important for her to stay active?
A39. Yes, helping your wife stay active and engaged is important, but she should be the guide and have the final say in what she wants to do. Taking her to the symphony makes sense, since this is an activity she has always enjoyed, but her behavior might be telling you it is now overwhelming her. She may be uncomfortable sitting for a long period or being with a large number of people. If so, perhaps she would be more comfortable if you took her to a shorter musical event in a smaller setting. Perhaps she would enjoy listening to music from a playlist you put together for her, from an online music site, or on the radio.
I have what I jokingly refer to as “The Three-Strike Rule.” If you try something 3 times and your wife resists each time, it is probably overwhelming for her.
If you try something 3 times and each time it leads to distress or resistance, that likely is a sign that the activity is overwhelming for the person with dementia. If possible, avoid or minimize the frequency of that stimulus.
Q40. Does exercise slow down the progression of Alzheimer disease and other dementias?
A40. This is a controversial issue about which there is significant disagreement. Some studies have shown that people with mild cognitive impairment (MCI) and dementia have a slower progression of their symptoms if they participate in a physical exercise program, but others have not. When the studies are considered as a whole, the evidence is not yet convincing, in my opinion.
Physical exercise, including walking, has many benefits, including improving the quality of life for many people with dementia. Studies of exercise in middle-aged and older people have shown that it lowers the risk of future stroke and heart attack. Importantly, Tai Chi has been found to decrease the risk of falling.
My conclusion is that everyone should be offered the opportunity to engage in a daily physical activity program that is safe for them. People may choose not to become involved or to drop out. Clearly, it is inappropriate to force people to become more active. Finding out what people did earlier in life might identify activities they would be interested in doing now.
Everyone should be offered a daily physical activity program that is safe for them.
Some diseases that cause dementia impair balance, strength, and judgement. Before starting a new exercise program, people should be assessed to determine what they are capable of doing safely and what they are no longer able to do. Even if exercise does not slow the progression of dementia, its other benefits support the conclusion that everyone with dementia should be encouraged to exercise regularly.
Q41. What do you think of day care for people with dementia? It is expensive and I am not sure it is worth the money.
A41. I am a strong supporter of day care because it is a way for people with dementia to remain stimulated, active, and supported. At the same time, it is a way for family caregivers to get a break from their caregiving role.
If cost is an issue, ask what the minimum attendance is (how many days a week), and ask if there is a sliding-scale fee schedule based on your income or assets. Some programs have access to state funds, donations, grants, or “scholarships” for individuals who need financial assistance.
Q42. How will I know when to place my wife in a long-term care facility? Is it inevitable?
A42. Placement is not an inevitability for people with dementia, but there are many people with dementia whose care needs are greater than their family can provide. At any one time only about 30% of people with dementia live in assisted living or a skilled nursing facility, but for people whose dementia progresses to a severe stage, more than 75% live in a long-term care setting.
Most of the time there is no single trigger that leads to placement. Rather, an accumulation of issues, such as the need for physical care beyond the capability of the caregiver, ill health in the caregiver, behavioral symptoms that are beyond the family’s ability to manage, and multiple, chronic medical issues, together make it dangerous or impossible for the person to stay at home. My clinical experience is that families often wait until there is no alternative.
Possible placement should be discussed openly with family members. If people have different views of the needs of the ill person, you may need to get information from your wife’s primary care doctor or nurse, from a dementia care specialist, or from an occupational therapist who has done a home assessment. Everyone involved in the decision-making process should know what the ill person can and cannot do, what the person’s medical needs are, what the daily support needs are, and whether the current situation is safe. If you are the primary care provider you should feel free to openly discuss your emotional well-being, financial issues, and health issues. If disagreements can’t be resolved, try to find a third party such as a social worker, counselor, or dementia care expert who can guide the discussion.
Some people go to long-term care immediately after a hospitalization, but a majority move directly from their home. Research has shown that those who move to a long-term care facility are older and have more severe dementia, more behavioral and psychiatric symptoms, and fewer available family members to provide care.
Guilt about placing a person out of the home is common among caregivers. However, one study I carried out found that many people with dementia became more active when they moved to long-term care. Many caregivers felt that they and the person with dementia had benefited. A common reason cited by the caregivers was that they were no longer providing nursing care and so were able to return to the role of a loving family member.
One benefit of attending a support group is finding out that many others are struggling with the issue of placing a loved one. This may not lessen your guilt or make the decision any easier, but it can help to know that you are not alone in dealing with a disease that forces people to be moved to a place where they can receive 24-hour care. If you are struggling with the decision, it may be helpful to talk with friends who have faced the same decision or to discuss it with clergy, a social worker, or your doctor.
Q43. How do I find a good nursing home?
A43. If you know people who have previously placed a relative in long-term care, ask them if they are happy with that facility and why or why not. Ask members of your support group, the local Alzheimer support agency, your doctor, health practitioner, or clergy about facilities they know that deliver excellent care. Medicare publishes ratings of skilled care facilities, but these ratings primarily look at how facilities comply with regulations—an important issue but not one that is necessarily tied directly to the quality of care.
Visit several facilities. Is the person you talk with knowledgeable about the needs of people with dementia? Ask them what dementia-specific programs they offer and how they know what is best for an individual resident. Ask what kind of staff training they require and offer. Observe how the staff interacts with people who have cognitive problems. Are they engaged with them and treating them as people? Good facilities should not smell of urine.
Make sure you have adequate information about financial issues. What are the person’s remaining assets? Do they have long-term health care insurance? Will they need to spend down their assets to become eligible for Medicaid? Can they and you afford the facility that you choose?
Q44. I was surprised to learn that Medicare doesn’t pay for nursing home care. Why is that?
A44. Medicare was designed to be an insurance program for acute care needs. Since all dementias are chronic illnesses, long-term care services for dementia are not covered by Medicare. However, people with dementia may be hospitalized for acute problems and may need rehabilitation or brief, ongoing care such as intravenous antibiotics. These services are covered by Medicare.
When looking for a long-term care facility,
Some years ago, Congress passed a bill establishing a program for long-term health care insurance, but opposition was so widespread that the program was rescinded the next year.
Q45. My husband has been living on a nursing home unit that has locked doors because he had wandered away from home on several occasions. How do I know when it’s safe to remove him from this locked-door facility?
A45. Some people with dementia are at increased risk of bad outcomes from accidently or purposefully leaving where they live. They would be unable to find their way back and risk exposure to dangerous situations. Others have a very low or no risk of leaving, or live in a setting where going out the door leads to a safe enclosure. A general goal for all of us is to move freely about unless we are at a high risk of a bad outcome, such as a fall. At a minimum, this means that people who are at high risk of harm if they do go outside on their own should be able to move about freely within a facility.
If a person’s risk of wandering off is very low or nonexistent, then living on a unit that has locked doors seems overly restrictive to me, but some facilities offer only a locked-door environment. If your husband does not need the protection provided by a locked door, I suggest considering whether the benefits of where your husband is living now outweigh any potential benefits of his moving. If not, then moving him is certainly reasonable. However, if the locked door is primarily a concern of yours and not his, then moving him may be adding an unnecessary trauma.
The idea that some units have locked doors is distressing to many people. I believe they are sometimes a necessity, because we are obligated to protect people who are unable to protect themselves. Some people are so driven to leave that reasonable attempts to secure an unlocked exit are doomed to fail. For them, I know of no less restrictive environment than one in which the exit doors are locked.
Q46. Should I reintroduce my father’s dog, which we had to remove from his house because she was upsetting him?
A46. Many people with dementia respond just as positively to animals as do people without dementia. Most professionals have seen people with dementia who have been withdrawn and minimally responsive to human interaction become active and animated when dogs or cats are present. This is sometimes referred to as “pet therapy,” and it certainly deserves to be described as such. Several clinical trials of pet therapy for people with dementia have demonstrated a variety of positive benefits.
It sounds like you made the difficult decision to remove your father’s dog because you concluded that the risks of harm to the dog and upset to your father significantly outweighed the pleasure your father would have experienced. That certainly makes sense to me. However, I agree with you that it is worth trying to reintroduce his dog and see what happens. You might try having your father and the dog together several times to see if problems arise. If being around the dog still makes your father upset or exposes the dog to harm, then they should not be together.
One of the most important things I have learned about decisions like this is that you can only figure out the best answer by trial and error. There are many circumstances in which we don’t know what the right decision is and can only find out what is best by trying different approaches.
Q47. Do the anti-dementia drugs like Razadyne, Exelon, Aricept, and Namenda work?
A47. The evidence is clear that these medications work better than a sugar pill (placebo), but there is disagreement among experts about how much of a benefit they provide, how long they should be prescribed, whether they should be prescribed in very high dosages, and whether they are worth the cost.
About one-third of people with Alzheimer disease and Parkinson disease dementia experience a measurable improvement in thinking and daily function when treated with the anticholinesterase medications Razadyne (galantamine), Exelon (rivastigmine), or Aricept (donepezil). As I look at the evidence, which is contained in the package insert that pharmacists distribute with every prescribed bottle of pills, this benefit is the equivalent of about 6 months of disease progression. This means that if people start the medication in September and have an average response, they improve to the level of cognition and function they had the prior March. This describes an average response—some people will have no benefit, some will have an average response, and some will benefit more than the average.
Interestingly, for the first 3 weeks of treatment there is a “placebo response,” meaning that people who are randomized in research studies to take a non-active pill have the same benefit as people who take the active medication. By 6 weeks, though, this placebo response disappears and those on the active medication have improved cognitively while those on placebo have not.
The anticholinesterase drugs can cause a number of side effects. These include nausea, vomiting, diarrhea, slowed heart rate, falls, nightmares, and poor appetite.
If the drug is stopped after several months, cognition returns to where it would have been had the medication never been taken. This demonstrates that the medication has not slowed or reversed the underlying disease process that destroys brain cells and their connections to other cells. Rather, Razadyne, Exelon, and Aricept work by increasing the availability of a chemical, called “acetylcholine,” that is deficient. This is similar to what insulin does in diabetes and L-dopa does in Parkinson disease.
Memantine (Namenda) works differently from the anticholinesterase medications. It decreases the overstimulation of nerve cells that occurs when cells are injured. When prescribed alone it is not as effective in treating Alzheimer disease as the anticholinesterase drugs, but it is better than a placebo pill. One study has shown that the combination of memantine plus an anticholinesterase medication is better than a cholinesterase inhibitor alone (Aricept was used in the trial, but I presume the same would be true of Exelon and Razadyne).
Q48. How long should a person stay on anti-dementia medications?
A48. Many people who ask this question report that they see no benefit within several months of starting one of these medications or that any benefit they saw has disappeared. Unfortunately, all the studies that have attempted to answer this challenging question are significantly flawed.
The best study, in my opinion, examined people who had remained on Aricept and Namenda for 2 years and determined whether those staying on the medications for a third year were better than those who stopped the drugs. Everyone in the study declined in both thinking (cognition) and daily function during the third year, but those on Aricept declined less.
I interpret this result to mean that people who have remained on Exelon, Aricept, or Razadyne for a long time may still be benefiting very modestly. However, since most people do not stay on any anti-dementia medication for 2 years, there is no way to know how applicable the results are to people who have taken the medication for a shorter time. I know this is a frustrating answer, but it is the best information we have. Since the benefit is so modest, anyone experiencing significant side effects should probably stop the medication. If there are no side effects, then the decision to continue or stop anti-dementia medication depends on how one weighs the desirability of a small benefit.
Q49. What are your thoughts about medication treatment for depression in people with Alzheimer disease? What about other treatments?
A49. About 20% of people with Alzheimer disease have symptoms of clinical depression. Symptoms suggesting depression include either agitation or withdrawal, weight loss, disrupted sleep, and hopelessness (see Q80). The rate of depression is higher in people with vascular dementia and people with dementia due to Parkinson disease. The likelihood of having symptoms of depression at any time during the course of Alzheimer disease is 30% to 40%.
Only about half of studies of antidepressant medications in people who have both dementia and clinical depression have shown benefit. Likewise, studies of exercise alone have shown mixed results.
My opinion is that for a person with dementia who also has symptoms of mild or moderate depression, the first focus should be on making sure there are no medical illnesses or medications that might be causing depression. Also, the person should be offered and encouraged to engage in activities that they would enjoy and be able to participate in. Some people with mild cognitive impairment (MCI) and mild or moderate dementia are able to talk about their feelings and should be encouraged to do so. Although this has not been shown in studies to be beneficial, it seems a reasonable thing to try as long as the person agrees and is not upset by the conversation. Some people with dementia have symptoms of more severe depression. In my opinion it is reasonable to offer such individuals an antidepressant medication, even though the evidence supporting their effectiveness is weak.
Q50. Should people with mild cognitive impairment (MCI) take Aricept and Namenda?
A50. Neither drug is FDA approved for the treatment of MCI, and the evidence for any benefit is very weak. However, I know that some doctors do prescribe these medications for people with MCI, their reasoning being that every potentially beneficial treatment should be tried. While I would not do so, I think this is reasonable as long as the person with MCI understands the lack of evidence of benefit and accepts the risk of side effects.
Q51. What do you think about preparations like ginkgo, coconut oil, turmeric, and jellyfish protein?
A51. Of these, ginkgo is the best studied and has not shown any benefit as a treatment for Alzheimer disease. The other 3—coconut oil, turmeric, and jellyfish protein—have not been adequately studied, but the little evidence I have reviewed does not suggest they are beneficial, for either the prevention or the treatment of Alzheimer disease.
Coconut oil may elevate blood lipids, which is potentially harmful.
I see no harm in trying these, since side effects are rare, but they can be expensive. On the other hand, I worry about raising hopes unrealistically. Benefit from any of these is very unlikely.
Q52. Why do antipsychotic drugs increase death in people with Alzheimer disease? Are they ever appropriate? What are alternative approaches to problematic behaviors?
A52. Antipsychotic drugs such as Seroquel (quetiapine), Abilify (aripiprazole), Haldol (haloperidol), and others have been greatly overprescribed for people with dementia. They have been used to treat sleep problems, pacing, wandering, complaining, and mild suspiciousness. There is no evidence that antipsychotic medications are effective in treating these issues and a great deal of evidence that these drugs cause many severe side effects. All drugs in this class have been shown to increase mortality rates in people with dementia between 60% and 100%. This increased death rate occurs within 12 weeks and persists for at least 1 year after treatment starts; it may continue as long as people are taking the drug.
This increase in mortality is likely due to multiple causes. People with dementia who take antipsychotic drugs are more likely to die from cardiovascular disease, infection, and, probably, fall-associated mortality.
In the rare circumstance in which these medications are necessary, they should be prescribed in the lowest effective dose, stopped if there is no benefit, reassessed after several months even if effective, and discontinued if at all possible.
A small percentage of people with dementia have physical agitation or delusional (untrue) beliefs that are causing them significant distress and interfering with their ability to enjoy life. Rarely, very agitated people with dementia cause harm to others. To address these issues, most expert clinicians agree that non-drug approaches should be tried before antipsychotic medication unless there is an acute emergency for which no treatment other than medication is available. The first step in addressing physical aggression and delusional beliefs is to determine if there are triggers that can be addressed. The triggers might be medical, emotional, neuropsychiatric (such as hallucinations or delusions), or environmental. There are often multiple possibilities, so it can take time to go through them. Trial and error, that is, seeing if something works and, if there is no benefit, going to the next possibility, is an important principle. If the solution were obvious it probably would already have been tried (see Q46).
Antipsychotic drugs are rarely necessary to treat symptoms of dementia, and they increase mortality rates in people with dementia between 60% and 100%. In the rare instance in which they are needed, they should be prescribed in the lowest effective dose, stopped if there is not significant benefit, reassessed after several months even if effective, and discontinued if at all possible.
Whenever there has been a sudden change in behavior or alertness it is imperative to consider whether a new medical event has occurred. It is also important to review whether any new medications have been added or medication dosages changed within the prior month, since these may trigger changes in function and behavior.
While the assessment for possible causes of physical agitation and delusional beliefs is underway, attempts should be made to involve the person in activities they are able to do and might enjoy. Although some individuals with dementia choose not to engage in activities, you are more likely to find something they would enjoy by trying to determine what activities they participated in prior to becoming ill.
When trying to engage people with dementia in activities, avoid pushing them to do things they are no longer able to do. Personal preference is of primary importance. Many people (with and without dementia) do not know if they would enjoy a new activity and will respond positively to encouragement and support.
Q53. What is respite care? I understand that some states pay for this as an alternative to long-term care placement.
A53. Respite care refers to services that provide 24-hour care for a brief period of time for people with dementia so their caregivers can have some time away from the caregiving role. For care providers who are at their wits’ end and are feeling overwhelmed, respite care can be a life saver.
You are right that some states are providing a respite care benefit in the hopes of delaying or preventing placement in long-term care, but it has not been proven that respite care delays moves to long-term care. Even so, I believe respite care is a wonderful temporary resource, and I strongly recommend it.
Q54. My mother has lost a pound or two a month for the past 6 months. Should I worry? Her appetite seems good when I am with her.
A54. In the general population, people over age 70 lose a pound or two per year on average. This is not explained by illness or lack of access to food.
If someone with dementia loses weight more quickly than this, a reason should be sought. For example, some people have always eaten between meals, so when snack foods are less available to them, they lose weight. Some older people have impaired taste and smell. If this diminishes the pleasure they get from food, they may eat less.
Many of the diseases that cause dementia impair chewing and swallowing in the more advanced stages of the disease. If people with dementia cough when drinking or choke on food or fluids, they may have a neurological impairment of the swallowing mechanism or be unable to coordinate the multiple actions that go into drinking, eating, and swallowing. Speech and language pathologists are experts in assessing swallowing and may be able to identify a cause and make recommendations that improve a person’s ability to eat and take in calories.
In end-stage dementia some people seem to actively resist eating. When I examine such people, they usually have a strong suck reflex, something that is seen in newborns. One manifestation of this reflex is biting down on a spoon or other eating utensil that is put into the mouth. One sign of an impaired chewing and swallowing mechanism is the accumulation of food in the cheeks.
If no treatable cause of a swallowing disorder is found, several steps can be taken to improve calorie intake. These include serving foods the person has always liked, allowing people to finger-feed themselves, taking time (even 60 to 90 minutes) to feed those who are unable to feed themselves, providing small amounts of food throughout the day, pureeing food if the person cannot chew, and using thickened liquids, which are easier to swallow than thin liquids.
There is no evidence that feeding tubes prolong life or prevent aspiration (the introduction of food or secretions into the lungs) (see Q91). In my opinion, the decision to place a feeding tube is as much an ethical question as a medical issue (see Q101), and the substitute health care decision maker or family members should have the final say (usually the person with advanced dementia is no longer able to participate in the discussion).
Q55. Are people with Alzheimer disease eligible for the hospice benefit under Medicare? If so, what symptoms suggest that a person with dementia is appropriate for hospice care?
A55. Yes, people with dementia are eligible for hospice care and now make up a significant proportion of those who receive treatment under the Medicare hospice benefit. In the past there were specific hospice eligibility criteria applicable only to people with dementia, but now the standard is that a physician certifies that the person has less than 6 months to live. Hospice should be considered for people with dementia who have had more than one episode of pneumonia, who are losing weight in spite of appropriate efforts to feed them, and who are bedridden or unable to walk independently. Among the benefits that hospice provides are help with daily care needs, increased focus on comfort and pain management, support of the family, and helping loved ones prepare for the person’s death. Most hospice care is provided in people’s homes or in long-term care facilities, not at an inpatient hospice facility.
Q56. Do people die from Alzheimer disease?
A56. Pneumonia is the most common cause of death in people with dementia. Because all the diseases that cause progressive dementia eventually impair swallowing, people with advanced dementia from any cause are at high risk of aspiration, meaning that food, secretions from the mouth and nose, and contents of the stomach go into the lungs rather than down the esophagus (the swallowing tube that connects the mouth and the stomach) (see Q91). Aspiration is a common cause of pneumonia.
People with dementia are at high risk of falling and breaking a hip or other bone, of developing side effects from medications, and of developing delirium (see Q70). All of these shorten life expectancy in people with dementia.
Because the dementia is the direct cause of the swallowing impairment, and because the swallowing impairment leads to aspiration and pneumonia, the dementia is considered to be the initiating cause of death when a person with late-stage dementia dies from pneumonia. This is true for all diseases that cause progressive cognitive decline. Since Alzheimer disease is the most common cause of dementia, it is often stated that Alzheimer disease is the fifth or sixth most common cause of death in the United States.