agitation

Music and Dementia: What’s the connection?

In my practice, as I see patients with dementia in their homes and in assisted living communities, throughout the San Francisco Bay Area, I am often struck by the difference in patients surrounded by silence, and those surrounded by music.

I would attest to the power of music. The most joyous time I saw in dementia care was when the drumming man came with his drums and was singing and drumming. The group was so energized! An elder with Parkinson's who rarely moves was banging on the drum with joy. I can see how the iPod would be helpful, but also the communal sharing of music is an experience that transcends.

Music must be appropriate, however. I once entered a dining room in a dementia community, with 25 elders and their aides having a meal, with the TV on very loudly, playing RAP music. I was annoyed upon entering the room, not to mention the obvious agitation of elders in the room. I immediately insisted that the channel be changed to ‘big Band’ music and the tension in the room eased immediately. The music should be chosen for the elders, not for the entertainment of the young aides or family members.

A new documentary movie is coming out in August, “Alive Inside” about the miracle of music therapy for Alzheimer’s patients. Here is the link to the website with a trailer and more information. "Alive Inside" received the “Audience Choice” award at Sundance 2014. It shows the power of music in bringing patients with dementia back into 'life'. http://musicandmemory.org/

In dementia, we often are trying to decrease antipsychotics, and truly music and engaging activities are crucial in helping with this. Music can bring us to a happier place, to a calm and contented place, or to times when we were independent and having fun. It can change a mood in a much easier way than drugs. Find out what music your loved one enjoys- it may be classical, it may be blues, it may be Elvis. Whatever their taste, play it often and enjoy with them.

It is certainly worth a try.

Dementia Myth No. 2: Bad Behavior Results from Unmet Needs

I have a bedridden dementia patient who is lucky to be able to remain in her house. She receives 24/7 care from long-suffering, dedicated and kind nurse’s aides. Her family has returned from the East Coast, and renovated the lower floor of the house into an “in-law” apartment so that they can be there for her. There’s always someone with this patient. Her daughter prepares her favorite meals. She seldom has to wait more than a few seconds before her caregivers attend to whatever she wants. Nurse practitioners from both my practice, and from a hospice agency check on her weekly.

This patient has no “unmet needs.” She is surrounded by people who care for her conscientiously. I and my staff monitor her medical issues, which are many. Her caregivers make sure she is clean. Her family keeps her well-fed and entertained. She can decide what she wants to do and when.

Yet even with this careful care, with constant check-ups and adjustments to her daily routine and to her medications, this patient acts out. She cries, “Help me! Help me!” endlessly, even though someone is with her at all times. She will refuse to take her medications. She will refuse to allow herself to be bathed. She will refuse to allow her caregivers to change her diaper. She will refuse to eat. She will argue. She will get nasty.

Even at this, her attitude is far better than it would be without careful management of her case. Without a complicated regimen of medications, her behavior would be far worse. In the hospital, she has thrown metal meal trays at nurses. She has tried to bite her caregivers, who have been with her for almost a decade. She has kicked and screamed.

Why am I detailing this case? Because I think it illustrates that even with extraordinary day-to-day care, even with careful medical monitoring, dementia patients may still exhibit bad behavior.

In the field of geriatrics, many hold the view that “All bad behavior results from unmet needs.” The idea is that dementia patients cannot communicate what they want. They get frustrated. Then they act out. The idea follows that if you love these patients enough, if you attend to their needs effectively, then the bad behavior will disappear.

I think this idea is far too simplistic. I think this idea makes family members and caregivers feel guilty needlessly. I think this idea often keeps psychiatric help from troubled dementia patients who need it.

Of course, we should first rule out “unmet needs.” Caregivers and medical professionals should always investigate whether an underlying pain or medical problem is causing a problem behavior. They should always first try to adjust day-to-day routines to respond to an issue.

But sometimes, many times, you do everything, you rule out everything, and still the problem behavior persists. Even if you do manage to make the problem a bit better, you may not be able to make it disappear completely.

Alas, in many cases, you simply cannot “love away” a behavior problem in a dementia patient. And thinking that you always can make dementia better with more love and care ignores what a complex and difficult disease this is.

If you have an elder who is behaving in ways that cause problems, don’t assume it’s your fault. Get help. Do what you can. If the solution isn’t perfect, accept that.

Elizabeth Landsverk, MD ElderConsult Geriatric Medicine

Dementia Myth No. 1: You can predict the progress of dementia

No, I’m afraid that you can’t. As I stated in my previous post, we as a society cling to the idea that dementia is simply a gradual fading out, a progressive loss of memories and self-awareness. While that’s not exactly comforting, it’s less disturbing than many of the cases that I see every day:

Confused elders whose illness has made them so anxious that they live in a state of constant terror.

Elders whose disease has made them dangerously paranoid, unable to trust anyone, convinced that everyone is trying to hurt them or kill them.

Elders who hit and bite and kick anyone who comes close to them, making it next to impossible to care for them properly.

Elders whose dementia has erased all their inhibitions, making them hypersexual. These elders make inappropriate comments. They may grope passers-by. They may make advances on caregivers, family members, you name it.

Elders who run away, again and again. They slip out through doors. They climb out of windows. They scale fences. They may wander miles and miles, for hours, sometimes even days. Each moment that they are out on their own they are in danger: of being hit by a car, of being abused, of being robbed, of experiencing a health emergency because they aren’t taking their medications.

Elders whose dementia has changed their brains in such a way that they feel an overwhelming need to engage in repetitive behaviors: They may swing their arms. They may walk constantly. They may cry out endlessly, even though there’s nothing wrong. They may ask the same questions over and over and over, or make the same statements, driving everyone around them a bit crazy.

While sometimes these behaviors start gradually, it’s common for them to begin at the snap of a finger. I believe it’s likely that this results from the physiology of many kinds of dementia. Alzheimer’s seems to be related to the build up of “plaques” that interfere with the signals between neurons in the brain. But there’s also vascular dementia—which can result from many mini strokes in the brain. There’s alcoholic dementia, which results from the damage of drinking too much. There’s dementia that results from other conditions like Parkinson’s disease. Sometimes, one of these maladies will just take out an important bit of the brain tissue, and suddenly you’ve got a behavior problem.

It can happen overnight. I’ve had patients who were charming and kind one day, then nasty and mean the next. A patient might be calm, then suddenly become inconsolably terrified or anxious. A patient may have a fairly solid grasp on reality, then suddenly come to believe that a devoted caregiver is trying to steal everything in the house, or that the hospital has been taken over by Nazis, or aliens, or unseen monsters.

Why do I think this is so important to point out? Because I believe that we all need to recognize that dementia is a dynamic, ever changing, malady. As healthcare professionals, family members and caregivers, we need to constantly be alert to changes in a patient’s behavior. We need to be willing to adjust our approach to dementia patients accordingly. We need to think nimbly, changing both behavioral and medical strategies as needed.

Dementia care is not a “set it and forget it” enterprise. It’s a day-by-day challenge. We all need to remember that.

Elizabeth Landsverk, MD

Board Certified in Geriatrics, Internal and Palliative Care Medicines House calls throughout the San Francisco Bay Area

Can Patients Remember “Sundowning”?

Recently, on an eldercare professionals group on LinkedIn, a post about a man in Indonesia who describes his “sundowning” received a lot of attention. If you have a loved one who is suffering from dementia, chances are you have seen this behavior. Often, as the day draws to a close, an elder with dementia will start to experience severe anxiety, or severe depression that we call “sundowning.” It may happen every day, or it may happen occasionally. These spells can be very upsetting, very disruptive: Patients may become absolutely terrified, or they may become miserably depressed. In the post that my colleagues were discussing on LinkedIn, the elderly man who was describing his symptoms painted a heart-rending picture of what it might feel like to experience sundowning. This description will help any family who’s struggling with this problem to have empathy for their elder. Sundowning is no picnic, not for the elder, and not for the elder’s caregivers or family.

However, I think it is far more likely that someone interviewed this gentleman as he descended into his daily sundowning spell. The man does mention that he takes notes as the sundowning comes on. He writes that the next day he has no memory of taking the notes, or of what happened.

I think this is important to point out. Sundowning is a form of delirium. It’s akin to the night terrors that sometimes beset children. When people are delirious, they have no idea what they are doing. When the delirium passes, they have no memory of how out of control they may have been.

If you’re struggling with an elder who has a problem with sundowning, try to remember that your elder has no control over what he or she is doing. They are not trying to be difficult. They’re suffering a kind of “storm” in their brain. You just have to keep them safe, and wait until it passes.

Some practical measures may help with sundowning:

• Make sure your elder has enough sleep and adequate nutrition.

• Make sure your elder has a predictable routine that that he or she is in a safe place at dusk.

• Make sure that your elder isn’t over-stimulated. All elders need engaging activities during the day, but too much hustle-bustle can contribute to anxiety.

• Make sure to eliminate any medical problems—pain, untreated conditions—that may be causing distress.

Actually, all these measures are a good idea, whether your elder experiences sundowning or not. But if you’ve done all these things, and your elder still struggles with sundowning, remember that many medications exist that can help with the depression and the anxiety. Check out the medications section on the ElderConsult website, then discuss possible treatments with your elder’s doctor.

Does your elder experience sundowning? How have you coped with it? Were practical measures enough, or did your elder need medication to relieve these symptoms? Let us know your experience here on our website www.ElderConsult.com in our Community Chat.

 

A Letter from Dr. Landsverk to Sacramento regarding Assembly Bill No. 2171

To:California Assembly Member Robert A. Wieckowski (District 25, Fremont) P.O. Box 942849, Room 4016 Sacramento, CA 94249-0025

California Assembly Member Mariko Yamada (District 4, Davis) P.O. Box 942849, Room 5160 Sacramento, CA 94249-0004

California State Senator Mark Leno (District 13, San Francisco) State Capitol, Room 5100 Sacramento, CA 95814

Sponsors, California Assembly Bill No. 2171

Dear Hon. Legislators,

I am a Stanford and Harvard-trained geriatric specialist practicing in the San Francisco Bay Area. My practice, ElderConsult in Burlingame, specializes in eldercare education and house calls for elderly patients from San Jose to Napa. Though we treat elderly patients with all manner of conditions, we have become known for treating dementia patients who exhibit difficult behaviors.

I have recently read the bill that you are co-sponsoring, Assembly Bill No. 2171. I applaud you for trying to address the very real problems of elders living in residential care. However, I have some concerns about Assembly Bill No. 2171 as it now written.

My main concern is that, however well-intentioned, this bill is too broad and its terms are too ill-defined. As it is now written, the bill blames residential facilities for the problems that arise in residential care, apparently holding the facility responsible for choosing the correct psychoactive medications, which is not in the scope of a facility ( they report events to the physician who chooses medications) . The bill gives facilities very little leeway in resolving problems, other than taking steps to please the elder and/or the elder’s family. Facilities may not even have the ability to evict patients if necessary for safety. The penalties for violating the standards set by the bill are high: as much as $1,000 a day that can be retroactive to time of event.

The problems that you are trying to address with this bill are real, of course. But I am very concerned that this bill will actually make things worse for the most vulnerable patients, those with dementia who become aggressive, angry or delusional.

Dementia is not simply a gradual fading of memory. There are many kinds of dementia; it’s not just Alzheimer’s. Even in Alzheimer’s patients, behavioral symptoms can sometimes worsen suddenly. Even if the patient is exceptionally well-cared for, dementia can result in many kinds of disruptive behavior: aggressiveness, persistent yelling unrelated to discomfort, the need to walk incessantly, hyper-sexuality, paranoia, overwhelming anxiety.

There is a myth in our society that problem behaviors in dementia patients always result from unmet needs. The thinking goes like this: The elder with dementia is frustrated because of some problem that he or she cannot explain and acts out until the problem is solved. Sometimes, this is the case. I always treat pain first. I always try to get rid of medications that cause more behavioral problems. In fact I would say that if the Xanax, Ativan, and Ambien type meds were not used in this population, there would be much less agitation; which often require the use of antipsychotics to allow taper of these problematic medications. I always work to figure out what makes life worth living for our patients. We always try to support our patients’ wishes. We work to find out what activities our patients enjoy and help them to do those things.

But sometimes—more often than most geriatricians will admit—we can try everything and still the problem behavior persists. We can meet every need. We can address every physical ill. We can try to engage the patient. Yet still, they act out.

Already, I get desperate calls from families as far away as Gilroy or the San Joaquin Valley. These families cannot find any facility nearby to admit their loved one because the elder’s behavior is too disruptive. These are families who care for their elders in the spirit that I have described above. These are families who have been pushed to the brink, emotionally and financially (as I understand Medicare will soon not cover antipsychotic medication cost). These are patients who need care. And yet, facilities already are reluctant to admit such individuals. I am concerned that if this bill is passed, it will become even more difficult for vulnerable elders with behavior issues to find a spot in residential care. Specifically, an elder who has been aggressive, the bill states that behavioral measures must be used first. There are elders who must have medications to all any and all care from the start.

There is another myth in dementia care: Anti-psychotic medications should never be used in dementia patients, and prescribing them to patients is an “inappropriate use” or “chemical restraint”; used only to sedate and control the elder.

Actually, there are some behaviors such as psychosis, delusions and repetitive behaviors that sometimes respond ONLY to anti-psychotic medications. I do not advocate using these medications as a first-line treatment. Of course, pain, underlying medical problems should be ruled out before these powerful drugs are used.

But again and again, I am confronted with patients for whom all other interventions have been tried, and still, the behavior persists. Often, the behavior is so disruptive and disturbing that it is nearly impossible to care for the patient.

Assembly Bill No. 2171 rightly says that patients should be informed of the risks of various medical interventions. Anti-psychotic medications do increase stroke risk by 2 percent, and sudden death risk by 1%. Anti-psychotic medications may hasten decline. But if a patient is so freaked out, so aggressive or so hypersexual that it makes caring for them impossible, then that small increased risk may be worth it. I always inform the families of patients that prescribing anti-psychotics is palliative care and of the risks. We are shifting concern for a cure, to concern for quality of life. After the problem behavior is treated, I always try to decrease the medication to the lowest effective dose as soon as possible.

These kinds of decisions are often complex and nuanced. Sometimes only one drug of a certain class will work for a patient. Often, it requires a bit of trial and error to resolve a case. After we have a behavior in hand, it is a constant process of evaluation and adjustment to keep an elder calm, yet as alert as he or she can be. I am concerned that Bill No. 2171 does not address this complexity, but simply forbids “chemical restraint.”

Actually, there are other drugs that are commonly used in the elderly and the demented which cause far more problems than do anti-psychotics. Anti-depressants—especially Prozac, Cymbalta and Effexor—can make psychosis worse. Anti-anxiety medicines and sleeping pills—especially Klonopin, Ativan and Ambien—are used commonly in the elderly even though they cause more confusion and very often make problem behaviors worse. Again, Bill No. 2171 does not address this complexity.

Finally, I am concerned that this bill will force residential facilities caring for the elderly to resort to a defensive “checklist” approach to care, rather than addressing each patient as the individual that they are.

Take, for example, the bill’s attempt to make sure that elders are safe and do not fall in a residential facility. This is a complex problem, and different for each elder. Often, elders with dementia have poor safety awareness. After a hospitalization, an elder’s need for supervision may temporarily increase. Yet even with 1:1 supervision, falls happen. I have a patient who benefits from private, 24-7 care for in her by dedicated caregivers and yet still she had a fall that resulted in a broken leg. If facilities are held to be at fault every time an elder falls, then costs will skyrocket. Elders will not have access to the care that they need.

Here are some things that I would advocate:

• I would advocate that facilities do offer informed consent, but allow for leeway in urgent situations to avoid otherwise medically unneeded trips to the ER. If an elder is acting out and can be quickly treated in residential care, that’s often preferable, with consent or not. Otherwise, medically unnecessary trips to the ER result, which the hospitals will not tolerate. In addition, I have seen that more trips to the ER results in being referred to hospice earlier than would otherwise be the case.

• I would advocate that elders have a role in care planning, but that it also be recognized that not all elders are cognitively intact and rational. Simply pleasing the elder, or the elder’s family may not always result in better care. This needs to be recognized.

• I would advocate that residential facilities be given incentives to engage elders. Even patients with advanced dementia can find enjoyment. A man who was once an engineer might enjoy playing with toy gears. Another who once loved plants may enjoy sitting in the garden. Facilities should be encouraged to find out what each patient enjoys. Then, facilities should be encouraged to engage patients in activities that they actually enjoy.

• I would advocate legislative measures that encourage facilities to collaborate with medical personnel. The care of the elderly, and especially the care of the elderly with dementia, is complex. We should create a system that encourages caregivers, home administrators, doctors, and nurses to work together.

Thank you in advance for your time and consideration. I would be happy to discuss with you further, 650-357-8834.

Many thanks,

Elizabeth Landsverk MD