CHAPTER FOUR
WHEN CONFRONTED WITH AN INJURY or an illness in a loved one, it’s human nature to respond, “Do everything! Whatever it takes!” Pulling out all the stops may make sense for a patient who’s forty or sixty, even seventy. For someone who’s eight-five or ninety-five, it may not.
The decision to take a less aggressive approach isn’t necessarily based on age; rather, it’s because the patient is frail. We do not advocate “slow medicine,” but focused care for the goals of the elder. Those with dementia often feel under attack and become combative in hospital settings. To prevent elders from fighting the treatments or pulling out intravenous (IV) lines and monitors, they’re often heavily sedated and restrained. This can lead to pressure ulcers, choking on food or phlegm, blood clots, delirium, and an earlier death. Aggressive treatment often means a worse outcome. This makes it important to figure out what doctors call the “goals of care.” Simply put, this means defining why the patient is getting medical treatment in the first place: Is the goal a complete cure? Is it to make the patient as comfortable as possible? Is it to make it possible for the patient to stay at home? Is it to preserve function as long as possible? Ask yourself: What would your loved one want? Would he or she want to undergo the stresses of being in the hospital? To even be there? To be treated at all costs?
Consider a ninety-two-year-old woman with dementia who has become terrified of hospitals. She develops the flu—a condition that may demand hospitalization. If she is sent to a hospital instead of being treated at home, she won’t understand what’s happening to her.
A hospital is a very confusing and scary place for someone with dementia. Imagine being in that world of IV tubes, beeping heart and respiration monitors, blood draws, and uncomfortable procedures. Now imagine that you have no idea what’s going on, why you’re being put through all this. Frightened, the patient may become aggressive, fighting the hospital staff members—who will respond by tying the patient to the bed and sedating him or her.
Staying immobile in this way will put patients at higher risk for bedsores, aspiration of food or water into the lungs, and blood clots. For every day that they spend in bed, they will lose 5 percent of muscle mass. Over five days that is a 25 percent muscle loss. Even if a patient sits up straight to eat (which isn’t always the case) or lies flat after feeding, her increased confusion makes her more likely to suck in, or “aspirate,” food into her airway. Aspiration can lead to pneumonia, and pneumonia is a major cause of death for elders. So, in such cases, the most aggressive treatment may actually hasten a patient’s death.
An alternative is to have an evaluation done in the elder’s home, a doctor or nurse practitioner house call, starting with antibiotics, if indicated for bacterial infection, and following up with a visiting nurse to make sure the elder is better. Care in familiar surroundings with familiar caregivers is much more comforting to those with dementia and fear of new environments.
One of the most disturbing things about dementia is the feeling that we are losing control. We all have goals and hopes. We all like to feel that we have some power to decide things for ourselves. Over the course of a lifetime, we all develop a unique understanding of what’s most important, what’s most meaningful to our quality of life. This helps us to organize our lives.
As people grow older and less able to understand and cope, these goals and hopes inevitably shift. While a retired athlete may have wanted to remain healthy enough to play tennis, he later may become content with a daily walk. A woman who adamantly insisted on staying in her home may become so lonely and so infirm that moving to an assisted-living facility becomes a godsend, not a defeat.
It’s important for families and patients to periodically review their goals and hopes with the medical and caregiving team. Remember that medical schools tend to emphasize curing disease. Most training programs provide only one month on geriatric medicine, and they devote even less time to the care of dementia. Few doctors spend more than a few days on special courses in end-of-life care. Psychologically, it’s hard for most doctors to admit that they can’t fix something. After all, most of them got into medicine because they wanted to triumph over problems, not learn to live with them.
Because of this reality in the medical culture, families need to be proactive. They need to ask the questions rather than wait for the medical team to do so. This process will be easier for everyone if patients, families, caregivers, and medical professionals can agree on the goals of care.
As you think about these goals, ask yourself: What would my loved one really want? What can he or she expect to get out of treatment?
Often, the patient and the family might want different things. Many, many times I have had to face a son or daughter who wants to put the parent in a nursing home or wants a medical procedure that the parent doesn’t want. I believe we should honor our elders’ wishes rather than doing what makes us feel most comfortable. As much as possible, our feelings of fear and loss shouldn’t get in the way of the patient’s wishes. The eighty-five-year-old woman who lives alone and is falling frequently and can’t remember she is falling and refuses help at home needs to have someone with a durable power of attorney or her chosen “decider” help determine what arrangements will let her be as independent as possible while living as safely as possible.
Every few months, or as changes occur, ask your family and your medical team:
• What are the priorities?
• What makes life worth living for my loved one? How can we best support that?
• How should the plan for care be structured to help achieve these goals?
Having a plan not only avoids many problems, it also actually enhances the quality of life. It helps everyone to cope, to respond, and to prepare for the future. The key is to agree on guidelines that honor the values of the person being cared for and then to make sure that everyone follows through.
The Hospital Is Not Always Best
Perry, an eighty-one-year-old man with moderate dementia, has become very agitated. He’s taken to the hospital and is found to have a urinary blockage requiring a catheter.
When I first see him, he’s been in the hospital for nearly four weeks and he’s a mess: He has become delirious. The doctors give him general anesthesia and do a lumbar puncture to see if his spinal fluid might reveal the causes of his confusion. He needs a new catheter to drain his urine. The tube is held inside his bladder by a small balloon to prevent the catheter from slipping back down the narrow urethra. Upon waking, Perry becomes so agitated that he pulls out the catheter—balloon and all. That causes so much bleeding that he needs a transfusion.
Mittens are needed to restrain his hands so that he won’t yank out any more tubes. His legs are restrained as well because he kicks. None of the hospital staff members want to do more procedures on him. Perry has developed a cough. His confusion and restraints in bed put him at high risk for aspirating food and developing pneumonia. He needs an operation to help his bladder drain, but the team have not planned to do the procedure.
So what should we do with this man? Should we keep him in the hospital, where he’s clearly miserable and at risk? Or should we find a different solution?
I advise the family to move Perry from the hospital to a facility specializing in dementia so that his condition can be stabilized. The family hires a caregiver to stay with him at all times. The facility’s philosophy of care discourages restraints, so they remove the mittens (without asking his doctor). Perry pulls out his catheter again. He bleeds heavily and is taken to another hospital. Luckily, a local urologist helps out and surgically removes the blockage (using a procedure called laser TURP). After five days of mittens and restraints to allow him to heal, the catheter is removed. Perry, who had been immobilized for weeks in the hospital, is up and dressed in street clothes and walking with the aid of a walker. His delirium clears, and he becomes more coherent than he’s been for more than a month. He grows content with the dementia facility.
Would we have reached this happy ending if Perry had stayed in the hospital? It’s unclear. He had become very weak there, and complex surgical procedures in dementia patients often have poor outcomes. However, the alternative was to leave him sedated and tied in a bed—a miserable way to decline and die.
Some kinds of intervention should only be used to treat serious conditions, such as removing an infected gall bladder or pinning a broken hip. One of my patients, an eighty-seven-year-old man, had vascular dementia caused by impaired blood flow to the brain. After years of being aggressive, he had mellowed. He walked a little and enjoyed watching others at his residence. He was eating less and was on hospice care in preparation for death.
His wife grew concerned about a dime-sized skin growth on his cheek that wouldn’t heal. A dermatologist said it should be removed in an operating room, with general anesthesia. I learned about the procedure after the fact, when I was notified that he was acting more confused and yelling at night. When I arrived, I could see that he had suffered a stroke. He died two weeks after the surgery. I would strongly advise that only procedures to address distressing medical situations, such as a hernia or a hip fracture, be treated. Follow-up mammograms, carotid ultrasounds, and small incidental findings should be avoided.
When it comes to some medical issues, we must think for our loved ones. Is the problem something that really affects quality of life? Is fixing it worth the risk?
When Less Is More
An older woman named Maribel has moderate dementia. All her life, she’s avoided doctors and been skeptical of conventional medicine. One day, she feels a lump in her breast.
Both her family and her doctors need to consider: What’s the most compassionate and sensible thing to do? Aggressive treatment of her cancer would most likely involve long and arduous IV chemotherapy and radiation—treatments she would never have trusted when she was competent and can’t possibly understand now through the fog of dementia. If the chance of a cure is remote, would it make more sense to give Maribel a pill to shrink her tumor and leave her without serious side effects for her remaining time?
In her case, palliative care—that is, treating symptoms but not expecting a cure—was the kindest course of action. Her tumor responded, for a while, to an oral chemotherapy medication that did not have noticeable side effects. For Maribel, it meant more quality to her days without difficult invasive treatment.
In the context of modern medicine, setting goals and planning treatment for elders—those with dementia—becomes tremendously complicated and nuanced. Technology has grown so advanced that it’s possible to keep people alive long after they’ve lost the capacity to enjoy even the most basic of life’s pleasures. This doesn’t contradict my argument that people with dementia can enjoy life. But for all of us, at some point, it’s time to let go. No one wants an indefinite period of being hooked up to machines, immobilized, in bed, and unable to speak.
It’s common for elders to develop complex constellations of ailments along with dementia. It may be possible to treat every disease, but it may not always be advisable. Sometimes the side effects of treatment can outweigh the benefits. Or perhaps a treatment, while effective for a short time, may be traumatic. A painful or uncomfortable scan, for instance, may yield more information about a patient, but what if the condition it reveals is untreatable? It’s not always necessary to measure everything.
Goals of care should include consideration of risk. Sometimes a patient may desperately want to engage in an activity that’s a little dangerous. Should we let patients take chances? It depends. Let’s say an elder has a conservator who handles his business affairs. The man wants to invite friends to a party at the ballpark. He’s always loved going to games there. The conservator says no, it’s risky. But is it? How about box seats or a luxury suite, going early (of course, scoping out the bathroom situation), making it a party, and leaving after most fans have driven away? If the man has supervision and enough money and if this is what he wants, why not? Even if a patient has dementia, he often still knows what he likes.
Or let’s say a woman with moderate dementia wants to have unproven, expensive, and experimental medical procedures. Might the doctor selling these treatments have undue influence over this patient? Does the woman have the capacity to weigh the risks and benefits? Can she make a rational decision? Past performance may offer a clue. Can she understand the risks and benefits of medical treatments such as treating diabetes or hypertension with the proper medications? If she can’t understand why it’s important to treat those common conditions, I would argue that she doesn’t have capacity to choose risky, unproven treatments. Neuropsychological testing can offer a definitive verdict. It’s likely she doesn’t have the mental capacity to make this kind of decision—a complex problem with many pros and cons.
That said, families also need to beware of those hawking “miracle cures” for dementia, such as chelation therapy using heavy metals or dozens of supplements a day at a cost of thousands of dollars. There are no studies showing that these treatments have a beneficial effect. Slick sales pitches and long promotional videos do not replace evidence. Sadly, there are no cures for dementia. Think of it like emphysema or scarring of the lung. Dementia is scarring of the brain. If supplying needed Vitamin B12 or thyroid medication or correcting medication problems that can cause delirium does not improve thinking, it will not improve.
In addition, medical professionals must always be aware that medications affect elders more powerfully than younger adults. I’ve worked with many elders who were deemed to have “advanced dementia”—not eating well, not coherent, not functioning—who greatly improved in their ability to think, function, and enjoy life when their medications were corrected. Generally, elders shouldn’t be on sleeping pills or anti-anxiety pills, which commonly cause more problems than they solve (see medications section).
There is also the concern that an elder with dementia won’t get standard medical care for acute conditions simply because they have dementia or are just plain old. That is how a ninety-two-year-old woman with a damaged hip, who still works at the family business, was steered away from getting surgery by a doctor’s recommendation not to attempt the repair because of her age. She did, ultimately, have her hip pinned and returned to working in the family business.
Another case involved an older man with acute pancreatitis who wasn’t offered the standard evaluation of a magnetic resonance imaging (MRI) scan of the bile duct due to his mild dementia. Fortunately, he was taken to another hospital, where the MRI revealed that he probably had biliary duct cancer, which aided the family in making plans for care.
Or take, for instance, the ninety-four-year-old man whose lung x-ray showed a gray shadow—a sign of possible fluid buildup or infection—that didn’t clear up after treatment with antibiotics. “Well,” his doctor said, “we would not do anything anyway.” However, the man became short of breath and needed emergency hospitalization for heart failure, which resolved quickly once he had the proper medication.
Elders need us to be their advocates. No one should be sent home without care or treatment for pain because they’re demented and their symptoms aren’t judged to have merit.
What Would You Do?
For a sense of the complexity involved in establishing goals of care, consider some of the questions that have presented themselves in my practice.
• A ninety-two-year-old man has dementia and emphysema that remains uncontrolled despite intensive treatment. He needs a carotid endarterectomy, a highly invasive operation to treat the narrowing of the main arteries supplying the brain and reduce the risk of a stroke. Does this make sense, given his age and already fragile health?
• A bedridden eighty-six-year-old man with alcoholic dementia also suffers from diabetes, liver disease, kidney failure, and many other ailments. He has a port, a device that provides a point of entry for medication, surgically implanted to be used for dialysis. But no one asks if he can realistically take on the challenge of traveling to a dialysis center every other day. He never goes to the dialysis center.
• Should a woman with a history of falls who feels compelled to constantly walk around her assisted-living facility be permitted to do so, even if it increases her risk of falls? Or might she be less stressed and more free to walk in a “board-and-care” home with a higher ratio of staff members to patients?
• A ninety-two-year-old man with advanced dementia is taken to the hospital with a prolonged seizure. A scan shows some shrinkage in his brain. This atrophy and the associated enlarged ventricles are more commonly associated with dementia in someone of his age and condition, but they also could be caused by normal pressure hydrocephalus (or too much fluid in the brain, causing dementia, incontinence, and poor gait). In someone two decades younger, standard procedure would call for a full neurological exam—brainwave EEG (electro-encephalogram), lumbar puncture, and a follow-up MRI requiring complete sedation. Or in this case, would simply providing an antiseizure medication to control the symptoms make more sense?
• An elder woman’s dementia makes her incapable of understanding even simple health issues like why she needs to take her blood pressure medication. She develops anemia, which may be a sign of blood loss or colon cancer. She refuses to allow a blood sample. Should the anemia be investigated with a colonoscopy, the standard for a younger patient with full mental faculties? A colonoscopy will require uncomfortable bowel cleansing—drinking a little over four quarts of a powerful laxative, followed by constant diarrhea. Should she go through this? There’s only a one-in-a-thousand chance that her bowel may be perforated. If there’s a problem found, it will require surgery. Her family has made it clear that they don’t want that. Given her level of dementia and the one to two years of life probably remaining, would it make more sense to just give her iron tablets to reduce the discomfort of her fatigue from the anemia?
Dr. Louise Walters has done studies showing that screening for cancer makes sense only if the older individual has a prognosis of living an additional ten years or more. So a sixty-eight-year-old man with somewhat advanced dementia is unlikely to benefit from screening for prostate cancer. A seventy-two-year-old woman in good health may be a good candidate for breast-cancer screening, but one with dementia at that age may not.
Remember that dementia is a terminal illness. It is not survivable. If your brain—command central—doesn’t work correctly, the body may send signals of pneumonia or a heart attack or even constipation, but the brain can’t interpret those signals or communicate the problem in order to get help. With modern medicine, few adults die from pneumonia. In those with moderately advanced dementia, the risk of dying from pneumonia is 25 percent with treatment.
If those with dementia have other serious conditions, such as emphysema or congestive heart failure, these conditions may get better with hospitalization. Yet every time such elders enter the hospital, they’re at a heightened risk of dying—from infections that live in the hospital, from medications, from the restraints used to keep confused patients in bed that can lead to bedsores, from falls, from sedation, from blood clots, and from aspiration of fluid into the lungs. With issues such as these, it can make more sense to localize the elder’s problem, to fix the condition that causes discomfort or distress, and to keep the elder at home as much as possible.
Each family and each health-care team will answer these questions in different ways, depending on the situation, the medical prognosis, and the wishes of the elder and the family. The point is that it’s important to discuss goals before there’s a crisis.
Questions to Ask
When considering how to care for a person with dementia, be sure to consider the bigger picture. Hopefully, some of these issues will have been discussed before your loved one becomes severely impaired. In the best case, you’ll have outlined these plans in documents such as an advanced directive, a living will, or a medical power of attorney. (See chapter 12 for more on these legal issues.)
Yet many, if not most, families don’t have the luxury of time to plan ahead. It’s important for all concerned parties to sit and discuss your loved one’s care. The point is to ask what your loved one would want, not what you would want. Here are some questions to talk over.
• How has your loved one lived life? What are his or her general values and beliefs? Did your loved one prepare any advance health-care directives? If not, what statements did your loved make about growing older?
• Before your loved one got sick, what was most important in his or her life? What do you think is most important now? What activities are most enjoyable now?
• Given what you know about your family’s wishes and your loved one’s wishes and condition, what are your central goals? Prolonging life? Preserving quality of life? Avoiding suffering? Maintaining function? Maintaining as much independence as possible?
• How has your loved one coped with medical procedures, such as drawing blood? What’s his or her attitude toward more invasive life-extending measures, such as intubation? Resuscitation? The likelihood of returning to a prior functional state after cardiac resuscitation for elders over age seventy with chronic medical problems is less than 1 percent. If an elder does survive resuscitation, he or she will likely have much worse brain damage.
• What are your expectations? Although no one can say for sure, how do you expect your loved one’s dementia to progress? What are your fears for your loved one? What do you hope to avoid? What are you afraid might happen? What are your fears for yourself?
• If your loved one can’t speak for himself or herself, whose guidance would he or she trust? What would he or she want done?
• Do you know everything you need to know to clearly understand your loved one’s situation? Are there things about your loved one’s condition that you don’t understand or that need to be clarified?
• How are decisions to be made and information to be handled? This can be thorny because of federal privacy law. It’s important to identify all the important players in the family and how they will share information, who has the authority to make decisions (durable power of attorney), which family members have strong views, and how differences will be resolved. This is especially the case with blended families (e.g., a new spouse, children from a previous marriage). Early meetings with mediators to clarify medical and financial plans are crucial.
• If your loved one has several goals, how would you rank them in order of importance? Which goals are for the benefit of your loved one? Which goals are for the benefit of other family members?
• Does your health-care team feel that your family’s goals are medically realistic? Does your family clearly understand the prognosis for the diseases that affect your loved one?
• If a cure isn’t an achievable goal, can the disease be stabilized?
• If it’s not possible to cure all the patient’s diseases, which conditions can most effectively be treated?
• What is the balance between the risks of the treatment and the effectiveness of the care?
When All Is Not Clear
Herbert has fairly severe dementia. He can’t remember much of what happened yesterday. “You never come see me!” he tells his daughter, even when his daughter has visited the day before.
Herbert has painful nerve damage that needs strong medications such as methadone and Lyrica (pregabalin). He is bedridden and can’t move, and he suffers from bedsores.
Three times in a year, complications have required the insertion of a flexible plastic tube into his windpipe, a procedure known as intubation, to help him breathe. This is an invasive, uncomfortable procedure that people with dementia may not understand. Such elders often fight to remove the tube.
In Herbert’s case, each time, the doctors stopped his pain medications because narcotics can depress breathing. However, abrupt withdrawal (decreasing more than one-half of the current dose every few days) leads to excruciating pain that increases a person’s blood pressure and heart rate. Herbert can’t speak because of the tube, so he can’t communicate his misery to the doctors.
After the last intubation, one daughter suggests that Herbert be admitted to a hospice for end-of-life care. Other family members are unsure. Some worry about making such a decision. However, since Herbert doesn’t remember the previous day, he doesn’t remember the pain of intubation or the pain that ensues when his medications are discontinued.
The family continues to talk to Herbert. Gradually, everyone agrees that he doesn’t know the consequences of his earlier choice to take extraordinary measures to sustain his life—what he called “everything done.” Not putting Herbert into hospice care, they decide, would increase the risk he would die with tubes everywhere and in serious pain. They all know that Herbert wouldn’t want that.
Herbert goes to a hospice, where he is much happier. He gets more attention. His pain is better controlled. His bedsores get better with more attention and repositioning, which are now possible because the pain has decreased.
• When should the focus shift from trying to cure someone to using interventions aimed at relieving suffering? How does your family feel about this? What does the doctor say?
• Does your doctor take pain management seriously? Some medical professionals believe that if a patient doesn’t complain about pain, there is no pain. Unfortunately, patients with dementia may not be able to identify the source of their distress. When those with dementia hurt, they may act out or they may become withdrawn. It is a mistake to treat agitation from pain (such as distressing arthritis or muscular/skeletal pain) with a sedative like lorazepam (Ativan), rather than with pain-control measures such as long-acting Tylenol (acetaminophen); physical therapy; a TENs unit (electrical stimulation); topical application of diclofenac sodium (Voltaren), gabapentin (Neurontin), or pregabalin (Lyrica) and, in more severe cases, Norco, a combination of acetaminophen and hydrocodone (often only one-half tab two or three times a day); or low-dose methadone for severe neuropathic pain not responsive to other treatments. As has been widely documented, long term use of medications like ibuprofen (Motrin) or naproxen (Naprosyn, Aleve) should be avoided since they are associated with increased risk of heart attack, stroke, gastrointestinal (GI) bleeding, or kidney failure. Of course, there is the caveat of treating narcotic-associated constipation: observe and adjust the dose for sedation or increased risk of falling. The concern about escalating narcotic doses for elders with dementia is minimal if the elder is not managing his or her own medication and the caregiver is educated and reliable. Most people with dementia do not know what medications they are on and are not drug seeking. Treating pain effectively should be the first step in person-centered care. There is a school of thought that all chronic pain is mostly emotional. However, for elders with bone-on-bone arthritis, spinal stenosis or even a hip fracture, it is the quality of life that counts. Remember that those with dementia who undergo surgery have an increased risk of complications and further brain damage. Hundreds of elders who had reported severe pain in the past, do much better with less psych medication when their pains are treated with the needed pain medicine.
• Does your doctor see the bigger picture? A person with moderate to advanced dementia may have two to six years to live or might die at any time. Will your doctor take that into account when suggesting a treatment plan? For a woman of seventy-five with advanced dementia, there’s little point in screening for cancer since she has a prognosis from her dementia of less than ten years of life.
• What if the patient doesn’t understand what the surgery is for or why he or she is in the hospital? What if the disease may not cause a major problem? The misery of an inflamed gall bladder or enlarged prostate demands immediate intervention. But that’s different from removing a skin cancer to prevent future medical complications.
• Is it more sensible to focus on day-to-day measures, such as flu vaccines and regular dental check-ups, that have a direct effect on the patient’s quality of life?
• What living situation for your loved one will best balance financial constraints, medical and emotional needs, and the wishes of the patient?
• How can the elder’s distress be minimized?
• How can the patient get the most out of every day?
As you ask these questions, remember that the answers shouldn’t be what you would wish for yourself and your family. The goal is to find answers that conform to what your loved one would want, given his or her past actions and current situation.
Also, remember to take into account that what your loved one enjoys at the current stage may be different from what he or she preferred in the past. A love of opera, for instance, may now be satisfied with sing-alongs. A gregarious person may be happy with family visits three times a week and balloon volleyball on the other days. Of course, each person should be given the choices to participate in the activities of that person’s preference. Remember, an elder will not likely have the stamina for prolonged events as in years past.
Sometimes the Hospital Hurts More than Helps
Roger has moderately advanced dementia. He also suffers from moderately severe anxiety. Sometimes he grows so anxious that he becomes aggressive and delusional. He takes lorazepam (Ativan), a strong tranquilizer, to manage his distress.
His wife takes him to a local memory clinic affiliated with a prominent academic medical center. The clinic refers Roger to the hospital for tests that might explain his dementia: an MRI scan, a lumbar puncture, and a carotid ultrasound. The hospital stops his drugs abruptly to avoid interfering with the tests.
Confused and agitated without his usual medicines, Roger inhales food into his lungs and contracts pneumonia. The doctors insert a catheter to drain his bladder. Roger goes home after a week.
At home, though, Roger becomes feverish. A urine test shows that he’s gotten a drug-resistant infection from the catheter inserted at the hospital. He had entered the hospital in reasonably good physical health, but now, he is a very sick man. All this might have been avoided if he’d only had the tests that would affect his current care (for a person with advanced dementia, results from a lumbar puncture and carotid ultrasounds for dementia evaluation are not likely to change treatment) and not been admitted to the hospital but had a head CAT scan (computerized axial tomography) as an outpatient.
Finding the Solution that Works Best for Your Loved One
There is not a one-size-fits-all approach to any of these questions. You need to decide what works best for your loved one and his or her unique situation.
Kris, an eighty-two-year-old woman with dementia, feels a compulsion to walk. She sometimes walks so much that she doesn’t eat, even though she is living in a facility that specializes in people with her condition and might be expected to keep a closer eye on her. Medications calm her somewhat, but she still feels an overpowering need to walk.
Kris becomes weaker and starts having falls. The family faces a difficult choice: Do they keep her confined and safe, or do they allow her to keep walking, which she enjoys and finds comforting?
I’ve seen this kind of falling-lady drama played out in several ways.
In one case, the doctor straps the patient to a chair. The restraints make her even more agitated, so he sedates her. She declines quickly.
In another case, the woman’s family knows that her mobility is very important to her. Some families can afford twenty-four-hour, one-on-one care, but many cannot. After prolonged discussions with her dementia care facility, the family members sign a waiver stating that they understand that her walking puts her at risk of falls, but that they want her free to continue. They also say they don’t want strong sedating medications used. The team works hard to assist her in walking the halls, keeps her in the community room where she can be supervised, and leaves her alone when she is in a low bed that she cannot get up and walk from without assistance. Despite the team efforts, she falls occasionally until she gradually becomes too weak to walk and spends her time in a wheelchair cruising around the community.
In yet another case, a woman needs to walk but can’t be supervised in the large nursing facility where she lives. Her family decides to move her to a board-and-care home run by a nurse. In this smaller context, the woman can be more closely supervised. She can walk without being restrained, but with closer supervision.
Each family has to decide what is right for them, always guided by what they think their loved one would want.