CHAPTER NINE
ADJUSTING TO A DEMENTIA DIAGNOSIS can be frightening, frustrating, and difficult for both the family and the older individual. It’s important to remember that there’s lots of help available and that having clear goals, adjusting routines, and using a few simple strategies can make the journey much smoother. This chapter will outline some steps that will make life with dementia easier. Some of these tips, I have developed over years of experience, but many come from facility managers, medical specialists, and other professionals.
First, Heal Thyself
For family members, dealing with their own feelings may be one of the most difficult tasks. They must cope with their own pain, anger, frustration, and fear. Families often feel overwhelmed with questions: Why did this have to happen? Why do I have to deal with this huge hassle? How can I overcome my own grief now that my parent, spouse, or sibling seems to be slipping away? If my relative suffers from dementia, will it happen to me?
These feelings are completely natural. I see them again and again, in family after family. Until you recognize these feelings and begin to process them, you won’t be able to effectively help your loved one. Seek out a support group or other family members. Look for books to help you work through these feelings. See the “Resources and Further Information” section at the back of this book for suggestions.
Stephanie Howard has worked with dementia patients and their families for almost twenty years. She has worked for several residential care companies, managing memory communities around San Francisco and running family support groups. Howard is passionate about patient-centered care.
Here’s her perspective on the emotional toll that dementia takes on families.
“Where do you start? First, you get a box of Kleenex. There’s a lot of anger and pain just after a dementia diagnosis. I always think it’s better to get all that out in the open, to just cry together. After you get past that, you are more able to gain ground.
“You have to ask yourself: Are we talking about how the dementia is affecting the family? Or are we talking about how the dementia is affecting the patient?
“Families are worrying about lots of things: Many times, it’s a monetary problem. How long is the money going to last? How long is their elder going to live? Often, these aren’t answerable questions.
“Meanwhile, the person with dementia is struggling with different questions, depending on how far the dementia has advanced. In the early days, they may worry about the loss of the future they thought they had. Later on, they may simply express anxiety when things change. The point is, the elder’s problems are often very different from the family’s.”
The Elder’s Point of View
One of the things that can be so frustrating about interacting with a person who has dementia is that it seems so uncertain, so uneven. It’s like walking on shifting sands. Elders may still remember how to make a meal but struggle to sign a check. They may forget directions from five minutes ago, but remember a childhood Christmas. Or elders may seem physically hale and hearty, still exercising and moving well, but become unable to manage some of the higher thinking skills necessary for organizing finances or a household. Loved ones may become angry, anxious, paranoid, suddenly promiscuous, or unusually shy. They can be annoying. They may follow family members around like a lost puppy. They may ask the same questions over and over again. They may be overconfident and stubborn one minute, hysterically afraid the next.
If it’s difficult to manage this terrain as a family member, imagine what it’s like for the person with dementia. In its early stages, dementia can be terrifying. Try to remember back to a time when you lost something important, like your wallet. Remember that dread and terror, that pit in your stomach as you imagined someone merrily charging up the balances on your credit cards? Now imagine that you have that disorienting, catastrophic experience one hundred times an hour. That approximates what life is like for many with dementia as their disease first becomes noticeable.
For people living through the onset of dementia, things that once were easy have suddenly become difficult. They often feel lost. As the world becomes ever more confusing, they worry about losing control, about being “found out.” Because they don’t want people to see their diminished capacities, they often stop seeing friends. They make excuses. They avoid activities they once enjoyed. Some know that their abilities are slipping and feel useless, ashamed. Some, especially those with vascular dementia, have brain damage that blocks their self-awareness. They think that they’re fine and that the worried family members are crazy and trying to take control of them. They may become withdrawn and depressed. In other cases, the apathy and loss of empathy aren’t symptoms of depression but of the dementia itself.
They may become suspicious. They forget where they put their watch and conclude that someone stole it. They start hiding their jewelry, forget the hiding place, and become sure that someone is stealing from them. Their children are stealing their money. (This may be true, but often is not.) They’re sure their spouse is unfaithful, or suddenly they may not even recognize their partner. (“Who is that old guy?” a wife might ask, remembering only the young man she married decades ago.) Why are family members keeping them from doing what they want to do?
This is the point at which patients often can’t manage their finances, and things begin to veer out of control. Often, the family notices and tries to get the patient to give up control or to at least accept some help. Alas, this usually confirms the patient’s worst suspicions.
A Person with Dementia Is Still a Person
As crazy-making as the onset of dementia can be for everyone, it’s key to remember that people with dementia have feelings. They have needs and wants, just like anybody else. They enjoy good food. They want to make choices about what they wear, eat, and do. Yet those with dementia may not be able to voice their desires. For this reason, it’s extremely important to provide doctors and caregivers a full history of the loved one so that they can understand the preferences and routines the elder had before being diagnosed.
It’s also important to remember that people living with dementia aren’t children. They’re full-grown people who need to be accorded the respect due adults. While their abilities may be failing, they’re still grown-ups.
Too often, people make the mistake of treating someone with dementia like a child. This may be because people with dementia have much in common with children who haven’t yet developed abstract reasoning and judgment. The elder’s abilities are changing and uncertain. A lot of things seem strange, unexplained. The world seems alternately exciting and threatening. For this reason, it may be helpful to employ some of the same techniques that work when parenting children.
• Remember to smile and to be reassuring.
• Do not yell at or belittle the elder.
• Give one-step instructions.
• Give the elder time to process each request, each step in a process.
• Give simple choices. Not “What do you want to wear?”, but “Would you like the red shirt or the blue shirt?”
“The elders are our educators,” Howard says. “They tell us what they want and how they want to be cared for. We have to have open ears so that we can understand them.
“Task-oriented care never works with dementia,” Howard says. “It always has to go back to the person. Do you find yourself touching the person with dementia? Maybe that person doesn’t want to be touched at that point. You need to ask questions, get their opinion, let them make choices if they can. It’s important to remember not to do what you think you should do for them, but do what the elder would want to have done.”
Howard works to engage residents at whatever level works for them now. Here are some of the tricks of the trade that she’s developed.
Steps to Structure
As scary and disconcerting as dementia is to elders, a simple, well-defined structure for daily life can help ease their fears. Knowing what’s going to happen each day builds a feeling of security. In the beginning, providing reminders of the day and date can help lend structure. Later, when they no longer care, let it go.
Be open with elders about what’s happening to them. As anybody knows, the monster in the closet is always far worse than the one you can see. Let them know that there are things they can do to slow the progress of their condition. Answer their questions.
If they refuse to acknowledge that there is any problem, don’t insist on making them recognize what’s happening. Work around it. Build the structure they need. Help them keep as much of a sense of independence as is safely possible.
Allow more time for everything. You may be on a schedule, but the person with dementia isn’t. If you’re stressed about time, your loved one will pick up on it and may become angry, even belligerent. Take it down a notch. Let things get done in their own time.
Find a way to keep the elder socially active. This may be a club, a day program, a class, a regular card game, or a weekly get-together with family and close friends. Some do better with a one-on-one companion to take them out for a few hours a day. Others like groups. Studies show that social connection and interaction help preserve mental function.
Provide opportunities for physical activity: walks, gardening, golf, balloon volleyball. While motor abilities vary widely among elders, studies have confirmed what your grandmother said: a healthy body nurtures a healthy mind. Elders, even those with dementia, who exercise regularly experience a slower cognitive decline. They’re also less likely to fall, break a bone, and become bed-bound. Tai chi has also been shown beneficial for all elders.
Break tasks into small steps. Do not ask the elders to hurry and get dressed, shave, and come to breakfast. That is a recipe for disaster; they’ll get lost in the first task. One step at a time: Put on your underwear. Put on your pants. Put on your socks. Put on your shirt, and so on. Be patient. Do things in the same order each day. This minimizes anxiety and makes success more likely.
Avoid saying no. It just creates conflict, and fighting isn’t really fair or productive when your opponent has dementia. This doesn’t mean giving in to every whim. Rather, it means thinking about what motivates your loved one. With finesse and creativity, you may be able to inspire him or her to do the things that need to be done.
Mirror the attitude you want the elder to have. As some senses fade, others become more acute. Those with dementia are often highly aware of and sensitive to the moods of others. If you’re cranky, your loved one’s mood will suffer as well.
Make sure to offer choices. If your mother constantly asks, “What are we going to do?” ask her, “What do you want to do?” Give her choices. Opening the closet and asking what she wants to wear confronts her with an overwhelming number of choices. Rather, ask if she feels like wearing the red skirt or the blue skirt. Either-or questions work best.
Let the small things go. If your father or your husband shows up at the holiday dinner table wearing a striped shirt and plaid pants, does it really matter?
Don’t hesitate to walk away if things get strained. Come back to the idea of bathing, or whatever’s causing conflict, in half an hour. Failing that, ask another caregiver to step in. Or if that’s not possible, “change your face.” Sometimes just changing your clothes or putting on a hat or a pair of glasses will alter the dynamic enough to allow the person with dementia to make a fresh start and successfully handle the task at hand.
Try to laugh. Dementia inevitably creates funny situations. Let your loved one know that you forget things, too. Make it safe to forget: Lose your keys on purpose and then point out your mistake. Let elders know that they’re accepted, and laugh with them when things get goofy.
Personal Care Strategies
For someone with dementia, the daily routines of physical maintenance eventually become a challenge. Elders with Parkinson’s disease and Lewy body dementia develop coordination difficulties earlier than some others because those diseases affect muscle control. But elders with alcoholic or vascular dementia and Alzheimer’s eventually struggle as well. Establishing routines can help to keep the patient as functional as possible, for as long as possible.
Timing is important. Someone who’s always stayed up until 3 A.M. and slept until 11 A.M. is not going to want to be up and dressed at 7 A.M. A man who has always showered in the morning isn’t likely to be willing to switch to evening baths. A schedule often can be adjusted some, but do it slowly.
What If a Patient Won’t Wash?
Ask a person with dementia, “Would you like to have a bath?” and it isn’t at all uncommon to be told, “Thanks, but I just had a bath.” You may get this response even if the patient hasn’t washed in a month.
The elder may also see the suggestion as an affront to his or her independence. The refusal is just another way of saying, “I can take care of myself, thank you very much!” Or it may be that the patient just doesn’t remember or doesn’t perceive the dirt and the need to bathe. As brain function falters, so does perception. Sometimes elders resist washing because bathing is just sensory overload: Think of all the feelings, the sounds and smells involved—the person has to be naked, likely cold, may not like the feel of the water landing on the skin, some other person there, “watching.”
If your loved one resists bathing, change the subject for a while and then try again. Try to make bath time as calm and appealing as possible. Make sure the room is warm, the elder is covered with towels that can be removed and replaced as parts of the body are washed. Giving the elder a hand-held showerhead and letting them do most of the washing can also help. Yes, that means water spraying around and wet towels, but so be it. Consider a sponge bath as a half measure until you can get the elder into the shower.
Romancing the Hairdresser
One of my patients had always been an elegant dresser. For most of her adult life, she’d had her hair styled at Elizabeth Arden. She’d worn designer clothes and fancy Italian shoes. As her dementia progressed and she became bedridden, she suddenly refused to bathe or to have her hair washed. It seemed shocking for someone who’d always cared so much about her appearance.
After weeks of pleading and wheedling, her caregivers got her to agree to a sponge bath several times a week. But the patient held firm on washing her hair. The most she would permit the caregivers to do was brush her hair with dry shampoo powder, a half step at best.
This continued for two years, until one of the caregivers had a flash of insight into the woman’s stubborn resistance. The patient had always had her hair done at a high-end salon. She didn’t want just anyone to wash and style her hair. She wanted a professional. But she was too weak and frail to go out. The caregiver called a nearby salon and asked if a stylist would be willing to make a house call.
When the “expert” arrived, suddenly the woman’s objections to hair-washing disappeared. She cooperated as the stylist washed, cut, and dried her hair. Weekly appointments with the stylist followed.
Strategies for Bathing
To help your loved one keep to a routine of bathing, it may help to prepare a calendar to hang on the wall and mark off certain routines, like bathing and social engagements. Make it fun: say something like, “Every Tuesday and Friday is shower day, and then we’ll have a treat.” Link the shower with going to the salon to have a cut and blow-dry or to a round of golf or a visit to a favorite restaurant.
Remember that bathing brings into play issues of modesty and dignity that are much more central to older generations than they are to many of us who are younger. Use towels to cover parts of the body that are not being washed at the moment or avert your gaze to make the patient as comfortable as possible. Have an unbreakable basin with a washcloth that the patient can use to bathe himself or herself. Having a sturdy bath seat and not leaving the elder alone unsupported is key to preventing injuries.
Try to make all the externals pleasant: Make sure the room is warm. Have all the towels, soaps, and lotions set out and ready. Remove bath mats or floor towels, which can increase the risk of falls. Quiet music, lemon-scented room freshener, or a bowl of potpourri may have a calming effect.
Magazine advertisements for a walk-in tub may look appealing: just open a door on the side of the tub and get in as if it were a taxi. However, this requires people with dementia to sit naked for a long time until the water fills up around them. For many people, replacing a bathtub isn’t practical.
Using a European-style handheld showerhead and a bath seat is another option to make it easier for the patient to bathe independently. I myself prefer a bath, as do many older individuals. However, if an elder has mobility limitations or lack of judgment, having a bath in a tub is very difficult, sometimes dangerous. If in doubt, ask an occupational therapist to do a home evaluation to see what approach is safest.
Remember that older skin is dry skin. Bathing with just warm water for most of the body is just fine. For other areas, use a gentle soap such as Dove or Basis, and apply lotion afterward.
Strategies for Dressing
Your aunt may never have left the house without being dressed to the nines; your father may seem naked without a business suit. But this isn’t the stage of life for formal, complicated clothing. Zippers, belts, hooks, bras, long rows of buttons—all these can make dressing an ordeal. Also, elders often have very dry, very fragile skin. Tweeds, wools, stiff linens, and other fabrics can cause irritation.
Look for fashionable alternatives in soft fabrics. The key words should be soft, warm, and comfortable. Garments should be easy to put on and take off. For women, camisoles may be a good alternative to bras. Stretch pants are a godsend.
Let the patients choose between a few options in what they wear. Have everything ready before you start. Make sure the room is warm. Remember that it may be stressful for elders to get naked. Hand the elders a towel for cover or hand them their underwear and be as unobtrusive as possible and still be safe.
Be very aware of the elders’ dignity. Don’t do something for them without giving them the opportunity to do it independently. Don’t step in unless they really can’t do it themselves. It may take longer, but it’s important to keep them engaged and as independent as possible; it slows the decline.
Strategies for Eating
Dining should be a pleasure, but as dementia progresses, the mechanics of eating become difficult. Keep breakfast flexible, according to personal preference, but make sure lunch and dinner happen at predictable times.
Try to avoid late-night meals, as this can exacerbate gastrointestinal reflux and heartburn. Late-night snacks may also increase the risk of aspirating food into an airway. Fluids after dinner may increase the need to urinate at night and make insomnia worse.
Caffeine should be avoided, as it can cause irritability, insomnia, and frequent urination at night. If elders wake in the middle of the night, give reassurance, perhaps a sip of water, and return them to bed; avoid giving them a snack or putting on the TV. Screens at night lead to more insomnia and should be avoided; try peaceful music instead.
Pay attention to the little things. If at all possible, have the person with dementia help decide on a menu for the week. Take care with how the food is presented on the plate. Remember that smell can boost the appetite. Simmer cinnamon sticks or vanilla beans in a pot to create a pleasant ambiance.
Avoid alcohol. It dampens the senses and further handicaps people whose cognitive abilities are impaired. It also leads to more insomnia and agitation and hastens mental decline. If your mom has always had a glass of cabernet with dinner, pour her some nonalcoholic wine without comment. We have also had success putting that nonalcoholic wine in an empty bottle of a previous favorite, for the brand appeal. If the elder refuses to go along with this, water down wine and serve it in a small glass. For cocktails, I would advise to slowly water them as well, first by 25 percent, then 50 percent, then 75 percent for a small shot, and when unnoticed, stop the alcohol. Then enjoy the evening ritual this person has kept for the last forty years.
As dementia progresses, it becomes more difficult to coordinate the use of knife and fork. There are many things you can do to allow elders to feed themselves as long as possible. One good tip is to try to use the weighted silverware designed to help Parkinson’s disease patients suffering from a pronounced tremor.
Remember that many forms of dementia affect vision and depth perception. Technically, a person’s vision may be fine, and yet the image communicated to the brain may be incorrect. In this case, the patient may have trouble knowing exactly where the plate is in space. Make sure the color of the plate contrasts with the table. A white plate may get lost on a white linen tablecloth. Appropriate contrast will help get the fork where it needs to go.
With more advanced dementia, starting to eat may become difficult. This is damage in the parietal lobe that helps guide sequencing: sock before shoes, time to eat when you are given a plate of food, and so on. You can help your loved one by placing your hand over the hand that is holding the fork of food, helping the person keep eating mostly on his or her own.
Eventually, utensils will become too much of a bother, too much to handle. Then it’s time to switch to finger foods: chicken nuggets, sliced vegetables and fruit, cubed ham, triangles of toast.
Drinking is as important as eating. Liquid keeps the blood chemistry balanced, flushes out toxins, keeps the bowels regular, keeps blood pressure and energy up, and does many other vital jobs. Caregivers must provide frequent opportunities to drink. Elders may not perceive thirst or hunger and may only take a sip when a glass is offered. So it needs to be offered often. A healthy elder should drink enough to urinate at least every six hours. As stated earlier, it is best to avoid caffeine because it is a diuretic and will frequently lead to insomnia and urination at night.
Elders eventually are going to have more trouble swallowing. Make sure the elders tuck their chin in and swallow twice after each sip if they are starting to show signs of a problem. If you have any concerns, have a speech therapist evaluate the patient and provide instructions for safety. You may be advised to chop food or add nectar to thicken fluids. You may be advised to start using a sippy cup. Toward the end stage of dementia, the swallowing reflex fades altogether. At that point, your loved one will stop swallowing. That is a sign that the elder is very near the end of the disease. Of course, all medications that would oversedate should be eliminated before this stage is diagnosed.
Strategies for Toileting
Toilet routines often conflict with very strong feelings about dignity and modesty. To maximize the likelihood of success, ask a physical therapist or an occupational therapist to do a home evaluation to determine the best place to install a grab bar or the proper height for a commode with arms that will fit over the toilet. Medicare often covers these evaluations.
Give plenty of opportunity for bathroom breaks. It’s normal for most people to need to use the facilities about thirty minutes after a meal. Make sure this timing becomes part of the daily routine. When accidents happen, don’t draw too much attention to them. Just say, cheerfully and matter-of-factly, “Oh, you’ve had a spill! I think we need to change those clothes, don’t you?” If the person with dementia is still somewhat high functioning, give him or her a choice of what to change into.
When a patient begins to lose bladder or bowel control, a good strategy is to schedule a bathroom visit every two hours. It is hard to have an accident if your bladder has just been emptied. Sanitary pads may be helpful as well. For those who can no longer empty on command, disposable briefs are the best choice.
When “pull-ups” do become a necessity, don’t make a big deal about it. Just get rid of all the underwear and say, “We’re going to use these now.” Calling pull-ups “disposable underwear” makes them less of an issue.
Constipation is an issue that needs to be addressed. It can cause agitation, loss of appetite, and poor sleep. Occasionally, being plugged up may cause a life-threatening bowel perforation. People with dementia often lose track of the last time they had a bowel movement. As dementia slowly erases body awareness, they may not understand that the pain in their lower abdomen may signal that it’s been too long since they last had a bowel movement. Bowel habits need to be monitored to make sure patients have a bowel movement about once a day and don’t have to strain. It’s harder to move one’s bowels when lying down than when sitting on the toilet.
It is important that everyone drink enough fluids, eat fruits and vegetables, and keep walking and active. However, with dementia, the range of acceptable foods may narrow dramatically. In the worst case of not wanting to eat, I find that most everyone will accept ice cream (or the sugar-free, lactose-free equivalent) and Boost, Ensure, or Carnation Instant Breakfast drink mixed in beverages, or smoothies.
Generally, I avoid prescribing fiber treatments such as Metamucil or Citrucel. With these solutions, the stool turns to concrete if the person doesn’t drink enough, and forgetting to drink is typical of those with dementia. MiraLAX is a better choice—it draws water into the gut—but one must drink water with it or you just get a pasty mess. Senna and magnesium tabs are also good choices if constipation is an issue. Although magnesium is billed as critical to other health functions, almost no one needs supplementation. However, this is one area that magnesium really can be helpful.
Sorbitol or xylitol, common agents in sugar-free products, draw water into the gut. Most people will enjoy sugar-free candies, puddings, or ice cream, and the sorbitol or xylitol in these treats will help keep them regular.
Check the Bowels
In my experience, it’s often prudent to begin the search for a patient’s complaints by ruling out constipation.
Paul, an eighty-seven-year-old man, complains that he can’t urinate. That often happens when the prostate gets compressed. His caregiver takes him to the emergency room. There, the doctors do an abdominal CT scan. They find that the poor man’s colon is firmly packed with feces. His bowels are so plugged up that the blockage has pinched off his urine flow. He’s more in need of a rectal exam than a CT scan.
I see this happen again and again. The rectal exam is the only way to really tell if someone is very constipated. You can’t pat someone’s abdomen and really know how the bowels are functioning.
Strategies for Dental Care
With all the other health issues facing elders, dental care commonly gets lost in the shuffle. A catastrophic illness may shoulder its way to the top of the priority list, forcing dental care to the bottom. As it becomes more difficult for the elder to get around, cleaning appointments may fall by the wayside.
As long as the elder is brushing and not complaining of dental pain, families may think there’s not a need for a dental visit, especially one that might be difficult for the elder and the family. Meanwhile, as motor skills or health awareness falters, the simple act of brushing teeth may become difficult for the elder, but having someone else do it may seem an invasive ordeal. So elders and families often avoid dental issues.
This is a mistake. Even if someone has had lifelong, consistent dental care, a lapse in maintenance can lead to rapid decay that makes extractions necessary. You may not see cracks around that bridge, crown, or denture, but they’re there. These microscopic openings allow bacteria to slip in—bacteria that will establish themselves in those cracks and rot the teeth.
Dr. Peter Y. Kawamura is a San Francisco dentist who’s part of a growing group of dental professionals who make house calls to elder patients who can’t travel to a dental office. He uses miniaturized equipment to perform almost any procedure found in an office setting. He often works with patients in various stages of dementia . He shared some tips for handling dental care for elders with dementia.
According to Kawamura, the first line of defense is daily brushing. Websites like www.specializedcare.com sell all kinds of tools to make this easier. Buy a three-sided toothbrush (Benefit, Surround, or another brand) that scrubs the front, back, and crown of each tooth in one stroke. The brush may look odd, but it will cut down on brushing time and reduce stress.
As patients become unable to care for their mouths, caregivers should gently take over the task. Buy a dental prop. This wedge-shaped soft device keeps the patient from biting you. Go slowly. Explain what you’re going to be doing. Let the elder look at the instruments you will be using and try them out. Don’t try to clean the entire mouth in one sitting. Each time, try to clean just a bit of the mouth. Let small successes build on each other.
It may be helpful to hook thumbs with the elder and hold the toothbrush à la chopsticks or a pencil grip. With the hooked thumbs and the caregiver guiding the toothbrush, the person will be alerted by the movement of his or her own arm that something is coming to the mouth, and the elder may be less startled. This technique can also be useful for feeding elders who can no longer feed themselves.
It may also help to make the room feel as much like a dental office as possible: Recline the bed to an angle similar to a dental chair. Put on a face mask. Wear a camping headlamp that’s reminiscent of a dentist’s headlamp. All these props will likely stir memories of being in a dentist’s office and may inspire the appropriate behavior. Or that may not work at all; each person is different. Try several approaches until something works for your loved one.
Don’t forget to make appointments with a real dentist at least every six months. This is especially important after a long illness or hospital stay. During these emergencies, patients may go a month or more without brushing their teeth. A professional cleaning is in order as soon as possible. Dr. Kawamura also recommends regular oral debridement by a dental hygienist or dentist and regular periodic application of silver diamine fluoride (SDF) applied to all root surfaces of teeth to minimize/stop tooth decay and promote the longevity of dental restorations.
If getting to the dentist has become an ordeal, look for a dental hygienist or a dentist, like Kawamura, who will make house calls. Some dentists will do so for long-time patients. A few will do more involved procedures at home. Investigate whether your area has any dental hygienists in alternative practice. This specialty includes hygienists who work independently of a dentist’s office, and many of them do house calls.
Strategies for Hospital Stays
The hospital can be a scary place for anyone, but it’s especially so for someone suffering from dementia. Imagine having an operation when you have no context, no understanding of what’s happening to you. Who are all these strange people rushing around? Why are they poking me with needles? What are these tubes in my arm? Why do I feel pain? What are those voices, and what are they saying? What are those beeping sounds? Why is my bed rolling down the hallway? Why does everything seem so fuzzy? Why can’t I go home? Why is everyone telling me to stay still? All these questions and the fact that elders perceive pain differently create terrible anxiety for most dementia patients.
I’ll never forget accompanying a friend to outpatient surgery. The elder woman in the next treatment bay obviously had fairly advanced dementia. A middle-aged woman, her daughter I guessed, answered all the preoperative questions. The problems began in post-op. The elder woman woke up from anesthesia crying out for her daughter. Unfortunately, that hospital only allowed visitors to stay a few minutes in the crowded post-op ward. The poor woman cried for her daughter for hours. She was hysterical by the time she was released to go home. Often in these situations, patients receive heavy sedation. They’re then discharged with a much higher risk of falling, breaking bones, or aspirating food.
Sometimes awful incidents like that can’t be helped. But they raise questions about how certain situations fit with the goals of care. What makes life worth living? If the elder can understand that he or she is getting help for a medical problem and doesn’t fight the care, then hospital treatment may be fine.
But what if the elder doesn’t understand why he or she is in the hospital? What if the treatments seem like attacks—tying down the elder to put in an IV infusion or, worse, putting a catheter into the bladder (which to some may feel like a sexual assault).
I always advise families to consider what adds to improving the quality of each day. If an elder is scared, can’t comprehend the treatment, and fights back, how does that improve quality of life? For some, it is better to stay in their “home” with its familiar surroundings and familiar caregivers and to receive as much treatment there as possible. When the elder has declined to the point that he or she qualifies for hospice (a prognosis of six months or fewer), hospice teams can help support the elder at home and attend to comfort.
If your loved one must be hospitalized, families need to make sure that each doctor, nurse, and orderly knows that your relative has dementia. Try to set up a schedule of familiar people so that someone trusted is with the person with dementia at all times, both to answer questions from medical staff members and to minimize the loved one’s anxiety. If you have a musician in the family or a good storyteller, sometimes playing tape recordings of familiar voices will take the edge off the anxiety.
Have a list of habits, medications, and concerns ready for the doctors and nurses. What medications is the elder taking? What behavioral concerns does the elder’s regular medical team have? What things does the elder find particularly distressing? The more information you can give the hospital staff, the better.
Some families also find it helpful to post a short letter to the staff and to tape it to the head and foot of the patient’s bed. The text may read something like this: “Dear Staff: My mother has dementia. Please speak slowly. She’d like to understand but she can’t. We love her very much and hope you will give her the best care possible.”