Living with dementia

There are more than 70 different conditions that result in the loss of memory and logical thinking that we call “dementia.” Alzheimer’s is the most common. Other conditions include stroke (called “vascular dementia”), Parkinson’s, and prolonged alcoholism.

The advanced stage of dementia
Most dementias are progressive, meaning they get worse over time. While your loved one’s condition may not be curable, there are things you can do to make daily life more pleasant for all of you. The articles below are written for families dealing with the more advanced stages of dementia.

You don’t have to do this alone. At Iowa City Hospice, we understand dementia. Give us a call at 1-800-897-3052, toll-free. We’d be happy to help you with resources for you and for the person you care for.

Pain and advanced dementia

Like any older adult, your relative with dementia can have pain from arthritis, a toothache, a sore knee, sciatica. The difference is that his or her pain may go unrecognized and untreated. The same condition that is clogging your loved one’s brain makes it difficult for him or her to identify or describe pain. Even if you ask directly, “Are you in pain?”, very likely your loved one will not be able to tell you. The result is unnecessary suffering.

Sudden changes in behavior may signal that your loved one is hurting somewhere.

Suspect pain if you notice changes in your loved one’s

  • breathing
    Pain brings with it labored and sometimes noisy breathing. As pain increases, breathing may become faster, including rapid, short breaths.
  • body language
    Think “pain” if your relative develops a sudden restlessness, such as pacing or sleeplessness. Fierce, even aggressive hitting, pulling, or pushing away is frequently a sign of more severe pain. So is curling up into a rigid ball.
  • ability to be soothed
    The more severe the pain, the less likely it is that your loved one will calm down with simple reassurance or touch.
  • speech
    This is the most obvious signal. It includes soft moans or groans, all the way up to repeated yelling or wailing when there is intense pain.
  • facial expression
    A new look of sadness or fear or a scrunched-up, grimacing face may indicate your loved one is in pain.

Look for the source of pain
If you sense something is wrong, look for a possible source. Is there a pin or sharp object somewhere? Perhaps his or her shoes are too tight. Maybe there’s a bladder infection. If the behavior persists, consult your health provider. You may find our article about managing pain to be a useful supplement to treatment the doctor suggests.


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Emotional swings

If the person you care for has dementia, you may find his or her sudden emotional swings more confusing or troublesome than the forgetfulness. Although you can’t completely prevent outbursts, you can reduce their frequency and their intensity.

When a mood swing or difficult behavior occurs, ask yourself, “why now?”

  • Look for a cause. Your loved one may be responding to someone’s comment or behavior, or to something in the room, such as too much noise or light or too many people.
  • Look for a purpose. Your loved one may be acting out a basic human need. For example, sweeping and then resweeping a walkway may seem a pointless, repetitive action but actually reflects a need to feel productive.
  • Look for a medical problem. Pain, an infection, a hearing or vision problem, or a reaction to a medication may underlie the behavior change. Get a doctor’s input.

When responding, avoid correcting, reasoning, or bringing them into “reality.” It will just frustrate everyone. Acknowledge your loved one’s feelings. They are real to him or her.

  • Connect and then distract. Your loved one’s behavior is likely to persist until he or she feels heard and understood by you. “I can see you’re frustrated. I would be too. Let’s have a bite to eat first, and then we can deal with this.”
  • If there’s sadness or fear. Use touch and words of comfort and support. Demonstrate that you understand. For example, “You’re looking lonely. May I sit a while with you?”
  • If there’s anger. Stay calm. Don’t challenge or disagree. If you are in the middle of doing something together, perhaps it’s time to take a break. You can excuse yourself to go to the bathroom. When you come back, you can reevaluate if it seems wiser to resume or to do something else.
What patterns do you notice about your loved one’s emotional outbursts? How might you respond?
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Music and dementia care

When caring for a relative who has moderate to advanced memory loss, it can sometimes seem like they have disappeared into their own world. How do you create connection and support their quality of life when they seem capable of so little?

Music is proving to be one good answer to this challenge. Research shows that music is processed in parts of the brain that remain lively long after a person’s ability to “name that tune” is gone. Hearing familiar songs brings up old memories and reconnects a person to his or her sense of self and to times past.

Music is the universal language. It can be a fun and valuable part of your caregiving toolkit. For instance, you can

  • stimulate with happy tunes, especially music with a pronounced beat. This can help motivate your relative to get through tasks such as bathing and dressing.
  • calm with soft, harmonious music that tends toward lullaby. Use quiet music to encourage your loved one to take a nap or to soothe them at bedtime.
  • redirect to address or avoid agitation. For instance, play favorite sing-along tunes at a time of day your relative is apt to pace or become irritable.
  • connect with them through songs that prompt shared movement. Maybe dancing, or just toe tapping, swaying, or silly gestures.

You might collect some of your relative’s old records (or tapes and CDs) and play songs as needed. Or compile music on a portable music device, for example an iPod or other MP3 player. Then your relative can listen and move about with headphones.

For most purposes, strive for music that your relative knows and loves:

  • Songs from childhood, with happy lyrics
  • Music from youth (age 18–25), for memories of a lively time in life
  • Tunes of a favorite composer or performer that recall meaningful occasions
  • Hymns and other religious music for comfort

Observe your loved one’s response to the music and make changes as needed.

How might you bring music into your relative’s daily life?
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Preventing aspiration pneumonia

The esophagus is a tube in the throat that is shared by the stomach and the lungs. Ordinarily the body can tell the difference between food and air. When food or liquid is swallowed, it gets shunted away from the lungs and into the stomach. That shunt does not work very well with people who have advanced dementia.

Add to this the fact that people with advanced dementia are very prone to infections. In particular, they seem to get pneumonia. A lot. This is not the pneumonia you can get a vaccine to prevent. This kind is from food or saliva going into the lungs instead of the stomach. It is called “aspiration pneumonia.”

A leading cause of hospitalization and death

Aspiration pneumonia is responsible for numerous hospitalizations. And rehospitalizations. These can be very distressing for people with memory problems. Even more serious, aspiration pneumonia is often the actual cause of death for persons with advanced dementia.

Ways to prevent aspiration pneumonia:

  • Sitting up to eat
    In the later stages, many people with pneumonia spend a lot of time in bed. If your loved one is still interested in food, have him or her come to the table to eat. At the least, try raising the head of a hospital bed to 90°.
  • Calm, leisurely meals
    A rushed meal is more likely to result in food going down the wrong pipe. So is a meal with lots of distractions. Avoid heated emotions or lively conversation. Studies reveal that swallowing is more difficult if a person has been very active before a meal. Those who have rested calmly for 30 minutes beforehand have an easier time swallowing.
  • Small bites and sips of water
    Large bites are difficult to chew and swallow. Small bites, especially alternated with sips of water, can help the food go down easier.
  • Tucked chin when swallowing
    There is evidence that lowering the chin toward the chest and then swallowing seems to line up the throat in a favorable angle.
  • Thickened liquids (with caution)
    Thickened juices and other liquids have been shown to flow more smoothly down the proper path. But so many people dislike the texture, they give up drinking fluids altogether. This creates other problems that are generally worse. More confusion and bladder infections, for instance. Unless your loved one does not mind thickened liquids, the benefits do not seem to be worth the risks.
  • Regular oral hygiene
    Brushing teeth twice a day can go a long way toward reducing aspiration pneumonia. The use of nonalcoholic mouthwash can also help. So can scraping the tongue and brushing the inside of the checks. Many people with dentures, missing teeth, or no teeth mistakenly think they do not need to brush. Not true! Even people being fed through a tube—no food by mouth—need to brush their teeth and tongue and rinse their mouths daily.
What can you do to reduce the chance of aspiration pneumonia?
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Dementia tips for families

Everyone understands a hug! What your loved one may lack in the ability to talk, he or she certainly can absorb in the form of love and affection. In fact, calm, nonverbal reassurance is one of the best gifts you can give your loved one at this stage.

Draw upon the five senses
The advanced thinking of the brain is damaged. But your loved one probably still relates to touch, taste, smell, sight, and hearing. Think about pleasant activities that include these different senses. When outside, for instance, remark upon the warmth of the sun, the smell of the trees, the song of the birds.

You can reinforce love and security with little gestures of affection. Rubbing lotion on hands or feet, stroking the arms, massaging the scalp, holding hands.

Keep life simple and slow
Your loved one has a condition that makes it hard to process new information. The answer? Make life simpler! Remove clutter. Reduce rush. Create routines. The less your relative has to think through, the less likely he or she is to get confused and overwhelmed. Comfort is the name of the game.

Stay open minded

It may be difficult to know what your loved one would like, but look for clues in behavior. Think like a detective. Be flexible. For instance, your mother may pick up a grandchild’s stuffed animal or doll and carry it around. Maybe she would like one of her own. Fond memories of caring for a small being reach deep into the heart. Allow that comfort and connection.

In a different vein, bathing can sometimes be a struggle. A shower is noisy and the chill of getting wet is unpleasant. Try a sponge bath in a very warm room. Keep your relative covered over most of the body and expose only that part you are cleaning. Dry immediately and then move to a different part of the body. It may not be what you think of as a bath, but it gets the job done well enough. And no struggles!

Make the most of family visits
If family is coming to visit, you may be feeling both excited and concerned: excited about brightening your loved one’s life with family gatherings and activities. Concerned that your loved one may become tired or anxious with the extra activity.

It is wise to think ahead about factors that could add stress and undermine the pleasure. These tips can help ensure fond memories of the visit.

  • Set expectations. Update visiting family members about changes in your loved one’s health. Avoid awkward moments by having them adjust their expectations in advance. Let them know, for example, if Mom is unlikely to recognize them, or Dad can no longer use a fork and knife.
  • Maintain routine. You’ve created useful routines for caring for your family member. Don’t give them up! Instead, make your regular schedule known and ask others to plan around it. Your loved one will fare better with this stability.
  • Plan simple gatherings. Keep it low key and flexible. Although togetherness sounds good, your loved one may do better in a separate room with short visits by one or two people at a time. Ensure that the day’s pace allows for naps.
  • Provide tips. Give visiting family members ideas on how to respond to behaviors such as confusion or garbled speech.
  • Suggest activities. Your loved one may have special delights, like cuddling a pet together or simply holding hands in silence. Sometimes singing together works well, even if talking does not. People with advanced dementia remember and enjoy hymns or old songs from their past. Then again, something as simple as rubbing lotion on the hands or gently brushing your loved one’s hair can create a very tender and loving connection.
  • Take a break. This is supposed to be fun for you, too! If your loved one needs ongoing care, ask another family member to take over for a while. Or hire someone for a day so you can enjoy some of the visit without your caregiving responsibilities.

Take care of yourself

Easy to say. Hard to do. But oh so essential!

Research has shown that the more stressed you feel as a caregiver, the more likely you are to develop health problems of your own. Your family member needs you! If for no other reason, you need to keep yourself healthy in order to care for your loved one.

Write yourself a prescription for

  • social time. Spend time with others simply for fun and relaxation. Make it a point NOT to talk about the person you care for.
  • exercise. Work off your frustrations and reinvigorate yourself physically. Or unwind mindfully through activities such as yoga or tai chi.
  • crafts and hobbies. Do what you love, whether it’s art, music, writing, gardening, cooking, painting, or some other creative pleasure.
  • religious/spiritual practice. If spirituality is a part of your life, make time for prayer or meditation and/or attend the services of your faith community.
  • support groups. Meet with others in situations like yours to laugh, cry, and share tips.
  • respite. Take a break from caregiving. It’s not selfish, it’s absolutely necessary! You must replenish your well.
  • regular checkups. Stay on top of your own health concerns. Make appointments for routine dental checks and physicals. And keep your appointments!
What can you do to take care of yourself so you can continue healthily as a family caregiver?
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Making treatment decisions

Your loved one’s quality of life

Hopefully your loved one created an advance directive for precisely this situation. Now is the time when family members must make decisions because your relative is not able to do so. At the least, it’s optimal to have had family discussions before the dementia reached this advanced stage.

When considering treatment decisions, you want to make choices based on your loved one’s values and priorities. How did he or she define a good quality of life?

What is the long-term goal?
Painful procedures and difficult side effects are hard for a person with dementia to understand. Often they are scary. With advanced dementia, the natural end is not far off. As a result, you may choose to allow your confused loved one a more comfortable day-to-day experience. This decision is very personal. Ideally it reflects what your loved one would want for themselves.

Situations like cancer or a heart attack
Some decisions are easier than others. For instance, a person with dementia might also have cancer. A lengthy process of chemo and radiation would not make sense. It would be painful and frightening. Your loved one would not understand the purpose. It would simply prolong the inevitable. Treatment would add extreme discomfort for what is probably only a few additional months or weeks.

Similarly, with a heart attack. A key decision you will be asked to make, especially if there is a hospitalization, has to do with CPR. Do you want your loved one to be brought back if his or her heart stops? Quite honestly, only 15% of people survive resuscitation. And those who do, frequently die a few days later anyway. If your preference is to spare your loved one the confusion and trauma, then you will need to set up a “DNR” —do not resuscitate—order.

Artificial feeding
The decision to start tube feeding is more complicated. However, it should be looked at with the same set of questions. What is the long-term goal? Will it result in a better quality of life?

In the advanced stage of dementia, your loved one may no longer remember how to eat. He or she may have forgotten how to swallow. Like most people nearing the end of life, your relative may simply lose interest in food.

It can be personally challenging to decide not to force artificial nutrition. Many families worry that they are going to starve their relative to death. Read our article about nutrition and serious illness. In particular, there is a section about artificial (tube) feeding. Medical experts agree that in cases of advanced dementia, there is little benefit to this procedure. The risks and distress involved with tubes for feeding outweigh the actual benefits.


What plans does your family have in place in terms of treatments during the advanced stage of dementia?
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Dementia and end-of-life care

Most people near the end of life will need 24/7 care. They just can’t live on their own anymore. This is especially true for persons with dementia. The damage to the brain is just too great.

As a family caregiver, during the last months and weeks your focus will be on providing comfort care. Keeping your relative safe, clean, and content is the highest priority.

Conversations
The ability to speak and understand is so impaired that conversations are not likely. That doesn’t mean that you can’t talk. Pointing out the smell of a lovely flower or the return of the birds at the feeder is a cheery uplift. Your relative will understand your tone and happy intent. There just isn’t likely to be much of a verbal exchange. Instead, focus on communicating nonverbally and using all the senses. Touch and affection are especially meaningful.

Eating and swallowing
The act of swallowing is more complicated than you might think. Eventually we all lose the ability to swallow before we die. Your loved one’s brain condition may make this happen sooner than most.

Loss of appetite
It’s as though your loved one just forgets to eat. And it may be that as they near the end, they simply don’t need food. It’s a natural part of the body letting go. Here are things you can do if you believe they are truly hungry:

  • Sit upright with feet on the floor
    Discourage eating in bed if you can. Sitting upright will reduce the likelihood of choking, or getting pneumonia from food going down the wrong pipe.
  • Remove distractions
    From decorations on the table to animated conversations, these can confuse a person with dementia. They lose their concentration on eating and swallowing.
  • Reduce choices in foods
    Serve one course at a time, ideally the most important one.
  • Embrace finger foods
    At this point, forks and knives are way too complex to handle. You might need to model eating. (Pop that bite-sized quiche into your mouth to prompt the memory of what to do. Yummy!)
  • Consider adding some sugar
    We all have a sweet tooth. If you are concerned about eating, appeal to the senses! Extra sugar at this stage is not likely to cause a lot of problems. In fact, weight loss is usually a big concern, so the extra calories are welcome. (If your loved one is diabetic, ask the health care provider which is more important: getting calories inside or maintaining a strict sugar balance. There is probably a safe middle ground.)

Incontinence
In the final weeks or months, your relative may lose control of bladder and bowel. You may need to actively walk your loved one to the bathroom, help them remove clothes, and guide them through the process. Here are some tips to make this situation easier on you:

  • Use dementia-friendly garments
    Pants with an elastic waist are a godsend. No need to fuss with zippers or drawstrings. Dresses and skirts are easy for women to lift. Removing obstacles to a quick disrobing is the best way to reduce accidents.
  • Limit fluids at nighttime
    Encourage ample drinking throughout the day, but stop fluids about two hours before bedtime. This will allow your loved one to completely empty the bladder before the lights are out, giving everyone a better night’s sleep.
  • Set up a bedside commode
    If your loved one is still able to get up from the bed, a bedside commode will result in fewer accidents.
  • Use incontinence products
    The issues of nighttime bladder incontinence are different from daytime lack of bowel control. One size does not fit all! Consult with a specialist so you can get the best protection possible.
  • Set up a routine
    You may need to track food and fluids going in to get a sense of how long it takes for them to make their exit. Once you understand your loved one’s natural timetable, you can visit the bathroom regularly and plan your days accordingly.

Difficulty with balance
Walking will likely become very stiff. Your relative will shuffle more than stride. The part of his or her brain that deals with balance will be affected. Your loved one is more vulnerable to falling. A fall can result in a broken hip, a hospitalization, a hip replacement, and several weeks in a long-term care facility. VERY disruptive! Painful, too.

Here are some things you can do to reduce the risk of a fall:

  • Remove clutter around the floor
    This includes throw rugs and the grandchildren’s toys.
  • Provide good lighting
    Many people with dementia lose their spatial abilities. Shadows make life difficult. It’s easy not to see or register a barrier that is in a darker space.
  • Examine shoes for fit and traction
    Whether your loved one wears slippers or walking shoes, be sure they fit comfortably and that the soles are not slippery.
  • Ask about mobility aids
    Sometimes a walker is useful. On the other hand, it may take more coordination than your loved one can muster. Talk with your health care provider about options.
  • Use a “gait belt”
    This is a wide, very strong cloth belt that is designed to go around the waist with extra room for your hand in the back. The concept is that you can walk behind your loved one and provide a stabilizing effect. If he or she seems to lean right or left or too far forward, you can help bring them back to center.

Eventually your loved one’s physical abilities will become so limited that he or she may spend most of the time in bed or in a chair.

Confusing night with day
People with dementia often shift their internal clocks into reverse. They sleep during the day and are up at night. This can wreak havoc on a family caregiver!

  • Strive for a schedule
    Maintain a routine of waking up, eating meals, and then going to bed at the same time every day. This rhythm is reassuring.
  • Limit naps if possible
    Toward the end of life, your loved one will naturally sleep for much of the day. But if this results in being up and restless at night, do your best to shift that clock.
  • Lots of lighting during the day
    The dark produces anxiety. Provide lots of lighting during the day and on into the evening. (Some people with dementia get especially anxious at “sundown.” Turning on the lights at 3:00 will help counteract that reaction.)
  • A comfy and safe sleep space
    A warm bedroom with a soft nightlight for safety will be the most reassuring. A cozy blanket and even a stuffed animal can appeal to the senses and cue your loved one to stay in bed.
  • Limit food and drink at night
    Serve main meals midday and stop all fluids two hours before bedtime. This way all the bathroom functions will likely be taken care of before bed and there will be no bodily need to get up. Limit sweets and other stimulants to the morning hours.

Hallucinations or delusions
The person you care for may see things that you don’t see. He or she may hold on to beliefs that are not founded in fact, such as fear that someone is trying to break into the house. Or your relative may be so disoriented that he or she is living in the past. You may be confused with a spouse or sibling, especially if there is a resemblance from youth.

Telling your relative that their visions or beliefs are not true will only breed mistrust. Instead,

  • go along with it
    If your loved one’s version of reality seems harmless enough, let it be. This is not a hill to die on!
  • be reassuring
    Offer verbal and nonverbal signals that your relative is safe.
  • use distraction techniques
    Without sounding confrontational, simply state what you are seeing and then direct your loved one’s attention to something else in the room.
  • reduce shadows
    Keep the room well lit. Shadows are often the breeding ground for unfounded fears.
  • play soothing music
    The universal language of music can set a calming emotional tone. It’s also a handy distraction. Draw your loved one’s attention to the sounds if he or she is focusing on distressing sights or worries.
  • consider medication
    If your loved one seems especially anxious, talk to your health provider about calming medicines.

The last weeks of life
People dying with dementia go through the same bodily processes as people who are dying from other conditions. It’s just a bit more difficult to provide care because your loved one is unable to offer much in terms of feedback or communication.

Please check out our article about the last few days. Since dementia is a problem with the brain, some of the symptoms noted for the last few days may, in your loved one’s situation, actually occur weeks before death.

Ask about hospice
Hospice and palliative care specialists are the experts in relief at the end of life. They understand the needs of the dying and are there to support family members as well. There is no charge for this service. You don’t have to go through this alone.

Most families who get hospice support say they wish they had done so sooner. Give us a call at 1-800-897-3052, toll-free.
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