Final stage of dementia

Signs and symptoms of final-stage dementia

The final stage is very much like the late stage, but with more problems accumulating. In particular, their immune system, digestion, and balance will get worse. The last few days will be similar to the last few days of anyone dying of natural causes. If you have never been present to care for a person who is dying, it’s useful to know what “normal” looks like.

Final-stage signs and symptoms include the following:

• Multiple infections. As the immune system declines, your loved one will get more infections. Pneumonia (infections in the lungs) and urinary tract infections (UTIs) are the most common.
• Unable to move around on one’s own. The person you care for will likely spend most of their time in a chair or in bed. They will require assistance getting up and walking. As a result, they will need the presence of a caring adult twenty-four hours a day.
• Nonverbal communication. At this point, they can’t usually speak or understand words spoken to them. They do understand tone of voice and caring intentions. Gentle physical affection, a smiling face, and love in one’s eyes are often well received.
• Difficulty eating. The swallowing process is a very complex coordination of muscles. Your loved one may forget how to swallow and as a consequence, often choke. They may forget to be hungry and outright refuse to eat. (People in the last few weeks of life often refuse to eat. This does seem to be a natural response as the body starts closing down.) If the person you care for is diabetic, talk to the doctor about adjusting medications to appropriately reflect changes in eating.
• Weight loss. With no appetite, your loved one will lose weight. They will become more frail overall.
• If they still had control of their bladder and bowels earlier, it will completely go away in the final stage.
• Sitting up may be difficult without assistance. The muscles of the neck can become weak. They can’t hold the head upright.
• Losing the ability to smile. The loss of facial control is difficult to witness. You have to rely on other signs, such as squeezing a hand, to know that they are comfortable and without pain.

Last few weeks and days

• Temperature changes. You may notice signs of feeling too hot (trying to remove covers) and feeling too cold (shivering or curling up into a ball). As the heart works harder and harder to keep beating effectively, circulation will be weak. Hands and feet will be cold and may turn blue.
• More time “sleeping.” In the last few weeks, people who are dying spend a lot of time “away.” It’s like sleep, but deeper. It’s possible that they can still hear, so be careful what you say around them. Kind words and a loving tone of voice still seem to make it through the clouds of the dementia. Conversely, talk of death and dying can result in signs of fear or agitation.
• Fragile skin. Thin skin and frequent bruising are common. So are bedsores, especially at bony pressure points such as hips, shoulders, heels, ankles, and tailbone.
• Agitation. They may become more restless and fidgety. Picking at a blanket or thrashing in bed. Toward the very end, many people often seem to reach upwards, as if to be picked up.
• Hallucinations. The person you care for may already have been seeing things you don’t see. Toward the end of life, this becomes especially common. If they are still talking at all, they may murmur the names of relatives who have already died.
• Irregular and noisy breathing. The last part of the dying process includes the lungs filling with fluid. This causes a gurgling sound with each breath. It does not seem to be distressing for the person who is dying. But it is often uncomfortable to hear. Breathing will eventually become more shallow and irregular, with longer pauses between. And, at some point, the person simply will not draw another breath.

The experience of those in the final stage of dementia

Using the analogy of dementia as turning back the clock, think of this final stage as when one loses the learning of the infant. Letting go of continence, letting go of feeding themselves, letting go of language. People in the final stage of dementia become entirely dependent and simply seek physical and emotional comfort.

It’s difficult to truly know what the final stage is like for the person with dementia since they lack the ability to speak. It’s probably a continuation of the late stage, but with the added experiences of the body closing down. Those without dementia who can still talk during their last weeks and months often describe extended periods of sleep as comforting. The body is having a difficult time, so they are tired. Staying alert and awake is a lot of work!

They don’t seem to experience hunger. In fact, many prefer not to eat. They have no appetite. It’s just too uncomfortable and too much work to digest. In biological terms, the body is focusing all its efforts on breathing and keeping the heart beating.

If there is another condition besides dementia, then likely they will be experiencing some of those problems. For instance, cancer often brings pain. Heart disease comes with great fatigue. COPD results in difficulty breathing, with a type of anxiety called “air hunger.”

The person you care for doesn’t have the ability to understand these other conditions, so they may become scared and withdrawn. They certainly don’t understand the purpose of treatments. Tolerating the side effects of chemo in the hope for a cure is far too abstract a concept.

Their days seem to revolve around how they are feeling at this moment now. Are they comfortable? Without pain? Judging from the closing down of their body systems, as well as their thinking, they do seem to be slowing down as they prepare to go.

How family caregivers can help someone in the final stage of dementia

The ways to help in the final stage are much the same as for the late stage, but a little less verbal. This doesn’t mean you can’t talk. It’s just unlikely the person you care for will understand the content. They very much do understand your tone of voice, body language, and your facial expression!

Think always in terms of what would be the most soothing at this moment. Usually simple routines with minimal complexity. A few other thoughts:

Use all five senses

• Both your touching of them (holding hands) and their having comforting objects to touch and hold: A soft blanket. A stuffed animal.
• Play favorite music, especially music that is soothing. Sounds from nature are often very calming.
• Looking at soothing picture books, old photos.
• If they enjoyed fragrances in lotions or flowers in the past, continue with that. (Putting lotion on hands, arms, and legs is also a nice touching activity.) If there are scents they disliked in the past, they probably still dislike them, so best to avoid those.
• Favorite drinks might be an option. Remember that swallowing is difficult and people in this stage of dementia often lose interest in eating.

Pay attention to nonverbal signs of pain. If the person you care for has other conditions, such as cancer, you want to be extra observant. Even if you ask them if they are feeling pain, they likely won’t be able to answer. Instead look for these signs:

• A furrowed brow
• Groaning
• Fast breathing
• Fidgeting (repetitive plucking at the edge of a blanket)
• Frequent urination (may be a bladder infection)
• Inability to be soothed

Simplify medical treatments. Especially if the person you care for has been taking medications for cholesterol or has had exercises for physical therapy, if you haven’t stopped by now, consider doing so. Talk to the doctor about what can be dropped versus what might be best reduced. (Insulin, for instance, may still be needed, but maybe not in the same quantities as before, when the person was eating.)

The last few days. In addition to late-stage dementia, the person you care for will at some point start actively dying. This is a normal process at the end of life. There are things you can do to ease common difficulties:

• Provide physical comfort
  • Pain management. Address any pain you believe they are experiencing. Ask the doctor for medications.
  • Relieve breathing problems. A humidifier may help. Also raising the head of the bed higher than the heart and feet. (Rent a hospital bed or use “bed risers” for the legs at the head end of the bedframe.) Have a fan handy or open a window if it’s not too cold and not allergy season.
  • Care for the skin. It will get very frail and thin. Keep your loved one clean and dry. You may need to put lotion on them several times a day. You will also want to be mindful of bedsores on bony parts of the body (hips, shoulders, ankles, heels, tailbone). Turn them to a different position every two hours so there isn’t too much pressure for too long in any one of these places.
  • Don’t force foods or fluid. Digesting food is too much work for the body in the last few days. The person you care for has probably already lost their appetite. As for fluids, the body is already fighting to get rid of fluid in the lungs. Giving your relative more to drink just makes that harder. If they have a dry mouth, let them suck on a wet washcloth or give them ice chips to crunch. Use lip balm or oil to sooth chapped lips.
  • Temperature fluctuations. Toward the end, the body’s internal thermostat stops working at some point. Look for nonverbal cues of discomfort. They may shiver if cold, or curl into a ball. If they start throwing off blankets, it may mean they are too hot.
• Address mental and emotional needs. Most people spend the last few days in a sleeplike state.
  • Hallucinations are common. They are not a problem as long as your relative is not distressed. People who do not have dementia may murmur the names of folks who are already deceased. It’s even quite common for them to be reaching upward, as if to be picked up. There’s nothing you need to do about this. It just seems to be part of the natural process of dying.
  • Soft, calming music can help ease agitation.
  • Limit the number of people in the room. And keep your voices low. (Be careful what you say to each other in front of them. They may still be able to hear you, even if they seem to be asleep!) Hold their hand. Talk to them in a loving and reassuring voice. Share positive memories. Your calm presence is a gift.
• Support their spiritual needs. If your loved one is religious, then praying or singing hymns would be very helpful. Have a faith leader in their congregation come administer any end-of-life rituals.

You don’t have to do this alone. Consider hospice.

This is a free service 100% paid for by Medicare. It is designed to help people who understand there is not a cure for their relative’s condition. It is for people who simply want to have a natural, pain-free end of life. If you believe this is what your loved one would want, it’s very much worth exploring.

Most people think of bringing hospice in just a few days before death. In reality, hospice can provide support for up to six months before the patient dies. No one has a crystal ball, of course, but most families end up wishing they had called hospice sooner than they did. The help had been invaluable. If you think your loved one is entering the final stage, give hospice a call. They do not provide twenty-four-hour care, but they do offer ongoing visits from a team of professionals trained in end-of life care:

• A nurse’s aide for bathing your loved one several times a week
• A nurse for assessing and managing pain and other forms of distress. Hospice nurses visit weekly and can get prescriptions as needed from the medical director. They can also coordinate services and arrange for a hospital bed and other equipment and supplies to make daily care easier.
• A volunteer for weekly companionship. They can sing with your loved one, or read to them. Or simply be present for a few hours so you can take some time off.

Family members tend to be more positive about the overall quality of the medical care their loved one received when hospice was involved (52% report great quality of care with hospice as compared with 41% of those who didn’t have hospice support). Also, people on hospice are less likely to undergo distressing transfers to the hospital. Most people prefer to die at home. Hospice provides care and support wherever the patient lives, so there is generally no need to make a transfer. Hospice can help your loved one have a peaceful passing at home. An Aging Life Care Manager can help you choose the hospice provider best suited to your loved one’s needs.

Ask the doctor if hospice is an option for your loved one.

Self-care for family caregivers of persons in the final stage of dementia

Your own experience of the final stage. You will probably have a wide range of emotions as you recognize the end is near. There may be grief and sadness. But relief is also common and natural: For your loved one’s release from suffering, and for your own release from all the responsibilities, care, and worry. Some people feel guilty that they look forward to the relief. Or that they don’t feel particularly sad. If this is the case for you, you probably started grieving months and years ago as the disease began to steal your loved one’s personality away. You have come to accept the loss of the relationship you once had.

It’s not uncommon to feel lost and isolated during the final stage. So much of your energy has been spent supporting the person you care for, you have lost touch with the person you used to be. It’s important to start reinforcing that you still belong in the land of the living. You can accompany your loved one to the door of death, but it’s not your time to cross. You need to stay here. It’s time to start investing in your future.

If you have not been keeping up with your own health, do so now. Too many family caregivers sacrifice their own medical appointments to care for their loved one. Then upon their loved one’s passing, their own health issues arise. In addition to doctor visits, pay attention to getting enough sleep and to eating well. Ideally you would also take time for some sort of exercise or movement. That can be stretching at home or better yet, walking outside with a friend or in nature.

Get help. In order to do this, you have to get help. That can be in the form of other family members pitching in, or hired caregivers. Respite can be in short spurts throughout the week, or a more permanent shift to 24/7 care. At this point, your loved one may not really know who you are. It’s time for some soul searching as you consider the best use of your energy. Do you really need to be the one providing all your relative’s care? It might be better done—and literally more effectively done—by caring professionals who aren’t so exhausted. This can give you time and energy to focus on providing emotional support all the way through your loved one’s passing. You might decide to hire a caregiver to come to the home at night so you can get some sleep. Or a memory care center may be most appropriate.

Consider memory care. Ninety percent of families who have spent five or more years caring for a relative with dementia ultimately decide that long-term care in a memory care community is now the best choice. Think in terms of what will provide your relative with the best physical support and comfort. If you are exhausted, not getting any sleep, or are emotionally drained, the wisest and kindest decision might be for your loved one to be attended to in a memory care facility. The staff is trained in the care of people with dementia, including end-of-life care. They work in shifts so your loved one has a fresh team of support people several times a day. Especially if you live alone with your relative, you may realize that you’d rather be with them for emotional support but let professionals be responsible for addressing the needs of their failing body. You might also prefer that others are around at the time of death so you do not have to manage that by yourself.

Consider hospice. If you have not signed up for hospice already, it’s worth considering for the final stage. This form of home-based support is 100% paid for by Medicare. They do not offer 24/7 in-home caregivers. But you will have assistance from regular home visits by

• a nurse (to manage pain and any distressing symptoms)
• a nursing assistant to give baths two or three times a week
• a volunteer for a few hours a week to give you a break
• a social worker and chaplain as needed for emotional and spiritual support

The focus is on comfort care for patients who prefer a natural death over one with tubes and a lot of heroics. Quality of life—keeping the daily experience a positive one—takes priority over quantity of life. They pay attention to physical, emotional, and spiritual distress and support both the patient and the family members.

Some hospices also have inpatient facilities. If you decide that day-to-day care is more than you can do, look for a hospice in your community that has beds available. You and other family members can visit any time. Even spend the night. The staff are fully trained in end-of-life care. They manage pain and other symptoms. They also provide your loved one with food, bathing, and incontinence care. You get to be there simply as a family member with no responsibilities beyond your kind and loving presence.

Get support for end-of-life decisions. During the final stage, review your relative’s advance directive. It should give you a sense of what their wishes would be if they could speak for themselves. Difficult as these decisions are, most people feel better knowing they did their best to follow what their loved one would have wanted. If family is in disagreement, consider the assistance of an Aging Life Care Manager. They can help get everyone on the same page. They can also provide informed guidance concerning decisions about life support. If you are enrolled in hospice, a social worker can assist with a family meeting and also assist with decision making.

Funeral preparations. If you have the time and energy, it might be a good idea to start making funeral plans. It’s easier to do the preparatory work in the weeks or even months before the death. Trying to arrange for the disposition of the body and any ceremonies on short notice just adds avoidable stress to an already difficult time.

Reach out for spiritual support. If you are part of a faith community, now is an excellent time to talk with the leader of your congregation. You are likely to have many questions about the meaning and purpose of life, and why this process is as hard as it is. Faith leaders are faced with these questions regularly and can help you come to your own resolution. If you do not have a faith leader to turn to, hospice does provide a chaplain, free of charge, to families of their patients. These are faith leaders who are trained to assist even those of other faiths or no faiths. They won’t provide specific answers, but they are skilled in asking questions to help you find your own peace with the situation.

Reach out for emotional support. As a family caregiver, you have been through a very tough journey. If the emotions of the final stage feel overwhelming, reach out for professional help. An Aging Life Care Manager can help you find a counselor experienced in end-of-life issues. If you are signed up with hospice, you can request free visits from a social worker. You don’t have to shoulder this all by yourself.

Think about the final few days. Do you want to be present when the person you care for passes? Will it be too hard to have your relative die at your home? Where would be a good place? Who else would you like to have with you? While there may not be much by way of conversation with your loved one, there is a tender sweetness that frequently occurs as family members each recognize this is the last time to say things like “thank you,” “I love you,” “forgive me,” “I forgive you,” and then finally, “goodbye.”