Alzheimer’s disease affects every aspect of personality and behavior. Patients become forgetful. They struggle to talk, lose control of their emotions, and neglect basic tasks. By the time they enter late stage Alzheimer’s, they will no longer be able to function on their own. Whereas before they retained some limited autonomy, now patients depend entirely on their family. Motor skills become fatally compromised, placing even greater demands on caregivers. While there will still be moments of happiness, families must be prepared for the hard choices they face in order to ensure their loved one’s physical and emotional wellbeing.
Health takes a dramatic turn during the final stages of Alzheimer’s disease. Mind and body fade, leaving patients entirely dependent on loved ones and caretakers.
People gradually lose control over their body. Basic systems begin to fail, leaving them bed-bound and helpless.
Physical deterioration also weakens the immune system, putting patients at greater risk of infection. First is pneumonia, which patients develop due to their declining lung capacity. Second is sepsis, which occurs when small wounds become inflamed. Third are urinary tract infections (UTIs), a common side effect of incontinence.
Patients suffering late stage Alzheimer’s communicate in extremely simple terms. If they can talk, their thoughts will be limited to no more than six intelligible words. Most of the time, they will express themselves by grunting, laughing, or crying.
Accompanying this is a breakdown in the patient’s memory centers. They will not be able to remember anything for more than a few minutes, though distant recollections may surface occasionally. Basic information, such as the identity of their friends and family, will be inaccessible. Unable to comprehend what is going on, patients will need to be constantly reassured by their caregivers during every interaction.
Ensuring patients get enough to eat is a challenge in late stage Alzheimer’s. Many no longer respond to hunger and thirst cues, while others lose the ability to feed themselves. Reflexes like chewing and swallowing degrade to the point that food sometimes gets sucked into the lungs, causing them to choke.
Besides this, their digestive system is slowly shutting down, preventing them from absorbing nutrients. As a result, Patients resist eating and lose weight. Painful as it is to watch, little can be done. Altering their diet may increase appetite temporarily, but the underlying cause cannot be reversed.
The final phase of Alzheimer’s is physically and mentally demanding. If you decide to care for the patient at home, make sure you have help from family, friends, or a local home care agency. With the right plan and support, you can ensure your loved one spends their final days in peace and comfort.
While in earlier stages mobility was compromised, in late stage Alzheimer’s it disappears completely. A few patients may be able to support themselves on a walker, but most will wind up bedbound. To prevent sores and encourage circulation, they will need to be turned every two hours, day and night. Because they have little to no muscle control, you will need to bear their full weight whenever you move them. For your safety and theirs, keep these tips in mind.
If you are laying them on their back, tuck the pillows under their sides to prevent the patient from rolling off the bed. Then place another pillow under their feet to protect their heels.
If you are transferring a patient from one room to another, it is advised you use a wheelchair. Getting someone in and out of a chair can be difficult, but a few basic lifting techniques will help.
To get them back into bed:
To save your back, slide, push, and pull the patient whenever you can. To make the process easier, consider purchasing a transfer belt. It wraps around the patient and gives you better purchase when lifting.
Skin is the first and most important barrier to infection. Check it every time you move the patient. If you see any cuts or tears, treat them immediately with soap and water. Once they are clean, apply antibiotic ointment and cover it with a dry bandage. If you see any red areas, apply lotion and work it in with a gentle massage. Remember, any vigorous motion might damage the skin, so be careful and go slow.
Pressure points such as the knees, elbows, hips, and bottom are especially prone to sores, particularly if the patient has lost weight. Keep these healthy by moisturizing them every day. If you discover a red area, track its size by measuring it or circling it with a felt-tip pen. Prod the skin around it as well. If it feels mushy, a sore is forming. Do your best to keep their weight off it for the next few days.
Along with their skin, immobility also impacts the patient’s joints. Without regular movement, fluids cannot circulate, and muscles gradually shorten, leaving limbs stiff and frozen.
To keep joints supple, caregivers need to extend them through their full range of motion 2-3 times a day. Consult a doctor before starting anything. Though no specialized training is required, their professional guidance will give you a better understanding of your loved one’s condition and how to handle them.
As a rule, be gentle and go slowly. Never force a limb to move. Always stop when you meet resistance. Muscles are looser when they are warm, so if you are having trouble, try applying a heating pad.
Patients need to be bathed every 2-3 days, more if they have bowel and bladder issues. By the time they enter late stage Alzheimer’s, it is unlikely patients will be able to shower, even using a chair, so you will need to bathe them in bed. (If showering is still an option, you will still have to guide them through the process. Read Caring for Dementia for more advice.)
Alzheimer’s patients respond well to routine, so schedule baths at roughly the same time each day. You will need the following supplies.
If you are planning to get the patient out of bed afterwards, there is no need to worry about the sheets. You can dry them or change them once you are finished. To protect the mattress, however, you will need to buy a waterproof cover.
Before starting the bath, check the room temperature. It should be at least 68-74° F. Also, make sure the water is warm to the touch, but not hot.
It is a good idea to wash the sheets after every bath. Besides preventing dampness and chill, it also protects patients from mold.
Toileting routines change significantly during late stage Alzheimer’s. Earlier, patients were able to control their bowels to some extent. Now it falls to caregivers to keep them dry and clean.
Establish a bathroom schedule. If they can walk, escort them to the toilet every two hours. Help them undress and lower them onto the seat. If they have trouble sitting upright, you will have to stay with them. Otherwise, you can wait outside the door. After 10-15 minutes, check to see if they have produced anything. If they have, make sure they are thoroughly clean before dressing them.
Even with a bathroom schedule, it is likely at some point they will have an accident. Make sure you are prepared with adult diapers. Like all undergarments, they should fit snugly without gaps or pinching. However, if the patient is lying in bed, it is okay to open the diaper to let air circulate.
If the patient is bedbound, diapers are obviously a necessity. Check them every two hours. If there has been an accident, clean with soap and water. Because waste breaks down the perineal area, you will have to apply a barrier cream to keep them safe (e.g., glycerin).
To guard against nighttime accidents, buy a plastic mattress cover and only allow small amounts of liquids after dinner.
Lastly, keep track of their bowel movements. This not only makes your bathroom schedule more effective but will alert you if they are constipated. If they have not moved their bowels in 2-3 days, try getting them to eat high fiber foods such as split peas or avocado. If that does not work, consult a doctor.
A dry, dirty mouth is uncomfortable. Besides brushing their teeth, you will have to moisten their lips and tongue regularly throughout the day.
Like with bathing, it is best to make dental care a routine. Lay everything out ahead of time. Late stage Alzheimer’s patients cannot rinse and spit, so when brushing, lay them on their side to let water and toothpaste drip out their mouth. Ask them to open, but if they do not understand, do not try and force it. Instead, explain and demonstrate what you want until they follow along.
Brush gently with a soft bristle toothbrush. Use the smallest amount of toothpaste you can. Make sure you cover their teeth, gums, and tongue. If they wear dentures, check to see if they fit. If they do not, take them out.
Alzheimer’s patients do not produce much saliva, so offer them small sips of water every 20-30 minutes. Patients sometimes refuse to drink water, so be flexible. Tea, soup broth, popsicles, Jell-O, or fruit are great alternatives to fight dry mouth. In addition, a tiny blob of glycerin on the tongue will encourage saliva. To keep their lips from becoming dry and cracked, swab them with water or coat them with petroleum jelly. It is made of oil and wax, so it locks in moisture better than ChapStick.
Meals are a challenge during late stage Alzheimer’s. As mentioned earlier, patients have little interest in food, which makes it difficult to plan meals. Because they have trouble chewing and swallowing, foodstuffs often get drawn into their lungs and choking is a real hazard. Caregivers must therefore take an active role in mealtimes.
Like with other aspects of dementia care, meals should be a routine. Start by turning off any distractions, such as television or radio. Patients eat more when they can focus on their food.
Eating on their back is dangerous, so if patients are confined to bed, prop them into a sitting position and serve their food on a tray table. Soft foods are easiest to swallow, but whatever you make them, be sure it is something the patient is already familiar with. Otherwise, they might not eat.
For Alzheimer’s patients, eating is a slow, deliberate process, so do not rush them. They will need at least an hour, maybe more. Do everything you can to encourage self-feeding during meals. If they lack the coordination for a knife, fork, or spoon, switch to finger foods. Do not be afraid to invite guests to dine with you either. Patients generally eat more when they are with other people.
Patients might not react to food placed in front of them. Perhaps they do not recognize it or do not know how to proceed. If either of these are the case, there are ways to motivate them.
Make note of what foods the patient enjoys. But be aware their preferences may change as the disease progresses. They may develop a sudden taste for certain foods and lose interest just as suddenly. Experiment with different flavors, textures, and spices until you find something they like.
As the patient continues to decline, they will eventually lose the strength and wherewithal to feed themselves, at which point their caregiver must take over. When feeding by hand, there are a few ways to smooth the process.
Patients should remain upright for at least 30 minutes after every meal. If you are worried they are not getting enough food, add a snack in the morning or afternoon.
Because patients cannot alert you when their airway is blocked, it is important you remain alert to signs of choking.
Act quickly when you notice these behaviors. If the airway is only partially blocked, the patient may be able to clear it on their own. Otherwise, stand behind them and wrap your arms around their waist with your fist against their abdomen. Your thumb should be below their ribcage and above their navel. With your other hand, grab your fist and pull it upwards into their stomach, being careful not to squeeze their ribs. Repeat until the food is dislodged.
To reduce the risk of choking or aspirating, thicken foods by adding corn starch or unflavored gelatin. You can also buy food thickeners online or through your local pharmacy. Some health food stores carry them as well.
It is a mistake to assume that because language skills have declined, patients cannot communicate. Despite their condition, they are aware of their surroundings in the moment and can express their feelings, though not in a straightforward manner.
The way you talk says a lot. A friendly and familiar tone tells patients you are someone they can trust. At this stage, memories are so fleeting everyone is a stranger. No matter how long you have known them, every time you walk in, they are meeting you for the first time. Make sure your words set them at ease.
Other tips for successful communication:
Despite your best efforts, Alzheimer’s patients will occasionally become hostile for reasons you will not understand. When this happens, the best thing to do is leave. Wait just outside the door, where you can keep an eye on them, then come back after a few minutes and introduce yourself. There is a good chance they will have forgotten what happened and you can proceed as planned.
Late stage Alzheimer’s patients communicate with nonverbal signals. Watch their expression, pay attention to their gestures, and listen to the sounds they make. Instead of words, they often moan, grunt, or laugh. If you cannot figure out what they want, encourage them to point. Alternately, you can point and judge their reaction.
Do not correct a patient if they get confused. For example, they might mistake their son for their husband. When this happens, play along. You are unlikely to win an argument with an Alzheimer’s patient and pointing out their mistake will only embarrass them. Rather, humor them and either change the subject or distract them with an activity.
This is especially true if they ask about someone who has died. The truth is going to be hard on them. Alzheimer’s patients can still grieve, but they cannot move on. After a few minutes they will forget and ask again. If you persist in telling them the truth, you will force them to relive their grief at its most painful. For this reason, it is better to tell them everything is fine.
The Amygdala, the emotional center of our brain, is one of the last regions affected by Alzheimer’s disease. Which means, even at this late stage, patients have not lost their capacity for love, joy, and gratitude. Though much about them has changed, they can still take pleasure in small acts of kindness.
For Alzheimer’s patients, cut off from their memories and higher functions, happiness comes through their senses, what they can see, hear, touch, etc. Engaging with them this way not only draws you closer, but also slows the progress of their disease. Patients left alone quickly enter terminal decline, while patients who are kept active hold out much longer. Caregivers benefit too. It is a chance to create comforting memories to think back on after their loved one is gone.
There are many ways to connect during late stage Alzheimer’s. Each sense triggers a different part of the brain, so stimulate as many as you can over the course of the day. Take your cues from the patient in order to determine which activities are most effective. Be aware that Alzheimer’s patients have short attention spans, so it is best to have several ready.
Alzheimer’s patients enjoy nature, so take them on a walk or sit with them at the park.
Look through old photo albums. Reminiscing might trigger a distant memory.
Show them some of their favorite movies or television shows from before they got sick. Alzheimer’s patients also enjoy videos of children or animals.
Bring in a coloring book and crayons for them to play with. Or an oversized puzzle. Fitting the pieces together lets them experiment with colors and shapes.
Smell is the sense most strongly connected to memory. With this in mind, inspire them with scents from their past: baked bread, rose petals, cinnamon, cookies, bubble gum, fresh-cut wood, etc. Many patients also react well to air fresheners with new car smell. It takes them back to when they could drive.
Alzheimer’s patients enjoy soft music, especially if it is a familiar tune. Give them some simple instruments, like tambourines or maracas, and encourage them to play along.
Conversation is difficult, but patients do enjoy hearing about their family and friends. You can also read them one of their favorite stories. Sometimes, it is not what you say, but the tone of your voice that is most soothing.
Human touch is powerful and comforting. Holding their hand, brushing their hair, or massaging their feet are great ways to show you care in a way they will understand.
Alzheimer’s patients also enjoy playing with different textures. Clay and Play-Doh are great, anything they can mold with their hands. Buckets with different sized objects – some hard, some soft, some squishy – are fun to explore. Hand them cool objects and warm objects, heated stones for example. Furs, fuzzy toys, or stuffed animals are great options too.
Alzheimer’s patients do not eat much, but still savor the taste of their favorite foods. Even if they won’t eat it, swabbing a little around their mouth might perk them up.
Muscle coordination is poor by this stage, but Alzheimer’s patients can sometimes perform simple tasks. Folding laundry, sorting silverware, and unraveling knots are great ways to pass the time and keep them stimulated.
When caring for another person, it is assumed their needs come first and yours come second. In reality, the opposite is true. If you want to take care of someone, you need to start by taking care of yourself. Alzheimer’s patients depend on their caregiver’s mental, emotional, and physical health. If they suffer, so does the patient.
Caregiving is not only selfless, but deeply rewarding. It creates a strong, meaningful bond that brings greater self-esteem and value to a person’s life.
At the same time, it requires great sacrifice. Besides the physical demands, devoting so much time to one person takes a toll on a caregiver’s other relationships: friends, family, work, etc. Caregivers often feel isolated, cut off from their normal support structure. On top of this, the course of late stage Alzheimer’s is unpredictable. Behavior changes without any warning, which can put caregivers on edge. Together, these can seriously undermine the caregiver’s well-being. If they do not monitor their health, they may wind up at greater risk of high blood pressure, diabetes, and heart disease. If you experience any of the following, it is a sign you are pushing yourself too far.
You need your strength to be strong for someone else. Far from being wrong, looking after yourself is the only way to give your loved one the care they need.
Friends and family are the key to self-care. They have seen firsthand how much the patient has changed and understand the difficulty you are facing. However, too often caregivers are reluctant to reach out and ask for help. Maybe they feel embarrassed, like they are admitting failure, or assume no one has the time. These fears are generally misplaced. With few exceptions, people are happy to help. What’s more, they are usually just as concerned, if not more concerned, about the caregiver as they are about the patient. Far from viewing them as selfish, they are surprised the caregiver did not ask sooner.
Similar to other aspects of Alzheimer’s, the only way to manage stress is to plan ahead. The better prepared you are, the better you will fare.
Above all, take each day one at a time. Focus on problems as they arise, taking small steps to keep your mind and body strong whenever you can. Never forget what you are doing is hard, so celebrate the good days and congratulate yourself for a job well done.
Agencies that provide in home care for seniors are another frequently overlooked resource. They are staffed by professional caregivers, trained to work with older adults. Though not qualified to give medical aid, they can assist with the daily activities of living, such as grooming, bathing, and eating. Like friends and family, they save you time, reduce stress, and help avoid injury when moving or turning the patient. Flexible, affordable, and reliable, you can call on them for almost any type of personal care.
Late stage Alzheimer’s places a heavy burden on family caregivers. Even if they balance their duties and responsibilities, their loved one’s medical needs may grow too complex for them to look after. It is not unusual for patients to develop multiple complications, even multiple illnesses, over the course of the disease. Personal hygiene, transfer requirements, and basic safety grow more onerous too. When caregivers find their abilities becoming overstretched, it is time to consider assisted living.
Most families are uncomfortable entrusting their loved one to a senior living community. We want to keep our loved ones safe. But this is the reason why residential care is so often the right choice. It allows patients to age comfortably in place, attended by experienced staff members who understand the disease process. Residential care homes like Verona Court are designed for elderly residents with severe health and memory issues. These types of continuing care retirement communities have no more than six residents, which means the staff can care for each person individually throughout the day. Administrators have access to a broad array of medical services, administered in the home by visiting doctors. Families are kept up to date on their loved one’s condition and are free to spend time with them in a positive, relaxing environment.
The choice of assisted living is occasionally perceived as a failure. But we cannot fail our family by taking care of them. If our goal is their well-being, then we ought to ask for help when we cannot manage. Any situation that improves quality of life is a success.
Alzheimer’s is a degenerative disease. It can be slowed, but not stopped. Eventually, families will need to decide how to comfort them during their final decline. Hospice, which treats the symptoms of terminal illness, is normally the first choice. Its objective is to alleviate pain and suffering, so the patient can pass peacefully. Resources to combat the most painful symptoms (e.g., pain, air hunger) are readily available and workers on call 24-hours a day if there is a crisis. The service even supplies health aides to assist with the patient’s personal care.
Families should monitor their loved one’s health, informing their doctor about any major changes. When it is estimated the disease will run its course in six months or less, hospice is a resource families can draw on. Hospice teams move quickly. A registered nurse will contact the family within a few hours to develop a care plan and the patient will begin receiving treatment shortly afterwards. Though the service is available to patients in senior assisted living facilities, patients can receive hospice care at home, if their families would prefer to keep them close.
The needs of Alzheimer’s patients change considerably during the final stages of the disease. Their physical and mental decline accelerates, leaving them dependent on their caregivers. Patients have to be monitored round the clock, with family members watching their own health to guard against burnout and exhaustion.
But regardless of the difficulties, there will still be bright and welcome moments. Even in late stage Alzheimer’s, it is possible to express your feelings and create happy memories to hold onto after the disease has reached its end.
Parentis Health works with patients and families during all stages of Alzheimer’s disease. We understand its process and symptoms and are dedicated to providing everyone suffering with the highest possible quality of life.
Jose Escobar is the Hospice Executive for Parentis Health. He works with patients and families across Southern California, providing support and education, in order to alleviate the pain and suffering of chronic and terminal illness.