Late-Stage Caregiving (2023)

The late stage of Alzheimer's disease may last from several weeks to several years. As the disease progresses, intensive, around-the-clock care is usually required.

What to expect

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As the disease advances, the needs of the person living with Alzheimer's will change and deepen. A person with late-stage Alzheimer's usually:

  • Has difficulty eating and swallowing
  • Needs assistance walking and eventually is unable to walk
  • Needs full-time help with personal care
  • Is vulnerable to infections, especially pneumonia

Your role as caregiver

During the late stages, your role as a caregiver focuses on preserving quality of life and dignity. Although a person in the late stage of Alzheimer's typically loses the ability to talk and express needs, research tells us that some core of the person's self may remain. This means you may be able to continue to connect throughout the late stage of the disease.

(Video) Caregiver Training: Communicating with a Client with Dementia (Late Stage) | CareAcademy

At this point in the disease, the world is primarily experienced through the senses. You can express your caring through touch, sound, sight, taste and smell. For example, try:

  • Playing his or her favorite music
  • Reading portions of books that have meaning for the person
  • Looking at old photos together
  • Preparing a favorite food
  • Rubbing lotion with a favorite scent into the skin
  • Brushing the person's hair
  • Sitting outside together on a nice day

Late-stage care options

Since care needs are extensive during the late stage, they may exceed what you can provide at home, even with additional assistance. This may mean moving the person into a facility in order to get the care needed.

(Video) Care of Late Stage Parkinson's Disease

Deciding on late-stage care can be one of the most difficult decisions families face. Families that have been through the process tell us that it is best to gather information and move forward, rather than second guessing decisions after the fact. There are many good ways to provide quality care. Remember, regardless of where the care takes place, the decision is about making sure the person receives the care needed.

At the end of life, another option is hospice. The underlying philosophy of hospice focuses on quality and dignity by providing comfort, care and support services for people with terminal illnesses and their families. To qualify for hospice benefits under Medicare, a physician must diagnosis the person with Alzheimer's disease as having less than six months to live.

Ideally, discussions about end-of-life care wishes should take place while the person with the dementia still has the capacity to make decisions and share wishes about life-sustaining treatment.

Learn more: Residential Care, Hospice Care and End-of-Life Decisions (PDF)

Food and fluids

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In this two-part program, "Living with Alzheimer's: For Caregivers: Late Stage," you’ll hear about resources, care and ways to engage in meaningful connections.

(Video) Caregiving For a Loved One With Late-Stage Dementia | LiveTalk | Being Patient

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One of the most important daily caregiving tasks during late-stage Alzheimer's is monitoring eating.As a person becomes less active, he or she will require less food. But, a person in this stage of the disease also may forget to eat or lose his or her appetite. Adding sugar to food and serving favorite foods may encourage eating; the doctor may even suggest supplements between meals to add calories if weight loss is a problem.

To help the person in late-stage Alzheimer's stay nourished, allow plenty of time for eating and try these tips:

  • Make sure the person is in a comfortable, upright position. To aid digestion, keep the person upright for 30 minutes after eating.
  • Adapt foods if swallowing is a problem. Choose soft foods that can be chewed and swallowed easily. Thicken liquids such as water, juice, milk and soup by adding cornstarch or unflavored gelatin. You can also buy food thickeners at a pharmacy or health care supply store, try adding pudding or ice cream, or substitute milk with plain yogurt.
  • Encourage self-feeding. Sometimes a person needs cues to get started. Begin by putting food on a spoon, gently putting his or her hand on the spoon, and guiding it to the person's mouth. Serve finger foods if the person has difficulty using utensils.
  • Assist the person with feeding, if needed. Alternate small bites with fluids. You may need to remind the person to chew or swallow. Make sure all food and fluid is swallowed before continuing on with the next bite.
  • Encourage fluids. The person may not always realize that he or she is thirsty and may forget to drink, which could lead to dehydration. If the person has trouble swallowing water, try fruit juice, gelatin, sherbet or soup. Always check the temperature of warm or hot liquids before serving them.
  • Monitor weight. While weight loss during the end of life is to be expected, it also may be a sign of inadequate nutrition, another illness or medication side effects. See the doctor to have weight loss evaluated.

Learn more: Food and Eating

Bowel and bladder function

Home Safety Checklist

Download, print and keep the checklist handy to prevent dangerous situations and help maximize the person living with dementia's independence for as long as possible.

(Video) Advanced Stage and End of Life Care

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Difficulty with toileting is very common at this stage in the disease. The person may need to be walked to the restroom and guided through the process. Incontinence is also common during late-stage Alzheimer's.

To maintain bowel and bladder function:

  • Set a toileting schedule. Keep a written record of when the person goes to the bathroom, and when and how much the person eats and drinks. This will help you track the person's natural routine, and then you can plan a schedule. If the person is not able to get to the toilet, use a bedside commode.
  • Limit liquids before bedtime. Limit — but do not eliminate — liquids at least two hours before bedtime. Be sure to provide adequate fluids for the person throughout the day to avoid dehydration.
  • Use absorbent and protective products. Adult disposable briefs and bed pads can serve as a backup at night.
  • Monitor bowel movements. It is not necessary for the person to have a bowel movement every day, but if there are three consecutive days without a bowel movement, he or she may be constipated. In such instances, it may help to add natural laxatives to the diet, such as prunes or fiber-rich foods (bran or whole-grain bread). Consult with the doctor if the constipation continues.

Learn more: Incontinence

Skin and body health

A person with late-stage Alzheimer’s disease can become bedridden or chair-bound. This inability to move around can cause skin breakdown, pressure sores and "freezing" of joints.


To keep skin and body healthy:

  • Relieve body pressure and improve circulation. Change the person’s position at least every two hours to relieve pressure and improve blood circulation. Make sure the person is comfortable and properly aligned. Use pillows to support arms and legs.
  • Learn how to lift the person. A care provider, such as a nurse or physical therapist, can provide instructions on how to properly lift and turn the person without causing injury. Make sure not to ever lift by pulling on the person's arms or shoulders.
  • Keep skin clean and dry. Since skin can tear or bruise easily, use gentle motions and avoid friction when cleaning. Wash with mild soap and blot dry. Check daily for rashes, sores or breakdowns.
  • Protect bony areas. Use pillows or pads to protect elbows, heels, hips and other bony areas. If you use skin moisturizer on these areas, apply it gently and do not massage it in.
  • Prevent “freezing” of joints. Joint “freezing” (limb contractures) can occur when a person is confined to a chair or bed. It’s sometimes helpful to do range-of-motion exercises, such as carefully moving the arms and legs two to three times a day while the skin and muscles are warm, like right after bathing. Consult with the doctor before starting these exercises.

Learn more: Bathing and Dressing and Grooming

Infections and pneumonia

The inability to move around during late-stage Alzheimer's disease can make a person more vulnerable to infections.

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To help prevent infections:

  • Keep the teeth and mouth clean. Good oral hygiene reduces the risk of bacteria in the mouth that can lead to pneumonia. Brush the person's teeth after each meal. If the person wears dentures, remove them and clean them every night. Also, use a soft toothbrush or moistened gauze pad to clean the gums, tongue and other soft mouth tissues.
  • Treat cuts and scrapes immediately. Clean cuts with warm soapy water and apply an antibiotic ointment. If the cut is deep, seek professional medical help.
  • Protect against flu and pneumonia. The flu (influenza) can lead to pneumonia (infection in the lungs). It's vital for the person with Alzheimer's as well as his or her caregivers to get flu vaccines every year to help reduce the risk. A person can also receive a vaccine every five years to guard against pneumococcal pneumonia (a severe lung infection caused by bacteria).

Pain and illness

Communicating pain becomes difficult in the late stages. If you suspect pain or illness, see a doctor as soon as possible to find the cause. In some cases, pain medication may be prescribed.

To recognize pain and illness:

  • Look for physical signs. Signs of pain and illness include pale skin tone; flushed skin tone; dry, pale gums; mouth sores; vomiting; feverish skin; or swelling of any part of the body.
  • Pay attention to nonverbal signs. Gestures, spoken sounds and facial expressions (wincing, for example) may signal pain or discomfort.
  • Be alert to changes in behavior. Anxiety, agitation, trembling, shouting and sleeping problems can all be signs of pain.​

FAQs

How long does late stage dementia usually last? ›

By the late stage, the symptoms of all types of dementia become very similar. The later stage of dementia tends to be the shortest. On average it lasts about one to two years.

What is the late stage? ›

Meaning of late-stage in English. late-stage. adjective [ before noun ] used to describe a time near the end of an organization's or product's development: The company has 157 drugs in development, including eight in late-stage development.

What is the most common in the late stage of dementia? ›

Late-stage Alzheimer's (severe)

In the final stage of the disease, dementia symptoms are severe. Individuals lose the ability to respond to their environment, to carry on a conversation and, eventually, to control movement. They may still say words or phrases, but communicating pain becomes difficult.

How do you know when a dementia patient is nearing the end? ›

Signs of the final stages of dementia include some of the following: Being unable to move around on one's own. Being unable to speak or make oneself understood. Eating problems such as difficulty swallowing.

What are signs that dementia is getting worse? ›

increasing confusion or poor judgment. greater memory loss, including a loss of events in the more distant past. needing assistance with tasks, such as getting dressed, bathing, and grooming. significant personality and behavior changes, often caused by agitation and unfounded suspicion.

What does late stage dementia look like? ›

Signs of late-stage dementia

speech limited to single words or phrases that may not make sense. having a limited understanding of what is being said to them. needing help with most everyday activities. eating less and having difficulties swallowing.

When should dementia patients go into care? ›

Generally, a senior with dementia should go into a care home if you're struggling to meet their needs and your mental and physical health as a caregiver are at risk. Importantly, the safety of your loved one should be a key factor in deciding whether it's time for memory care.

Why do dementia patients stop walking? ›

Dementia inhibits the ability to walk

Dementia can affect areas of the brain that are responsible for movement and balance. Many individuals affected by Alzheimer's and other types of dementia gradually lose the ability to walk and perform everyday tasks.

How long does dementia last before death? ›

Systematic review: In a PubMed literature review, we identified only one study that analyzed survival in a large, unscreened sample of people with incident dementia from routine care data. Interpretation: In people with dementia, median time until institutionalization was 3.9 years, and 5.0 years until death.

Do dementia patients do better at home? ›

Home care is often recommended by experts through end of life. However, every family and situation is different, so permanent home care may not always be possible. Research shows keeping a loved one with dementia at home helps them be happier and live longer; however, it is most impactful when introduced early.

At what stage do dementia patients forget family members? ›

Stage 6. In stage 6 of dementia, a person may start forgetting the names of close loved ones and have little memory of recent events. Communication is severely disabled and delusions, compulsions, anxiety, and agitation may occur.

What causes dementia patients to suddenly get worse? ›

Rapidly progressive dementias or RPDs are extremely rare, but can cause dementia to worsen over weeks and months. RPDs can be caused by complex medical conditions such as Autoimmune conditions, cancer, and neurodegenerative diseases – i.e diseases that damage the body's nervous systems.

How long does it take to go from Stage 6 to Stage 7 dementia? ›

Functional Assessment Staging Test (FAST)
StagePatient ConditionExpected Duration of Stage
Stage 6Moderately severe Alzheimer'sAverage duration of this stage is 3.5 months to 9.5 months.
Stage 7Severe Alzheimer'sAverage duration of this stage is 1 year to 1.5 years.
5 more rows
24 Apr 2020

Does a person with dementia know they are confused? ›

In the earlier stages, memory loss and confusion may be mild. The person with dementia may be aware of — and frustrated by — the changes taking place, such as difficulty recalling recent events, making decisions or processing what was said by others. In the later stages, memory loss becomes far more severe.

What hospice does not tell you? ›

Hospice providers are very honest and open, but hospice cannot tell you when the patient will die. This is not because they don't want to, it's because they can't always determine it.

What happens in the last 48 hours of life? ›

In the final hours of life, your loved one's body will begin to shut down. Their circulatory and pulmonary systems will slowly begin to fail. This may lead to falling body temperatures, but may also cause sudden outbursts. Your loved one will also experience greater difficulty interacting with the outside world.

What stage of dementia is dysphagia? ›

Dementia progresses differently in each person, so it can be difficult to know what to expect and when. However, dysphagia often presents in late-stage dementia patients who tend to have difficulty communicating and may even be nonverbal.

Does dementia affect walking? ›

Dementia is likely to have a big physical impact on the person in the later stages of the condition. They may gradually lose their ability to walk, stand or get themselves up from the chair or bed.

Do dementia patients eyes look different? ›

Many people with Alzheimer's disease have visual problems, such as changes in color vision, and past studies have shown retinal and other changes in their eyes.

What causes dementia to progress rapidly? ›

other long-term health problems – dementia tends to progress more quickly if the person is living with other conditions, such as heart disease, diabetes or high blood pressure, particularly if these are not well-managed.

How long does it take to go from Stage 6 to Stage 7 dementia? ›

Functional Assessment Staging Test (FAST)
StagePatient ConditionExpected Duration of Stage
Stage 6Moderately severe Alzheimer'sAverage duration of this stage is 3.5 months to 9.5 months.
Stage 7Severe Alzheimer'sAverage duration of this stage is 1 year to 1.5 years.
5 more rows
24 Apr 2020

How long does dementia last before death? ›

Systematic review: In a PubMed literature review, we identified only one study that analyzed survival in a large, unscreened sample of people with incident dementia from routine care data. Interpretation: In people with dementia, median time until institutionalization was 3.9 years, and 5.0 years until death.

How long can you live with Stage 6 dementia? ›

Stages of dementia life expectancy
StageExpected Duration of StageExpected Life Expectancy (years remaining)
Stage 5: Moderately severe cognitive decline1.5 years1.5 to 6.5 years
Stage 6: Severe cognitive decline2.5 years4 years or less
Stage 7: Very Severe cognitive decline1.5 to 2.5 years2.5 years or less
4 more rows

At what stage do dementia patients forget family members? ›

Stage 6. In stage 6 of dementia, a person may start forgetting the names of close loved ones and have little memory of recent events. Communication is severely disabled and delusions, compulsions, anxiety, and agitation may occur.

Do dementia patients do better at home? ›

Home care is often recommended by experts through end of life. However, every family and situation is different, so permanent home care may not always be possible. Research shows keeping a loved one with dementia at home helps them be happier and live longer; however, it is most impactful when introduced early.

Do end stage dementia patients sleep a lot? ›

Sleeping more and more is a common feature of later-stage dementia. As the disease progresses, the damage to a person's brain becomes more extensive and they gradually become weaker and frailer over time.

What causes dementia patients to suddenly get worse? ›

Rapidly progressive dementias or RPDs are extremely rare, but can cause dementia to worsen over weeks and months. RPDs can be caused by complex medical conditions such as Autoimmune conditions, cancer, and neurodegenerative diseases – i.e diseases that damage the body's nervous systems.

What hospice does not tell you? ›

Hospice providers are very honest and open, but hospice cannot tell you when the patient will die. This is not because they don't want to, it's because they can't always determine it.

What are the signs of last days of life? ›

End-of-Life Signs: The Final Days and Hours
  • Breathing difficulties. Patients may go long periods without breathing, followed by quick breaths. ...
  • Drop in body temperature and blood pressure. ...
  • Less desire for food or drink. ...
  • Changes in sleeping patterns. ...
  • Confusion or withdraw.

When is the right time to put a dementia patient in a home? ›

If a person's dementia has progressed far enough that they need more care and support than you can provide, it may be time for them to go into a care home. At this point, they may need 24-hour care. Dementia is progressive, meaning the person with the condition will require more care and support as time goes on.

What is the 7th stage of dementia? ›

Stage 7: Severe Dementia

Stage 7 is considered the final stage on the Global Deterioration Scale. At this stage, the person has lost all ability to speak or communicate effectively. The individual may utter a few words or phrases, but they will not likely relate to his or her current environment.

What stage of dementia is dysphagia? ›

Dementia progresses differently in each person, so it can be difficult to know what to expect and when. However, dysphagia often presents in late-stage dementia patients who tend to have difficulty communicating and may even be nonverbal.

What stage of dementia is hallucinations? ›

Hallucinations are caused by changes in the brain which, if they occur at all, usually happen in the middle or later stages of the dementia journey. Hallucinations are more common in dementia with Lewy bodies and Parkinson's dementia but they can also occur in Alzheimer's and other types of dementia.

Does a person with dementia know they are confused? ›

In the earlier stages, memory loss and confusion may be mild. The person with dementia may be aware of — and frustrated by — the changes taking place, such as difficulty recalling recent events, making decisions or processing what was said by others. In the later stages, memory loss becomes far more severe.

Does dementia affect walking? ›

Dementia is likely to have a big physical impact on the person in the later stages of the condition. They may gradually lose their ability to walk, stand or get themselves up from the chair or bed.

What goes on in the mind of a person with dementia? ›

Symptoms of dementia can include problems with planning and decision-making, language, and sometimes changes in mood or behaviour. These changes in mental abilities may be small to start with, but become more noticeable. It's important to know the difference between normal ageing and dementia.

Videos

1. Video about achieving dignity in end of life care
(Social Care Wales TV / Gofal Cymdeithasol Cymru)
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3. Parkinson's Disease Caregivers: You're Not Alone
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4. Late Stage Example 1
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5. Care in the Late Stage | Webinar
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6. Mid to Late Stage Alzheimer's Disease
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