Dying From Dementia With Late
The death of your loved one can be a hard concept to wrap your head around and accept. But knowing what to expect can help you when your loved one has late-stage dementia. It might help to know what will happen in the future so that you can be prepared emotionally and logistically.
This article discusses how dementia progresses and what to expect during late-stage dementia.
Racial And Ethnic Differences In The Prevalence Of Alzheimer’s And Other Dementias
Although there are more non-Hispanic whites living with Alzheimer’s and other dementias than any other racial or ethnic group in the United States , older black/African Americans and Hispanics/Latinos are disproportionately more likely than older whites to have Alzheimer’s or other dementias., , – Most studies indicate that older black/African Americans are about twice as likely to have Alzheimer’s or other dementias as older whites., , Some studies indicate older Hispanics/Latinos are about one and one-half times as likely to have Alzheimer’s or other dementias as older whites.,, , However, Hispanics/Latinos comprise a very diverse group in terms of cultural history, genetic ancestry and health profiles, and there is evidence that prevalence may differ from one specific Hispanic/Latino ethnic group to another .,
There is evidence that missed diagnoses of Alzheimer’s and other dementias are more common among older black/African Americans and Hispanics/Latinos than among older whites., Based on data for Medicare beneficiaries age 65 and older, it has been estimated that Alzheimer’s or another dementia had been diagnosed in 10.3% of whites, 12.2% of Hispanics/Latinos and 13.8% of black/African Americans. Although rates of diagnosis were higher among black/African Americans than among whites, according to prevalence studies that detect all people who have dementia irrespective of their use of the health care system, the rates should be even higher for black/African Americans.
What Causes Alzheimers Disease
In recent years, scientists have made tremendous progress in better understanding Alzheimers and the momentum continues to grow. Still, scientists dont yet fully understand what causes Alzheimers disease in most people. In people with early-onset Alzheimers, a genetic mutation may be the cause. Late-onset Alzheimers arises from a complex series of brain changes that may occur over decades. The causes probably include a combination of genetic, environmental, and lifestyle factors. The importance of any one of these factors in increasing or decreasing the risk of developing Alzheimers may differ from person to person.
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What To Expect At The End Of Life
The way people with Alzheimerâs disease die is different from person to person, but thereâs a basic pattern to the process. They slowly lose the ability to control basic body functions, such as eating, drinking, and toileting. After a while, their body shuts down.
They canât move much on their own. They donât want to eat or drink, and they lose weight. They often get seriously dehydrated. It can get hard for them to cough up fluid from their chest. In the last stages, many people with dementia get pneumonia.
Some other common signs that someone with Alzheimerâs disease is close to the end of their life include:
- They speak very few or no words.
- Theyâre not able to do very basic activities such as eat, move from a bed to a chair, or change their position in a bed or chair.
- They canât swallow well.
- They get sores because they sit or lie in the same position for too long. These are called bedsores or pressure ulcers.
Differences Between Women And Men In The Prevalence And Risk Of Alzheimer’s And Other Dementias
More women than men have Alzheimer’s or other dementias. Almost two-thirds of Americans with Alzheimer’s are women., Of the 5.8 million people age 65 and older with Alzheimer’s in the United States, 3.6 million are women and 2.2 million are men., Based on estimates from ADAMS, among people age 71 and older, 16% of women have Alzheimer’s or other dementias compared with 11% of men.
The prevailing reason that has been stated for the higher prevalence of Alzheimer’s and other dementias in women is that women live longer than men on average, and older age is the greatest risk factor for Alzheimer’s.- But when it comes to differences in the actual risk of developing Alzheimer’s or other dementias for men and women of the same age, findings have been mixed. Most studies of incidence in the United States have found no significant difference between men and women in the proportion who develop Alzheimer’s or other dementias at any given age., , – However, some European studies have reported a higher incidence among women at older ages,, and one study from the United Kingdom reported higher incidence for men. Differences in the risk of dementia between men and women may therefore depend on age and/or geographic region.,
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Each Persons Journey Is Different
Each person has a unique health history. This health history is directly related to how AD will affect them. Its helpful, however, to know the statistics about average life expectancy, as well as how lifestyle and age can alter that length of time.
If you are a caretaker or were recently diagnosed with AD, you can find empowerment and courage in knowing how the condition tends to progress. This allows you to plan with your family and caretakers.
Common Complications Of Alzheimers Disease That Cause Death
A lack of self-awareness and self-care, prolonged confinement to a bed, feeding failure, inability to receive proper nutrition and dehydration are all factors in the development of other life-threatening health conditions in dementia patients. While brain damage associated with AD is the driving force behind the patients cognitive decline and incapacitation, these secondary illnesses and conditions are ultimately responsible for causing the patients physical decline and death.
Complications of Alzheimers disease are commonly cited as such on death certificates. Because of this, deaths with a primary cause of AD and related dementias are seriously underreported. This is especially true since dementia can go unnoticed as it progresses slowly over the course of many years. Furthermore, a significant number of patients never receive an official neurological diagnosis while alive or after they have died.
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Stage : Moderately Severe Decline
Some independence and functionality remain intact, such as bathing and using the bathroom independently, but may require assistance dressing appropriately. They are still able to recognize and converse with close family members and friends. Many people require assistance with tasks of daily living because of significant confusion.
What Goes On Medically
Medically, what goes on depends on which of the three possibilities obtains.
Suppose that the Alzheimerâs patient passes from a secondary condition. Then the medical cause of death will depend on the particulars of that condition. So, suppose that an immobile Alzheimerâs patient develops a blood clot in his or her calf. Doctors will try to treat the clot by using blood thinners. But, if the clot breaks loose a person can die any or three ways. Firstly, the clot could block an artery. This may happen any number of places, but it is most dangerous around the lungs. Called a âpulmonary embolism,â a blood clot near the lungs can cut off oxygen to the body and brain. Secondly, the clot could cause the person to go into cardiac arrest. If the clot passages into the heart, the heartâs pumping may become erratic and fatal arrhythmias may develop. Thirdly, the clot could go towards the brain, block an artery there, and cause a fatal stroke.
If a person develops pneumonia, then the main risk is that of infection. Pneumonia is characterized by a personâs having âfluid-filledâ sacs in the lungs. In the first place, the fluid impedes the lungâs ability to pass oxygen into the blood stream. But the fluid is also a breeding ground for bacteria. This bacteria can make its way into the blood, travel around to other organs, and cause a massive, whole-body infection that a person is unlikely to recover from.
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What Is The Burden Of Alzheimers Disease In The United States
- Alzheimers disease is one of the top 10 leading causes of death in the United States.2
- The 6th leading cause of death among US adults.
- The 5th leading cause of death among adults aged 65 years or older.3
In 2020, an estimated 5.8 million Americans aged 65 years or older had Alzheimers disease.1 This number is projected to nearly triple to 14 million people by 2060.1
In 2010, the costs of treating Alzheimers disease were projected to fall between $159 and $215 billion.4 By 2040, these costs are projected to jump to between $379 and more than $500 billion annually.4
Death rates for Alzheimers disease are increasing, unlike heart disease and cancer death rates that are on the decline.5 Dementia, including Alzheimers disease, has been shown to be under-reported in death certificates and therefore the proportion of older people who die from Alzheimers may be considerably higher.6
Overview Of Alzheimer’s Disease
Alzheimer’s disease is a type of brain disease, just as coronary artery disease is a type of heart disease. It is also a degenerative disease, meaning that it becomes worse with time. Alzheimer’s disease is thought to begin 20 years or more before symptoms arise,- with changes in the brain that are unnoticeable to the person affected. Only after years of brain changes do individuals experience noticeable symptoms such as memory loss and language problems. Symptoms occur because nerve cells in parts of the brain involved in thinking, learning and memory have been damaged or destroyed. As the disease progresses, neurons in other parts of the brain are damaged or destroyed. Eventually, nerve cells in parts of the brain that enable a person to carry out basic bodily functions, such as walking and swallowing, are affected. Individuals become bed-bound and require around-the-clock care. Alzheimer’s disease is ultimately fatal.
How Does Alzheimers Disease Affect The Brain
The brain typically shrinks to some degree in healthy aging but, surprisingly, does not lose neurons in large numbers. In Alzheimers disease, however, damage is widespread, as many neurons stop functioning, lose connections with other neurons, and die. Alzheimers disrupts processes vital to neurons and their networks, including communication, metabolism, and repair.
At first, Alzheimers disease typically destroys neurons and their connections in parts of the brain involved in memory, including the entorhinal cortex and hippocampus. It later affects areas in the cerebral cortex responsible for language, reasoning, and social behavior. Eventually, many other areas of the brain are damaged. Over time, a person with Alzheimers gradually loses his or her ability to live and function independently. Ultimately, the disease is fatal.
Avoidable Use Of Health Care And Long
6.5.1 Preventable hospitalizations
Preventable hospitalizations are one common measure of health care quality. Preventable hospitalizations are hospitalizations for conditions that could have been avoided with better access to, or quality of, preventive and primary care. Unplanned hospital readmissions within 30 days are another type of hospitalization that potentially could have been avoided with appropriate post-discharge care. In 2013, 21% of hospitalizations for fee-for-service Medicare enrollees with Alzheimer’s or other dementias were either for unplanned readmissions within 30 days or for an ambulatory care sensitive condition . The total cost to Medicare of these potentially preventable hospitalizations was $4.7 billion . Of people with dementia who had at least one hospitalization, 18% were readmitted within 30 days. Of those who were readmitted within 30 days, 27% were readmitted two or more times. Ten percent of Medicare enrollees had at least one hospitalization for an ambulatory care-sensitive condition, and 14% of total hospitalizations for Medicare enrollees with Alzheimer’s or other dementias were for ambulatory care sensitive conditions.
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How Alzheimer’s Disease Is Treated
There’s currently no cure for Alzheimer’s disease, but medicines are available that can help relieve some of the symptoms.
Various other types of support are also available to help people with Alzheimer’s live as independently as possible, such as making changes to your home environment so it’s easier to move around and remember daily tasks.
Psychological treatments such as cognitive stimulation therapy may also be offered to help support your memory, problem solving skills and language ability.
Read more about treating Alzheimer’s disease.
Possible Causes Of Death
With some diseases, you end up dying not from the disease itself, but from a complication related to the disease. This is true for dementia. Many people with dementia ultimately die from a complication of the disease. These include:
- Pneumonia: This is one of the biggest reasons why a person with dementia dies. They ultimately develop inflamed, infected lungs, which may be filled with fluid.
- Falls: Falling can be deadly for a senior citizen. Dementia can affect your balance and your ability to walk, so it’s not uncommon to see people with dementia struggling to stand up.
- Choking: Some dementia patients develop a form of pneumonia where food goes down the wrong tube. During the late stages of dementia, they may have trouble swallowing.
- Suicide: During the early stages of dementia, especially in the time immediately following a diagnosis, there may be an increased risk of suicide. Know that depression is an early sign of dementia.
- Bedsores: Prolonged pressure on a certain part of your body can create sores. In late-stage dementia, patients can find it hard to move or get out of bed, leading to bedsores.
- Stroke: This is one of the leading causes of death in the U.S. In some cases, dementia can make the brain bleed, which increases the risk of stroke.
- Heart Attack: Having dementia may also increase the risk of having a heart attack. As with a stroke, the patient’s heart needs to be monitored to prevent a heart attack before it happens.
How Long Until Death?
What Can I Do?
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Advance Directives For Alzheimers / Dementia
Three advance directives have been developed in the U.S. to provide a measure of control to those suffering from the illness, with the aim to help you make your intentions known in case you are no longer able to communicate.
Disclaimer: Death with Dignity National Center has not endorsed any specific advance directive for Alzheimers / dementia information provided on this page is provided strictly for educational purposes.
What Is Known About Alzheimers Disease
Scientists do not yet fully understand what causes Alzheimers disease. There likely is not a single cause but rather several factors that can affect each person differently.
- Age is the best known risk factor for Alzheimers disease.
- Family historyresearchers believe that genetics may play a role in developing Alzheimers disease. However, genes do not equal destiny. A healthy lifestyle may help reduce your risk of developing Alzheimers disease. Two large, long term studies indicate that adequate physical activity, a nutritious diet, limited alcohol consumption, and not smoking may help people. To learn more about the study, you can listen to a short podcast.
- Changes in the brain can begin years before the first symptoms appear.
- Researchers are studying whether education, diet, and environment play a role in developing Alzheimers disease.
- There is growing scientific evidence that healthy behaviors, which have been shown to prevent cancer, diabetes, and heart disease, may also reduce risk for subjective cognitive decline. Heres 8 ways.
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When The Care Home Nurses Led Her To The Piano She Stared At It Blankly Put Her Hands On The Keys And Stopped And Then Stared Off Into Space Disinterested In The Thing That Had Given Her So Much Joy Her Whole Life
They say the disease takes a big downward step and then stabilizes, but that those periods of stability get shorter and shorter. That was the case in February. When we would come visit, her face would light up Hi, Poepie, she would say to me, even when she had lost all her other words. But one day in late February, my sister found her sitting alone in her room, staring vacantly and unresponsive. Nothing my sister did elicited a response. It was the first wakeup call of many for us. The next day, it was back to normal. My mother was her oldalbeit post-Alzheimersself, smiling and responding with yes, no, nods and shakes of the head.
Health Environmental And Lifestyle Factors
Research suggests that a host of factors beyond genetics may play a role in the development and course of Alzheimers. There is a great deal of interest, for example, in the relationship between cognitive decline and vascular conditions such as heart disease, stroke, and high blood pressure, as well as conditions such as diabetes and obesity. Ongoing research will help us understand whether and how reducing risk factors for these conditions may also reduce the risk of Alzheimers.
A nutritious diet, physical activity, social engagement, and mentally stimulating pursuits have all been associated with helping people stay healthy as they age. These factors might also help reduce the risk of cognitive decline and Alzheimers. Researchers are testing some of these possibilities in clinical trials.
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Legal Force Of Alzheimers / Dementia Advance Directives
Alzheimers directives are documents which help the patients family and caregivers know their preferences for healthcare. They may not be legally binding outside the states where they were developed, and in most cases their legality or whether theyre legally binding has not been tested within those states either.
Our best advice is to have your directive witnessed and notarized, and to share it with family and caregivers in order to let them know your preferences.