Care In The Last Days Of Life With Dementia
We use the words dying or terminal to describe when a person is in the last few days or hours of life. Sometimes a death is sudden and unexpected. More often, though, a person shows signs that they are dying: it is important to recognise these and plan ahead. This section will help you to anticipate and manage symptoms, as well as provide some tips to help prepare family and loved ones through what is a highly emotional and uncertain time.
I dont want my mother to die alone. I want her to be comfortable and to die with dignity.
A daughter of a person with dementia.
What Does Best Practice Look Like Introducing The Priorities For Care Of The Dying Person
There are five priorities:
- Recognise: The possibility that a person may die within the next few days or hours is recognised and communicated clearly, decisions made and actions taken in accordance with the persons needs and wishes, and these are regularly reviewed and decisions revised accordingly. Always consider reversible causes, for example, infection, dehydration, hypercalcaemia.
- Communicate: Sensitive communication takes place between staff and the dying person, and those identified as important to them.
- Involve: The dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants.
- Support: The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible.
- Plan & Do: An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, coordinated and delivered with compassion.
Caring For A Person With Late
If you are caring at home for someone who is in the later stages of dementia the Aged Care Assessment Team can help with advice and referrals for all aspects of care. You can contact your nearest ACAT by calling the number listed in the Age Page of your telephone directory. Your doctor or hospital can also help you to contact your local ACAT.
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End Of Life Dementia Care And Covid
Older adults and people with serious underlying medical conditions are at higher risk for severe illness from COVID-19. Older adults also have the highest rates of dementia. Given the risks that older adults face from both COVID-19 and dementia, its important to understand how to protect yourself and your loved one. Find more information about dementia and COVID-19 from the CDC.
When a dementia like Alzheimers disease is first diagnosed, if everyone understands that there is no cure, then plans for the end of life can be made before thinking and speaking abilities fail and the person with Alzheimers can no longer legally complete documents like advance directives.
End-of-life care decisions are more complicated for caregivers if the dying person has not expressed the kind of care he or she would prefer. Someone newly diagnosed with Alzheimers disease might not be able to imagine the later stages of the disease.
Offer Touch And Human Contact
Sit with the person, hold their hand and talk to them as if they can still hear you. Hearing can be the last sense that a person loses at death. This shows that you care and shows respect. If family are at their loved ones bedside, stay with the person when the relative has a break, and again hold the persons hand.
The care team would need to plan how you can provide this kind of one-to-one support.
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Evidence That Life Expectancy Calculators For Dementia Actually Work
It turns out that the length of time a person has before needing full-time care, before moving into a care community, and before dying can all be predicted somewhat accurately. This information, though not definitive, can help families get a general understanding of how to plan for the future and what to expect as the disease progresses.
In a study conducted at the department of neurology in Columbia University, groups of people with mild Alzheimers were followed for 10 years and assessed semiannually. Data from these assessments were plugged into a complicated algorithm. The people studied were tested for the following:
Mental status score Cognition and function Motor skills Psychology and behavior Basic demographic information
Other experiments have yielded similar results. A University of Kentucky study analyzed the records of more than 1,200 people with dementia and found that it was possible to accurately predict their life expectancy. Researchers looked at many variables including family history and medical problems like high blood pressure and heart disease, and ultimately realized it came down to three things:
age when the first symptoms appeared gender how impaired someone was when diagnosis was first made
How Long Will A Person With Dementia Live For
Dementia is a life-limiting condition, but it is very difficult to know how long someone with dementia will live for. This depends on many factors.
If the person also has another life-limiting condition , it may be clearer how long they may live for and how they will die.
A person may die from another condition at any stage of having dementia. Because of this, they may die before their dementia symptoms become very advanced.
A person in the later stages of dementia may get worse slowly over many months. During this time they will usually:
- become more frail
- have more frequent falls or infections
- have problems eating, drinking and swallowing
- be more likely to need urgent medical care
- become less mobile
- sleep more
- talk less often.
A person in the later stages of dementia is likely to have a weak immune system. This means they have a higher risk of getting infections, which in some cases can last for a long time. One of the most common causes of death for people with dementia is pneumonia caused by an infection.
A person in the later stages of dementia may have symptoms that suggest that they are close to death, but can sometimes live with these symptoms for many months. This uncertainty makes it very difficult to plan and put things in place for the end of someones life.
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Stage : Mild Cognitive Impairment
Clear cognitive problems begin to manifest in stage 3. A few signs of stage 3 dementia include:
- Getting lost easily
- Noticeably poor performance at work
- Forgetting the names of family members and close friends
- Difficulty retaining information read in a book or passage
- Losing or misplacing important objects
- Difficulty concentrating
Patients often start to experience mild to moderate anxiety as these symptoms increasingly interfere with day to day life. Patients who may be in this stage of dementia are encouraged to have a clinical interview with a clinician for proper diagnosis.
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.
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Why Is Compassion & Choices Focused On Dying With Dementia
Consider these facts:
- One in two older adults now die with or from dementia.1
- People may live as long as 10 years after diagnosis.2
- Sixty percent of Americans with dementia end up in a nursing home or other care facility3 and often receive burdensome medical interventions.4
Most people dont realize that a failure to make care decisions in advance of a dementia diagnosis will likely prolong the length of time one has dementia, could prolong suffering and puts their families in the difficult decision of having to make heart wrenching care decisions.
Palliative Care In Advanced Dementia
- 1Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
- 2Center for Integrated Oncology Aachen Bonn Cologne Duesseldorf , Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
- 3Clinical Trials Center , Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
- 4Center for Health Services Research, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany
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Can You Die From Dementia
Dementia is usually considered a disorder affecting memory and is associated with aging. In the initial stages, this could be true. Loss of memory is one of the earliest signs of the disease.
However, according to experts, dementia is a fatal brain failure that needs to be taken seriously like other terminal diseases that kill a patient slowly. It is not just an ailment that is associated with the elderly.
Even though the distinction is not really known in the medical field and to the general public, it is something that needs to be considered when one has to be treated at the very end stage of the condition.
It is believed that the fact that people are misinformed and misguided about dementia, the end stage treatment is usually made very aggressive.
The disease progresses quite slowly and the fact that it affects so many people means that it should be taken seriously. Dementia is a collection or a consequence of different diseases like Alzheimers disease, vascular dementia, and Parkinsons disease. In later stages, you can tell the type of dementia that is affecting a certain patient.
The patient can have eating problems, pneumonia, fever, pain, and difficulty breathing, which are all caused by the failure of the brain. In the end, dementia involves so many other parts of the body.
It is important to appreciate that the brain is the engine of our bodies. It controls everything, including metabolism, gastrointestinal tract, the lungs, and even the heart.
What Was My Experience With My Dad
As I have shared in other places , my dad, Jim, had Alzheimerâs for about ten years. In retrospect, his doctors led us to believe that he had been suffering through early stages of the disease before it was recognized for what it was. During that period of uncertainty, I attributed his attitude and behavioral changes to his becoming crotchety and temperamental.
But, most relevantly, he was diagnosed with arterial blockages and colon cancer. We nursed him through a triple bypass operation and a colectomy. I say that to mention this: For his age, my dad was otherwise physically healthy when his Alzheimerâs was finally diagnosed.
When he underwent heart surgery, he was literally at deathâs door, and he could have expired at any moment. But having had the two surgical interventions, he lived through a full progression of the various stages of his dementia.
We noticed the locomotive and speech degeneration that is typical of Alzheimerâs. Indeed, there were several episodes when he developed blood clots, pneumonia, and urinary-tract infections. He contracted a severe respiratory virus at least once and had a gastro-intestinal bug on another occasion. Any of these events could have resulted in his death. And Jim came close to dying during a few of them.
But, he didnât.
He held on. He came back.
He went into hospice care at least five times. And four times recovered enough to go off hospice.
He lasted in this state for about ten days.
This was exasperating news.
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Impact On Families And Carers
In 2019, informal carers spent on average 5 hours per day providing care for people living with dementia. This can be overwhelming . Physical, emotional and financial pressures can cause great stress to families and carers, and support is required from the health, social, financial and legal systems. Fifty percent of the global cost of dementia is attributed to informal care.
Is Dementia Preventable
For preventing dementia, the CDCs recommendation is to live a healthy lifestyle. Eat healthy, organic foods and drink plenty of filtered water. Malnutrition has been shown to contribute to dementia risk.
Exercise regularly and make sure to keep moving your body to stabilize mood, optimal brain function, and keep your muscles & bones strong. Maintain healthy blood pressure and cholesterol if possible. Go outside and enjoy nature as this regulates the brain as well.
Its also recommended to engage in mindful activities that promote relaxation and decrease stress. Meditation, spiritual practices, or breathing exercises can help avoid stress in daily life .
Having a hobby that stimulates your brain is also a great prevention method. Reading, taking classes, learning new skills, and fulfilling recreational activities all challenge the brain to keep performing at its best.
Its most beneficial to start such healthy habits at an earlier age and continue it in your daily routine for a lifetime. You dont have to do everything perfectly, but a little bit of health-promoting tasks every day can keep you in ideal shape physically and mentally. Such habits have been shown to help prevent the onset of dementia.
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Stage : Mild Dementia
At this stage, individuals may start to become socially withdrawn and show changes in personality and mood. Denial of symptoms as a defense mechanism is commonly seen in stage 4. Behaviors to look for include:
- Difficulty remembering things about one’s personal history
- Difficulty recognizing faces and people
In stage 4 dementia, individuals have no trouble recognizing familiar faces or traveling to familiar locations. However, patients in this stage will often avoid challenging situations in order to hide symptoms or prevent stress or anxiety.
Life Expectancy By Stage Of The Disease
The average number of years a person lives with Alzheimers disease is about 10. Keep in mind, however, that theres a gap between when symptoms begin and when a diagnosis is actually sought. The first symptoms of Alzheimers diseaseforgetting names, misplacing items, difficulty concentrating at work or performing simple tasksarrive an average of almost three years before the diagnosis is made.
The scale most commonly used by health professionals for the stages of dementia is the Global Deterioration Scale , also called the Reisberg Scale. The table below shows a patients average life expectancy by the stage of dementia. These are averages based on studies of large numbers of Alzheimers patients.
|Life Expectancy By Stage of Alzheimers / Dementia|
|Stage 7: Very Severe Cognitive Decline||1.5 to 2.5 years||2.5 years or less|
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Duration Of Stages: How Long Do The Stage Of Alzheimers / Dementia Last
No two people with dementia experience the disease exactly the same way, and the rate of progression will vary by person and type of dementia. In addition, it is not uncommon for individuals to have mixed dementia, meaning they have more than one type. That said, there is a natural course of the disease, and over time the capabilities of all persons with dementia will worsen. Eventually, the ability to function goes away. Keep in mind that changes in the brain from dementia begin years before diagnosis, when there are no outward symptoms. This makes it difficult to know how much time a person has left, though there are ways to come close to knowing life expectancy.
|Life Expectancy by Dementia Type|
|2 to 8 years following pronounced symptoms|
Mild DementiaIn this early stage of dementia, an individual can function rather independently, and often is still able to drive and maintain a social life. Symptoms may be attributed to the normal process of aging. There might be slight lapses in memory, such as misplacing eyeglasses or having difficulty finding the right word. Other difficulties may include issues with planning, organizing, concentrating on tasks, or accomplishing tasks at work. This early stage of dementia, on average, lasts between 2 and 4 years.
Is Alzheimers A Terminal Illness
This question has a fair amount of subtlety. I have treated it at greater length HERE. But, suffice it to say that there are broad and narrow conceptions for what a âterminal illnessâ is.
On the broad conception, a terminal illness is merely one that reduces your life expectancy and that you will you will have at the time of your death. Alzheimerâs surely fits this general description.
On the narrow definition, a terminal illness is one that you are expected to die from very soon â maybe within twelve or twenty-four months. A person recently diagnosed with mild-cognitive impairment or early-stage Alzheimerâs may have eight to ten years to live. So, on this narrow definition, âAlzheimerâsâ â by itself â may not be a terminal illness. However, we could say that late-stage Alzheimerâs could plausibly be construed as a terminal illness. Because, by the time a person enters Alzheimerâs advanced, end, or late stage, it may well be that their life expectancy has been reduced to one or two years.
For a more in-depth discussion of this issue, click HERE.