The Last Days Of Life
Dying is an individual and unique experience: everyone will experience it in their way and have their own needs. However, when someone is approaching the end of their life, there are common characteristics and changes that help us to know when a person is dying.
If your relative is coming to the end of their life in a hospital or within a care home, you might want to consider any questions you have for the clinical or care staff looking after them. If your relative is at home, then you could speak with their GP or a district nurse.
The characteristics and changes that often take place when a person approaches the end of their life fall into four main categories:
- Reduced need for food and drink
- Withdrawing from the world
- Changes in breathing
- Becoming increasingly sleepy/unresponsive
We will look at how these four changes may appear, and suggest some ways to help the person be comfortable.
Different Types Of Dementia
Alzheimers Disease
Alzheimers is the most common form of dementia in the United States. Its also the leading cause of death among dementia patients. The National Institute on Aging claims Alzheimers is the sixth leading cause of death among Americans as a whole.
Alzheimers is characterized by a decline in cognitive function in elderly people. The onset can be between the ages of 30-60 years old, on average. It results from a loss in the connection between neurons in the brain. Symptoms include memory loss, strange behavior, and language complications.
Vascular Dementia
In anatomy, vascular has to do with the blood vessels. The term applies to anything that carries blood or oxygen through the body. Therefore, Vascular dementia is one of a blockage or lack of blood or oxygen to the brain.
If an aging person experiences a lack of blood flow for whatever reason, it can contribute to loss of brain function, resulting in dementia. A person with vascular dementia loses their normal thinking capacity and struggles with memory, disorientation, and physical numbness.
This type of dementia is the second most common type of dementia, but it is often left undiagnosed or misdiagnosed. Because its so misdiagnosed, it coincides with the other most common among dementia disorders with another type, called Lewy Body dementia.
Lewy Body Dementia
Frontotemporal Dementia
Advance Directive For Receiving Oral Food And Fluids In The Event Of Dementia By End Of Life Choices New York
From End of Life Choices New York:
The directive provides a means for those diagnosed with dementia, while still retaining their decision-making capacity, to limit assisted feeding by hand when they reach the final/terminal stage of the disease. This terminal stage can last for months or even years if the patient continues to receive assisted hand feeding and other life-prolonging care. <
The instructions in the directive become effective when the patients appointed health care agent, in concert with the primary care physician, agrees that the patient is now in the final stage of dementia and is unable to make treatment decisions or to self-feed.
Our document permits a patient, while still decisionally capable, to choose between: stopping all life-prolonging measures including assisted oral feedings, or limiting hand feeding to comfort-focused feeding regardless of weight loss or intake. Either choice would be implemented along with thorough palliative or hospice care.
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Common Early Symptoms Of Dementia
Different types of dementia can affect people differently, and everyone will experience symptoms in their own way.
However, there are some common early symptoms that may appear some time before a diagnosis of dementia. These include:
- memory loss
- difficulty concentrating
- finding it hard to carry out familiar daily tasks, such as getting confused over the correct change when shopping
- struggling to follow a conversation or find the right word
- being confused about time and place
- mood changes
These symptoms are often mild and may get worse only very gradually. It’s often termed “mild cognitive impairment” as the symptoms are not severe enough to be diagnosed as dementia.
You might not notice these symptoms if you have them, and family and friends may not notice or take them seriously for some time. In some people, these symptoms will remain the same and not worsen. But some people with MCI will go on to develop dementia.
Dementia is not a natural part of ageing. This is why it’s important to talk to a GP sooner rather than later if you’re worried about memory problems or other symptoms.
Life Expectancy And Treatment
About 10 15% of dementia cases are thought to be frontal lobe dementia, the disease affecting 1 in 5000 of the population. However in those under 65 it is believed to be 20 50% of cases. Onset of frontal lobe dementia is normally identified when the patient is between 45 and 65 years of age, although it has been seen in people aged 20 to 30 years of age. Only 10% of cases are identified in those 70 years and over.
The disease takes from three to ten years to progress, although there are instances of much shorter or longer times. The average life expectancy of a person diagnosed with frontal lobe dementia is eight years. Approximately 50% of deaths are as a result of pneumonia, following complications associated with inability of the person to move or care for themselves.
As with other forms of dementia there is no current cure for the disease, but there are a range of treatments that can help to manage and deal with the symptoms, and to help people to regain some of their lost functions.
These include drugs such as SSRI antidepressants to help control the symptoms like obsession, over-eating and depression. Antipsychotics may be given to address challenging and inappropriate behaviours. Psychological treatments such as cognitive stimulation and behavioural therapy can help maintain memory function address anxiety. Rehabilitative practices such as, occupational therapy, physiotherapy and speech therapy can help the brain to learn new ways to do things.
References:
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What You Can Do For Your Loved One
As an individual with dementia declines, you can help them by providing a loving and supportive presence. Sit with them. Hold their hand. Play music they enjoy.
One of the greatest gifts you can give your loved one is helping to get their affairs in order. Ensure that financial and healthcare powers of attorney are put in place, so you can make decisions when your loved one is no longer able. Look into funeral arrangements before you need them, so you dont need to make important decisions in a time of crisis.
Talk to your loved ones physician about the possibility of palliative care support in the home and hospice care when your loved one is ready.
An Overview Of Latestage Dementia
The patient reaching thisstage has probably suffered for a long time. Although they have family andloved ones who care for them from the beginning, the disease needs to betackled carefully now. At this stage, every day is a new trauma, and its like afresh goodbye to the brilliant, amazing and sparkling person that the suffereronce was. This stage can be incredibly straining for the carers, and they mayend up neglecting their own health needs.
Thereupon, experts recommendcaretakers to keep a keen eye at the changing actions of the patient. Behaviorssuch as rare talking and denial to recognize the nearest ones are the warningsigns that the patient is soon dying from dementia. To elaborate further, hereare four symptoms of late-stage dementia:
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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.
Tips For Managing Dementia End
Because individuals with advanced dementia will often have difficulty communicating, it is important that caregivers keep a close eye on their loved one for signs of pain or discomfort. These signs may include moaning or yelling, restlessness or an inability to sleep, grimacing, or sweating. This may also signal that its time to call hospice or a palliative care team to help with the pain management.
If an individual with end-stage dementia is having trouble sitting up without assistance, hospice can provide a hospital bed or other equipment to lift their head.
Perhaps the hardest thing for families is when a loved one with dementia is no longer able to eat or swallow. Because an individual with dementia is unable to understand the benefits of feeding tubes or IV drips, they will often be incredibly distressed and attempt to remove them, causing added pain and risk of infection. Instead, focusing on keeping the individual comfortable. Supporting them with mouth care to prevent their mouth from becoming dry will allow them to make their final transition in peace.
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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.
How A Woman’s Plan To Kill Herself Helped Her Family Grieve
Scholars have been tangling for years with the moral quandary of how to treat people like Margaret Bentley, who indicate, while cognitively intact, that they want to kill themselves when they reach the final stages of dementia.
In a recent issue of the Hastings Center Report, a prominent journal of bioethics, experts were asked to consider the story of the fictitious Mrs. F., a 75-year-old with advanced Alzheimer’s living at home with her husband and a rotating cast of caregivers. Early in the disease process, Mrs. F. had been “adamant” about not wanting to end up profoundly demented and dependent. She told her husband that when she could no longer recognize him or their two children, she wanted to stop all food and fluid until she died.
Part of what happens in a dementing illness is that the essential nature of the individual shifts.
Mrs. F.’s cognitive function “was beginning to wax and wane,” according to the description in the journal, when she finally decided it was time to stop eating. But occasionally she would forget her resolve she was, after all, suffering from a disease characterized by profound memory loss and would ask for food. When she did, her family reminded her of her previous decision.
But they were torn, as were the aides caring for her. Which Mrs. F. should they listen to: the one from before, who above all else did not want to become a mindless patient in a nursing home? Or the one from right now, who was hungry?
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Support For People With Dementia And Carers
UCL covid-19 decision aid – a tool to support carers of people living with dementia to make difficult decisions during covid-19
Alzheimers Society end of life care information for patients and families
Alzheimers Society information and fact sheets on all aspects of dementia including what is dementia, types of dementia and living well with dementia
Alzheimer Scotland specialist services for patients and carers
Dementia UK expert one-on-one advice and support to families living with dementia via Admiral Nurses
Different Diseases Different Pathways
Many dementia disorders are similar, but there are also dementia disorders that are very different from the others. It is therefore impossible to estimate how long a person can live with a dementia disorder. It depends on the individual disease.
When it comes to Alzheimers disease, it will ordinarily slowly become more serious over a number of years. It typically takes 7-10 years from the diagnosis until the person has severe dementia and eventually dies from the disease.
Vascular dementia is the second most prevalent form of dementia. How quickly vascular dementia develops varies widely.
A person who has developed dementia as a result of Huntingtons disease will typically have 15-20 years from the disease being diagnosed until they die of it.
If you have developed a dementia disorder due to drug or alcohol abuse, or have been subjected to toxic fumes, you could live with the disorder for many years without the symptoms worsening. In this case, it is not possible to say anything about how long a person can live with the disease.
Although it is possible to quantify how long people typically live with the most prevalent dementia disorders, you should bear in mind that the figures are an average. Some people die more quickly, while others live much longer. As scientists develop more effective treatments and medicines, it might be possible to live much longer with a dementia disorder.
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What Are The Signs And Symptoms Of Late Or Severe Dementia
- Worsening of symptoms seen in early and intermediate dementia
- Complete dependence on others for activities of daily living
- May be unable to walk or move from place to place unassisted
- Impairment of other movements such as swallowing: Increases risk of malnutrition, choking, and aspiration
- Complete loss of short- and long-term memory: May be unable to recognize even close relatives and friends
- Complications: Dehydration, malnutrition, problems with bladder control, infections, aspiration, seizures, pressure sores, injuries from accidents or falls
The person may not be aware of these problems, especially the behavior problems. This is especially true in the later stages of dementia.
Depression in elderly people can cause dementia-like symptoms. About 40% of people with dementia are also depressed. Common symptoms of depression include depressed mood, loss of interest in activities once enjoyed, withdrawal from others, sleep disturbances, weight gain or loss, suicidal thoughts, feelings of worthlessness, and loss of ability to think clearly or concentrate.
People with irreversible or untreated dementia present a slow, gradual decline in mental functions and movements over several years. Total dependence and death, often from infection, are the last stages.
When Should I Ask For Support
Supporting people with dementia at the end of their life requires a team approach. Often, there will be many people involved in the persons care at the end of their life. Good communication and information sharing helps to ensure the person receives the care they need.
If youre unsure about anything or have any concerns seek advice from a colleague, manager or another health care professional.
There may be certain professionals who can advise on specific issues. These may include a GP, district nurses, social workers, other care staff and specialists.
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What Symptoms Signal Late Stage Dementia
Dementia disorders are progressive, meaning they worsen with time. How fast each person changes has a lot to do with their individual health and the cause of their condition.
In the early stages of some progressive disorders, symptoms may vary. For example, people with Lewy body dementia may have more problems with movement and hallucinations than someone with Alzheimers, says the Alzheimers Association.
As the illnesses progress, they share more and more of the same kinds of symptoms. You can tell someone is in a later stage of a progressive brain disorder if they:
- have lost the ability to walk, eat, swallow, sit up, or move around
- need a wheelchair or stay in bed most of the time
What Are The Symptoms
Each person is unique and will experience dementia in their own way. The different types of dementia tend to affect people differently, especially in the early stages.
A person with dementia will often have cognitive symptoms . They will often have problems with some of the following:
- Day-to-day memory difficulty recalling events that happened recently.
- Repetition repeating the same question or conversation frequently in a short space of time.
- Concentrating, planning or organising difficulties making decisions, solving problems or carrying out a sequence of tasks .
- Language difficulties following a conversation or finding the right word for something.
- Visuospatial skills – problems judging distances and seeing objects in three dimensions.
- Orientation – losing track of the day or date, or becoming confused about where they are.
Some people have other symptoms including movement problems, hallucinations or behaviour changes.
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Support Their Cultural And Spiritual Needs
Its good to be aware of the persons cultural and spiritual needs and make sure these are respected and supported. You can make use of any advance care plans or documents, friends and family input and your knowledge of the person. Its important to try and meet these needs as much as possible, they are just as important as medical care.