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Is Dementia A Terminal Illness

What Are Vascular Dementia Symptoms

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The symptoms of vascular dementia may vary. It will totally depend on the part of the brain that does not receive enough blood. These symptoms may sometimes overlap with other types of dementia.

Several studies report that many people with cognitive deficits directly correlated to vascular dementia also have Alzheimers disease. Vascular cognitive impairment is the hallmark of this disease.

Among the most common symptoms, we can find the following:

The presentation of these symptoms may be very variable. They can go on noticeable steps, or they can progress gradually. There is no certainty with this disease as it can overlap with other degenerative diseases of the brain.

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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.

How Does Dementia Kill You

Dementia is not a specific disease rather it refers to a series of various symptoms, which take place from damages in human brain and it typically results in memory loss. Alzheimers disease, known as its common form, dementia combined with Lewy bodies, vascular dementia, advanced dementia and frontotemporal dementia are all of the different types of dementia problem.

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Administrative Regulations And Access To Palliative Care

Lack of access to palliative care was identified in our review as the primary barrier to implementing palliative care for people with dementia. Lack of access to palliative care reflected an administrative or policy deficit in the structure of the healthcare system . Increased attention has been paid more recently to regulations and resource shortages. One of the reasons mentioned was the lack of advance directives, reported as a barrier across time. These administrative and policy issues were global in nature and reported in Europe and North America .

While hospitals were and remain oriented towards the treatment of acute illnesses, hospital staff often attribute hospital admission of patients with dementia as a reluctance of primary care and NHs providers to take responsibility for the care of deteriorating patients. On the other hand, primary and home care staff transfer patients to acute care hospitals due to a lack of resources necessary for caring for these sicker patients, and sometimes because of pressure from family caregivers. Hospital staff tends to focus on the here and now, often neglecting future implications, while patients are repeatedly re-admitted due to an ongoing chronic gradual decline .

How Does A Person Die From Dementia

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Can dementia kill? Alzheimer’s disease doesnt just make you forgetful. Its a serious, progressive condition which is, eventually, terminal. Alzheimers and other forms of dementia have now overtaken heart disease to become the leading cause of death in England and Wales.

The brain is responsible for more than thought, memory and understanding. It controls our bodily systems including breathing, circulation and digestion. Alzheimers kills cells in the brain. This damage initially leads to problems remembering things and communicating effectively. However, with time the brain damage affects the whole body, leading to death. This can be from a number of causes:

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How Long Will Someone With A Terminal Illness Live

People with a terminal illness may live for days, weeks, months or sometimes years. It can be difficult for doctors to predict how long someone will live for. This can depend on their diagnosis and any treatments they may be receiving.

No two experiences of a terminal illness are the same. Sometimes, a persons condition will gradually get worse as the illness progresses. Other people may find that they have times when they feel better and times when they feel worse at different points during their illness.

If youre unsure whether an illness is terminal or what a diagnosis means, speak to your doctor or nurse.

Early And Middle Stages Of Vascular Dementia

Some symptoms may be similar to those of other types of dementia. Memory loss is common in the early stages of Alzheimers, but is not usually the main early symptom of vascular dementia.

The most common cognitive symptoms in the early stages of vascular dementia are:

  • problems with planning or organising, making decisions or solving problems
  • difficulties following a series of steps
  • slower speed of thought
  • problems concentrating, including short periods of sudden confusion.

A person in the early stages of vascular dementia may also have difficulties with:

  • memory problems recalling recent events
  • language eg speech may become less fluent
  • visuospatial skills problems perceiving objects in three dimensions.

As well as these cognitive symptoms, it is common for someone with early vascular dementia to experience mood changes, such as apathy, depression or anxiety. Depression is common, partly because people with vascular dementia may be aware of the difficulties the condition is causing. A person with vascular dementia may also become generally more emotional. They may be prone to rapid mood swings and being unusually tearful or happy.

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Advance Care Planning For Alzheimers Disease Or Dementia

Only mentally competent adult residents suffering from a terminal illness with a prognosis of 6 or fewer months to live are eligible to use their states death with dignity law.

You must be of sound mind, i.e. be able to make your own healthcare decisions, when making requests for medications under aid-in-dying laws, and must be able to self-administer and ingest the medication at the time of your choosing.

While the final final determination of qualification is up to two physicians, generally speaking if you suffer from Alzheimers disease / dementia, you are ineligible to qualify for medication under death with dignity laws because your judgment or decision-making is impaired by the illness if you are in early stages of the illness without cognitive impairment and do not have another disease that is causing a terminal illness, you do not qualify due to not having a terminal diagnosis.

When Is Your Dementia Patient Ready For Hospice Care

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Alzheimer’s disease and other progressive dementias are life-altering and eventually fatal conditions for which curative therapy is not available. Patients with dementia or Alzheimers are eligible for hospice care when they show all of the following characteristics:1

  • Unable to ambulate without assistance
  • Unable to dress without assistance
  • Unable to bathe properly
  • Incontinence of bowel and bladder
  • Unable to speak or communicate meaningfully

Thinking of dementia as a terminal illness from which patients will decline over a matter of years, rather than months, allows healthcare professionals to focus explicitly and aggressively on a palliative care plan.2

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Recognizing Approaching End Of Life

People with advanced dementia suffer from a number of distressing symptoms . In their last 12 months, nursing homes residents with dementia suffer most common from restrictions in mobility, pain, and sleeping disorder. Further frequent symptoms at the end-of-life could be identified problems with eating, trouble with breathing, apathy and anxiety. Contrary to this sleep disturbances, challenging behavior, agitation and depressive episodes occurred less frequently . Increases in distressing symptoms such as febrile infections and problems with eating and swallowing may be indicators for death in the next six months . Clinical complications such as respiratory infections are associated with highest symptom burden . Other results showed increased mortality coinciding with low body weight or low Body Mass Index . Prognostic assessment tools all include at least one criterion related to nutritional status, such as reduced appetite, inadequate food intake, malnutrition, or weight loss .

Physicians associated unexpected death with suffering and poor quality of life . Expecting death within the coming months showed positive effects on quality of end-of-life care. Prognosis estimation under six months was associated with fewer burdensome interventions in people with dementia . Among people with dementia explicitly expected to die a lower symptom burden was noticed and all of them received morphine .

Data Synthesis And Data Collection Process

Given the heterogeneity of the studies, we used a narrative synthesis approach to summarize and map the literature. Articles were included if they examined healthcare provider perceptions towards barriers to palliative care among people with dementia. Articles whose aims were not directed primarily towards barriers to palliative care in people with dementia were excluded. Detailed information of the included articles was then categorized by the themes of the barriers to palliative care. The quality of reviewed articles was not assessed, as the purpose of a scoping review is to scan the current literature in order to determine what has been reported and what needs to be investigated related to a specific topic.

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Alma And Silvias Story

Alma had been forgetful for years, but even after her family knew that Alzheimers disease was the cause of her forgetfulness, they never talked about what the future would bring. As time passed and the disease eroded Almas memory and ability to think and speak, she became less and less able to share her concerns and wishes with those close to her.

This made it hard for her daughter Silvia to know what Alma needed or wanted. When the doctors asked about feeding tubes or antibiotics to treat pneumonia, Silvia didnt know how to best reflect her mothers wishes. Her decisions had to be based on what she knew about her moms values, rather than on what Alma actually said she wanted.

Quality of life is an important issue when making healthcare decisions for people with dementia. For example, medicines are available that may delay or keep symptoms from becoming worse for a little while. Medicines also may help control some behavioral symptoms in people with mild-to-moderate Alzheimers disease.

However, some caregivers might not want drugs prescribed for people in the later stages of Alzheimers. They may believe that the persons quality of life is already so poor that the medicine is unlikely to make a difference. If the drug has serious side effects, they may be even more likely to decide against it.

Lack Of Communication Between Healthcare Providers

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Communication problems are prevalent among staff, leading to poor team collaboration, disagreements, and stress, especially with staff members who were not trained in palliative care .

Studies also discuss conflicts between staff from different disciplines and different training, alongside poor collaboration and communication. Time pressure, funding mechanisms, integration of services, and diffused responsibility were also found to be a cause of conflict between decision-makers and a cause of tension leading to a lack of trust, disorganized care, and hesitancy to address a palliative approach .

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Common Symptoms And Complications Treatment Options

As the disease progresses people with dementia become more and more dependent on other persons for almost all daily activities, care and treatment, t suffering considerable limitations in the last year . As shown above people with advanced dementia suffer a range of complex needs and symptoms, and symptom burden is similar to people with cancer or frailty . People with advanced dementia rarely express their needs and burdensome symptoms spontaneously, relying on their caregiversâ sensitive perception and interpretations of their verbal and nonverbal signs.

What Are The Signs Of End

It is important for caregivers to know when an individual with dementia is close to the end of their life, because it helps ensure they receive the right amount of care at the right time. It can be difficult to know exactly when this time is due to the variable nature of dementias progression, but understanding common end-of-life symptoms of seniors with dementia can help. Below is a timeline of signs of dying in elderly people with dementia:

Final Six Months

  • A diagnosis of another condition such as cancer, congestive heart failure or COPD
  • An increase in hospital visits or admissions

Final Two-to-Three Months

  • Speech limited to six words or less per day
  • Difficulty in swallowing or choking on liquids or food
  • Unable to walk or sit upright without assistance
  • Incontinence
  • Hands, feet, arms and legs may be increasingly cold to the touch
  • Inability to swallow
  • Terminal agitation or restlessness
  • An increasing amount of time asleep or drifting into unconsciousness
  • Changes in breathing, including shallow breaths or periods without breathing for several seconds or up to a minute

Patients with dementia are eligible to receive hospice care if they have a diagnosis of six months or less to live if the disease progresses in a typical fashion. Once a patient begins experiencing any of the above symptoms, it is time to speak with a hospice professional about how they can help provide added care and support.

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Stage : Severe Decline

People with the sixth stage of Alzheimers need constant supervision and frequently require professional care. Symptoms include:

  • Confusion or unawareness of environment and surroundings
  • Inability to recognize faces except for the closest friends and relatives
  • Inability to remember most details of personal history
  • Loss of bladder and bowel control
  • Major personality changes and potential behavior problems
  • The need for assistance with activities of daily living such as toileting and bathing
  • Wandering

Caregiving In The Early Stages

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Although most of your loved ones immediate medical needs can be managed on their own in the early stages, you may need to assist with tasks associated with memory or problem-solving. You may need to remind them of their doctors appointments and to set up the next appointment, along with taking their medications on time and getting refills as needed. You may need to assist them in managing their finances and keeping up with social and work obligations. At times, they may also need help remembering places, people, words, and names. In the early stages, you will want to encourage them to:

  • Maintain their independence
  • Establish a routine to delay the disease from worsening

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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.

How Dementia Causes Death

A person in the late stage of dementia is at risk for many medical complications, like a urinary tract infection and pneumonia . They’re at an even higher risk of certain conditions because they’re unable to move.

Trouble swallowing, eating, and drinking leads to weight loss, dehydration, and malnutrition. This further increases their risk of infection.

In the end, most people with late-stage dementia die of a medical complication related to their underlying dementia.

For example, a person may die from an infection like aspiration pneumonia. This type of pneumonia usually happens because of swallowing problems.

A person may also die from a blood clot in the lung because they are bedbound and not mobile.

It’s important to know that late-stage dementia is a terminal illness. This means that dementia itself can lead to death. Sometimes this is appropriately listed as the cause of death on a death certificate.

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Health Conditions And Dementia

Patients may have both chronic and progressive conditions because of dementia problems. These include vascular dementia, Alzheimer problem and dementia with Lewy bodies. This indicates that conditions of any patient become worse steadily.

However, the rate, at which this situation takes place and related effects on the patients life expectancy depend on different factors. These are exact type of dementia suffered by any person, exact cause of the problem, overall health and an individuals lifestyle.

Help And Advice For Carers

For Dementia &  All Terminal Illnesses

If you care for someone with dementia, you may find it helpful to read more about:

Carers breaks and respite care this can allow you to take breaks from caring

Benefits for carers such as allowances and tax credits that may be available

Page last reviewed: 05 March 2020 Next review due: 05 March 2023

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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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