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Is Dementia Considered A Terminal Disease

Dying From Dementia With Late

Dementia: Catching the memory thief

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.

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.

Check Their Advance Care Plan

You should find out if the person has an advance care plan. This document may record their preferences about the care theyd like to receive, including what they want to happen, what they dont want to happen and who they want to speak on their behalf. It may include an advance statement or an advance decision. We have information on planning ahead for patients and their families, which you might find useful.

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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.

Avoidable Use Of Health Care And Long

Alzheimers disease should be considered terminal illness ...

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.

FIGURE 16

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Dementia Is A Terminal Condition

    Many people think of dementia as a memory problem, and therefore something that a person can live with indefinitely. In fact dementia is a degenerative disease that eventually stops brain function, just like heart failure or lung disease. If a person with dementia does not die from an infection or from no longer eating & drinking, eventually their brains begin to misfire, causing seizures, and then no longer signal their lungs to breathe. While they are no longer aware by this time, it is terribly difficult for the family to witness. This is why it is so important for family members to agree in advance on matters like treating an infection, or forcibly feeding someone who is no longer interested in food. Letting nature take its course rather than intervening with treatments is the kindest approach. Pain and other symptoms can be managed with hospice care so the person is not suffering.

    A daughter wrote about her mothers death from Alzheimers dementia, and her post has helped many people come to terms with what to expect.

    What Procedural Safeguards Are Required

    As of March 17, 2021, safeguards are based on whether ones natural death is reasonably foreseeable or not reasonably foreseeable. This is often referred to as a dual track system.

    Safeguards for ALL medical assistance in dying requests:

    The medical assessments

    Any request for medical assistance in dying must be assessed by two independent practitioners. Both physicians and nurse practitioners can assess your eligibility based on the listed criteria. They must be independent from one another and confirm your eligibility in writing.

    • To be considered independent, the assessors must not hold a position of authority over one another, cannot knowingly benefit from your death, and cannot be connected to each other or to you in any way that could affect their objectivity.

    The request

    A request for MAID must be made in writing. The written request must include your signature. If you cannot write, another adult can sign on your behalf under your clear direction.

    • If someone else will be signing for you, they must be at least 18 years of age, understand what it means to request MAID, and not benefit from your death in any way.

    The witnessing

    A written request for MAID must be signed and dated in the presence of one Independent Witness, who must also sign and date the request.

    The final consent

    Waiver of final consent
    Advance consent

    Safeguards for when natural death is not reasonably foreseeable:

    The medical assessments

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    American Hospital Association Disclaimer

    The American Hospital Association has not reviewed, and is not responsible for, the completeness or accuracy of any information contained in this material, nor was the AHA or any of its affiliates, involved in the preparation of this material, or the analysis of information provided in the material. The views and/or positions presented in the material do not necessarily represent the views of the AHA. CMS and its products and services are not endorsed by the AHA or any of its affiliates.

    Barriers For Good Palliative Care For People With Dementia

    WHAT IS END STAGE DEMENTIA? IS IT TERMINAL?

    Despite increasing knowledge of optimal care and the recommendation for early integration of palliative care in the course of disease, accompanied by disease modifying treatment , a number of reasons for barriers of good palliative care for people with dementia were identified .

    Diagnosing dementia in the early phases can be challenging and lengthy, leading to delays early access to palliative care . Dementia is often not acknowledged as terminal and life limiting disease and consequently end of life is not taken into consideration or adequately addressed . Another barrier is the difficulty in predicting the duration of the disease or its anticipated course in contrast to cancer. Although experts have determined the average length of the different stages and length of the disease, accurate individual predictions remain challenging. Notably, people with dementia have limited access to hospice and palliative care .

    Regardless of all efforts there is still no consensus on palliative care in dementia . The applicability and appropriateness of palliative care for people with dementia was also one of the controversies in the development of the EAPC White Paper on optimal palliative care for dementia . There is a great need for robust study results on complex interventions at the end of life . The optimal timing to integrate palliative care or adapt care goals or simultaneous goals to modify disease and to provide comfort is still in discussion .

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    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

    Insufficient Access To Palliative Care

    Each year an estimated 40 million people are in need of palliative care, 78% of whom live in low- and middle-income countries. For children, 98% of those needing palliative care live in low- and middle-income countries with almost half of them living in Africa.

    Worldwide, a number of significant barriers must be overcome to address the unmet need for palliative care:

    • national health policies and systems often do not include palliative care at all
    • training on palliative care for health professionals is often limited or non-existent and
    • population access to opioid pain relief is inadequate and fails to meet international conventions on access to essential medicines.

    According to a WHO survey relating to noncommunicable diseases conducted among 194 Member States in 2019: funding for palliative care was available in 68% of countries and only 40% of countries reported that the services reached at least half of patients in need .

    Other barriers to palliative care include:

    • lack of awareness among policy-makers, health professionals and the public about what palliative care is, and the benefits it can offer patients and health systems
    • cultural and social barriers, such as beliefs about death and dying
    • misconceptions about palliative care, such as that it is only for patients with cancer, or for the last weeks of life and
    • misconceptions that improving access to opioid analgesia will lead to increased substance abuse.

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    Use And Costs Of Long

    An estimated 70% of older adults with Alzheimer’s or other dementias live in the community, compared with 98% of older adults without Alzheimer’s or other dementias. Of those with dementia who live in the community, 74% live with someone and the remaining 26% live alone. As their disease progresses, people with Alzheimer’s or other dementias generally receive more care from family members and other unpaid caregivers. Many people with dementia also receive paid services at home in adult day centers, assisted living facilities or nursing homes or in more than one of these settings at different times during the often long course of the disease. Medicaid is the only public program that covers the long nursing home stays that most people with dementia require in the late stages of their illnesses.

    6.3.1 Use of long-term care services by setting

    Long-term care services provided at home and in the community

    Transitions between care settings

    6.3.2 Costs of long-term care services

    Affordability of long-term care services

    Long-term care insurance

    Medicaid costs

    State

    Should Advanced Dementia Be Considered A Terminal Illness

    30 Dementia Facts for Dementia Awareness Month 2020 ...
    • Print

    Advanced dementia has often been treated as an amalgamation of symptoms in the aging, rather than a deadly illness in itself. A new study, published online today in The New England Journal of Medicine, proposes that it may be beneficialfor patients and caretakers aliketo take the latter approach.

    “As the end of life approaches, the pattern in which patients with advanced dementia experience distressing symptoms is similar to patients dying of more commonly recognized terminal conditions, such as cancer,” Susan Mitchell, a senior scientist at the Institute for Aging Research, part of Hebrew SeniorLife, an affiliate of Harvard Medical School in Boston, and lead paper author, said in a prepared statement. Common symptoms for patients include pain, agitation and shortness of breath the most common immediate causes of death are from pneumonia, fever or eating problems, the authors report.

    “Patients in nursing homes who have dementia are at risk for undertreatment of pain and treatment with burdensome and possibly nonbeneficial interventions,” wrote Greg Sachs, of the Indiana University Center for Aging Research, in an editorial accompanying the report.

    The recognition of dementia as a terminal disease may encourage caretakers to alter end-of-life care to improving comfort, rather than extending life. As Sachs notes in his editorial, advanced dementia patients who have hospice care have “milder psychiatric symptoms” along with fewer hospital admissions.

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    What Causes Vascular Dementia

    Vascular dementia occurs when vessels that supply blood to the brain become blocked or narrowed. Strokes take place when the supply of blood carrying oxygen to the brain is suddenly cut off. However, not all people with stroke will develop vascular dementia.

    Vascular dementia can occur over time as “silent” strokes pile up. Quite often, vascular dementia draws attention to itself only when the impact of so many strokes adds up to significant disability. Avoiding and controlling risk factors such as diabetes, high blood pressure, smoking, and high cholesterol can help curb the risk of vascular dementia.

    Catching the condition early also helps limit the impact and severity of vascular dementia. Early detection requires an awareness of risk factors and, more importantly, efforts to keep them under control. Anyone who suspects vascular dementia should talk with their doctor.

    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

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    What Are The Symptoms Of Frontotemporal Dementia

    Symptoms of FTD start gradually and progress steadily, and in some cases, rapidly. They vary from person to person, depending on the areas of the brain involved. These are common symptoms:

    • Behavior and/or dramatic personality changes, such as swearing, stealing, increased interest in sex, or a deterioration in personal hygiene habits
    • Socially inappropriate, impulsive, or repetitive behaviors
    • Impaired judgment
    • Agitation
    • Increasing dependence

    Some people have physical symptoms, such as tremors, muscle spasms or weakness, rigidity, poor coordination and/or balance, or difficulty swallowing. Psychiatric symptoms, such as hallucinations or delusions, also may occur, although these are not as common as behavioral and language changes.

    Families Need To Know When Dementia Becomes Terminal

    What is dementia?

    The misconception by family members that end-stage dementia is not a terminal condition can have negative consequences for the patient, the researchers say. That’s because concerned loved ones often order aggressive, sometimes burdensome interventions such as feeding tubes that will not improve patient outcomes.

    “Dementia is a leading cause of death in the U.S., and yet surprisingly little is known about how these patients die,” noted the study’s lead author, Dr. Susan Mitchell, an associate professor of medicine at Harvard Medical School and a senior scientist at the Hebrew Senior Life Institute for Aging Research in Boston.

    “When families are more prepared, their loved ones get less burdensome interventions,” said Mitchell, whose team published their findings in the Oct. 15 issue of the New England Journal of Medicine.

    Dementia currently affects about 5 million Americans, but that number is expected to triple in the next 40 years, according to Mitchell.

    Previous studies have suggested that those with advanced dementia often aren’t thought to have a terminal illness, and thus may receive less than optimal end-of-life care, according to background information in the study.

    To get a better understanding of what goes on during the end of life for those with dementia, and hopefully to improve that care, the researchers conducted an 18-month study in 22 nursing homes. A total of 323 residents with advanced dementia were included in the study.

    More information

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    Prognosis For People With Vascular Dementia

    If the conditions that cause vascular dementia go untreated, the prognosis is not good. A person with vascular dementia may seem to improve for periods of time until another stroke takes away more brain function, memory, and independence. Eventually, untreated vascular dementia usually ends in death from stroke, heart disease, or infection.

    Although vascular dementia is a serious condition, catching it early and preventing further damage are the best medicine. People with vascular dementia can work with their doctors and families to detect and manage the condition.

    Necessary Vs Sufficient Conditions

    To be more thorough about things, we should probably make a distinction between a necessary and a sufficient condition. You didnât think you were going to have a philosophy lesson today, did you?

    A necessary condition for something is a condition that has to be there for that something to exist. Consider the so-called âfire triangle.â If you have a fire, then you have oxygen present. Oxygen has to be present for you to have a fire. So, oxygen is necessary for a fire.

    Similarly, being incurable seems like itâs a necessary condition for a disease to be terminal. Pneumonia isnât, per se, incurable. Even though a lot of people die from pneumonia, having pneumonia isnât a death sentence âall things being equal. I had pneumonia when I was twelve years old. I survived. Even my dad had pneumonia when he was 83 and in a nursing home with Alzheimerâs. He survived.

    At the same time, being incurable isnât â by itself â a reason to think that a disease is terminal. If incurability by itself were enough to classify a disease as terminal, then we would say that incurability was a sufficientcondition for a disease being terminal.

    Herpes simplex viruses arenât curable. According to the received medical opinions, if you contract herpes, youâll have herpes for the rest of your life. It can be controlled, but it cannot be corrected, remedied, or reversed in any straightforward way. But, herpes isnât âterminal.â

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