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Do Alzheimer’s Patients Know They Are Dying

Eating And Drinking/eating Problems

How Doctors Tell Patients They’re Dying | Being Mortal | FRONTLINE

Over the course of the disease difficulties in eating become more and more manifest with consequently reduced food intake and need for support with eating and drinking. People with advanced dementia have problems to swallow adequately. Moreover, they tend to keep food in their mouths, stop chewing or spit out food. In the last month of life difficulty with swallowing was found in 42% of persons and 32% exhibited observable weight loss . Advanced dementia is a risk factor for aspiration followed by pneumonia . Instances of reduced food intake dictate that acute medical events need to be examined, as possible causes for eating problems, these include. acute infections, pain, inadequate oral health, medication related side effects, and stroke . Dementia is often accompanied by deterioration in oral health and oral hygiene which, among other possibilities, may be induced by medication side effects of dry oral mucosa and possible subsequent damage to the oral cavity and teeth. Living with sore mouth is very burdensome, causes pain, hinders use of dental prosthesis and often reduces food intake of people with advanced dementia. Educating caregivers about oral hygiene has great potential for improving the oral health of people with dementia .

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What Do You Think Is Wrong With You

I assumed that the participants had adequate insight if they were able to give the correct diagnosis or, at least, to describe adequately their main symptoms. Of the 30 participants, 14 fulfilled these criteria. Most complained of problems with memory. No participant used the word dementia, but a few were able to accurately describe their conditions. Examples are shown in the first box.

The rest of the participants either denied any problems or gave implausible explanations for their predicaments, such as: loneliness,old age,stomach upset, and the like. Four patients simply said don’t know without further elaboration.

The Seven Stages Of Dementia

One of the most difficult things to hear about dementia is that, in most cases, dementia is irreversible and incurable. However, with an early diagnosis and proper care, the progression of some forms of dementia can be managed and slowed down. The cognitive decline that accompanies dementia conditions does not happen all at once – the progression of dementia can be divided into seven distinct, identifiable stages.

Learning about the stages of dementia can help with identifying signs and symptoms early on, as well as assisting sufferers and caretakers in knowing what to expect in further stages. The earlier dementia is diagnosed, the sooner treatment can start.

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Talking About Death And Dying To Someone With Dementia

The advice on this page can help you plan the future care of someone with dementia, as well as tips for how to talk to them about death and dying.

  • Talking about death an…
  • Dementia is a set of symptoms that causes problems with memory, thinking and understanding. Because there is currently no cure, these symptoms get worse with time and it can become harder to communicate with the person. The advice on this page can help to plan their future care, and to talk to them about death and dying.

    How Hospice Can Help With End

    Death Anxiety in Dementia Patients

    In addition to helping you in recognizing the signs of dying in the elderly with dementia, bringing in hospice care will help with the physical and emotional demands of caregiving. Nurses will be able to adjust medication and care plans as the individuals needs change. Aides can help with bathing, grooming, and other personal care. Social workers can help organize resources for the patient and family. Chaplains and bereavement specials can help the family with any emotional or spiritual needs. Additionally, family members can contact hospice at any time, and do not need to wait until it is recommended by the patients physician.

    To learn more about the criteria for hospice eligibility or to schedule a consultation, please contact Crossroads using the blue Help Center bar on this page for more information on how we can help provide support to individuals with dementia and their families.

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    Recognise And Meet Spiritual And Cultural Needs

    Care providers also need to be attentive to meeting a persons spiritual or cultural needs at the end of life. For one person, this may involve making sure they have contact with a religious leader in the last days or hours of their life, while another may want their favourite composers music to be played quietly but continuously throughout the period. This information should be recorded clearly, and should not come as a surprise to care staff who will know the person their life history, preferences and nature well. You should also discuss these aspects with the persons family or friends.

    Why Do Dementia Patients See Dead Relatives

    Two distressing symptoms that people diagnosed with dementia may experience at some point are hallucinations and delusions . Hallucinations tend to be more common with certain types of dementia. According to the National Institute on Aging, visual hallucinations occur in up to 80 percent of seniors with Lewy Body Dementia, often early on in the disease process. On the other hand, studies estimate that hallucinations present in only 13.4 percent of Alzheimers patients on average, usually in the later stages. Older adults with Parkinsons disease dementia are prone to these symptoms as well.

    One of the many ways that these symptoms may manifest is seeing and talking to loved ones who have passed away long ago. Dementia caregivers are understandably disturbed by these incidents, but they are usually harmless. In fact, people living with dementia may find visual and/or auditory hallucinations of old friends or family members comforting at such a difficult and confusing time.

    Due to memory loss, a loved one with dementia simply may not remember that this person has died. Further damage to their brain may cause hallucinations of this persons presence and full conversations or activities with them even though they are not there. As dementia progresses, we must learn to live in the moment with our loved ones and strive to understand their reality. After all, the things that they are experiencing are very real to them.

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    Support Care Staff And Colleagues

    It is important to remember that staff caring for a person in the last hours and days of their life may find this to be emotionally challenging or distressing. This may be especially so for those who have worked with the person for some time and who have built a meaningful relationship with that person and their family. Those newer to care work, or who have little previous experience of care at the end of life, may find this a worrying or stressful time. It is important that care staff are given support by managers and colleagues, are able to ask for advice and reassurance where needed, and have the space to acknowledge their feelings.

    See End of life care and carers’ needs for more information.

    Strategies To Satisfy A Difficult Appetite

    The DYING Process in Dementia: How to know that death is close

    When you care for someone with Alzheimers, you will meet more than your fair share of challenges. As memory weakens and brain signals deteriorate, major changes in appetite are common and difficult to handle.

    If youre struggling to keep up with an insatiable appetite, youre not alone. Many Alzheimers patients begin to eat more food, or eat more frequently, leading to weight gain and even unreasonable cravings. Sometimes they grab food off of others plates or begin to eat inedible items.

    As a caregiver, you have a difficult task when it comes to food: you need to cater to your loved ones physical needs, keep them calm, and find ways to compromise. Fortunately, understanding where the hunger is coming from will help you find a safe and effective way to control eating behaviors.

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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 .

    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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    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 Main Types Of Dementia

    What can you do when a dementia patient gets agitated?

    Alzheimers disease is the most common cause of dementia, accounting for around 2 out of every 3 of cases in older people. Vascular dementia is another common form, while dementia with Lewy bodies and frontotemporal dementia are less common.

    It is possible to have more than one type of dementia at the same time. Alzheimers is sometimes seen with vascular dementia or dementia with Lewy bodies. You might hear this called mixed dementia.

    The symptoms of dementia vary depending on the disease, or diseases, causing it. You can read more about the symptoms associated with different types of dementia on the Alzheimers Society website .

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    What Have You Been Told About Your Illness

    Of the 30 participants, 20 reported that nobody had ever talked with them about their illness. Only 5 had had an opportunity to discuss it with their physicians. Sometimes the information was provided by nurses and friends but never by the family members. Only 1 participant said that she had been told her diagnosis. In 2 cases, the professionals attempted to reassure the patients and advised them to take prescribed medication. Three participants reported clearly untrue explanations allegedly given by their physicians: hearing impairment, angina pectoris, and bereavement had been suggested as responsible for their present conditions. Two participants declared that the content of the information they were given was insulting . Two participants either did not remember or could not understand what the informers had been trying to tell them.

    How Do You Know When An Alzheimer’s Patient Is Dying

  • How Do You Know When an Alzheimer’s Patient Is Dying? Center
  • In the final stages of Alzheimers disease, neuronal damage and muscle weakness cause patients to lose the ability to coordinate even simple movements. Eventually, they are unable to walk, communicate, control bladder or bowel movements, or feed themselves without significant assistance and careful supervision.

    Signs that a patient with Alzheimer’s disease is close to the end of their life include:

    • Inability to speak
    • Inability to eat or drink because they cant swallow
    • Inability to move from a bed to a chair or change their position
    • Bedsores or pressure ulcers caused by sitting or lying in the same position for too long
    • Unprovoked seizures
    • Cold hands, feet, arms, and legs
    • Restlessness
    • Sleeping for longer periods of time
    • Breathing changes such as shallow breaths or periods without breathing for a few seconds

    The final stages of Alzheimer’s disease can be emotionally and physically challenging, not only for patients, but also for their family members and caregivers.

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    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.

    Final Signs And What To Do

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    If it has been established that the person is now dying and they become restless, this is often referred to as terminal restlessness. It is important to recognise restlessness and report it to a doctor or nurse immediately. Restlessness could be due to pain or high temperature and needs to be relieved.

    If you notice the person is restless and you think they are uncomfortable, you could try helping them move into a more comfortable position. If this does not help, seek advice as they may need pain relief. Likewise, if you notice the person is hot to touch then they may need to be cooled down by a fan or cool flannel on their forehead and given rectal paracetamol by the nurse. They may also need medication to relieve the restlessness if the above does not help.

    As death approaches the persons breathing pattern can change. This is caused by the person going into unconsciousness. It is often called Cheyne-Stoke breathing. The person may have periods where they have regular breathing, then stop breathing for a few seconds. Breathing usually gets faster and there can be long gaps in between. The person who is dying is unaware of this but family members may find this quite distressing. It is important that you or another senior member of staff explain to the relatives that this is what is to be expected and that the person is unaware. It is natural.

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    Provide Physical Comfort And Care

    Assess the person to ensure they are not in discomfort or restless, and offer the kind of care described in the above section . Reduce any interventions to only what is necessary, for example change the persons position every few hours or when they need changing.

    Give regular mouth care. This can be done hourly to prevent the persons mouth from becoming dry. Apply Vaseline to keep lips moist.

    Give eye care, for example use a soft piece of wet clean gauze to prevent the persons eyes from looking sticky.

    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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    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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