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Do Dementia Patients Know They Are Dying

When The Care Home Nurses Led Her To The Piano She Stared At It Blankly Put Her Hands On The Keys And Stopped And Then Stared Off Into Space Disinterested In The Thing That Had Given Her So Much Joy Her Whole Life

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

They say the disease takes a big downward step and then stabilizes, but that those periods of stability get shorter and shorter. That was the case in February. When we would come visit, her face would light up Hi, Poepie, she would say to me, even when she had lost all her other words. But one day in late February, my sister found her sitting alone in her room, staring vacantly and unresponsive. Nothing my sister did elicited a response. It was the first wakeup call of many for us. The next day, it was back to normal. My mother was her oldalbeit post-Alzheimersself, smiling and responding with yes, no, nods and shakes of the head.

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.

Dementia Stages Before Death

At diagnosis, most people are in either the early- or mid-stage of dementia. People with early stage dementia may be a bit forgetful, but they can still function in everyday life. They live independently many still work.

In mid-stage dementia, memory and thinking problems become more obvious. Other people notice that the affected individual is no longer operating at peak capacity. Symptoms become more pronounced as this stage progresses. Affected individuals may forget that they just ate. They may wander or get lost while walking a once-familiar route. Their sleep habits may change. Its not uncommon for people with mid-stage to sleep during the day and be up most of the night.

Eventually, dementia progresses to the point where individuals can no longer control bowel and bladder function. This loss of control is directly Related to the damage occurring in the brain the cells that normally control these functions die. And as more and more cells die, symptoms worsen. In late-stage dementia, individuals may lose the ability to walk and speak. Self-feeding becomes impossible, and as the disease progresses, many people have a hard time swallowing food or drink.

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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
  • Disorientation
  • 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.

Eating And Drinking/eating Problems

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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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How Hospice Can Help With End

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 patient’s 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.

How To Handle Hallucinations Of Dead Loved Ones

Antipsychotic medications like Seroquel , Risperdal and Haldol may be prescribed if the disease alone is to blame and these hallucinations are upsetting and interfering with a patients quality of life. However, these medications do have side effects and can increase a seniors risk of stroke and even death. The best initial course of action is to use non-drug approaches to calm a dementia patient who is hallucinating, paranoid or delusional.

As hard as it may be to put aside your own feelings of grief, it is best to go along with their perception. As long as the person is not upset by what they are hearing or seeing, your best show of support is to offer reassurance and calmly introduce distractions to manage this troubling symptom of dementia.

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What Are The Signs That Someone With Dementia Is Dying

It is difficult to know when a person with dementia is coming to the end of their life. However, there are some symptoms that may indicate the person is at the end of their life including:

  • limited speech
  • needing help with everyday activities
  • eating less and swallowing difficulties
  • incontinence and becoming bed bound.

When these are combined with frailty, recurrent infections and/or pressure ulcers, the person is likely to be nearing the end of their life. If the person has another life limiting condition , their condition is likely to worsen in a more predictable way.

When a person gets to within a few days or hours of dying, further changes are common. These include:

  • deteriorating more quickly
  • irregular breathing
  • cold hands and feet.

These are part of the dying process, and its important to be aware of them so that you can help family and friends understand what is happening.

When a person with dementia is at the end of life its important to support the person to be as comfortable as possible until they die

For more information, see our page, Signs that someone is in their last days or hours.

Complex Interventions In Advanced Dementia

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As people with advanced dementia suffer complex symptoms and still have numerous and complex physical, psychosocial and spiritual needs they are in need of multidisciplinary health care. By comparison with early stages of the disease there is less knowledge about needs in advanced dementia . Physical needs are related to adequate symptom relief and basic care needs. It is complex to meet the numerous and differentiated psychosocial needs comparable to people in moderate state of dementia, e.g., need of enhancing personhood, communicating and being in contact with others, participating in everyday life or feeling save and familiar . Unmet social needs for activity contributed to discomfort and behavioral symptoms . Needs being important in mild or moderate stage of the disease, e.g., financial needs and cognitive strategies for coping with disease are less direct needs at least for the people with advanced dementia themselves.

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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.

Why Do Dementia Patients Stop Talking

There are many signs that can tell you death is near for a dementia payment. Even though you may be prepared for the end, it is never easy. The ten signs that death is near include:

  • Sleeping. The patient may stop responding or may be more sleepy than usual
  • Loss of interest in fluids and food
  • Coolness: the patients legs, feet, arms, hands, ears, and nose may feel cool to touch because of the decrease in circulation
  • Change in the color of the skin because of the low circulation of blood usually called mottling
  • Rattling sounds within the throat and lungs
  • Bowel and bladder changes
  • Changing vital signs
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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.

    What I Wish I Knew Before My Mothers Alzheimers Death

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    As with many Alzheimers patients, it was the family who suggested my mother get her memory tested. She was 68 years old, repeating herself, losing things and occasionally paranoid and combative with my father, something we had never seen from her before. We thought she might be depressed, but the notion that she might have dementia crossed our minds. She was diagnosed with mild cognitive impairment, the earliest stage of forgetfulness, in 2008, but was not officially given the diagnosis of Alzheimers until 2010, when she had an epileptic seizure. After that, her memory and cognitive faculties deteriorated sharply.

    This is not the story of an Alzheimers patient swinging between the ignorance of their forgetfulness and the panic of watching their own ongoing decline come into focus, nor the story of the fear, the bouts of irritability, and the deep sorrow felt by family members watching their loved one slowly disappear before their eyes. We went through all that, yes. But this is the story of the last three excruciating months of my mothers life. She died in her familys arms at the age of 76, having battled Alzheimers bravely for more than eight years.

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    Be Aware Of Their Eating And Drinking

    The person may have lost their appetite or have difficulties swallowing safely. In the last days, the person may stop eating or drinking. This can be very distressing to watch, but it is normal for people approaching the end of life.

    You should offer the person food and drink for as long as it is safe and they show an interest. Its important to keep the persons mouth comfortable provide sips of fluids and keep lips moist and clean.

    Withdrawing From The World

    For many people, the process of withdrawal from the world is a gradual one and this natural process can appear to be accompanied by feelings of calmness and tranquillity. People may spend more and more time asleep, and when they are awake they often seem drowsy. They may show less interest in what is going on around them. This does not mean they care about you any less.

    Ways to help:

    There are some things you can do to bring the person comfort:

    • Simply spend time with them
    • Touch their arm or hold their hand
    • Speak to them, even if they dont respond, so they can hear the tone and sound of your voice

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    What Happens When Someone Is Dying From Dementia

    We are able to swallow and breathe independently because of our brains. A loved one with dementia may become dehydrated, or they may inhale food or fluids, which can lead to aspiration pneumonia, which can result in choking and chest infections. It is possible to suffer from life-threatening conditions from these.

    What Are The Signs Of End

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    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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    History Of The Alzheimers And Dementia Directive

    A number of factors contributed to the creation of the nations first Alzheimers / dementia directive. In 2003, Washington State enacted RCW 71.32, which allowed for the creation of mental health advance directives. This law inspired Seattle University School of Law Associate Professor Lisa Brodoff to think about a directive for Alzheimers and dementia.

    In 2010, Brodoff published the article Planning For Alzheimers Disease with Mental Health Advance Directives in the Elder Law Journal. The article describes the life changes that accompany Alzheimers disease progression, such as alterations in intimate relationships and the inability to engage in actives of daily life such as driving. Brodoff also described the practice of Medicaid divorces, in which people divorce to protect assets due to incredibly expensive Alzheimers care. Brodoff concluded with a suggestion for a personal advance directive addressing these scenarios. She then partnered with Robb Miller to co-author the directive.

    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.

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    Weighing Hospitalization Against Hospice At The End Of Life

    As a loved ones condition declines due to dementia, the likelihood of developing complications, such as aspiration pneumonia, pressure ulcers and urinary tract infections , increases greatly. Family members must decide whether to seek curative treatment at the hospital for conditions like these, which can be mentally and physically taxing on a person who is cognitively impaired. Sadly, even if secondary health issues resolve, it is probable that they will recur. The difficult question is, should families forgo treatment in the hospital and opt for comfort care? If so, when?

    The answer lies in your loved ones personal end-of-life preferences. Hopefully this was a conversation that took place early on while they were still mentally competent and resulted in appropriate planning measures such as a living will, a do not resuscitate order, a voluntarily stopped eating and drinking , POLST form, or advance directive. If our loved ones wishes have been documented, then it is up to us as their caregivers to follow them.

    Because late-stage dementia prevents patients from effectively clearing bacteria from the body and notifying others of their symptoms or pain, infections can easily take root and are often the cause of death. Urinary and fecal incontinence, difficulty swallowing and breathing, and overall reduced immune system function all contribute to illness.

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