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How To Tell When Dementia Patient Is Dying

Signs Of Dying In The Elderly With Dementia

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Dementia is a general term for a chronic or persistent decline in mental processes including memory loss, impaired reasoning, and personality changes. Alzheimers disease is the most common form of dementia, accounting for 60-80% of all cases of dementia. It is also the 6th leading cause of death in the United States, and over 5 million Americans are currently living with Alzheimers disease.

Alzheimers disease and most progressive dementias do not have a cure. While the disease inevitably worsens over time, that timeline can vary greatly from one patient to the next.

Caring for a loved one can be challenging and stressful, as the individuals personality changes and cognitive function declines. They may even stop recognizing their nearest and dearest friends and relatives. As dementia progresses, the individual will require more and more care. As a family caregiver, its important to be able to recognize the signs of dying in elderly with dementia. Hospice can help by offering care wherever the individual resides, providing physical, emotional and spiritual care to the patient and support their family.

What Does It Mean To Have Advanced Dementia

During the advanced stages of dementia, most people endure irreversible loss of mental and bodily function in which they:

  • Cannot recognize loved ones
  • Cannot speak or make oneself understood
  • Experience personality changes
  • Cannot respond to the environment, speak or control movement

However its important to remember that dementia is a progressive disorder. So people can live many meaningful and enjoyable years after the onset of dementia.

Days To Hours Prior To Death

Sometimes, the last couple of days before death can surprise family members. Your loved one may have a sudden surge of energy as they get closer to death. They want to get out of bed, talk to loved ones, or eat food after days of no appetite.

Some loved ones take this to mean the dying person is getting better, and it hurts when that energy leaves. Know that this is a common step, but it usually means a person is moving towards death, rather than away. They are a dying person’s final physical acts before moving on.

The surge of energy is usually short, and the previous signs return in stronger form as death nears. Breathing becomes more irregular and often slower. Cheyne-Stokes breathing, rapid breaths followed by periods of no breathing at all, may occur. So may a loud rattle.

Again, these breathing changes can upset loved ones but do not appear to be unpleasant for the person who is dying.

Hands and feet may become blotchy and purplish, or mottled. This mottling may slowly work its way up the arms and legs. Lips and nail beds are bluish or purple, and lips may droop.

The person usually becomes unresponsive. They may have their eyes open but not see their surroundings. It is widely believed that hearing is the last sense to leave a dying person, so it is recommended that loved ones sit with and talk to the dying loved one during this time.

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Confusion Restlessness Agitation Delusions And/or Hallucinations

Your loved one may be confused about the time, their surroundings and/or the identity of their family members. This can cause them to become restless and anxious. Hallucinations, especially of people who passed away long ago, may also occur in some patients. Gently remind them of the time, date and people who are in the room with them.

Sometimes patients may have delusions that people are trying to hurt them or that they are capable of doing things that are not plausible. If your loved one becomes agitated, do not attempt to restrain or correct them. Instead, be calm and reassuring and try to remove any factors that may have triggered this reaction. If anxiety increases, contact their health care team for guidance. Medication may help minimize their confusion and agitation.

Hospice Care For Advanced Dementia: When Is It Time

Death Anxiety in Dementia Patients

Hospice has long been known for the ability to provide comfort and dignity throughout the dying process. Sadly, too few people are aware that a person does not have to be dying from cancer or experiencing excruciating pain in order to take advantage of end-of-life care. Hospice care is effective for patients suffering from a wide variety of chronic conditions, including heart failure, chronic obstructive pulmonary disease , amyotrophic lateral sclerosis , stroke, renal failure, liver failure and even dementia.

Unlike other serious illnesses, Alzheimers disease and related dementias are extremely difficult to categorize into the neat stages of progression that are typically used to determine whether hospice care is appropriate. Life expectancy is difficult, if not impossible, to pinpoint for patients affected by AD or other forms of cognitive impairment, such as vascular dementia, Lewy Body dementia and frontotemporal dementia. Furthermore, patients in the later stages of these conditions are usually unable to communicate pain, discomfort, wants and needs. This means that family caregivers and even their loved ones physicians can have a tough time deciding when to call in hospice.

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Setting And Study Population

This prospective observational follow-up study was part of a study to validate methods of measurement of quality of care and quality of dying with dementia in long-term care facilities in the Netherlands . From January 2008 to February 2009 two elderly care physicians in two LTCFs included patients if they met the following inclusion criteria: residing in a LTCF for30 days, a physicians diagnosis of dementia and expected to die within the next 7 days. The expectancy of a patient to die within 7 days is based on an estimation made by the treating physician and the nurses caring for the patient, and is often related to the fact that a patient has stopped eating and drinking .

The Medical Ethics review Committee of VU University Medical Center Amsterdam approved the study. Families were asked for permission for study participation by the coordinating physician who also observed the patients. Neither of the observing elderly care physicians were part of the research group.

One To Two Weeks Prior To Death

Families often find the dying process will move faster in the last week or two of life. This may frighten them, especially if they are upset by mental changes in their loved one.

At this point in the journey, you may want to “correct” a loved one if they say things that don’t make sense. It’s not advised that you do. It may be better to listen, and support them in their thoughts.

If they claim to see loved ones who died before, simply let them tell you. We don’t have a way to know if they are hallucinating, or if our loved ones really see what we cannot. Just love them.

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Or Does It Make Sense To Tell Them At All

My moms best friends husband died recently. My mom had known him for more than 60 years, but I debated whether to tell her. Shes had dementia since the fall of 2012 and retains almost no new information.

We call her friend often and my mom asks after her husbandan old memory the disease hasnt stolen from her. I decided she should know.

I sat down next to my mom in the memory care unit where she lives and said, We need to call your friend. You know her husband was not well for some time. He died yesterday. My mom was shocked and readily accepted my offer to call her friend on my phone.

When they hung up, my mom and I talked about how good her friend sounded. We sat quietly for a few moments and then my mom said to me, Did you talk to her? How did she sound?

The experience made me wonder if I made the right choice to tell her.

When they hung up, my mom and I talked about how good her friend sounded. We sat quietly for a few moments and then my mom said to me, Did you talk to her? How did she sound? She had forgotten that she spoke with her friend, but she remembered that her husband had died.

The experience made me wonder if I made the right choice to tell her and what I should do if she forgets in the future. For guidance, I turned to Stephanie Rohlfs-Young, director of volunteer programs at the Alzheimers Association. The following is an excerpt of our conversation, edited for clarity and length.

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Support Care Staff And Colleagues

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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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Telling About A Death

Here are some hints for telling a person with dementia about a death:

    • Tell the news as soon as possible. They will sense that something is wrong and need information to understand, even if just for that period of time.
    • If you are too emotional to talk to them, find someone else maybe a friend or healthcare professional.
    • Choose a time to talk when the person with dementia is well rested.
    • Use short, simple sentences. Dont give too many details this may overwhelm them.
    • Answer questions as honestly as possible.
    • Use clear words like died instead of passed away or at peace now.
    • Try not to protect the person from the truth by suggesting that the person who has died is away and will return later. This can cause worry and agitation later when the person does not return.
    • You can support them with physical touch, such as a hug or holding hands.
    • Consider involving the person with dementia in funeral planning, assigning a simple task. This will help the death be more real for them. They may recognize the rituals around death and act appropriately.
    • Plan for someone to be with the person during services who can also take them out if they become agitated.

Work With Staff To Provide Person

Person-centred care involves a relationship between staff, the person with dementia and the family to provide care that is shaped by the personâs unique interests, likes and dislikes. Both person-centred care and end-of-life care have a common goal of improving the quality of living and dying for the person with dementia.

Communicating appropriate information about the personâs history, previous occupation and daily routines can greatly help staff in providing more person-centred care. The Alzheimer Societyâs All about me booklet may be useful in recording this information.

Visit our page on person-centred care to learn more.

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Supporting A Person With Dementia During A Bereavement

There are lots of things to think about when a person close to someone with dementia dies. Read our advice about telling a person with dementia about a death.

Like anyone, a person with dementia may respond to bereavement in a range of ways. However, difficulties with thinking and reasoning may affect how they understand and adapt to the bereavement. This doesnt mean they are unable to experience loss and grief.

If the person who has died was the main carer of the person with dementia, it can also lead to lots of change in the persons life. They may need professional carers for the first time, or have new people around them providing care. In some cases the person may need to move into residential care. They are likely to need lots of support, guidance and assistance to adjust to these changes.

There are other things to think about when a person close to someone with dementia dies. This includes whether to tell the person, or whether they attend the funeral.

Why Do Dementia Patients Stop Talking

Various Types and Causes of Dementia

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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    When To Seek Out Hospice Care For A Senior With Dementia

    A great deal of uncertainty and misinformation surrounds hospice care and many families hesitate to discuss the option with physicians and their loved ones. Fields Lawler urges families to learn and talk about this valuable resource even if it isnt needed at the moment.

    I am a big advocate for early hospice/palliative care intervention, she explains. I believe that if a family caregiver is thinking their loved one needs help, has questions, and needs guidance, then that is the time to seek out assistance. It is never too early to begin gathering information and forming a plan as a family. Hospice exists to support patients as well as their family members throughout this trying time.

    Because those with dementia decline so gradually, family members may not seek help until their loved ones are very close to the end. Many do not realize that assistance and specialized care may have been available much earlier. While a physician must make the official determination of life expectancy, Fields Lawler recommends requesting a hospice evaluation if an individual with dementia exhibits the following signs:

    • Constant, elevated levels of anxiety and stress
    • Complete dependence on others for assistance with activities of daily living , such as eating, bathing, grooming and toileting
    • Extreme difficulty or complete inability to walk without assistance and
    • The ability to only speak a few intelligible words and phrases.

    How To Recognize When Your Loved One Is Dying

    The dying process usually beginswell before death itself. Sometimes, knowing the common steps in this process can help you know when a loved one is close to dying. There are particular physical, mental, and emotional changes that are signs of the end of life.

    Death is a deeply personal journey, and nothing is certain or set in stone except for the outcome. There are many paths one can take, but the stages often seem similar.

    This article looks at these steps in the journey of dying. It begins with what happens about one to three months before death, then during the last two weeks before death, and then the last few days of life. It is meant to help you know what to expect along this process.

    Verywell / Cindy Chung

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    How Opioids Can Help At The End

    Research shows that certain symptoms and difficulties are common in people with very advanced dementia . These include:

    • Aspiration and other swallowing difficulties
    • Pneumonia
    • Shortness of breath
    • Pain

    Most people know that opioid medications such as morphine are effective pain-killers. For this reason, they are often used to treat pain at the end-of-life.

    But people sometimes dont know that opioids have also been shown to help relieve shortness of breath. So in hospice, a drug like morphine can be used to provide relief from two common end-of-life symptoms: pain, and/or shortness of breath.

    Now, opioids do have some downsides. We dont usually worry much about addiction in people who are terminally ill. But opioids do cause other problems and side-effects, such as constipation.

    One of the biggest concerns about opioids is that they can slow a persons breathing rate. This is a problem because if a persons breathing gets too slow, they end up with too much carbon dioxide and not enough oxygen in the blood, and this can cause death.

    Now, people on hospice are expected to die. But that doesnt mean we want to be rushing things along with medications they are supposed to die of their illness, not because we overly medicate them.

    The American College of Physicians covers the use of opioids at the end of life here: Evidence-Based Interventions to Improve the Palliative Care of Pain, Dyspnea, and Depression at the End of Life: A Clinical Practice Guideline.

    Hospice For People With Dementia

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    Hospice services are intended to provide support and assistance, regardless of what illness a person is dying from.

    That said, in the early days, hospice especially served people dying of cancer, rather than people dying from a slow terminal illness such as Alzheimers disease. Its probably for this reason that some features of Medicares hospice benefit, such as the six-month prognosis, are better suited to cancer diagnoses than other terminal illnesses.

    Today, its become more common for people with dementia to use hospice services at the end of life. In 2014, 15% of hospice admissions were for dementia. Research shows that in people with advanced dementia, hospice usually improves care and symptoms at the end of life.

    One challenge in beginning hospice services for people with dementia is that it can be quite hard to determine when the person has reached a six-month prognosis . Thats because Alzheimers and other dementias usually progress much more slowly than advanced cancer does.

    Medicares guidelines on hospice coverage for people with Alzheimers disease

    Medicare does provide some guidance to clinicians, to help them determine when a person with dementia may have reached a six-month life expectancy. Here is an excerpt from Medicares Hospice Determining Terminal Status Guide & s=56& DocType=All& bc=AggAAAQBAAAA& ” rel=”nofollow”> LCD L33393) :

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