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How Do You Know When A Dementia Patient Is Dying

Awakenings In Advanced Dementia Patients Hint At Untapped Brain Reserves

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

Numerous reports documenting lucid moments at the end of life spur Alzheimers researchers to explore the phenomenon

An elderly woman suffering from late-stage Alzheimers disease had neither talked to nor reacted to any of her family members for years. Then, one day, she suddenly started chatting with her granddaughter, asking for news of other family members and even giving her granddaughter advice. It was like talking to Rip van Winkle, the granddaughter told University of Virginia researchers of her astonishment. Unfortunately, the reawakening did not lastthe grandmother died the next week.

That event got written up as what the case study authors called terminal luciditya surprising, coherent episode of meaningful communication just before death in someone presumed incapable of social interaction. Yet it was by no means unique. Physician Basil Eldadah, who heads the geriatric branch at the National Institute on Aging , had heard such stories and filed them away as intriguing accounts. But in 2018, spurred by the need to make progress combatting Alzheimers, Eldadah began to think it was time to do more and organized a workshop for interested scientists. After all, if the grandmother was able to tap into mysterious neural reserves, cases such as hers might help scientists explore how cognition could possibly be restoredeven brieflyin patients with the most advanced neurodegenerative disease.

What Can Hospice Do For The Family Of A Patient With Dementia

Family members may have to make difficult healthcare and financial decisions, act as caregivers and provide emotional support to others. If the decision is made to stop medical support, families often experience strong emotions and feel overwhelmed.

Hospice offers comprehensive services for families of patients with dementia:

Caregiver education and training The family caregiver is vital in helping hospice professionals care for the patient. As the patient gets weaker, symptoms increase and communication becomes more difficult. We relieve families concerns by educating them on how best to care for their loved one.

Help with difficult decisions Hospice helps families make tough choices that impact the patients condition and quality of lifefor example, whether to give antibiotics for a recurring infection.

A VITAS nurse by phone 24/7 Even the most experienced caregivers will have questions and concerns. With Telecare®, they dont have to wonder, worry or wait for an answer. As the heartbeat of VITAS after hours, Telecare® provides trained hospice clinicians around the clock to answer questions or dispatch a member of the team to the bedside.

Emotional and spiritual assistance Hospice meets the needs of loved ones along with those of the patient.

Respite care Caring for a loved one with an end-stage illness can cause tremendous stress. Hospice offers up to five days of inpatient care for the patient in order to give the caregiver a break.

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 .

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How Dementia Causes Death

A person in the late stage of dementia is at risk for many medical complications. Because they’re unable to move, they’re especially high risk for certain conditions.

They could get a urinary tract infection or pneumonia . They can also experience skin breakdown, pressure ulcers , or blood clots.

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 from underlying dementia or a related complication. For example:

  • A person may die from an infection like aspiration pneumonia. If someone has trouble swallowing, food or liquids may go down the wrong tube. Instead of going into the esophagus or stomach, it’s breathed into the airways or lungs. This leads to a type of pneumonia called aspiration pneumonia.
  • Another person may 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 and can lead to death. In these cases, the death certificate may list dementia as the cause of death.

How Can Healthcare Professionals Help At This Stage

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Healthcare professionals can explain these changes so you understand what is happening.

Healthcare professionals can also take steps to reduce the persons pain or distress, often using medication.

If the person cant swallow, then medication can be provided through patches on the skin, small injections or syringe pumps that provide a steady flow of medication through a small needle under the persons skin. Speak to a GP or another health professional about this.

Talking Point

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Communicate With The Patient And Those Involved In Their Care

Even when someone has been living with a terminal illness for a while, it can be a shock for the patient and the people around them when they reach the last days of their life. It’s important to be honest and reassuring when you’re speaking to the patient and those important to them.

The best person to speak to the patient and the people close to them is a health and social care professional who is confident and experienced. It can help if they have had time to build a relationship with the patient. If you don’t feel comfortable doing this, ask a colleague to help. You can learn the communication skills needed to speak to patients at the end of life through training, experience and feedback from colleagues.

Check whether the patient has recorded their wishes in a care plan or other document. If they haven’t discussed their wishes with anyone, offer them the chance to do this as soon as possible.

Length Of Lucid Period Can Be A Few Seconds Or Days

In the 38 cases studied by Batthyany, 3 per cent of the lucid episodes lasted less than 10 minutes, 16 per cent lasted 1030 minutes, 24 per cent lasted 3060 minutes, 29 per cent lasted several hours, 11 per cent lasted one day, and 5 per cent lasted several days.

However, episodes of PL may also be brief, and last only a few moments. Patients or residents may only speak a few meaningful words in these situations, but they can demonstrate perfect comprehension and understanding.

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In January 2018 a young Dutch woman drank poison supplied by a doctor and lay down to die. Euthanasia and doctor-assisted suicide are legal in the Netherlands, so hers was a death sanctioned by the state. But Aurelia Brouwers was not terminally ill – she was allowed to end her life on account of her psychiatric illness.

Euthanasia And The Law

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Annie wanted people to understand her decision, so she allowed the camera to film on the day she died.

She is shown sitting on the sofa, looking relaxed and positive. Her three children are with her, joking with the two doctors who’ve arrived to carry out the euthanasia about a special meal they had the previous night.

“We went to a three/four-star restaurant,” Frank tells me later.

“I asked her, ‘What do you want to do before you die?’ We had a beautiful meal, laughed and cried. There was no tomorrow that evening. It was so special.

“But then you go home. It was very hard to get any sleep the night before.”

Anneke describes finding a letter that her mother wrote that night.

“She wrote a letter to God, asking him to take care of her children. She knew that if there was a God it would be a really warm forgiving God.”

Frank adds: “She said, ‘It’s a pity I can’t send an email back to my children to tell them what it’s like.'”

The film shows the doctor taking great care to make sure that Annie is fully aware that she is choosing to die by euthanasia. He asks her several times if she is sure she knows what she is doing.

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Are There Any Treatments

There are treatments that can help with the symptoms of some forms of dementia for a period of time, but there are currently no treatments that slow, halt or reverse the changes in the brain caused by the diseases. There are currently no treatments specifically for vascular dementia or frontotemporal dementia.

In the case of vascular dementia, a doctor may prescribe medication to treat underlying cardiovascular risk factors like high blood pressure or diabetes. Physiotherapy, speech therapy or occupational therapy may be offered to help with speech or movement problems. Non-drug treatments such as cognitive therapies may be available and can help some people with dementia to manage their symptoms.

Alzheimer’s Society has more information on treatments for dementia.

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.

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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.

When Should I Ask For Support

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Supporting people with dementia at the end of their life requires a team approach. Often, there will be many people involved in the persons care at the end of their life. Good communication and information sharing helps to ensure the person receives the care they need.

If youre unsure about anything or have any concerns seek advice from a colleague, manager or another health care professional.

There may be certain professionals who can advise on specific issues. These may include a GP, district nurses, social workers, other care staff and specialists.

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Things Your Doctor Wont Tell You About Dying

Learn what science has discovered so far about what happens when we die.

Death is a subject many people do not like to discuss, but its a part of life that we will all have to face. Sometimes the more you know about a certain subject, the less frightening it becomes. Here are 10 things you may not know about dying.

1. Dying is often a process. There are numerous causes of death, many of which are instant. For people who know death is approaching whether from sickness or old age there are certain signs. These signs include slowed breathing, weakened heart rate, and a change in color, says Zachary Palace, MD, medical director of the Hebrew Home at Riverdale in New York.

In general, in the time leading up to death, usually the person will become pale because of a drop in blood pressure, he says. The fingers may get cold or turn blue. If you feel the pulse, it will be weak, and then they start to develop an irregular type of breathing, and thats a sign that things are pretty ominous.

2. When breathing slows, death is likely near. Dr. Palace explains that there may be gaps in between breaths where it looks like the person stopped breathing for 15 to 20 seconds. He says families often worry at this point, but he assures them that its a normal part of the dying process.

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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.

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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

Days To Hours Prior To Death

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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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Familiarity With Medicares Hospice Guidelines For Dementia Patients Is Invaluable

For a patient to be admitted to a program using a diagnosis of dementia, Medicare requires that we are more specific than typical hospice requirements involving a six-month life expectancy, says Fields Lawler. Most programs use the following two criteria to assess if a dementia patient is a candidate for hospice services:

  • The patient has a stage 7 ranking on the FAST scale. The Reisberg Functional Assessment STaging scale consists of 16 items that rank the progression of dementia symptoms in seven different stages. Stage 7 indicates severe dementia and means a patient suffers from incontinence and is unable to dress, bathe, walk, or use the restroom without help. They may also be unable to speak meaningfully or express their own thoughts.
  • Other illnesses exist alongside the patients dementia. Also known as comorbidities, these additional health issues are an important part of hospice eligibility. Dementia comorbidities can include sepsis, severe weight loss, pneumonia, pressure ulcers and fever. A present comorbidity is often an enrollment requirement, and the patient is required to have received treatment for that comorbidity within the last year.

Getting Prepared For A Death

Care staff need to know the persons wishes for their death: where they would prefer to be when they die, who should be present, how pain might be treated, and so on. A persons spiritual and cultural needs are important throughout their life, but may take on a particular significance at the end of their life. We can only support a person nearing death properly if we know this information and have recorded it accurately so they have the best possible, and personalised, end-of-life care

Ensuring that a person is as physically comfortable as possible when they are dying also takes preparation. Is a hospital-style bed available, for example, if it is needed? Is a suitable mattress to hand? How can dignity best be maintained if all personal care is provided at a persons bedside? Does the persons room need to be altered in any way, for example fitting new lighting?

Relatives also need to be prepared. For family, having a good relationship with care staff may be a critical part of the lead-in to this dying phase. You also need to know family members wishes at this time. For example, do they want to be present for the death if possible?

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