When a dementia patient is nearing death, expect significant physical decline: increased sleeping, trouble swallowing/eating, incontinence, and less speech; while breathing changes (irregular, rattling), circulation issues (cold hands/feet, skin color changes like mottling), and sometimes a final "burst of clarity" (terminal lucidity) occur, indicating the body is shutting down.
Signs of the dying process
Stages 6 and 7 of are known as end-stage or severe dementia due to cognitive impairment and the loss of physical abilities. At the end stages the patient will eventually require total care for all daily activities. The patient will have no verbal abilities, will be unable to eat, bathe or dress independently.
As a result of discontinuing eating, patients can die in as early as a few days. For most people, this period without food usually lasts about 10 days, but in rare instances, it can last several weeks.
When is your dementia patient ready for hospice care?
Late-stage dementia typically lasts about one to three years, though it can vary significantly, sometimes lasting months or even longer, with individuals requiring full-time care and facing increased health risks like infections, leading to it being a terminal illness. The final stage is characterized by severe cognitive decline, significant physical dependence, loss of communication, and heightened vulnerability, with pneumonia often being a common cause of death.
Opioids may be useful in the treatment of agitation where pain is an underlying factor, but may also be effective for relieving distress in the absence of physical pain.
At the end of life, patients with dementia often experience high levels of pain due to complex interplay of disease processes and numerous barriers to symptom management. In the hospice setting, informal caregivers play an essential role in pain management.
In the last 48 hours of life, common symptoms include significant changes in breathing (faster, slower, pauses, noisy), increased sleep/unresponsiveness, confusion or delirium, cold/mottled skin (especially extremities), decreased appetite/thirst, loss of bladder/bowel control, and restlessness, often with a "death rattle" from fluid buildup, as the body slows down and organs begin to shut down, emphasizing comfort care.
Hospice doctors are concerned that the use of i.v. fluids gives confusing messages to relatives about the role of medical intervention at this stage in a patient's illness. A drip may cause a physical barrier between a patient and their loved one at this important time.
Alzheimer's dementia is a devastating disease that slowly destroys the brains and lives of those diagnosed. The impact is broad-reaching as it pillages family and friends. This disease is often referred to as “The Long Goodbye,” reflecting how families and friends must watch their loved ones slowly fade away.
Life expectancy after a diagnosis of dementia decreases with increasing age. For example, an average person diagnosed with Alzheimer's disease between ages 70-79 can expect to survive seven more years, while a diagnosis after age 90 is associated with an expected survival of only 2.8 additional years.
It's not always a good idea for someone with dementia to be involved in the formal part of the funeral. It can be extremely upsetting and intense if they forget that their loved one has died and then are reminded of it again at the funeral.
Key signs 2 weeks before death at the end-of-life stages timeline: Extreme fatigue and increased sleep. A marked decrease in appetite and fluid intake. Irregular breathing patterns (Cheyne-Stokes breathing)
The answer is deeply personal. For those caring for someone with dementia, goodbyes may happen in stages. You might say goodbye to shared memories, to the roles your loved one once held, or to the relationship as you knew it. And when your loved one passes, you face another layer of farewell.
Hospice Isn't About Giving Up
It's not a place to speed up the process of dying. A doctor suggesting hospice does not mean they're giving up on providing care and medical treatment. It's end-of-life care, but this doesn't mean giving up hope. It means shifting focus from curative treatments to comfort and support.
As people get closer to dying, they may sleep more, become drowsy or be difficult to wake. They may fall asleep while talking. A person may slowly lose consciousness in the days or hours before death. When visiting someone with advanced cancer, be aware that visiting may be tiring and difficult for the dying person.
But the body tries valiantly. The first organ system to “close down” is the digestive system.
Objective To determine if functional decline differs among 4 types of illness trajectories: sudden death, cancer death, death from organ failure, and frailty.
"This is particularly important for older individuals with dementia," Jensen-Dahm said. "Opioids are known to have significant side-effects including sedation, confusion, respiratory depression and falls. Older adults with dementia have a severe brain disorder and are often frail.
Stage 7: Very severe cognitive decline (severe dementia / final stage). The individual loses the ability to speak, walk, and eat independently. They become entirely dependent on others for care and are near the end of life. Recognizing these stages helps families plan for care, support, and end-of-life decisions.
Signs of pain to look out for include:
Often the person will find it relaxing just to have you there as a calm presence, but here are a few things that can make a difference:
While it's natural to experience a range of emotions when a loved one is in hospice, try to focus your visits on their feelings and needs rather than your own. Avoid saying things like: “I don't know how I'm going to live without you” or “This is so hard for me.”
Other studies, too, found that morphine, midazolam and haloperidol were the most prescribed drugs in the palliative setting [30–33]. These drugs are given to relieve symptoms such as pain, restlessness and agitation, which are frequently seen in advanced cancer [2].