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Should advanced dementia be considered a terminal illness?

The views expressed are those of the author and are not necessarily those of Scientific American.

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dementia terminal illnessAdvanced dementia has often been treated as an amalgamation of symptoms in the aging, rather than a deadly illness in itself. A new study, published online today in The New England Journal of Medicine, proposes that it may be beneficial—for patients and caretakers alike—to take the latter approach.

"As the end of life approaches, the pattern in which patients with advanced dementia experience distressing symptoms is similar to patients dying of more commonly recognized terminal conditions, such as cancer," Susan Mitchell, a senior scientist at the Institute for Aging Research, part of Hebrew SeniorLife, an affiliate of Harvard Medical School in Boston, and lead paper author, said in a prepared statement. Common symptoms for patients include pain, agitation and shortness of breath; the most common immediate causes of death are from pneumonia, fever or eating problems, the authors report.

"Patients in nursing homes who have dementia are at risk for undertreatment of pain and treatment with burdensome and possibly nonbeneficial interventions," wrote Greg Sachs, of the Indiana University Center for Aging Research, in an editorial accompanying the report.

The study followed 323 patients with advanced dementia in 22 different nursing homes for 18 months. By the end of the study, more than half (54.8 percent) had died, and of the deceased, about 40 percent of patients had been hospitalized, put on a feeding tube or experienced at least one other so-called "burdensome intervention" in their last few months of life.

"Many of the patients in our study underwent interventions of questionable benefit in the last three months of life," Mitchell said. However, care changed when caretakers understood the risk of death and likely outcome of interventions. "When [patients'] health-care proxies were aware of the poor prognosis and expected clinical complications in advanced dementia, patients were less likely to undergo these interventions and more likely to receive palliative care in their final days of life," she added.

The recognition of dementia as a terminal disease may encourage caretakers to alter end-of-life care to improving comfort, rather than extending life. As Sachs notes in his editorial, advanced dementia patients who have hospice care have "milder psychiatric symptoms" along with fewer hospital admissions.

More than five million people in the U.S. have dementia, a condition that includes problems with memory, communication and reasoning, of which Alzheimer’s disease is the most widely recognized.

"A better understanding of the clinical trajectory of end-stage dementia is a critical step toward improving the care of patients with this condition," Mitchell said.

Image courtesy of iStockphoto/JJRD

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  1. 1. Michael Hanlon 3:09 am 10/15/2009

    Terminal illness? Is that like when you throw up at the airport? And by advanced is it meant that there has been a test passed and a certificate awarded? They’re building the Soylent Amber plants over in Sweden right now! Am i demented? Geesh, I hope not. This article doesn’t paint a rosy future for me.

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  2. 2. Michael Hanlon 6:13 am 10/15/2009

    Let’s see, talk about the plight of our elderly, a fate we all hope to get to, or, make fun about killing cute little bunny rabbits? Hmmm. Not my choice but I think the numbers of comments between the two sites speaks sourly to our consideration for our fellow man.

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  3. 3. Michael Hanlon 6:25 am 10/15/2009

    As I think more about it, and i express as much respect for these unfortunates afflicted with this failure to function, but is a mindless, demented human anything more than a rabbit that has the ability to talk? And talk in a manner that resembles, only resembles, intelligence?

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  4. 4. doug 1 6:33 am 10/15/2009

    I hope the above commenter, Michael Hanlon, never finds out the answers to the questions he asks, because as ignorant as his questions are, not even someone as un-funny as he plainly is, deserves to discover just what "advanced terminal illness" really means in any truly meaningful way.
    Good article, by the way, and something most caregivers are far more aware of than the health care system itself, whom one might be tempted to say, is mostly interested in keeping their client…ooops, I mean patient…alive as long as there are benefits to be disbursed. Let’s hope this changes soon.

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  5. 5. mrsscubafish 8:20 am 10/15/2009

    This article makes some excellent points, some of which some family members already had thought about. I know I have seen this with my own mother who is in the end stages of life. Even though I am not a medical professional, I know some of these things. I also know what some other family members would do in my place and they are not happy with me for my "non-caring" role. I believe in non intervention when there is no benefit other than to cause more harm. This is truly a dreaded disease that has had its round of jokes but is truly no laughing matter. The loss of memories and abilities is traumatic to both the elder and the family members. I pray daily for a cure that does not involve the harming of more people.

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  6. 6. mrsscubafish 8:32 am 10/15/2009

    Michael Hanlon expresses a definite lack of compassion for afflicted people and that is distressing. I hope that if he is ever in a position of having even a little taste of what it means to be helpless and in the care of someone else, he is treated with the dignity all people deserve and not the disregard he seems to show.

    I agree with doug 1 that our health care system needs to be updated in their care of people with end of life issues. Some of the things this group of people is subjected to is unreal.

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  7. 7. Michael Hanlon 4:46 pm 10/15/2009

    Yes I began with humor. Then I became aware that readers would rather discuss terminating bunnies than terminal humanity issues. They won’t and evidently can’t face up to the issue. They avoid it, I approached it, said how’d ya do?, my that’s a funny thing you’re doing, can we talk? Then weighed in that in fact our character flaws do indeed effect the way we address this issue. We cannot allow sentimentality to disrupt our decisions. Those who suffer from sever dementia are no longer with us. We can decide to hrbor them safely in a port of our choice, or we can choose to round them up like rabbit vermin. And I think that points out that the article has applicable merit in our current health care debate.

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  8. 8. Ethicist 7:06 pm 10/16/2009

    Advanced dementia with no hope for recovery and or improvement and accompanied by progressive decline could be considered as terminal illness and should be afforded the same rights and compassion as any terminal illness.

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  9. 9. Michael Hanlon 11:43 pm 10/24/2009

    And the bunny story leads 50 to 9 after this one is put here and ten days have passed. Sad, really. <xox>

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  10. 10. minnie 2:06 am 12/21/2009

    Dementia can be caused by lot of disorders which damage the brain. It is not a specific disease but rather a collection of symptoms, this is according to the <a href="">research paper</a> I have read.

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  11. 11. bean54 3:26 am 02/10/2010

    Absolutely. Losing your mind’s capacity for thought and communication is losing your life, and though its a mental illness, it has physical consequences that contribute to a declined quality of life.
    I care for my grandmother with Dementia due to Alzheimers. I want to get as much information to prepare for the stages and end of life care. We’re not far along in the progression of the disease(so I read), but even now, on a daily basis I wonder "how does she feel? How can I make her quality of life better? Is she tired and would like to rest, or should I give her an activity to stimulate her mind and get her moving now?" I have clues that give me answers, but I know these questions have gotten harder through the years and will continue to do so in the future. She can’t tell me, really, how to help her, and that’s what this is really about… An inability to communicate their needs, demented concerns , and for us to get feedback from them on the best treatment/solution, because they are MIND solutions needed, and it’s still impossible to read those. I’m glad there’s some research going on about these issues, because they’re important to be looked at for all of us, all around the world. There should be some dignity available for the sick in need, and guidance for the ones caring for them that mean to help assist them in the most humane way possible. If you know of any other studies, or studies looking for feedback on dementia treatment, please feel free to contact me. (pardon the nondescript email) Thank you!

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  12. 12. swift2000 2:17 pm 04/7/2011

    Now the rate of dementia is increasing in all over the world. Two major types of dementia has been found. Parkinson and <a href="">Vascular dementia</a>. very dangerous for health.

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