Advanced Dementia: Managing the Burden

Study Finds Late-Stage Dementia as Deadly as Cancer, Prompting Calls for Hospice Care Relief

(CBS)  Gertrude Buckley was a beauty with brains - one of Milwaukee's first female real estate brokers. But around her 80th birthday, her family began noticing odd behavior.

"Her checkbook was a mess. She wrote checks for very much the wrong amount," said Paula Tishel, Buckley's daughter. "She completely denied that she had any memory loss. 'That's ridiculous,' is what she would say."

Buckley is now 93 years old, with advanced dementia. A controversial new study finds her illness is as deadly as cancer and, therefore, its victims should be offered hospice care to spare them from futile and frightening procedures, reports CBS News medical correspondent Jon LaPook.

"Far too many patients experienced distressing symptoms like pain and shortness of breath and received burdensome interventions of questionable benefit in the final days of life," Dr. Susan Mitchell said.

But how do you know when someone is in the final days of life?

Researchers found patients with late-stage dementia - those who speak fewer than six words at a time and are completely dependent - lived on average only 16 months. And about 40 percent were in pain.

Advanced dementia has the same poor prognosis as terminal cancer. But only about 18 percent of family members say this has been explained to them by doctors.

Those who did were far less likely to allow extraordinary measures like feeding tubes and emergency room visits.

"If you're someone who doesn't understand who is doing this or why they're doing it, it's going to feel almost like an assault," said Dr. Greg Sachs of the Indiana University School of Medicine's Center for Aging Research, said of the medical procedures conducted on dementia patients.

Sachs watched his own grandmother suffer through aggressive treatments right up until she died.

He's among a growing number of doctors who advocate hospice care to comfort patients such as Gertrude Buckley. Medicare has covered hospice care since the 1990s but is used on only one in 10 patients with advanced dementia.

"Certainly I'm not advocating sending grandma off on an ice floe," Sachs said. "It's a misconception people either get aggressive care or they get neglected or they get put to death. People actually have a right to aggressive palliative care. They need someone who is responsive to their pain."

Because Buckley left no advanced care instructions, her daughter has been left guessing about her mother's wishes.

"I know that she wouldn't want to be in pain, nobody would. I don't want her to be frightened. I opted not to do anything that was uncomfortable to her but just to make sure that she was really well taken care of and stimulated and comfortable."

Experts stress the goal of hospice care for patients with advanced dementia is hot to hasten their death, it's to make their last days as comfortable as possible.

[cindic]

Deciding care for a loved one is a very personal decision and families have different circumstances that have to be considered. Hospice care can be a tremendous assett-for both patient and family- whether in a home environment, skilled nursing facility, or hospice unit. I am grateful to work for a non-profit hospice in Texas, so fortunately, our patients never receive a bill-even if in our inpatient facility-that can be a huge burden that is lifted for many families. Pain and symptom management, education and emotional support for family members, child life specialist to work with young children( as patient or family member), spiritual and bereavement services prior to and following death--every family deserves this kind of care, but just aren't aware that it's available--so spread the word!!!

[bubbadubba]

Love, attention, familiar surroundings, red wine, green tea, soybean foods, candy, exercise, routine work, anti-depressants, and similar things can prevent or reverse dementia. I know, I did those things for my 87 year old mother who was diagnosed with dementia after my father died and she is as good as she was before she started acting goofy and she is living with my family and she is great now. You could actually see her improve day by day. If you want to give an old person terminal dementia, ignore them and don't try to help and put them in a nursing home environment.

[mymomsdaughter]

Can't say that I agree with you completely. I don't side with any nursing home environment and yet, you tempt me to provide some background on my family. I took care of my mother for close to 10 years. In fact I've lived with her as well as my brother. Taking her to doctor appointments, administering her meds, cooking for her, helping her in the garden which was her joy. Even when she became non-ambulatory, I did almost everything for her. Fortunately, I had a job that allowed me to telecommute from home. Over the course of her life, her behavior became erratic, not goofy, mind you. We thought it was just old age. I might add, my mother was also diabetic and suffered from spinal stenosis. Well, the doctor prescribed the appropriate meds, including an anti-depressant(didn't help much) but Aricept sure calmed her down. He even suggested surgery to treat the spinal stenosis. Anyway, as much love and attention my mother received, and trust me, there was lots of love to pass around in our household with mom around, her dementia still deteriorated. She couldn't even recognize me or my brother at times. Her doctor told me to place her in a nursing home after her first foot surgery last year for treatment. I didn't agree with him and wanted to punch in the face but gave in with the intention the stay would be temporary. Well, guess what, a few months later, her other foot needed surgery and treatment at the care home facility was required. I visited her every day at that care home and stayed with her until she'd fall asleep. Therefore, to imply I would ignore my own mother and not try to help her is disheartening. I miss my mother every single day and night and only an individual who's truly taken care of their own parent would understand that. By the way, dementia can be confused with symptons associated with diabetes or urinary tract infection. It is the latter ailments that can be reversed.

[mymomsdaughter]

My 87-year-old mother just passed away last month. When we received her death certificate, the main cause listed was Advanced Dementia and Malnutrition then followed under a smaller caption by other medical ailments associated with aging. Her dementia started about 4 years ago and took a steep decline mid-last year, however, I never once thought Dementia could factor into her demise.

She wasn't eating during the last few months of her stay at a care home facility even while taking an appetite stimulant. A nose feeding tube had to be inserted because she was already down to 89 lbs. She had difficulty speaking a full sentence or sometimes would stop at mid-sentence then remain quiet. She suffered arthritic pain even while being administered around the clock strong pain relief meds. Between last November and this year, my mother had 2 surgeries performed on each foot. Each time she came out of surgery, she could not understand the significance of these events nor the pain that accompanied it. Last month when she became non-responsive at the care home and had to be hospitalized. A palliatative care team at the hospital spoke to me and my family to advise us of our mother's declining condition. Our mother had a DNR which made the decision to let her go heart-wrenching. We decided to bring her to the local Hospice House instead of her home or back to the care home facility.

From the time our mother was transferred to Hospice House until 4 days later when she passed away peacefully, the staff, highly trained as they are in the medical field, treated her with dignity and moved her carefully as not to cause much pain. Their goal is to provide comfort care during this time. Unlike most care home facilities, Hospice House has staff who actually recognize the patients' medical ailments and will check on them more often. They even provide grief support to the families. Hospice House is reimbursed by Medicare, however, the family/patient has to pay out of pocket for room and board.

I do believe Dementia is still misunderstood by many as I have to continually explain this condition to relatives and our mother's elderly friends. There is not enough information published on this condition. It does get second billing to Alzheimer's, though. However, without more articles or news reports such as the one by CBS news, we're just left to wonder.

[mymomsdaughter]

My 87-year-old mother just passed away last month. When we received her death certificate, the main cause listed was Advanced Dementia and Malnutrition then followed under a smaller caption by other medical ailments associated with aging. Her dementia started about 4 years ago and took a steep decline mid-last year, however, I never once thought Dementia could factor into her demise.

She wasn't eating during the last few months of her stay at a care home facility even while taking an appetite stimulant. A nose feeding tube had to be inserted because she was already down to 89 lbs. She had difficulty speaking a full sentence or sometimes would stop at mid-sentence then remain quiet. She suffered arthritic pain even while being administered around the clock strong pain relief meds. Between last November and this year, my mother had 2 surgeries performed on each foot. Each time she came out of surgery, she could not understand the significance of these events nor the pain that accompanied it. Last month when she became non-responsive at the care home and had to be hospitalized. A palliatative care team at the hospital spoke to me and my family to advise us of our mother's declining condition. Our mother had a DNR which made the decision to let her go heart-wrenching. We decided to bring her to the local Hospice House instead of her home or back to the care home facility.

From the time our mother was transferred to Hospice House until 4 days later when she passed away peacefully, the staff, highly trained as they are in the medical field, treated her with dignity and moved her carefully as not to cause much pain. Their goal is to provide comfort care during this time. Unlike most care home facilities, Hospice House has staff who actually recognize the patients' medical ailments and will check on them more often. They even provide grief support to the families. Hospice House is reimbursed by Medicare, however, the family/patient has to pay out of pocket for room and board.

I do believe Dementia is still misunderstood by many as I have to continually explain this condition to relatives and our mother's elderly friends. There is not enough information published on this condition. It does get second billing to Alzheimer's, though. However, without more articles or news reports such as the one by CBS news, we're just left to wonder.

[searingtruth]

"A Grand Challenge

My friends, the simple truth is that we are wasting our precious time, resources, intellect, and passion. As a species we are just as aimless today as when our primitive ancestors first ventured out upon this earth.
Today I am proposing that for the first time in human history, we change that.

Radically.

More than any time in history, humanity needs a grand challenge. Not only to avert its extinction, but also to indelibly etch the common bond of mutual reliance and cooperation on current and future generations.
Fortunately, all of the forces that now seem to conspire against us can quickly be turned to our advantage.

For the first time in human history we actually possess technologies so advanced that any physical problem can potentially be solved.
And yet, I wonder, do we possess the will and wisdom to utilize them for our salvation instead of our destruction?

I propose that we find out.

So today I offer you a radical and stark choice between two future realities.

An aimless future of continued war and conflict, with all its accompanying suffering and death; or a limitless future dedicated to defeating suffering and death itself, with all its accompanying technological advancement and social evolution.

Yes indeed, I have a new plan, for all of you. A plan of hope. A plan of adventure. A plan of such extraordinary magnitude as to take the breath, and challenge the senses, of all who would consider it. A plan to bind our common people in hope, and finally free our conscience for noble purpose.

I propose that in the next three decades we at last end the scourge of human disease upon this earth, and begin the inevitable adventure of humanity's migration beyond it.

We shall at last unlock the fundamental secrets of our biology so we may conquer any illness or defect at will, and we shall free ourselves from the bonds of our native home so we may evade global calamities, and begin the expansion of our species beyond this world.

No longer shall our survival be dependent upon the random and dispassionate forces of nature. No longer shall we quiver in anguish as we helplessly watch those we love suffer and die in agony from an endless list of human disease and dysfunction. No longer shall our globe be divided in constant turmoil and conflict while the hammer of fate hangs precariously balanced over all we know and love.

We shall at last take control of our future, our fate, and ourselves.
No other endeavor ever attempted by humankind will require more genius, dedication, compassion, and sacrifice.

And no other endeavor ever attempted by humankind will be more vital to the continued existence of our species.

I understand that for many this may initially seem like pure science fiction. This is to be expected since the scales of the threats we face reside within the scope of what we have always considered to be science fiction. However, in reality, all of these goals are well within our technological reach. They are the quickest, and I believe only, way for our species to battle both the physical and societal threats that will continue to confront us."
SearingTruth

A Future of the Brave

[brianbwb-2009]

ST as usual, your cause is noble, and your expression of it elegant.

However, If I might play the "devil's advocate" for a minute, I would introduce the following points to consider.

I do not think the planet can tolerate near-immortals until the spiritual and mental weaknesses deficiencies, and humanity-adverse components of the human spirit are first dealt with, otherwise we have the next Bushes or Hitlers living and harming humanity for 150-200 years or more.

Consider also the per-person energy consumption, food and otherwise, on a planet whose consumers life life spans twice as long. as currently.

I rather prefer Nature's dispassionate administration of life-span, than any scheme humans could come up with, because I don't trust the motives of humans, and history has given me no reason to trust them.

We live in a de-facto aristocratic society, despite the founding fathers correctly frowning on the concept, imagine huge chunks of the economy locked up and under the control of intermarried families for half a century or more.

And above all, when the technology does permit the eradication of disease, where is the guarantee that it will not be exclusively used and guarded by a small clique or cabal, or denied to groups because of ethnicity, religion, economic status, or political bent?

Like I said at the beginning, your cause is noble, but Humanity is not ready for extended lifespan, as we haven't yet learned to use what we already have in a positive way.