Caregivers, and healthcare professionals,here is some great information Here is a great dementia resource for caregivers and healthcare professionals, Your residents will love the Amazon Kindle Fire Here is information on being the best caregiver you can be Here is a way for nurses administrators, social workers and other health care professionals to get an easyceu or two Follow alzheimersideas on twitter The Dementia Caregiver's Little Book of Hope [Kindle Edition] ADEAR Here are some good ways you can deal with incontinence in dementia care.
A person with Alzheimer’s disease may have other medical problems over time. These problems can cause more confusion and behavior changes. The person may not be able to tell you what is wrong.
One problem, incontinence, means a person can’t control his or her bladder and/or bowels. This may happen at any stage of Alzheimer’s disease, but it is more often a problem in the later stages. Signs of this problem are leaking urine, problems emptying the bladder, and soiled underwear and bed sheets. Let the doctor know if you see any of these signs. He or she may be able to treat the cause of the problem.
Causes of Incontinence
Incontinence has several possible causes. Some can be treated:
Urinary tract infection
Enlarged prostate gland
Too little fluid in the body (dehydration)
Diabetes that isn’t being treated
Taking too many water pills
Drinking too much caffeine
Taking medicines that make it hard to hold urine
When you talk to the doctor, be ready to answer the following questions:
What medicines is the person with Alzheimer’s taking?
Does the person leak urine when he or she laughs, coughs, or lifts something?
Does the person urinate often?
Can the person get to the bathroom in time?
Is the person urinating in places other than the bathroom?
Is the person soiling his or her clothes or bed sheets each night?
Do these problems happen each day or once in a while?
What To Do About Incontinence
Here are some ways you can deal with incontinence:
Remind the person to go to the bathroom every 2 to 3 hours. Don’t wait for him or her to ask.
Show the person the way to the bathroom, or take him or her.
Watch for signs that the person may have to go to the bathroom, such as restlessness or pulling at clothes. Respond quickly.
Make sure that the person wears loose, comfortable clothing that is easy to remove.
Limit fluids after 6 p.m. if problems happen at night. Do not give the person fluids with caffeine, such as coffee or tea.
Give the person fresh fruit before bedtime instead of fluids if he or she is thirsty.
Here are some other tips:
Mark the bathroom door with a big sign that reads “Toilet” or “Bathroom.”
Use a stable toilet seat that is at a good height. Using a colorful toilet seat may help the person identify the toilet. You can buy raised toilet seats at medical supply stores.
Plan ahead if you are going out with the person. Know where restrooms are located. Take an extra set of clothing in case of an accident.
Help the person when he or she needs to use a public bathroom. This may mean going into the stall with the person or using a family or private bathroom.
Accidents Happen
Be understanding when bathroom accidents occur. Stay calm and reassure the person if he or she is upset.
Incontinence supplies, such as adult disposable briefs or underwear, bed protectors, and waterproof mattress covers, may be helpful. You can buy these items at drugstores and medical supply stores. A drainable pouch may be useful for the person who can’t control his or her bowel movements. Talk to a nurse about how to use this product.
Some people find it helpful to keep a record of how much food and fluid the person with Alzheimer’s takes in and how often he or she goes to the bathroom. You can use this information to make a schedule for going to the bathroom. MORE INFORMATION:
Alzheimer's may be triggered by brain immune-system imbalances. Learn the way Duke University researchers want to re-balance that system. See how the nutrient arginine affects memory.
Increasingly, evidence in the lab supports the idea that the immune system, which protects our bodies from foreign invaders, plays a part in Alzheimer's disease. But the exact role of immunity in the disease is still a mystery.
Continued below video...
A breakthrough study at Duke University suggests that in Alzheimer's disease, certain immune cells that normally protect the brain begin to abnormally consume an important nutrient: arginine. Blocking this process with a small-molecule drug prevented the characteristic brain plaques and memory loss in a mouse model of the disease.
Published in the Journal of Neuroscience, the groundbreaking research adds focus to a 3rd potential cause of Alzheimer's, above and beyond the 2 well-established causes of plaques and tangles. The importance of this development is that it can easily lead to a new treatment strategy.
"If indeed arginine consumption is so important to the disease process, maybe we could block it and reverse the disease," said senior author Carol Colton, professor of neurology at the Duke University School of Medicine, and a member of the Duke Institute for Brain Sciences.
The brains of people with Alzheimer's disease show two hallmarks -- 'plaques' and 'tangles' -- that researchers have puzzled over for some time. Plaques are the build up of sticky proteins called beta amyloid, and tangles are twisted strands of a protein called tau. In the study, the scientists used a type of mouse, called CVN-AD, that they had created several years ago by swapping out a handful of important genes to make the animal's immune system more similar to a human's.
Compared with other mice used in Alzheimer's research, the CVN-AD mouse has it all: plaques and tangles, behavior changes, and neuron loss.
In addition, the gradual onset of these symptoms in the CVN-AD mouse gave researchers a chance to study its brain over time and to focus on how the disease begins, said the study's first author Matthew Kan, an MD/PhD student in Colton's lab.
Looking for immune abnormalities throughout the lifespan of the mice, the group found that most immune system components stayed the same in number, but a type of brain-resident immune cells called microglia that are known first responders to infection begin to divide and change early in the disease.
The microglia express a molecule, CD11c, on their surface. Isolating these cells and analyzing their patterns of gene activity, the scientists found heightened expression of genes associated with suppression of the immune system. They also found dampened expression of genes that work to ramp up the immune system.
"It's surprising, because [suppression of the immune system is] not what the field has been thinking is happening in AD," Kan said. Instead, scientists have previously assumed that the brain releases molecules involved in ramping up the immune system, that supposedly damage the brain.
The group did find CD11c microglia and arginase, an enzyme that breaks down arginine, are highly expressed in regions of the brain involved in memory, in the same regions where neurons had died.
Blocking arginase using the small drug difluoromethylornithine (DFMO) before the start of symptoms in the mice, the scientists saw fewer CD11c microglia and plaques develop in their brains. These mice performed better on memory tests.
"All of this suggests to us that if you can block this local process of amino acid deprivation, then you can protect -- the mouse, at least -- from Alzheimer's disease," Kan said.
DFMO is being investigated in human clinical trials to treat some types of cancer, but it hasn't been tested as a potential therapy for Alzheimer's. In the new study, Colton's group administered it before the onset of symptoms; now they are investigating whether DFMO can treat features of Alzheimer's after they appear.
Does the study suggest that people should eat more arginine or take dietary supplements? The answer is 'no,' Colton said, partly because a dense mesh of cells and blood vessels called the blood-brain barrier determines how much arginine will enter the brain. Eating more arginine may not help more get into the sites of the brain that need it. Besides, if the scientists' theory is correct, then the enzyme arginase, unless it's blocked, would still break down the arginine.
"We see this study opening the doors to thinking about Alzheimer's in a completely different way, to break the stalemate of ideas in AD," Colton said. "The field has been driven by amyloid for the past 15, 20 years and we have to look at other things because we still do not understand the mechanism of disease or how to develop effective therapeutics."
Caregivers, and healthcare professionals,here is some great information Here is a great dementia resource for caregivers and healthcare professionals, Your residents will love the Amazon Kindle Fire Here is information on being the best caregiver you can be Here is a way for nurses administrators, social workers and other health care professionals to get an easyceu or two Follow alzheimersideas on twitter The Dementia Caregiver's Little Book of Hope [Kindle Edition] ADEAR As Alzheimer's progresses, people may become more agitated or aggressive. Check out 9 tips for handling it.
Agitation means that a person is restless or worried. He or she doesn't seem to be able to settle down. Agitation may cause pacing, sleeplessness, or aggression, which is when a person lashes out verbally or tries to hit or hurt someone.
Causes of Agitation and Aggression
Most of the time, agitation and aggression happen for a reason. When they happen, try to find the cause. If you deal with the causes, the behavior may stop. For example, the person may have:
Pain, depression, or stress
Too little rest or sleep
Constipation
Soiled underwear or diaper
Sudden change in a well-known place, routine, or person
A feeling of loss—for example, the person may miss the freedom to drive
Too much noise or confusion or too many people in the room
Being pushed by others to do something—for example, to bathe or to remember
events or people—when Alzheimer's has made the activity very hard or impossible
Feeling lonely and not having enough contact with other people
Interaction of medicines
Look for early signs of agitation or aggression. If you see the signs, you can deal with the cause before problem behaviors start. Try not to ignore the problem. Doing nothing can make things worse.
A doctor may be able to help. He or she can give the person a medical exam to find any problems that may cause agitation and aggression. Also, ask the doctor if medicine is needed to prevent or reduce agitation or aggression.
Tips for Coping
Here are some ways you can cope with agitation or aggression:
Reassure the person. Speak calmly. Listen to his or her concerns and frustrations. Try to show that you understand if the person is angry or fearful.
Allow the person to keep as much control in his or her life as possible.
Coping with changes is hard for someone with Alzheimer's. Try to keep a routine, such as bathing, dressing, and eating at the same time each day.
Build quiet times into the day, along with activities.
Keep well-loved objects and photographs around the house to help the person feel more secure.
Try gentle touching, soothing music, reading, or walks.
Reduce noise, clutter, or the number of people in the room.
Try to distract the person with a favorite snack, object, or activity.
Limit the amount of caffeine, sugar, and "junk food" the person drinks and eats.
Here are some things you can do:
Slow down and try to relax if you think your own worries may be affecting the person with Alzheimer's.
Try to find a way to take a break from caregiving.
Safety Concerns
When the person is aggessive, protect yourself and others. If you have to, stay at a safe distance from the person until the behavior stops. Also try to protect the person from hurting himself or herself.
SOURCE:
ADEAR The Alzheimer's Disease Education and Referral (ADEAR) Center is a service of the National Institute on Aging, part of the National Institutes of Health. The Center offers information and publications for families, caregivers, and professionals about Alzheimer's disease and age-related cognitive changes.
Caregivers, and healthcare professionals,here is some great information Here is a great dementia resource for caregivers and healthcare professionals, Your residents will love the Amazon Kindle Fire Here is information on being the best caregiver you can be Here is a way for nurses administrators, social workers and other health care professionals to get an easyceu or two Follow alzheimersideas on twitter
People aged 85 and older whose total cholesterol had increased from their levels at midlife had a reduced risk for marked cognitive decline, compared with those a decade younger whose cholesterol was similarly elevated, Mount Sinai researchers report in a new study.
The results of the study appear in Alzheimer's & Dementia: The Journal of the Alzheimer's Association. The researchers found that people aged 85-94 with good cognitive function whose total cholesterol increased from midlife had a 32 percent reduced risk for marked cognitive decline over the next ten years, compared with people aged 75-84, who had a 50 percent increased risk.
Increase Our Cholesterol?
The researchers said that the results did not suggest that those 85 and older should increase their cholesterol for better cognitive health, but rather that those in that age cohort with good cognition and high cholesterol probably also had some protective factor that someday could be identified and studied.
The research team evaluated the association of five total cholesterol values with a substantial decline in cognitive function from normal function, called marked cognitive decline. The five values were midlife (average age 40) total cholesterol, late-life (average age 77) total cholesterol, mean total cholesterol since midlife, linear change since midlife (in other words, whether it was increasing or decreasing), and quadratic change since midlife (whether the linear change was accelerating or decelerating). Data were obtained from the original Framingham Heart Study, a long-term, ongoing cardiovascular cohort study on residents of Framingham, Massachusetts. That study began in 1948 with 5,209 adult subjects and is now on its third generation of participants
Over 85, Under 75
The team assessed whether marked cognitive decline was associated with the five cholesterol values, and whether the associations with those values changed depending on the age of cognitive assessment. They found several cholesterol values including high last cholesterol, increasing levels, and decreasing acceleration were predictors associated with increased risk of a marked cognitive decline, that were associated with increased risk of a marked cognitive decline. However, as the outcome age increased, some associations were reduced, or even reversed. Furthermore, in the subgroup of cognitively healthy 85-94 year olds, a high midlife cholesterol level was associated with a reduced risk for marked cognitive decline. This contrasts with samples in other studies that have focused on elderly subjects primarily below age 75, where midlife cholesterol was associated with increased risk of cognitive decline.
Successful Cognitive Aging
"Our results have important implications for researching genetic and other factors associated with successful cognitive aging," said the study's first author, Jeremy Silverman, PhD, Professor of Psychiatry, Icahn School of Medicine at Mount Sinai. "The data are consistent with our protected survivor model - among individuals who survive to very old age with intact cognition, those with high risk factor levels are more likely to possess protective factors than those with lower risk factor levels. Long-lived individuals who are cognitively intact despite high risk should be targeted in research studies seeking protective factors, which could help identify future drugs and therapies to treat dementia and Alzheimer's disease."
Dr. Silverman notes that these results do not imply that those 85 and older should increase their cholesterol. His research team will next study other risk factors for cognitive decline, including body mass index and blood pressure..
"We don't think high cholesterol is good for cognition at 85, but its presence might help us identify those who are less affected by it. We hope to identify genes or other protective factors for cogitive decline by focusing on cognitively healthy very old people who are more likely to carry protective factors."
SOURCE:
The Mount Sinai Health System is New York City's largest integrated delivery system encompassing seven hospital campuses, a leading medical school, and a vast network of ambulatory practices throughout the greater New York region. For more information, visit http://www.mountsinai.org
How do lemon balm, rosemary, lavender and other aromas affect people with dementia? Studies show surprising benefits - they may beat out drugs for controlling many of the symptoms of even severe dementia. See the facts put together by authoritative NutritionFacts.org .
Improving cognitive performance with aromatherapy in young healthy volunteers is one thing, but how about where it really matters?
This group of Japanese researchers had this pie-in-the-sky notion that maybe certain smells could lead to “nerve rebirth” in Alzheimer’s patients. Twenty years ago, to even raise such a possibility as a hypothetical was heretical! Everybody knew that the loss of neurons is “irreversible.” In other words, “dead [nerve cells] are not replaced”—an important factor in neurodegenerative diseases. That’s what I was taught; that’s what everyone was taught, until 1998.
Patients with advanced cancer volunteered to be injected with a special dye that’s incorporated into the DNA of new cells. On autopsy, the researchers then went hunting for nerve cells in the brains that lit up. And, there they were, new nerve cells in the brain that didn’t exist just days or months before, demonstrating “that cell genesis occurs in human brains and [that] the human brain retains the potential for self-renewal throughout life.” Something we can take comfort in.
Still doesn’t mean smells can help, but an aromatherapy regimen of rosemary, lemon, lavender, and orange was attempted for a month. Here’s the trajectory of their ability to form abstract ideas, and their cognitive function starting six weeks before the treatment, showing a rather steady decline until they reversed after the aromatherapy. The researchers conclude that aromatherapy may be efficacious and “have some potential for improving cognitive function”—all, of course, without any apparent side effects.
What about severe dementia? We always hear about the cognitive deficits, but “more than [half] of patients with dementia experience behavioral or psychiatric symptoms.” Thorazine-type antipsychotic drugs are often prescribed, even though they appear to be particularly dangerous in the elderly. But hey, it’s easier to just prescribe a drug than offer “nonpharmacological alternatives,” such as aromatherapy—rubbing a lemon balm-infused lotion on their arms and face twice daily, compared to a lotion without the scent. Everybody got rubbed, but in the lemon balm group, “significant improvements…in…agitation…,…(shouting, screaming), and physical aggression.” And improved quality-of-life indicators—less socially withdrawn, more engagement in constructive activities. That’s important, because when you give the antipsychotics, patients become more withdrawn, less engaged; it’s like a chemical restraint. Yeah, the drugs can reduce agitation too, but that may just be because you’re effectively knocking the person out.
So, “aromatherapy with [lemon] balm…is safe, well tolerated,…highly efficacious, with additional benefits on key quality of life parameters. These findings clearly indicate the need for longer-term multicenter trials.” But we never had any, until—never. We still don’t have any. This study was back in 2002 and still nothing, but is that a surprise? Who’s going to fund such a study? Big Balm?
As professional sports teams battle lawsuits for dementia caused by concussion, new research shows damage to the brain can persist for decades after a head trauma. Learn why. Find out what to do.
"Even when you are symptom-free, your brain may still not be back to normal," says Dr. Maryse Lassonde,a neuropsychologist and the scientific director of the Quebec Nature and Technologies Granting Agency. Lassonde, whose work is supported by the Canada Foundation for Innovation, was a consultant with the Montreal Canadiens hockey team, treating players with concussions for 15 years. She simultaneously undertook research into the effects of concussions on children and young athletes as well as older athletes.
A concussion is traumatic brain injury that changes the way your brain functions. When the skull is jolted or impacted by a hard surface, the brain shifts, slamming against the skull, causing damage and swelling to the brain. If treated correctly, brain will heal. But if not, results can be deadly.
To study the effects of concussions, Lassonde had athletes perform specific visual and auditory tasks and also mapped their brains with the help of EEG and MRI equipment, in addition to testing brain chemistry. Her research demonstrates that brain waves remain abnormal in young athletes for two years following a concussion, and atrophy occurs in the motor pathways of the brain following a hit.
The results of her work, which have been published in the journals Brain and Cerebral Cortex, have important implications for the regulation of amateur and professional sports, the treatment of players and the importance of preventing violence in hockey and football.
"That tells you that first of all, concussions lead to attention problems, which we can see using sophisticated techniques such as the EEG," says Lassonde. "This may also lead to motor problems in young athletes."
The long-term effects in older former athletes are even more persistent.
By studying older athletes who suffered their last concussion 30 years earlier, and comparing them to healthy peers who had not experienced concussions, Lassonde discovered those who had suffered a head trauma had memory and attention deficits and motor problems similar to the early symptoms of Parkinson's disease. Further testing of these older athletes turned up a thinning of the cortex in the same regions of the brain that Alzheimer's disease usually affects.
"This thinning correlated with memory decline and attention decline," Lassonde says.
In addition to the recovery time required following a concussion, adds that young players who return to their sport too early and suffer a second concussion risk serious brain damage or death.
"If a child or any player has a concussion, they should be kept away from playing or doing any mental exercise until their symptoms abate," Lassonde says. "Concussions should not be taken lightly. We should really also follow former players in clinical settings to make sure they are not ageing prematurely in terms of cognition."
WHAT TO DO AFTER A CONCUSSION
Getting Better: Tips for Adults
Get plenty of sleep at night, and rest during the day.
Avoid activities that are physically demanding (e.g., heavy housecleaning, weightlifting/working-out) or require a lot of concentration (e.g., balancing your checkbook). They can make your symptoms worse and slow your recovery.
Avoid activities, such as contact or recreational sports, that could lead to another concussion. (It is best to avoid roller coasters or other high speed rides that can make your symptoms worse or even cause a concussion.)
When your health care professional says you are well enough, return to your normal activities gradually, not all at once.
Because your ability to react may be slower after a concussion, ask your health care professional when you can safely drive a car, ride a bike, or operate heavy equipment.
Talk with your health care professional about when you can return to work. Ask about how you can help your employer understand what has happened to you.
Consider talking with your employer about returning to work gradually and about changing your work activities or schedule until you recover (e.g., work half-days).
Take only those drugs that your health care professional has approved.
Do not drink alcoholic beverages until your health care professional says you are well enough. Alcohol and other drugs may slow your recovery and put you at risk of further injury.
Write down the things that may be harder than usual for you to remember.
If you’re easily distracted, try to do one thing at a time. For example, don’t try to watch TV while fixing dinner.
Consult with family members or close friends when making important decisions.
Do not neglect your basic needs, such as eating well and getting enough rest.
Avoid sustained computer use, including computer/video games early in the recovery process.
Some people report that flying in airplanes makes their symptoms worse shortly after a concussion.
Getting Better: Tips for Children
Parents and caregivers of children who have had a concussion can help them recover by taking an active role in their recovery:
Having the child get plenty of rest. Keep a regular sleep schedule, including no late nights and no sleepovers.
Making sure the child avoids high-risk/ high-speed activities such as riding a bicycle, playing sports, or climbing playground equipment, roller coasters or rides that could result in another bump, blow, or jolt to the head or body. Children should not return to these types of activities until their health care professional says they are well enough.
Giving the child only those drugs that are approved by the pediatrician or family physician.
Talking with their health care professional about when the child should return to school and other activities and how the parent or caregiver can help the child deal with the challenges that the child may face. For example, your child may need to spend fewer hours at school, rest often, or require more time to take tests.
Sharing information about concussion with parents, siblings, teachers, counselors, babysitters, coaches, and others who interact with the child helps them understand what has happened and how to meet the child’s needs.
The Canada Foundation for Innovation The Canada Foundation for Innovation gives researchers the tools they need to think big and innovate. By investing in state-of-the-art facilities and equipment in Canada's universities, colleges, research hospitals and non-profit research institutions, the CFI is helping to attract and retain the world's top talent, to train the next generation of researchers, to support private-sector innovation and to create high-quality jobs that strengthen the economy and improve the quality of life for all Canadians. For more information, visit innovation.ca.
Caregivers, and healthcare professionals,here is some great information Here is a great dementia resource for caregivers and healthcare professionals, Your residents will love the Amazon Kindle Fire Here is information on being the best caregiver you can be Here is a way for nurses administrators, social workers and other health care professionals to get an easyceu or two Follow alzheimersideas on twitter Ted Talks What do people with dementia wish for? Often, it’s comfort, respect & love. Dr. BJ Miller shares deep thoughts on creating a dignified, graceful life for patients nearing the end of life. Take the time to savor this moving talk.
0:12Well, we all need a reason to wake up.For me, it just took 11,000 volts.
0:26One night, sophomore year of college,just back from Thanksgiving holiday,a few of my friends and I were horsing around,and we decided to climb atop a parked commuter train.It was just sitting there, with the wires that run overhead.Somehow, that seemed like a great idea at the time.We'd certainly done stupider things.I scurried up the ladder on the back,and when I stood up,the electrical current entered my arm,blew down and out my feet, and that was that.Would you believe that watch still works?Takes a licking!
1:08(Laughter)
1:09My father wears it now in solidarity.
1:14That night began my formal relationship with death -- my death --and it also began my long run as a patient.It's a good word.It means one who suffers.So I guess we're all patients.
1:30Now, the American health care systemhas more than its fair share of dysfunction --to match its brilliance, to be sure.I'm a physician now, a hospice and palliative medicine doc,so I've seen care from both sides.And believe me: almost everyone who goes into healthcarereally means well -- I mean, truly.But we who work in it are also unwitting agentsfor a system that too often does not serve.
2:02Why?Well, there's actually a pretty easy answer to that question,and it explains a lot:because healthcare was designed with diseases, not people, at its center.Which is to say, of course, it was badly designed.And nowhere are the effects of bad design more heartbreakingor the opportunity for good design more compellingthan at the end of life,where things are so distilled and concentrated.There are no do-overs.
2:41My purpose today is to reach out across disciplinesand invite design thinking into this big conversation.That is, to bring intention and creativityto the experience of dying.We have a monumental opportunity in front of us,before one of the few universal issuesas individuals as well as a civil society:to rethink and redesign how it is we die.
3:18So let's begin at the end.For most people, the scariest thing about death isn't being dead,it's dying, suffering.It's a key distinction.To get underneath this, it can be very helpfulto tease out suffering which is necessary as it is,from suffering we can change.The former is a natural, essential part of life, part of the deal,and to this we are called to make space, adjust, grow.It can be really good to realize forces larger than ourselves.They bring proportionality,like a cosmic right-sizing.After my limbs were gone,that loss, for example, became fact, fixed --necessarily part of my life,and I learned that I could no more reject this fact than reject myself.It took me a while, but I learned it eventually.Now, another great thing about necessary sufferingis that it is the very thingthat unites caregiver and care receiver --human beings.This, we are finally realizing, is where healing happens.Yes, compassion -- literally, as we learned yesterday --suffering together.
4:55Now, on the systems side, on the other hand,so much of the suffering is unnecessary, invented.It serves no good purpose.But the good news is, since this brand of suffering is made up,well, we can change it.How we die is indeed something we can affect.Making the system sensitive to this fundamental distinctionbetween necessary and unnecessary sufferinggives us our first of three design cues for the day.After all, our role as caregivers, as people who care,is to relieve suffering -- not add to the pile.
5:41True to the tenets of palliative care,I function as something of a reflective advocate,as much as prescribing physician.Quick aside: palliative care -- a very important field but poorly understood --while it includes, it is not limited to end of life care.It is not limited to hospice.It's simply about comfort and living well at any stage.So please know that you don't have to be dying anytime soonto benefit from palliative care.
6:12Now, let me introduce you to Frank.Sort of makes this point.I've been seeing Frank now for years.He's living with advancing prostate cancer on top of long-standing HIV.We work on his bone pain and his fatigue,but most of the time we spend thinking out loud together about his life --really, about our lives.In this way, Frank grieves.In this way, he keeps up with his losses as they roll in,so that he's ready to take in the next moment.Loss is one thing, but regret, quite another.Frank has always been an adventurer --he looks like something out of a Norman Rockwell painting --and no fan of regret.So it wasn't surprising when he came into clinic one day,saying he wanted to raft down the Colorado River.Was this a good idea?With all the risks to his safety and his health, some would say no.Many did, but he went for it, while he still could.It was a glorious, marvelous trip:freezing water, blistering dry heat, scorpions, snakes,wildlife howling off the flaming walls of the Grand Canyon --all the glorious side of the world beyond our control.Frank's decision, while maybe dramatic,is exactly the kind so many of us would make,if we only had the support to figure out what is best for ourselves over time.
7:48So much of what we're talking about today is a shift in perspective.After my accident, when I went back to college,I changed my major to art history.Studying visual art, I figured I'd learn something about how to see --a really potent lesson for a kid who couldn't changeso much of what he was seeing.Perspective, that kind of alchemy we humans get to play with,turning anguish into a flower.
8:20Flash forward: now I work at an amazing place in San Franciscocalled the Zen Hospice Project,where we have a little ritual that helps with this shift in perspective.When one of our residents dies,the mortuary men come, and as we're wheeling the body out through the garden,heading for the gate, we pause.Anyone who wants --fellow residents, family, nurses, volunteers,the hearse drivers too, now --shares a story or a song or silence,as we sprinkle the body with flower petals.It takes a few minutes;it's a sweet, simple parting image to usher in grief with warmth,rather than repugnance.Contrast that with the typical experience in the hospital setting,much like this -- floodlit room lined with tubes and beeping machinesand blinking lights that don't stop even when the patient's life has.Cleaning crew swoops in, the body's whisked away,and it all feels as though that person had never really existed.Well-intended, of course, in the name of sterility,but hospitals tend to assault our senses,and the most we might hope for within those walls is numbness --anesthetic, literally the opposite of aesthetic.I revere hospitals for what they can do; I am alive because of them.But we ask too much of our hospitals.They are places for acute trauma and treatable illness.They are no place to live and die; that's not what they were designed for.
10:09Now mind you -- I am not giving up on the notionthat our institutions can become more humane.Beauty can be found anywhere.I spent a few months in a burn unitat St. Barnabas Hospital in Livingston, New Jersey,where I got really great care at every turn,including good palliative care for my pain.And one night, it began to snow outside.I remember my nurses complaining about driving through it.And there was no window in my room,but it was great to just imagine it coming down all sticky.Next day, one of my nurses smuggled in a snowball for me.She brought it in to the unit.I cannot tell you the rapture I felt holding that in my hand,and the coldness dripping onto my burning skin;the miracle of it all,the fascination as I watched it melt and turn into water.In that moment,just being any part of this planet in this universe mattered more to methan whether I lived or died.That little snowball packed all the inspiration I neededto both try to live and be OK if I did not.In a hospital, that's a stolen moment.
11:35In my work over the years, I've known many peoplewho were ready to go, ready to die.Not because they had found some final peace or transcendence,but because they were so repulsed by what their lives had become --in a word, cut off, or ugly.There are already record numbers of us living with chronic and terminal illness,and into ever older age.And we are nowhere near ready or prepared for this silver tsunami.We need an infrastructure dynamic enough to handlethese seismic shifts in our population.Now is the time to create something new, something vital.I know we can because we have to.The alternative is just unacceptable.And the key ingredients are known:policy, education and training,systems, bricks and mortar.We have tons of input for designers of all stripes to work with.
12:48We know, for example, from researchwhat's most important to people who are closer to death:comfort; feeling unburdened and unburdening to those they love;existential peace; and a sense of wonderment and spirituality.
13:07Over Zen Hospice's nearly 30 years,we've learned much more from our residents in subtle detail.Little things aren't so little.Take Janette.She finds it harder to breathe one day to the next due to ALS.Well, guess what?She wants to start smoking again --and French cigarettes, if you please.Not out of some self-destructive bent,but to feel her lungs filled while she has them.Priorities change.Or Kate -- she just wants to knowher dog Austin is lying at the foot of her bed,his cold muzzle against her dry skin,instead of more chemotherapy coursing through her veins --she's done that.Sensuous, aesthetic gratification, where in a moment, in an instant,we are rewarded for just being.So much of it comes down to loving our time by way of the senses,by way of the body -- the very thing doing the living and the dying.
14:25Probably the most poignant roomin the Zen Hospice guest house is our kitchen,which is a little strange when you realizethat so many of our residents can eat very little, if anything at all.But we realize we are providing sustenance on several levels:smell, a symbolic plane.Seriously, with all the heavy-duty stuff happening under our roof,one of the most tried and true interventions we know of,is to bake cookies.As long as we have our senses --even just one --we have at least the possibility of accessingwhat makes us feel human, connected.Imagine the ripples of this notionfor the millions of people living and dying with dementia.Primal sensorial delights that say the things we don't have words for,impulses that make us stay present --no need for a past or a future.
15:41So, if teasing unnecessary suffering out of the system was our first design cue,then tending to dignity by way of the senses,by way of the body -- the aesthetic realm --is design cue number two.Now this gets us quickly to the third and final bit for today;namely, we need to lift our sights, to set our sights on well-being,so that life and health and healthcarecan become about making life more wonderful,rather than just less horrible.Beneficence.
16:21Here, this gets right at the distinctionbetween a disease-centered and a patient- or human-centered model of care,and here is where caring becomes a creative, generative,even playful act."Play" may sound like a funny word here.But it is also one of our highest forms of adaptation.Consider every major compulsory effort it takes to be human.The need for food has birthed cuisine.The need for shelter has given rise to architecture.The need for cover, fashion.And for being subjected to the clock,well, we invented music.So, since dying is a necessary part of life,what might we create with this fact?By "play" I am in no way suggesting we take a light approach to dyingor that we mandate any particular way of dying.There are mountains of sorrow that cannot move,and one way or another, we will all kneel there.Rather, I am asking that we make space --physical, psychic room, to allow life to play itself all the way out --so that rather than just getting out of the way,aging and dying can become a process of crescendo through to the end.We can't solve for death.I know some of you are working on this.
17:51(Laughter)
17:56Meanwhile, we can --
17:57(Laughter)
17:59We can design towards it.Parts of me died early on,and that's something we can all say one way or another.I got to redesign my life around this fact,and I tell you it has been a liberationto realize you can always find a shock of beauty or meaningin what life you have left,like that snowball lasting for a perfect moment,all the while melting away.If we love such moments ferociously,then maybe we can learn to live well --not in spite of death,but because of it.Let death be what takes us,not lack of imagination.
