Disruptions in Care

Disruptions can ruin our day even when we’re healthy. Traffic jams, cancelled doctor’s appointments, forgetting our keys… these things make us cranky and steal our sense of control over life. For people with dementia, disruptions in care can come with much worse consequences.  Even a short hospital stay may have a terrible impact on their fragile health.

Between the Pond and the Woods

We all crave smooth sailing, no disruptions.

Ten days ago my mom had a sudden drop in blood pressure that landed her in the hospital for observation. She was only there for two days, but the change in routine was devastating. Now she’s having problems walking and her speech has deteriorated to an all time low. I’m not sure if these skills will be restored to their previous baseline. It’s an alarming situation.

We were lucky that when Mom went into the hospital my sister was able to get a day off work and stay there while the hospital staff conducted testing and administered treatment. But the regular staff did not have much training or sensitivity regarding the dementia component of my mom’s problems. The failure to understand how dementia interacts with other medical matters can add to the patient’s stress.

A September 2013 article in Science Daily, describes a study conducted by Donna M. Fick, Distinguished Professor of Nursing at Penn State.  Professor Fick found a 32% incidence of new delirium among dementia patients who were hospitalized. Dementia patients who experienced delirium stayed in the hospital several days longer than patients without delirium, and  showed a decline in physical and mental abilities at one month follow up visits.  Fick believes, ”This study is important, as delirium is often overlooked and minimized in the hospital setting, especially in persons with dementia.”

Another study by Dr. Tamara Fong, a Harvard researcher, found that hospitalization seems to increase the chances of Alzheimer’s patients moving into a nursing home — or even dying — within the subsequent year. Although more research must be done to determine the actual cause and effect here, William Thies of the Alzheimer’s Association says ”It is perfectly clear that hospitalization is very hard on people with Alzheimer’s disease.”

There are some things families can do to minimize the impact of hospital stays:

  • Thies advises families to be alert for any new symptoms and seek care early to avoid hospitalization. It’s also better to learn to manage Alzheimer’s behavioral problems — such as hallucinations — before they escalate.
  • When a hospital stay is unavoidable, work with staff at the medical center to minimize delirium by avoiding nighttime disruptions of patient sleep, and limiting time in the emergency room.
  • When possible, a family member should stay at the hospital to reassure the patient and make sure they have familiar items like reading glasses or things that bring them comfort.

My family didn’t know all these things two weeks ago. I hope you can protect your loved ones by learning from our experience.



Forty Winks to Fight Dementia

A gift doesn’t excite me much, unless it’s something truly heartfelt or desperately needed. This week I got an incredible gift of the second type: two nights of deep, restful sleep. I never thought sleep would mean so much to me.

Between the Pond and the Woods

Don’t horse around! Get some sleep!

I have written about sleep research before, but sleep is much more meaningful when you actually get some. This week I was having a surgical procedure, so I forced myself to bed early to help my body prepare — and then recover. My sister was back on caregiver duty so I wasn’t doing extra labor for my mom. It’s impossible to put worry out of my mind for two whole days, but I tried to minimize it. Two nights of deep sleep really took the edge off my anxiety.

A New York Times article by Maria Konnikova quotes sleep researcher Maiken Nedergaard as saying, “Sleep is such a dangerous thing to do, when you’re out in the wild. It has to have a basic evolutional function. Otherwise it would have been eliminated.” Konnikova suggests that in the era when humans were living out in the natural world, sleeping would have put us at risk of “death-by-leopard-in-the-night”, something caregivers might understand. We know that when loved ones get agitated or hallucinate at night, they can create chaos that seems as dangerous as any untamed animal. But we put ourselves in danger, too, when we fail to rest our brains.

A range of studies have turned up data showing there is greater risk of Alzheimer’s disease in older adults with insomnia. The National Heart, Lung and Blood Institute has also published research linking lack of sleep to spikes in the hunger hormone ghrelin which may lead to overeating and weight gain. It’s no wonder that caregivers often end up fighting so many personal health problems — dementia can make sleep a rare commodity.

If you’re sleeping badly on a regular basis, here are some ideas that may help you get better rest. Try at least one of them, as a gift to yourself.

  • Leave all iPhones, laptops or electronic devices outside your bedroom. Nothing ruins my sleep plans like a late night email … which leads me to web surfing….that never ends when it should.
  • Set and enforce a real schedule for going to bed and getting up in the morning. Try to stick to it for at least three days and see if you rest better.
  • Resist TV for thirty minutes before you close your eyes. Televisions give off light that lowers levels of melatonin. If you need a distraction before bed, try music instead.
  • If anxiety is keeping you awake, use paper and a pen to banish it. Write your fears and worries in a small notebook for no more than 15 minutes. Then close the book (literally) and put your problems away. In most cases, there is nothing you can do to resolve thorny issues at 11 pm, so give yourself permission to stop fretting and start sleeping. You can always go back to the worry wheel tomorrow.

Sleep is essential because it appears to be the period when our brains clean themselves of accumulated waste. This garbage includes amyloid, a protein linked to the development of Alzheimer’s disease. In the NYT article, Dr. Nedergaard offers a metaphor for the role sleep plays in our lives. She tells us to consider a fish tank, “If you have a tank and no filter, the fish will eventually die.” When we sleep deeply, our cerebral cleaning system has a chance to filter the trash out of our brain so we can resume healthy lives in the morning.

It is so rare for me to sleep long and deeply twice in one week. But today I really feel the difference. The wound from my surgery is not throbbing the way it did after the procedure. My thinking is very clear and my mood is good, despite the fact that it’s a grey, rainy day. I know that the problems that tortured me last week still need solutions. But a clear mind can solve problems way better than a tired one. If you want to give yourself (and your family) a real gift, do something tonight that increases your odds of getting forty winks.