Supportive Care Bulletin
Helpful tips for family caregivers
In this issue we address three tough caregiving situations: when a loved one has dementia, long-distance caregiving, life-threatening conditions.
- Is your parent's behavior embarrassing?
- Technology for health and safety
- What does "prognosis" mean?
Is your parent's behavior embarrassing?
What do you do when sweet Mom starts cursing angrily?
When straitlaced Dad makes off-color remarks?
In persons with dementia, these behaviors are not on purpose.
They are caused by the brain changes of the disease. If you can’t find humor in the situation, draw on your patience. Believe it or not, your relative is doing his or her best.
Consider these strategies to reduce or discourage outbursts:
- Stay calm. Your relative is likely frightened or uncomfortable. Try to respond with curiosity. See if you can figure out why they are behaving as they are.
- Redirect attention. When embarrassing behaviors occur, try focusing your relative’s attention on something else: “Dad, look! They’ve got chocolate cream pie today.” Or, “Mom, I almost forgot to tell you….”
- Simplify the situation. If Mom is acting out, perhaps it’s the environment. Lots of people? Too much noise or stimulation? Do what you can to go to a place that is quiet, calm, and uncluttered.
- Identify (and avoid) common triggers. Angry lashing out is often a sign of too much to handle. Look for patterns. Do they occur when you are in a rush? When there is a lot to do? Try slowing down. And keep instructions simple, one step at a time.
- Go along when you can. If Mom thinks her babies need her at home, or Dad wants to go to work, it’s harmless. No need to argue. Trying to persuade your loved one that he or she is wrong will only result in anger and mistrust of you.
Check with the doctor. If these behaviors are new, perhaps dementia is at the source, or there is a problem with hearing or vision. Unexpected outbursts in people known to have dementia can also be caused by pain. An undiagnosed bladder infection is a common culprit.Return to top
Technology for health and safety
There are many new devices to assist family caregivers, from wearable devices, to sensors in the home, and text or phone reminders.
Monitoring safety. Although monitoring cannot prevent a problem, it can quickly get help to the scene.
- Fall detection. One of the biggest threats to elder independence and safety is a fall. Many Personal Emergency Response Systems (PERS) are available. Most involve a wearable device with a button for your loved one to press if he or she falls. Others automatically sense a fall. Calls go out to preappointed nearby friends or professionals (including 911) to check on your relative.
- Disrupted routines. Wireless sensors or video cams placed at foot level for privacy can monitor and confirm your relative’s daily routines. If your loved one has not gotten up at the usual time or is making too-frequent trips to the bathroom, something may be amiss. Sensor systems can be set to alert you by text or phone.
- Safety out and about. Modified cell phones and apps are available that serve as personal alert systems. These systems help when falls happen, or for any time your loved one is concerned about safety. With these systems, though, your relative needs to be conscious and in a place that has good cell reception.
- Automated pillboxes. Electronic, locked dispensers “beep” and provide presorted pills at the correct time of day. Some can trigger an automated phone call to your relative as a reminder to take the pills. And some will call, text, or email you if the pills have not been removed from the dispenser within a set number of hours.
- Refill reminders. Talk to your relative’s pharmacy or Part D (prescription) insurer. Many companies now have online tracking that allows you to set up automatic refills. Others send refill reminders by text or email.
What does "prognosis" mean?
It’s natural to wonder how bad a serious condition is. Will treatment be effective? The prediction of recovery, in medical terms, is called a “prognosis.”
Many conditions are difficult to predict. Cancers, on the other hand, run a fairly expectable course. A cancer prognosis, for instance, depends on
- the cancer. What type of cancer is it? What is its stage (size)? Grade (aggressiveness)? Where is it?
- the patient. What is the person’s age and general health? How likely is he or she to bounce back from the stress of treatment?
A doctor can estimate treatment outcome by comparing your relative’s situation with the statistics of others in similar circumstances.
Prognosis is most often described in terms of survival rates five years after diagnosis. For example, the doctor might say that people who undergo a particular treatment have an 87% five-year survival rate. That means that 87 of every 100 patients who receive that treatment are still alive five years afterward.
At best, a prognosis is an educated guess. It’s an average across a lot of people. Bear in mind, no two people respond in exactly the same way to any one treatment.
For some people, hearing a prognosis helps
- resolve uncertainty. Having clear-cut information can empower and motivate by revealing exactly what you’re dealing with.
- define treatment options. Comparing survival rates can help people make treatment decisions, including the option of no treatment.
- promote the best use of time. Knowing the survival rate can be the nudge to address lingering family issues or legal matters. And to move forward with what’s still on the bucket list.
For other people, discussion of prognosis is disturbing, even frightening. Some medical offices employ nurses or social workers to help patients cope with the emotional side of a prognosis discussion. Before talking about survival rates, though, determine your relative’s preference for how much he or she wants to know.Return to top