For those who care for Persons Living With Dementia (PLWDs), you’ve seen how quickly things can get out of hand, as the person in your care faces an obstacle and becomes upset and frustrated. This is common, and it’s a challenge for the care partner—because often, an escalation with the PLWD leads to an escalation in frustration in the care partner. When that happens, think slow.
Simple situations spiral out of control frequently because the care partner’s instinctive reaction is to try to move quickly to restore calmness. Ironically, this can make things worse because the last thing you need in a situation where they’re no threat of harm is urgency. So think slow.
This is a central point of the teachings of Teepa Snow, whose “Positive Approach To Dementia Care™” is the basis for the care I teach. When a situation becomes negative, a way to bring things back to calmness is to take the time to re-frame it.
So, instead of the PLWD asking about the same thing over and over, getting more frustrated as the care partner becomes more frustrated, switch things up.
The care partner can re-frame the situation by asking the PLWD the same question. This can change the conversation, slowing it down, so the PLWD has to think about an answer. Everyone has to think slow, so the emotion of the moment changes. And the stress level reduces, giving everything a chance to re-set.
It’s important to remember—both for professional and family care partners—that dementia takes away the ability to retain the most immediate information necessary to handle what’s happening right now. Without knowing these cues to carry on a conversation or keep to a task, a PLWD is at an extreme disadvantage.
So help out by thinking slow, and slowing the pace of life. It makes more lyght bulb moments happen.
Think about what happens when you have too much going on at one time. The TV’s blaring. Kids are asking permission to do things you’d rather they didn’t. The phone’s ringing and you’re getting a text. And you only have another 30 minutes to get dinner ready. Pretty overwhelming, isn’t it?
Now think about doing this when you’re not at the top of your game, or if you’re sick with the flu. You can see how much more difficult that can be, and how you could get overcome by the situation pretty easily. That’s what can happen with a person living with dementia in everyday situations—situations that you wouldn’t consider stressful. But to an individual whose mental capabilities have been diminished by the disease, anything unexpected or non-routine can be daunting.
So it’s important for care partners to be aware that even though the person living with dementia is seeming to function fine one moment, he or she may be stressed and overwhelmed the next. A classic example of this is “sundowner’s” syndrome, where the person living with dementia becomes more agitated and confused late in the day, as the sun goes down and the light around them changes.
So what should you do when this happens? Here are some possible responses:
Cut back on the stimuli around the person. If there’s a lot going on with other people, animals, or electronics, see about reducing or eliminating some of these distractions.
Remain calm yourself. If the person living with dementia sees the care partner getting upset, it only compounds the situation. Keep your cool.
Refocus attention on an activity that the person living with dementia enjoys, one that tends to be calming. This redirection can help settle the person and allow a “recharge” so the rest of the day is easier.
Remind yourself that what’s manageable for you may be way too much for the person under your care. When you look at the world from that perspective, you can see paths forward that can help both of you.
One typically doesn’t associated grief with someone who’s still living, and caregivers of persons living with dementia my find themselves surprised at how they experience sudden feelings of grief. It’s a common occurrence. Because even though you may not have physically lost a loved one or a patient, you do see the loss of who that person used to be before dementia.
That’s a significant human loss. And in some ways, it can be more devastating than a death, because even though you’re being a caregiver, you feel helpless as the personality of the PLWD slips away.
So if you find yourself experiencing feelings of grief, understand that it’s perfectly normal. And that you can do something about them. Face up to your grief. Realize that it’s OK to have these feelings. Think about the things that will help you cope with them. Realize that you will experience feelings of grief more than once.
Psychologists have identified five stages of grief: Denial, Anger, Bargaining, Sadness, and Acceptance. These don’t always occur in order, so if you find yourself in the midst of being upset without a clear reason, or thinking that the PLWD isn’t going through the disease, realize that it could be attributed to the grieving process. Don’t go through it alone.
Talk to others—friends, family, or support groups, for example. In the counseling I do for families and professionals, we encourage dialogue so that feelings don’t get bottled up, and so others can tell you how they managed their feelings. Realize that some people may not understand. That’s OK; these people may not have direct experience with dementia, and don’t realize the emotional impact. Don’t second guess yourself—concentrate on the things that allow you to manage and still provide care for your PLWD. And yourself. Like many aspects of dementia care, you will find yourself from time to time in uncharted territory with your own feelings. Realize that’s, for better or worse, part of the process. When you do, managing gets easier.
Caregiver stress is common among people who care for People Living With Dementia. Dr. Tiney Ray counsels families and professional caregivers on how to manage the stress. In this video, she shares some key ideas.
During the pandemic, we often heard about how comorbidities (other diseases or conditions) could have an impact on a person’s ability to recover from COVID-19. Public service information on comorbidities opened many people’s eyes to how a long-term condition could directly affect others.
Comorbidities are definitely something that must be taken into consideration with Persons Living With Dementia. More than 90% of people living with dementia have another health condition. In persons over the age of 65, the average person without dementia has two comorbidity conditions, while persons over 65 with dementia have an average of four comorbidities.
Common comorbidities for PLWDs include hypertension, arthritis, diabetes, depression, and cerebrovascular disease. These conditions obviously can complicate a dementia diagnosis, and complicate how to care for a PLWD. If you’re a caregiver working with someone who has comorbidities, then it’s important to understand these additional conditions and their effects.
Because it is often difficult for a PLWD to communicate if something is bothering them, you have to train yourself to look for signals that may tip off another health problem that affects your care.
For example, a PLWD who isn’t interested in a walk or a physical activity that they normally enjoy is a flag that something else might be wrong. It may be that arthritic pain is too much and the person is avoiding movement because of it. It might also signal a wave of depression. It’s a good idea to keep a record of times when the person under your care doesn’t respond normally, along with the reason if you can determine it. This can help you quickly address the comorbidity that may be interfering.
It’s also important to follow any monitoring regimens that physicians my have recommended, such as checking blood sugar levels for diabetic patients. A comorbidity can be a trigger that leads to more serious health issues. And when you’re caring for a PLWD, even seemingly minor health concerns can trigger a snowball effect that creates big problems.
Interesting fact: Over 80% of the reasons PLWD are admitted to the hospital are from comorbidities that are preventable: falls, fractures, urinary infections, and chest infections. So if you’re caring for a PLWD, don’t think you’re being over-reactive if you notice something that might be a comorbidity or a complication from a comorbidity. Fast action can stop bigger problems from happening.
Dementia Care: The Power (and Profitability) Of Teamwork
I work with numerous nursing homes, assisted living, and other health care facilities to help professionals better understand how to be better care partners to persons living with dementia (PLWD).
I use the Positive Approach to Care™ (PAC) developed by renowned Occupational Therapist Teepa Snow, which has proven to be the cutting-edge methodology for optimum dementia care training in professional settings. There are six key elements of the PAC process, and I like to stress one in particular: Collective Effort, or the power of teamwork.
We conduct workshops on this, in conjunction with the care facility. Since much of the care required for a PLWD is individual, it’s easy to fall into a mindset that one or two people should take primary responsibility for that person’s care. And while most of care may be assigned to one or two people, there are advantages to working together in a cooperative effort.
The workshop gives real-world examples of how a cooperative effort can better manage the work and stress that professional care partners experience. We emphasize how to derive fulfillment from the care process. This can lead to better care, as staff members feel more personally connected to each PLWD’s care and to their fellow care partners. Staff members become cheerleaders for each other and more responsive should one care partner need assistance. This has a significant impact on workplace contentment, which translates into less turnover, fewer extreme situations in care, and ultimately, greater profitability for the care facility.
The results can be a significant “win-win” situation for both resident care and the facility bottom line. To learn more about our workshop and the PAC process, start a conversation with me here. I’m happy to answer questions, learn more about your facility, and focus on areas where instruction can make an impact.
When I counsel families and the family members who will provide care for the Person Living With Dementia (PLWD), we talk about a lot of serious topics—how to handle inappropriate behaviors, sudden changes in behavior, and practical day-to-day issues.
Caring for a person living with dementia can be daunting, and our process gives family members the tools needed to keep everyone safe and to provide the PLWD with the best possible quality of life.
And that’s something very important to remember. Even though the PLWD has many challenges in negotiating everyday things that used to be simple, he or she also has many moments where there can be comfort, or joy, or fun. And if you’re the person’s care partner, you get to experience those, too. That’s why I stress this to everyone providing care: It’s a gift for you, too.
There are few things more noble than helping care for another human who needs help. As parents, we’re rewarded over and over again when children accomplish new things or have experiences where family members bond. That same sense of reward can be felt when helping a PLWD accomplish something that seemed difficult, or when the person experiences a moment of lucidity and can recall joy from past experiences.
You’ve done something important and meaningful for someone else. We’ve been conditioned (particularly as Americans) that we’re supposed to be independent and self-sufficient, and overcoming this perception is a key to being a good care partner. Sometimes, for a PWLD to maintain independence, it takes a little help. And if you can give that as a care partner, you should feel you’ve accomplished something—and celebrate that opportunity.
I’ve talked with many family care partners who understand that by helping a parent or spouse or other loved one, they’re giving back care that was administered to them, either as a child or as part of the family dynamic. As you understand this, the burden of care is lifted a bit.
You’re giving back. You’re creating an even stronger bond with someone dear to you. And even if the person living with dementia can’t always acknowledge this, it still is an important experience. As a care partner, it can be easy to get bogged down with the day-to-day annoyances or challenges. But when you can keep the “big picture” perspective in mind, these take a back seat to what’s really important.
Looking after someone very important in your life. If you’d like to know more about how Dr. Tiney Ray and Lyght Bulb Moments can help your family with a care partner plan and counseling,click here.
Dr. Tiney discusses communicating with someone living with dementia. She provides simple techniques to help guide care partners so they can maintain a meaningful connection with the person living with dementia.
“I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
One of the first things I stress to the care partners of people with dementia is that being a care partner can be a true gift. You are being of service to another human being who needs your help. There are fewer things that could be considered more important.
But caregiving is difficult. Even if you have accepted the task (that can take time), and even if you find it rewarding, it still can be exhausting, both mentally and physically. So you have to take care of yourself, too. You can’t help someone else if you’re not making time to rest and recharge. This isn’t easy, either. But if you don’t acknowledge the need for self care, the results can be disastrous—to yourself and your person with dementia.
Here are some suggestions that can help with your self care, and help you cope when things become difficult. Look for “escapes,” even if you have to stay in one location. These can be things as simple as reading a book or magazine, watching a TV show, or working on a craft. Work some of your pleasures into routines. That might include listening to music or trying a new recipe when preparing a meal.
Don’t sweat the small stuff. It’s almost a paradox to stress the need for routine for persons with dementia, and then say “don’t worry if little things go wrong.” But they will go wrong, and it’s important to know that. Things not going to plan isn’t a sign of failure, particularly if the person you care for is doing well overall. Give yourself credit for the things that go right. Think about gratitude. We’re not suggesting you be grateful for having to deal with a cruel disease, but it can be very valuable to acknowledge gratitude for caring for someone in need, and to give yourself credit for it. This is a reminder of why you are doing this, either as a professional who is devoting time to others, or as a family member taking responsibility for another.
Our training programs for both professional and family care partners focus on a proven Positive Approach To Care curriculum developed by Teepa Snow, which includes detailed information on self care. To learn more, click here.
“When a flower doesn’t bloom, you fix the environment in which it grows, not the flower.”- Alexander Heifer.
Let’s start with the obvious: Dementia is a tragic disease, one that typically takes years to play out. But we strongly caution people who have been diagnosed or the people who care for them that it’s a mistake to let the disease take the joy from life. It’s not that powerful.
A dementia diagnosis, however, will require you to re-think how you may approach your relationship with that person or the people around them. Surprisingly, many people discover something very valuable when they do this. The power—and the joy—of living in the moment.
Persons with dementia have bad days, but also many good ones. It is important to take advantage of the good ones, and not let them go unappreciated. This is important to both the person and the care partner. And it can deliver much happiness for all.
When you let yourself appreciate the good times, it becomes easier to handle the many challenging issues of dementia. The good times can sustain and restore you. Here are some simple techniques you can use to make the most of the joyous moments: Slow down. Acknowledge the day and the activity at hand, whether it be something special like a family event or something simple like a relaxed conversation. Build routines that encourage the person with dementia to relax. Routine is very important; it’s the out-of-the-norm situations that can lead to confusion and stress.
So with routines in place, triggers can be removed and individual happiness improved. Address immediate needs. Even with routines in place, care partners will discover that if something stands out—personal care or housekeeping—it can be important to take care of those things right away, removing a stress point and getting the person with dementia re-focused on what can be joyful. Encourage and acknowledge the person’s contributions to the activity or event. One of the most frightening elements of dementia is loss of control. So the more the person is able to contribute to an activity (even something as simple as grocery shopping), it can help alleviate these fears and boost happiness.
Even small moments and small things matter, and can make a huge difference. When you realize that, you discover joy in small places. Which is more than worthwhile.