Caregivers have the best intentions at heart. We all want to savor those parts of the relationship with our loved one that we’ve known for decades. But when a loved one has dementia, the disease interferes more and more often, hiding the person we remember. It can be so frustrating to try to enjoy one of your tried-and-true Together Rituals to catch a glimpse of the old “normal” and familiar – movie night, a walk in the park, or maybe a game of dominoes over root beer floats – but instead discover your loved one is no longer capable of functioning in the old relationship.
Maybe your father can no longer have the deep conversations you enjoyed for decades or give you the advice that once proved he knew you better than you knew yourself. Maybe your mother has lost the ability to keep track of the score or remember the rules of contract bridge. Maybe your brother’s motor skills have betrayed him on the shuffleboard court and the match must be aborted. Your loved one is frustrated, angry, or sad because of the slow, decline of their abilities and the loss of independence that comes with dementia.
You may feel sorrow at the erosion of the relationship you cherished. You may feel anger at dementia. You may indulge self-criticism for not knowing how to provide “perfect” care. You may feel anxious because you are uncertain how to transform what has become a negative situation into a more positive one. I hear this from my clients frequently. I experienced them myself on my dementia caregiver journey.
There is no “perfect” care.
If you are aspiring to perfect care, please stop. Of course your intentions are to provide the best for your loved one if you are a dementia caregiver. But “perfect” is a destination you can never reach and attempting to do so will exhaust you both on a path to nowhere. It’s impossible to win a game when the rules are always changing, after all. The progressive decline of dementia means the path is always changing, the rules are always changing, the destination is shifting, and the game cannot be won.
Instead, I encourage my clients to point their sites toward a mutual state of well-being for caregivers and their person with dementia. Because when you try futilely, you damage your own well-being. This is an expense caregivers cannot afford as you navigate dementia. This state of mutual well-being is a state where both of you can can co-exist with dementia more peacefully. As a caregiver, how do you gain your bearings for this new destination?
Just as a hiker would use a compass to chart his course toward a destination that may likely fall out of view during the trek, dementia caregivers can use a compass to find their way to this state of well-being. It’s the Dementia Caregiver Compass.
A compass provides direction. Each of the four points is equally important to navigation. In order to head north, we must know all the directions that are not north. The Dementia Caregiver Compass has four points, all equally important.
N stands for Needs
Humans share several universal needs. Some needs are tangible, like food, shelter, and warmth. Others are intangible, like belonging, esteem, and a sense of purpose. These needs are vital to our surviving and thriving. They do not diminish with age, and they do not diminish with dementia.
E stands for Emotions
Every human need has emotions associated with it – positive and negative. When our needs go unfulfilled, we experience negative emotions. And when our needs are met, we experience positive emotions. Without adequate shelter, we feel agitation or distress. Without safety, fear. But when these needs are met, we feel calm and confident.
When thinking skills are damaged by dementia, logic no longer applies. A person with dementia does not think logically, so facts no longer matter. But emotions always will, because they are so closely governed by our human needs. The caregiver’s main purpose is to transform negative emotions into positive ones. If caregivers can focus on attention to the person’s emotions, well-being can be restored or improved.
W stands for Will
Our survival instincts drive us to fulfill our unmet needs. In order to do so, we must have mastery. Mastery is achieved when there is a balance between will, power, and ability. We have to have the desire to do something to meet the need, the power to act on our own behalf, and the ability to complete the actions necessary to fulfill the need.
But dementia destroys mastery by creating an imbalance of will, power, and ability. Will remains very strong, because human needs – tangible and intangible – do not diminish with dementia. Yet power and ability progressively decline.
S stands for Symptoms
The longer needs go unmet, the greater the human’s will to attend to the need. So will becomes even more exaggerated, often escalating situations. In these situations, it is the symptoms of dementia that cause these accelerating spirals.
The person living with dementia is using whatever cognitive skills yet remain in order to satisfy their need. He or she has fewer choices available to work with as the disease progresses.
Other training programs speak of “challenging behaviors” or “undesirable behaviors” but I caution my clients against thinking on these terms. If we frame these escalations around behaviors we leave ourselves open to the idea that the person with dementia is choosing their thoughts, feelings, and actions. That they could “do it” differently, somehow, yet don’t. But this idea is misguided and threatens healthy, positive, person-centered care.
I encourage my clients to approach these situations as symptom-related. I encourage caregivers to blame the symptoms, not the person living with dementia.
My client education and mentoring is based on the principles of the Dementia Caregiver Compass.