Imagine a marathon you did not sign up for, and yet, you are told you have to run the race until the end. To add to the challenge, you are to carry a heavy load on your shoulders, and the load will get heavier and heavier as the race goes on. This is what the dementia journey is like for most family caregivers... Keeping with the marathon metaphor, what is needed is a way for caregivers to develop the strength that will be required of them over the long run. The Presence Care program is a new, integrative approach that combines mindfulness and compassion practices with understanding of the dementia experience. Its goals are to ease care burden and stress, and to help foster greater well-being for both caregivers and the persons in their care. It goes like this:
1. Understand dementia.
The more we can learn about the disease, the better equipped we are to understand what the person needs and why they are behaving in certain ways. Dementia affects different parts of the brain, each responsible for different cognitive domains such as memory, language, behavior, executive function, or movement. Not all dementias affect the same domains, and we need to know which ones are impacted and what that means in terms of the person's interactions with us. For instance someone struggling with executive function will have trouble initiating tasks and will be dependent on others to get engaged into activities. We also need to guard from our tendency to position the person with dementia as less able than they really are. Many abilities are preserved throughout dementia. In many cases, emotional intelligence is even heightened.
2. Practice mindfulness.
Using Jon Kabat-Zinn's definition, mindfulness is being fully aware of the present moment, on purpose, and without judgment. The validity of mindfulness as a powerful stress-reduction tool is no longer in question. That benefit alone makes it worthwhile for stressed out dementia caregivers to undertake mindfulness practice. The other, equally important reason has to do with the way in which mindful attention allows us to notice what is happening moment to moment, that may impact the person's experience. What do we bring into the situation? What do we hear? What do we see? What is the person telling us with her body language? Armed with that awareness, we then have a chance to act in a way that is most beneficial to the person. Of course, remembering to be mindful does not come naturally. We need to train our mind to come back to the present moment. This is done by setting time aside to practice every day. Even only five minutes of sitting and paying attention to the breath can make a big difference.
3. Respond with compassion.
Compassionate care is a natural outcome of mindfulness practice. In the mindful noticing of stress for the other person lies the seed for our compassionate response. I worked once with an elder man with Parkinson's who was moved to tears once his wife learned to model her steps after his. It took them both a good ten minutes to walk the twenty feet from my office to their car. Mindful "pacing with" is a wonderful practice that helps us shift from trying to get somewhere fast to becoming fully present for ourselves and the other person, while walking together. Such walking is an example of compassionate response.
I would like to end with a note on self-compassion. With greater awareness and deeper understanding of the person's needs often comes the painful realization of our own inadequacies, and of times before when we may have unintentionally hurt the person in our care. We address this by giving ourselves frequent self-compassion breaks, a practice developed by Kristin Neff. First, we recognize the suffering in our heart: "This is painful." Then we see that suffering as a part of the human condition: "We all struggle in our lives." Third, we extend kindness to ourselves: "May I forgive myself." The dementia care journey is an ongoing adult education in mindfulness and love. If we learn to view every one of our dementia care experiences as just that, we will do ourselves a great service, and we will be more free to give the person what they need.
For guided mindfulness practices, you may listen to free podcasts on the Presence Care Project website.