The Dementia Dilemma: A Pastoral Response
“I got to see him this past week!”
“They are working on a way for family to safely come in soon.”
These are comments I’m hearing recently from people in regard to their loved ones in living facilities of various levels. They are, of course, reflecting on their situation in light of the pandemic-related restrictions. Sadly, I often hear strikingly different sentiments as well.
“It’s gotten worse and will only continue to do so.”
“She doesn’t seem to know us anymore.”
I am seeing symptoms in dementia and cognitive impairment increase alongside extended isolation, a process which often distresses families.
This situation is close to my heart and is also an area where I feel the most helpless. Can you relate in your own ministries? My guess is you most likely can. I am sure we have all struggled against new obstacles that have left us feeling ill-equipped or simply sidelined. Before continuing, my request is that you take the time to acknowledge that weight if you haven’t already. I hope you will be kind to yourself as you accept your own limitations. These limitations are a connecting thread of our current experience, and we are all doing the best we can.
In this post, I want to offer some concrete suggestions on how to provide spiritual care and support to members of your communities whose loved ones are affected by dementias/cognitive impairments and/or in living facilities during this time of heightened precautions. There are no easy answers, and none of us occupy easy space in this situation. However, we remain called to work for the good of all.
So, how do we move forward? I would like to frame my thoughts with two questions:
Where is God showing up?
What is our response?
I always carry the first question with me, because it reminds me that I am not solely responsible for being the solution in this season. In addition, the perspective of this question pushes me out of my cognitive ruts and encourages me to consider new possibilities. I will not try to answer this question here, because I am not in your setting, but I simply want to highlight it as a priority. I find that sometimes God acts through grabbing our attention.
The second question is where I want to offer some content: a pastoral approach, some clinical insight, and a crucial spiritual care question.
Many of us are familiar with Carl Roger’s therapeutic approach, and those of us focusing on the ministry modality of pastoral care are fairly immersed in it for better or worse. Roger believed that one of the necessary personal characteristics of a therapist (or minister) was an “unconditional, positive regard for others,” as well as a commitment to empathetic understanding. [1] In other words, he/she should enter into a relationship setting aside (for the moment) personal bias and committing to seeing the other as a valuable person with perspectives worth understanding. I believe this is crucial when addressing the pandemic with people in our communities. Like other aspects of our healthcare system, COVID-19 has become enmeshed with political discourse so that there are now multiple layers threatening to stall civil conversation. Ministers have a wonderful opportunity to hit the pause button on our own opinions, to welcome their perspective first, and to debrief the anxiety surrounding their opinions. This is an indispensable first step for families struggling with isolation and frustration.
But what about those in the facilities and/or struggling with the disease? Here are a few quick insights that I pray are helpful as you counsel and guide families in your communities:
Try to schedule FaceTime visits earlier in the day. Those with dementia often experience “sundowning,” where symptoms become worse throughout the day. FaceTiming with a sundowning loved one can be very distressing!
Make sure loved ones have plenty of natural light in their room, which can sometimes lessen confusion and increase engagement.
For those in facilities, ask if the activities director can coordinate having music or audio books playing in the room for comfort and stimulation.
Focus on what is still possible. Not to ignore hard realities but simply to channel our creative energies to what is in our control.
I don’t pretend that these are perfect solutions. They’re simply an attempt to navigate exceedingly difficult waters.
Finally, I want to introduce what I see as a crucial spiritual care question, “What do I need to know about you as a person to give you the best care possible?” [2] Now, I know that sounds clinical, but I want to emphasize the sentiment. You can creatively reword it as you see best. Asking this open-ended question to families creates space for numerous constructive conversations including overlooked details, returning sense of control, and excitement at telling meaningful stories. Of course, sometimes you get no significant answer, and that is okay. Our goal is to simply provide a bit of stability and to welcome people’s struggles as Christ welcomes us.
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[1] Brent Peery, Outcome Oriented Chaplaincy: Perspective, Intentional, and Effective Caring, (London, UK: Jessica Kingsley Publishers, 2020), 29.
[2] “Dignity in Care,” https://dignityincare.ca/en/. https://dignityincare.ca/en/toolkit.html
