Even in the best of times, when caring for a loved one whose cognition is declining, whether due to Alzheimer’s or another type of dementia, families all struggle mightily. COVID-19 has only intensified that struggle—both to care for a loved one and to cope as a caregiver.
This past summer, as the pandemic spread worldwide, I had the privilege to teach caregivers and clinicians associated with the Lubuskie Alzheimer’s Association in Poland about how to leverage personal music to strengthen their ability to provide quality care. A few weeks after I finished presenting the course, which forms the basis of my “Beat Covid Blues with Personal Music” curriculum, I spoke with Dr. Kasia Uzar-Szcześniak, PhD, to find out how participants were progressing. This is our conversation, lightly edited for length and clarity:
DC: Kasia, how are people with dementia in Poland now being affected by Covid, and how are caregivers being impacted?
KUS: Caregivers are being strongly affected if they are caring for someone at home, in a day program, or a care home. When our respite day programs were closed, it was like family members were confined to prison. One person said, “My husband gets dressed every morning to go to the day program, but now it’s locked.” So it was totally changing the routine for daily care.
With a chance at respite eliminated, the demands on anyone caring all day and night grow. For those who are less cognitively impaired, being restricted to home is no less harmful, because they are now more likely to have even more limited in-person contacts with peers or relatives.
On top of that, long-term care homes’ restrictions to keep one safe physically are making people less well mentally. In fact, we are seeing an accelerated pace of decline for isolated elders, watching people move so quickly to the next stage of dementia. Caregivers attribute this to the lack of contact and stimulation. Nursing home staff tell me that they worry what will happen when the residents’ relatives, who’ve been kept away for several months (or longer), see their family members. The pace of dementia-related decline has intensified because of Covid restrictions.
DC: As an educator, how would you explain that? How has that lack of contact resulted in an acceleration of decline?
KUS: I think it’s lack of stimulation, lack of interaction. If someone gets a visitor but can only see them through a window or at a distance, it’s different than close physical presence. Presence stimulates brain function better. Our educators from the foundation who work with families say that we need contact with the outer world in order to function well. If we eliminate that, we draw inside.
DC: It’s probably too soon, but at some point we’ll be able to quantify that impact.
KUS: Yes. Right now we just have leaders’ and staff observations. I gave a training just a few weeks ago before the second wave of Covid. After the first wave and through the summer, they said that the state of the residents had changed greatly. It’s difficult to quantify how fast they declined, but the change was huge and vivid.
DC: What moved you to provide training around personal music?
KUS: Like many others, I was searching for a new or fresh solution for therapy. I saw Alive Inside and thought that we have to have it in Poland, definitely. I realized how it could benefit people with Alzheimer’s and many other types of conditions. The film shows the potential impact that personal music can have on people who are in need, generally, and led to my organizing this kind of training that we need here in Poland.
Although there are caregivers and therapists that encourage music, I don’t think that personalized music is a path that they follow very often. It’s worthwhile to craft a new approach to music here for patients and general support for dementia therapy.
DC: Who participated in the training? What were they looking for?
KUS: This was a free training that we underwrote with government funds. The class (via Zoom) was a diverse mix of family and professional caregivers, therapists, psychologists, neuropsychologists, academics, and students.
In my view, all participants shared a desire to learn something new, to stay open to the different possibilities that are accessible, things that they didn’t know existed. They were looking for something new that could make their work/care easier, more effective, for meeting participant’s needs or residents’ needs.
DC: Now that the training is almost done, what has been the response?
KUS: As I had hoped, we are finding that when people with dementia listen to their favorite music, it really helps to calm them down. And that enjoyment of the music means that caregivers can have a few minutes respite. It’s a great tool for the Covid situation.
Our association has made quite a few short support videos for at-home caregivers about how to care for the person with dementia when the day is so long.
DC: Are there any stories from caregivers about how the personal music has worked that stand out for you?
KUS: It’s amazing that some people found diaries that family members had written when they were young, with either lists of their favorite music or even notebooks of favorite lyrics. This helped caregivers to learn what music gave their family members the most pleasure and also to get to know a great part of their family history.
DC: With family visits limited during Covid, how likely is it that care homes can implement such a personal music program?
KUS: That’s a good question. I think it might be hard. It depends on the situation. If the care home is in a stable situation, not having a lot of cases of Covid, or if the staff are not facing any infections in their own homes that require quarantining, I think they may find additional strength to create some new program for training. To be honest, I think that in Poland, it’s really hard right now. I know they are short staffed because of the Covid situation. From my experience with training caregivers, they say that they are overwhelmed with their workloads.
DC: That’s the challenge. In terms of seeing music used more widely to improve lives, what’s your hope for the future?
KUS: I think that the most difficult part of personal music is just to convince families, staff, and management that this is really worth doing. Because if they are convinced, then they will try. So my wish would be that we have more and more people who use personal music in care situations, both at home and in care homes; that they believe it is really worthwhile and can improve care for residents, for people with dementia, and for the people who look after them.
DC: To combat the negative impacts of COVID-19, we need to find positive approaches.
KUS: Yes, I think that this training, this approach to personal music is really special and worthwhile to learn and to introduce. So I would really be happy if many more people could participate and learn directly what it is about and try to use it in care programs. That’s something that would be responsive to our needs today. We are already overwhelmed with the situation as it is. But there is always the chance for a change. We have to do something to combat the isolation and all that results from it. Personal music can help.
Image: Alonafoto