FTD Caregiving in a Pandemic
I hope you and your loved ones are staying safe and healthy during this still rather uncertain and stressful time. In my daily work at the Mesulam Center for Cognitive Neurology and Alzheimer’s Disease at Northwestern University, I interact with many individuals and families facing an FTD diagnosis, helping them navigate challenges and find hope in their journeys. But those challenges have been exacerbated by the COVID-19 pandemic, requiring families to adapt their strategies to access the help they need.
Caregiver support groups are often a lifeline for support and connection with others, as they provide people an opportunity to share stories, strategies, resources – and to know they are not alone. The support group lifeline has been even more crucial during this time as we all experience increased isolation. Additionally, adult day service programs are closed, eliminating another crucial support service, and there is heightened anxiety regarding an uncertain future.
As we all have worked to adapt to the reality of life in a pandemic, many of us have moved our FTD caregiver support groups to virtual platforms. In these online spaces, caregivers can share their challenges and their resilience. It is in this spirit that I offer examples of how support group members responded to questions about how they are coping during this time. In total, I was able to interview 14 participants, a mix of care partners for persons with behavior, language, and motor variants of FTD, who offered their thoughts and reflections. Thirteen are spouses and/or partners, and one is a caregiving daughter. Seven are caring for persons living with a diagnosis of various forms of PPA, one is caring for a person with the motor variant FTD, and six are caregivers of a person living with behavioral variant FTD.
What additional challenges have COVID and the ever-evolving COVID-related restrictions placed on the relationship between you and your family member living with FTD?
The majority of caregivers repeatedly stated that their family member lacked understanding of COVID-19 and its implications.
Understanding how to stay safe or protected, including the need for social distancing, mask wearing, and hand washing, have been significant challenges. Care partners find themselves in the position of needing to keep hands away from counters and objects due to impulsive touching. When in public, there is a need for hypervigilance to ensure the safety of the person with FTD and of others who can become upset when mask wearing and social distancing are not maintained. Often, the ultimate result is an avoidance of public outings.
With forced isolation, the challenge is keeping the person with FTD engaged and occupied due to the limited options available and the need to develop a new daily routine. “It’s difficult to constantly explain and re-explain why they cannot go outside and do the things they enjoyed in the past,” one caregiver said.
A few individuals were grateful for adult day centers, which although closed, were maintaining contact and providing some online activities. The caregiver of a person in a facility found the isolation affected her mother’s ability to track time. Others are finding that increased anxiety and irritability have arisen.
The primary issue, though, seems to be not conceptualizing the risk. One care partner stated, “If you ask him what the disease is, he will say COVID-19 and if you ask him how to stay safe, he will say, ‘stay away from people.’ But somehow these are learned answers and don’t translate to action. If allowed he would walk out the front door right now with no mask and no distancing.”
One care partner offered, “He roams if I am not on alert. For example, if I open the garage and forget to lock the door and I’m distracted, he will head out through the garage. The risk of him being out wandering around now is not just for someone taking advantage of him, or for him to make a risky decision, it is for a virus that he does not see and understand. He would walk out and have no mask and talk to people and not do anything to protect himself.”
Care partners of people with PPA observed speech and language decline while sheltering in place, due to the isolation from others along with the lack of a routine and schedule. They have found that there is more disorientation and slower processing of information. As things have started to open up in some places and they have had select in-person contact, families have observed that some speech recovery has occurred; however, some feel that quarantine has accelerated progression of the disease.
The perception that the imposed isolation has created more deterioration was universal. There is a sadness that precious time has been lost, first because of FTD itself and now because of the pandemic. Overall, the isolation, lack of visitors, and canceled plans, along with the difficulties in having a common understanding regarding the pandemic between the care partner and their family member, have been overwhelming and stressful.
While COVID-19 has made most everything more complicated and stressful, have you found examples of creative solutions or resilience?
While families acknowledged that living amidst the pandemic has added increased stress and burden, they also expressed resilience in the face of this challenging time.
“There’s an odd kind of loneliness,” one care partner said. “To lose so many dimensions of intimacy is not easy.” Care partners described the need to keep things simple and refrain from over-explaining. They recognize the need to increase their level of supervision for their family member living with FTD and the need to be more vigilant than ever to keep their person safe. Those who have extended family who live out of town find that regular phone calls or Zoom/FaceTime chats greatly help in keeping both the person living with FTD and their care partner occupied and engaged. Care partners expressed gratitude for these calls and support.
Many are finding creative solutions to deal with the isolation: for example, going for daily long walks, engaging in easy games with few instructions, listening to music, going for scenic drives, gardening, and recalling happy memories.
One couple bought a digital picture frame to add photos of family and friends, creating opportunities for reminiscing and laughter. One care partner, who is unable to visit their husband in his assisted living facility and has found FaceTime difficult, created video clips of children and grandchildren for him to view and play over and over again.
Another couple puts on swing music and dance together: “Even if he can only move his feet around a bit, we smile and remember and enjoy.” Many are finding various activities and free online enrichment such as classes, movies, theater, museums, travelogues, and lectures via FaceTime and Zoom. Some are getting back into playing the musical instrument they put down long ago. One family bought a firepit to sit by in the evenings and share stories and memories of fires they sat in front of throughout their lives while camping or celebrating: “These help us feel close.” Others said they have been having socially distanced family gatherings, such as staying on the porch while family visits from the yard.
Overall, having a set schedule is helpful, balanced with humor, keeping things as lighthearted as possible, staying positive, expressing gratitude for one another, and practicing patience. “These are hard times for anyone to understand. I just try to anticipate her behavior. When that fails, I don’t beat myself up,” a caregiver added.
Do you have any advice or message for people who are seeking hope at a time like this?
Many expressed the old adage of “taking one day at a time” and taking time for yourself, even if it is as simple as listening to calming music for five minutes and getting a good night’s sleep. When in public, give AFTD’s Awareness Cards to people who may be alarmed and do not understand FTD-related speech and behavior challenges.
A few caregivers expressed recognition that it could take a year before we return to a more normal society, and look forward to when there is a return to the adult day program, or when it feels safer to have a companion come to their home. Some have begun to do this now, which helps to foster a sense of strength and connection.
In closing, here is some additional advice that FTD care partners shared that may help you navigate the current moment:
“Continue to build your support network. It is so valuable and makes both of our lives so much better.”
“Loosen your expectations. Let your loved one sleep in.”
“Avoid confrontations/debates when unnecessary. Keep things light and find humor.”
“If possible, reminisce on the ‘old times’ you have enjoyed together and with extended family.”
“If in one’s belief, pray. Crying is OK, too.”
“Do the best you can.”
“Focus on all of the positive things that are happening and make sure to take time for yourself. One thing I notice is my partner really is aware of the beautiful aspects of the world: The beauty found in nature in particular, as well as people and their kindness. … I need to slow down and take notice of the beauty around me as well.”
Darby J Morhardt, PhD, LCSW