FLORHAM PARK, NJ — While the COVID-19 pandemic threatens the health of millions in the United States and around the world, the novel coronavirus presents unique challenges for more than 5 million Americans, including 190,000 in New Jersey, who are currently living with Alzheimer’s and their caregivers.
In order to assist those individuals and their families, the Alzheimer’s Association of Greater New Jersey (AAGNJ)—which offers a number of education programs to help those living with Alzheimer’s and their families understand what to expect so they can be prepared to meet the changes ahead and live well for as long as possible—is offering free virtual education programs, and online support groups, in the coming weeks.
“During this challenging time, it’s critical that all New Jersey caregivers have access to Alzheimer’s Association resources even if they cannot venture out,” said Cheryl Ricci-Francione, executive director of AAGNJ. “The COVID-19 crisis is altering Americans’ daily lives, but the needs of Alzheimer’s caregivers cannot be put on hold. These online programs allow us to connect with caregivers and provide necessary information even amid the current crisis.”
Although these virtual support groups may not fully replace face-to-face contact, Ricci-Francione said they will “provide that essential human connection” and let people know “that they are not alone during this pandemic."
After moving his mother to a new dementia-care-only assisted living facility just before the COVID-19 outbreak hit New Jersey, Robert Brai, AAGNJ Board Member and co-chairman of the Monmouth-Ocean 2020 Walk To End Alzheimer’s, described what it was like to no longer be allowed to visit less than two weeks later.
“The severity of the coronavirus became reality, and assisted-living communities throughout the state locked down their communities,” he said. "It's been difficult not being able to see mom, hold her hand, color with her and make her laugh…We FaceTime her, but it's not the same as being there to reassure her everything will be ok. Mom has no concept of what's happening with this virus and that's probably a good thing.”
Lisa Swanson, who serves as retention chair for the Walk To End Alzheimer's Committee, is living with a similar situation, stating that although she is trying to stay positive for her own health and for the health of her immediate family, she is also “in constant fear” that her mother “will be impacted by this virus.”
“COVID-19 has brought another layer of worry and sadness to a long-grieving/heartbreaking scenario,” she said. “My mother is in the late stages, but she still remembers me and lights up when she sees me, which used to be once a week. I would talk to her, tell her funny stories to make her laugh, bring fresh flowers, play music, give her hand massages, give hugs and kisses etc. Anything I could do to make her smile and bring joy into her day...
“I last saw my mom face-to-face on March 12 after debating all week…The next day, her facility went on lockdown out of precaution. Since then, we have had two 15-minute visits through glass. It is hard to interact with her in this setting, but I'm thankful to see her.”
Since her mother relocated to New Jersey in 2015 to be under her care, Swanson said the AAGNJ community has been her “safe haven, [her] support system and a reminder that [she] is not in this fight alone.”
Connie Roberson, a board member at AAGNJ, described her own experience as well, explaining that as a caregiver for her spouse with dementia, her main focus during the pandemic has been finding creative ways to keep them both safe and occupied.
She said that Netflix, music, dancing and cooking has made a difference, but she has had to hide most of his footwear as well as his garage remote and to “block the front door to lessen the chance of him leaving home unsupervised.”
“He knows there's a virus and washes his hands now because I was able to get other family members to intervene since I'm the bad guy telling him to wash his hands,” said Roberson, who also gives her husband Melatonin to help him sleep at night.
Like Swanson, Roberson has looked to AAGNJ for comfort during this time. As a senior living advisor, Roberson has spent a great deal of time speaking to caregivers about outreach resources such as the Alzheimer's Association’s 24-hour helpline, which she said she has had to utilize herself over the last few weeks.
In addition to caring for her husband, Roberson has also been helping others facilitate virtual caregiver support group meetings and helping family members find assisted living/memory care communities that are still accepting new residents for permanent and short-term stays.
Rochelle Smith, president of the Clarendon Adult Day Center in Livingston, explained that having to cease operations of the program “posed many difficulties for [Clarendon] clients,” but that virtual programs like the ones being offered at AAGNJ have been extremely useful.
“There was a sudden loss of community, socialization and stimulation with an indeterminate end,” she said. “Some of our clients could grasp that this is temporary, but there is an overwhelming sense of loss for them and for our staff.”
She added that without AAGNJ, families and caregivers would also be left without valuable and reliable resources. She said that families “try their best to fill the gap with assistance from home health aides and family members,” but that the lack of regular socialization and cognitive stimulation poses “a new and significant challenge.”
“Our staff members were determined to come up with a way to re-create a sense of community again while honoring the state and federal stay-at-home initiatives,” she said. “After many tries, we came up with the Daily Social Club, which is a regularly scheduled webinar series designed specifically for seniors and their caregivers. Our programming is filled with music, cognitive exercises, games, discussion groups and physical fitness activities.”
Smith said the goal of these webinars is to create a community utilizing an interactive platform and that she hopes the program will be entertaining for caregivers as well. By finding ways to bring regular programming online, Smith said that participants with a wide range of cognitive abilities will be able to find a place at the Daily Social Club.
Upcoming virtual education programs through AAGNJ include Virtual Caregiver Support Groups, Virtual Memory Cafés and educational programs including, Understanding Alzheimer’s and Dementia. Each virtual education program is approximately one hour and allows the audience to ask questions and engage with others going through the journey online.
For a complete list of upcoming programs, or to register for a program, visit alz.org/crf.
In addition to the virtual education classes, the Alzheimer’s Association offers online community resources at alz.org, including ALZConnected®, a free online community where people living with Alzheimer’s, caregivers, family and friends can ask questions, get advice and find support.
More than 16 million family and friends, including 448,000 in New Jersey, provide unpaid care to people with Alzheimer's or other dementias in the United States. To help family caregivers navigate the current complex and quickly changing environment, the Alzheimer’s Association has also offered additional guidance to families at alz.org/COVID19.
The Alzheimer’s Association free, 24/7 Helpline (800-272-3900) offers around-the-clock support for caregivers and families impacted by Alzheimer’s and all dementia.