Fourteen people representing 12 Fast-Track COVID-19 Grant Response grantee organizations joined Adira in July for a roundtable convening on how their projects have unfolded since April. The group offered rich discourse, highlighted what they’d learned so far, and helped prioritize needs that still remain.

Each also completed a survey and their feedback will help inform Adira’s future programming.

Among the organizations that together reach 400,000 people in the neurodegenerative disease community, two needs surfaced:

  1. Mental health is taking a toll, especially for caregivers.
  2. Care coordination is at the root of many barriers.

Two major areas of concern and focus

Counteracting the pandemic’s toll on mental health

Participants reported seeing an increased toll on mental health for both people with neurodegenerative diseases as well as caregivers.

Mental health and care coordination top issues reported - survey question resultsFor people with neurodegenerative diseases

People living with neurodegenerative diseases often face risk factors for worse symptoms of COVID-19, including age and immune system compromise. As a result, many are advised to self-isolate.

Several participants described how much of a toll that isolation takes on people’s mental health. They want to see more services available that support positive mental health.

Participants also reported people with neurodegenerative diseases experienced:

  • More difficulty accessing specialized medical care. Symptom management is more likely to worsen without specialized care, which affects mental health.
  • Increased feelings of isolation and loneliness.
  • Difficulty reaching out, and in at least one instance, suicidal ideation.
  • Fewer opportunities for physical and social activities.
  • Lost sense of connection and community.
“We’re seeing a growing need in mental health and physical impairment. So, our doctors are noticing with the prolonged isolation and disruption in routine that we are seeing a decline.”

For caregivers/partners

Already notoriously burdened (and resilient), many participants reported caregivers are feeling even more overwhelmed and distressed since stay-at-home orders and recommendations began. They reported observing caregivers with:

  • More restricted access to help they had prior to stay-at-home orders and recommendations.
  • Fears of virus transmission that kept them from allowing others in to help with care.
  • Less privacy for discussing patient issues.
  • New needs to address, as basic as help with buying groceries, setting up people with new tech, maintaining access to their healthcare.
  • Less bandwidth. Managing loved one’s needs when dealing with other issues: experiencing illness, limitations due to fear of transmission, loss of income, loss of time, space and flexibility.
  • Caregiver exhaustion.
“Like everybody else, we’re dealing with communities that are known to be resilient and have had to overcome a lot of struggles—but we are definitely, at this point in the stage of the [COVID-19], seeing a lot of exhaustion. We’re seeing new struggles crop up.”

Caregiving also came up during a conversation about new needs COVID-19 brought with it. Discussion points included preparing a secondary caregiver, coordinating online respite care, and new considerations people must make for in-person respite care.

“How do you engage someone in moderate, late dementia online and provide respite [for caregivers who are working at home] as well?”

Easing the pain of coordinating and managing care

Most barriers involve care coordination in some way.

Coordination of care is a primary concern for this community. Participants offered ideas about what it looks like in their work:

  • Getting and maintaining access to the right providers would make a difference especially with symptom control.
  • People could benefit from better training in self-advocacy.
  • People without care partners are more in need of care coordinating help.

Specifically, since March participants have seen more issues around:

  • Understanding how to get the best out of telehealth visits.
  • Keeping up with treatments that require physical presence, like infusions.
“These are people that even though they would love to be engaged either they don’t have the ability to connect to Wi-Fi or they just don’t even have a network where they live.”

Other topics covered

Many of the participant organizations help ensure some immediate needs that came up from COVID-19 are addressed including food insecurity, lack of in person classes and services and accessing physical therapy and exercise. (See full list of projects here.)

They reflected on the challenges and insights they’ve seen so far. Obstacles to implementing remote services proved to be a hurdle. Many people in this demographic lack basic access to technology. Even when people had access, the technology itself required some training and confidence.

Organizations are learning to walk people through the basics as part of their programming.

“One of the challenges that we ran into … once we started developing remote programming was people just didn’t know how to use Zoom. They were totally freaked out by this fact that, ‘Oh my gosh, I have to dial in some place, and then I have to put myself on screen and what’s going to happen?’ ”

Emerging insights from the field

Many participants expressed concern that the impact of the pandemic will worsen, economically and otherwise, as assistance comes to an end and the reality of the job market under ongoing social distancing sets in.

As the nation reopens, people with neurodegenerative diseases and their caregivers will face new challenges. The organizations were in a period of initial reaction to staying at home and fear of spreading or catching COVID-19. Now they’ll need to move to respond to larger needs that have come out of it. That includes organizations challenges of working from home, needing to share technology, and keeping patients engaged while at home.

They saw a few ways the pandemic could change the care landscape permanently:

  • More telehealth, more remote care and classes, remote services and interactions
  • The newly virtual nature of programming could mean local programs continue reaching a broader community.
“We suspect that we haven’t actually reached the peak of demand for our services yet. As things like the CARES Act expire, as things start opening again and businesses are opening and people are expected to go back to their jobs in-person …. I’m not sure that we have fully realized the extent of the need of our community in just the first several months of the pandemic.”

What’s next

This convening fit into the listening and learning stages of Adira’s model: Listen, Learn and Act.

After a round of funding, each grantee learned some things and took the time to share with Adira at this convening. Adira is busy planning for its next round of programming, and will take this feedback, as well as the survey results, into consideration.

Visit our programs page to stay up to date.