COVID-19 and its Impact on People Living and Dying with Dementia in Congregate Living

COVID-19 and its Impact on People Living and Dying with Dementia in Congregate Living post page

By Dan BulgarelliDecember 18th, 2020

COVID-19 and its Impact on People Living and Dying with Dementia in Congregate Living


by Dan Bulgarelli,

PAC Chief Financial Officer

Over the past nine months, all of our lives have been impacted in one way or another by the COVID-19 pandemic. School buildings are closed or running differently. Businesses are closed or running at smaller capacity. In-person events, at least for us at PAC, have all been cancelled or turned into virtual happenings. All of that and I haven’t even mentioned the over 250,000 lives lost. Perhaps the biggest changes have come to those living or working in senior living communities.

Deciding to move into a senior living community is a difficult decision, even before the current pandemic. The fear of lost independence, the sadness of leaving a place that has been home for years, or moving away from friends and family all play a role. However, senior living communities can be a wonderful place to live with a myriad of activities, new friends to meet, and the caring people that work there.

With the pandemic and the stay-at-home orders issued by many states, people haven’t been able to visit their loved ones in nine months, the isolation people feel is overwhelming. Not only is this difficult emotionally, but many family members were still primary caregivers as they were the only ones that could get their husband/ wife/mom/dad to eat, take medication, or tackle other daily necessities.

COVID-19 is an infectious disease and the easiest way to prevent the spread is to stay away from other people. The second best defense is to wear a mask, wash your hands frequently, and refrain from touching your face (which I didn’t realize how much I did it until I tried to stop). This has been difficult for those of us with healthy brains. For people living with dementia, we are asking them to adapt to new social norms that they don’t understand, or simply can’t retain. They don’t recognize their caregivers who are masked up, they can’t understand why they should remain in their rooms (or why people are forcing them to stay in their room when they haven’t done anything wrong and they aren’t feeling sick), and they don’t know why their families can’t visit them. For the caregivers, less of their time is spent being with and supporting people they have grown to care for and more time has been spent dealing with challenges caused by people wanting to be social.

Unfortunately, the bad news doesn’t stop there. McKnight’s Senior Living published an article in October about deaths in senior living communities. The article pulls data from three different sources focusing on COVID-19 deaths in the United States and globally. The author, Kimberly Bonvissuto, states that between 41%-46% of all deaths related to COVID-19 occurred in “non-acute residential and nursing facilities that house individuals with long-term needs.”

Not only is the senior population being hit hardest, for those people living in a senior living community, they aren’t able to have family with them as they pass from this life. Families are not able to be present for this transition and are not able to gather afterward to celebrate the meaning and value of that life in ways that are familiar, comforting, and supportive. Instead of a gradual letting go of one another, most have felt that their relationship was severed and are left with a feeling or sense of abandonment, a forced separation without resolution. Many are missing friend and family connections of community, of closure, of having provided comfort and connection as life ended, for all involved.

What is possible for us to begin to consider in this situation? Perhaps we are needing to find a new normal. A few months back, Teepa mentioned in one of her articles the idea of forming a quaran-team. Let’s adjust it just a bit and see if we can create a team comprised of a resident living in a facility, an employee at the facility, and family members of the resident. We have technology available to us that would have been relatively unthinkable 10-20 years ago. Is it the same as being there in person? No, but let’s not focus on what we can no longer do and think about what we can do. Research has shown that it isn’t the length of time we spend with a person, but the quality of that time. What if our team works together to create opportunities for connection and engagement? Yes, it can be difficult to start and it will take extra work, but think about what it can become and decide whether or not it is worth it. I think it would be.

Thus, we create a new normal, for now, at least. We agree it will be different to work with one another. We seek to support one another in ways we have never before had to consider. It is a hard shift, but who said 2020 was easy? One more change among so many, and yet this one may enable us to expand what each of us experiences and appreciates in one another to build a more complete community of care.

What would it take to start this shift? What it always takes to enact change: awareness, intention, action, and evaluation. It all starts with an offer of a connection, a relationship.  It’s all in your approach. There are tools and strategies that can help, and yet without you they are nothing but possibilities. Maybe it’s time to start the conversation, before the end of life.

Are you unsure how to start this conversation? I was, too. Fortunately, Teepa and the PAC Team created a video about just that thing. You can watch it here. Let’s get the conversation going and work together to make a change.

We must be the change we wish to see in the world (paraphrased from Mahatma Gandhi).

One Comment on “COVID-19 and its Impact on People Living and Dying with Dementia in Congregate Living”

  1. First, some facts from British Columbia: In the first 6 months of COVID-19, 151 people died of COVID in Long Term Care. In this same time period in LTC, 4,500 people died of ‘normal, natural causes’ – 30 times the number of COVID deaths. Most of those 4,500 people died in isolation, depressed, and feeling abandoned by their family or loved ones because family caregivers were prohibited from caring for them. The ‘protection’ of residents in LTC by severely restricting (virtually banning) care by family care-givers was well-intentioned, but wrong and abusive.
    The simple solution is for family caregivers to live in virtual isolation if they wish to come daily (or at least frequently) to care for their loved one. I have done this since May 1st, when I was permitted to come in daily to feed and care for my wife at lunch time. I expect that I’m less of a ‘COVID threat’ than most of the staff, who go home to their families every day. [Our Ministry of Health has also been derelict in not giving staff specific guidance on how to conduct themselves when outside of their LTC facility – to keep a very small ‘bubble’.]
    There is a simple solution to maintaining a good quality of life for LTC residents by allowing family caregivers who are practicing self-isolation to come in as often as they want to provide loving care. [And they are not ‘visitors’ but part of the care-giving team.]
    As an aside – public health doctors have a serious handicap – they seem to be terrified of ‘death by COVID’ – ‘head count of the dead’ is their sole criterion, ‘quality of life’ is an unknown concept.

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