On COVID-19: Exploring the Experiences of the Dementia Community during the Pandemic

This blog post discusses some of the key findings from the article “The Impact of a Global Pandemic on People Living with Dementia and their Care Partners: Analysis of 417 Lived Experience Reports , paper here).

It is without question that the COVID-19 pandemic has greatly impacted our daily lives. From new health policies to months being on lockdown, we have had to adapt to the rapidly changing circumstances within the last year and a half. Remember when every day necessities were becoming scarce and the difficulty in trying to find a roll of toilet paper? More importantly, as the pandemic progressed, there were increased concerns surrounding available hospital beds and ventilators [1,2] and the allocation of resources including vaccines and therapies to combat the virus [2,3]. While the entire world has had a handful of shared experiences, some have been more vulnerable to the virus and the regulations set in place. 

During the earlier days of the pandemic, we learned that older adults were at a higher risk of contracting the virus, especially those living in long-term care facilities, including people living with dementia. They were restricted from going out, attending regular health care services, receiving home support, or accessing community supports and social networks. Families and care partners also had difficulties in caring for their loved ones, as some were unable to physically visit them in a long-term care home. As this continues to be an unprecedented time, it is important to understand the experiences and needs of the dementia community.

What we did

With an ongoing collaboration with the Alzheimer Society of British Columbia, we at the Neuroscience, Engagement, and Smart Technology (NEST) Lab developed a survey to explore the lived experiences of people living with dementia and their care partners during the pandemic. In this survey, we touched on four different themes including (1) information and resource needs, (2) caring for someone living with dementia during the COVID-19 pandemic, (3) mental health and well-being needs, and (4) the use of technology for social connection during the pandemic. We distributed the survey between June and August 2020 and received 417 responses (395 care partners and 22 people living with dementia).

What we found

Information and resource needs

Figure 1 shows the locations from which our participants were receiving their information about COVID-19. With so many sources of information during the pandemic, our participants found that the information they accessed were helpful in terms of maintaining their own health (74% of care partners, 86% people living with dementia) and a period of social distancing (70%, 77%). They found that the information they accessed was either somewhat or very stressful (29%, 23%), neither stressful or reassuring (23%, 23%), or somewhat or very reassuring (48%, 54%). In terms of needs, care partners wished to have learned more about care options including long-term care and respite care, while people living with dementia wanted to learn more about self-care during the pandemic. 

Figure 1. “Where have you been receiving information about the COVID-19 pandemic?”

Caring for someone living with dementia

The focus of this section in our survey was to identify the main concerns of care partners during the pandemic. While there was concern for every care partner scenario described in the survey, the five major concerns were having more responsibilities as a care partner, access to therapy and/or a vaccine for COVID-19 in the future, having the person they care for be infected with COVID-19, the person that they care for having difficulty understanding COVID-19 and the health regulations set in place, and having themselves be infected with COVID-19. Figure 2 presents other areas of concern for these care partners.

Figure 2. Care partner concerns.

Mental health and well-being 

An increased period of social distancing and being on lockdown affected the mental health and well-being of those living with dementia and their care partners. People living with dementia were restricted in their home, not being able to go out to get groceries, attend regular health care services, or even access community supports. With this in mind, we uncovered that the pandemic had increased our participants’ stress overall (58%, 62%), and they had felt left out (63%, 81%), isolated (74%, 81%), and lacked companionship (70%, 76%). To manage this stress and maintain their well-being, participants said that they spent time talking to friends and family, walking around the neighbourhood, watching television, and engaged in household activities. 

Technology and social connection

As many in-person activities were suspended and some transitioned to a virtual setting, we were interested in whether people living with dementia and their care partners were utilizing technology for social connection. Even though there were increased feelings of isolation and lack of companionship during the pandemic, our participants were able to socialize and connect with others through a cell phone/smartphone, on devices such as laptops and tablets, as well as home phones. However, only 19% of care partners and 36% of people living with dementia felt that using technology to connect with others felt the same as interacting with them in person. There is something to be said about the quality and impact of having in-person interactions and the impact it can have on one’s mental well-being. 

What now?

Our survey took the opportunity during a challenging time to explore the real life experiences of people living with dementia and their families and care partners. With this, we were able to identify some actionable priorities for services such as those provided by the Alzheimer Society of B.C. to better support the dementia community during a pandemic. Since the publication of our results, the Alzheimer Society of B.C. already implemented some of the suggestions and findings in their service delivery. Moving forward, there will be plans to implement long-term changes to address the needs of this community and to better manage the care for older adults and people living with dementia. 

The authors of this work were Mallorie Tam, Dr. Jill Dosso, and Dr. Julie Robillard. Special acknowledgement to the Alzheimer Society of B.C. for their support and collaboration on the project. 

Press coverage of the study: https://vancouversun.com/health/seniors/people-with-dementia-experienced-more-stress-loneliness-during-covid-19-says-ubc-study

References

  1. Emanuel EJ, Persad G, Upshur R, Thome B, Parker M, Glickman A, Zhang C, Boyle C, Smith M, Phillips JP (2020) Fair allocation of scarce medical resources in the time of Covid-19. N Engl J Med 382, 2049–2055.
  2. Smith EE, Couillard P, Fisk JD, Ismail Z, Montero-Odasso M, Robillard JM, Vedel I, Sivananthan S, Gauthier S (2020) Pandemic dementia scarce resource allocation. Can Geriatr J 23, 216-218.
  3. Neurology Today, COVID-19: Prepare for Care-Rationing—Know Your Hospital Policies, https://journals.lww.com/neurotodayonline/blog/breakingnews/pages/post.aspx?PostID=932, Last updated April 8, 2020, Accessed July 21, 2020.

APOE genomics gets personal

The personal genomics company 23andme has added testing for the variants of the gene APOE; people who carry the ε4 variant of this gene have increased risk of developing sporadic Alzheimer’s disease, the most common version of the disease.

This is very tricky adventure for personal genomics.  Smart Genetics was the pioneer in this field, but they closed down when they were found to be infringing upon the patent held by Duke University for APOE predictive testing for Alzheimer’s disease.  The patent infringement case was ultimately technical, but it resulted in a spotlight being drawn to the issue of APOE testing for the masses, and some of the comments that were made at the time in a report by Nature News are relevant today.

“The test was never intended to be used for wholesale screening of non-cognitively impaired individuals,” said Alan Herosian, director of corporate alliances for Duke University.

Even more telling was the observation made by Allen Roses, the lead scientist on the Duke patent who said

“ethical aspects of risk assessments will change if clinical trials identify drugs to treat the disease. Currently, knowing one’s risk of developing the disease may simply cause needless worry, as there is no prevention or treatment.” Continue reading