Setting and Participants
Conclusions and Implications
COVID-19 Nursing Home Data.
WHO Coronavirus (COVID-19) Dashboard.
- 1.What challenges did caregivers of a relative with dementia living in LTC experience during the COVID-19 pandemic?
- 2.What resources, strategies, and practices did caregivers perceive as helpful for addressing these challenges?
|Interview Participants (n = 20)||Open-Ended Survey Participants (n = 125)|
|Female||18 (90)||108 (86)|
|Age, mean (SD)||58.2 (7.2)||61.9 (10.3)|
|White||19 (95)||121 (97)|
|Married||19 (95)||100 (80)|
|Number of living children, mean (SD)||2.2 (1.7)||2.0 (1.6)|
|Bachelor's degree or higher||16 (80)||92 (74)|
|Annual income of ≥$80,000 or more||9 (45)||61 (48)|
|Employed prior to COVID-19 pandemic||12 (60)||62 (50)|
|Spouse of care recipient||5 (25)||34 (27)|
|Adult child of care recipient||12 (60)||78 (62)|
|Interview Participants (n = 20)||Open-Ended Survey Participants (n = 125)|
|Female||9 (45)||83 (66)|
|Age, mean (SD)||80.0 (9.0)||82.4 (7.8)|
|White||18 (90)||121 (97)|
|Married||10 (50)||50 (40)|
|Widowed||9 (45)||60 (48)|
|Number of living children, mean (SD)||2.9 (2.4)||3.2 (1.9)|
|Bachelor's degree or higher||7 (35)||52 (42)|
|Annual income of ≥$30,000||12 (60)||74 (59)|
|On Medicaid||4 (20)||37 (30)|
Measures and Procedure
Caregivers' Challenges During the Pandemic
|Theme||Frequency in Interview Transcripts, n (%)|
(n = 20)
|Frequency in Open-Ended Surveys, n (%)|
(n = 125)
|Visiting restrictions||20 (100)||99 (79)|
|Care recipient isolation||18 (90)||37 (30)|
|Disruption of care routines||18 (90)||37 (30)|
|COVID-19 infection concerns||16 (80)||39 (31)|
|Needing information||13 (65)||34 (27)|
|Care recipient's health deteriorating||14 (70)||32 (26)|
|Concerns about staff||8 (40)||19 (15)|
|Grief||8 (40)||16 (13)|
|Impossibility of returning care recipient home||11 (55)||9 (7)|
|Inconsistent policies||8 (40)||12 (10)|
|End-of-life concerns||5 (25)||15 (12)|
|Resources, strategies, and practices|
|Infection control within the LTC||18 (90)||66 (53)|
|Good communication with LTC Staff||18 (90)||51 (41)|
|Maintaining contact with care recipient||13 (65)||26 (21)|
|Staff engagement with residents||12 (60)||15 (12)|
|Social support||14 (70)||3 (2)|
With the “remote” visits, I felt very distant and that my mother probably didn't really know I was there . . . I have to admit, I did window visits and [Z]oom visits less and less since it was depressing and since I wasn't sure it had any effect.(ID223, daughter, age 54 years)
Due to my full time work schedule and my relative’s decline in cognition during the afternoon and evening, I feel much of the scheduling is working against me. I am restricted by the schedule only allowing a limited number of visitors in each area of the nursing facility.(ID43, daughter, age 49 years)
Care recipient isolation
Social isolation has been devastating for Mom. She experiences depression, anger, and loneliness far more frequently. Lack of social stimulation has diminished her interest in activities that previously were engaging and stimulating.(ID247, daughter, age 69 years)
Disruption of care routines
The entire pattern changed at the facility. . . . I could not go in to see her personally. . . . No more dining together. All activities changed, the schedule changed, and I understand that it had to. But she was confused. I didn’t know what I was going to do. She needed me with her.(ID188, wife, age 67 years)
COVID-19 infection concerns
Care Recipient's health deteriorating
I noticed that my mom really had sort of declined cognitively from where she was before . . . a lot of [residents] had a severe decline, and it's hard to tease out whether it's the dementia itself or if it was the lack of stimulation from visitors.(ID164, daughter, age 65 years)
Concerns about staff
Staff was short. At one time, 15 staff members were out with COVID. The ones remaining on duty were overworked and stressed. They didn't and couldn't care for residents the way they needed to.(ID195, wife, age 67 years)
Impossibility of returning care recipient home
This isn't a puppy. . . . [We] would still have to have caregivers come in the house, they would expose him and me to COVID. . . . And what if I got COVID and died and he didn't? I mean, so yeah, I can always bring him home, but how do you care for somebody alone? You can't, that's why he's in a facility.(ID191, wife, age 63 years)
I see how differently different places have handled visits or the lack thereof, and it's hard not to be jealous sometimes . . . if she had lived at [other nearby LTC facility], they have a completely different category of caregivers now . . . that can come in for up to three hours at a time.(ID213, daughter, age 54 years)
Thinking that you're going to lose your loved one and not be able to be by their side and let them know that you love them and be able to help them through that last moment of their life and have them feeling alone and abandoned, that was something that was a real big fear for me.(ID223, daughter, age 61 years)
Resources, Strategies, and Practices
Infection control within the facility
Good communication with LTC staff
During the week after she tested positive they called me just about every day. . . . I was concerned a little bit, but when they started calling me every day about what was going on with [her symptoms], that took care of those concerns.(ID198, son, age 43 years)
Maintaining contact with care recipient
Staff engagement with residents
Conclusions and Implications
Supplementary Material 1. Semistructured Interview Guide
- 1.First, I'd just like to get a broad view of how things have unfolded for you and your relative over the past several months, since the start of the COVID-19 pandemic. Can you tell me the story of what has happened for you and your relative, starting before the COVID-19 pandemic (about January-February, 2020), and bringing us up to the present?
- 2.What are some of the main challenges or concerns that have come up so far regarding caring for your relative?
- 3.How are you coping with these challenges and concerns? What strategies, if any, have been helpful to address these challenges?
- 4.Now, I’d like to talk about how your relative’s long-term care facility has been handling the COVID-19 pandemic. What are some of the ways the facility has tried to prevent or slow the spread of COVID-19?
- a.Probe: How worried are you about your relative getting sick from COVID-19?
- b.Probe: Have these facility measures impacted your level of concern (ie, made you feel more or less scared)?
- c.Probe: Has the facility “reopened” or lifted any restrictions that were previously in place? If so, what effect did reopening have on you and your relative
- 5.How has the facility been communicating COVID-19-related plans and updates with you?
- a.Probe: Has the communication been adequate? Why or why not?
- 6.How is the facility keeping your relative engaged while practicing social distancing?
- 7.What have you liked or disliked about how your facility is handling the situation?
- 8.What would you change about how your facility is handling the situation?
- 9.Are you concerned about being able to continue paying for care?
- 10.Now, I’d like to learn about how your relative has been affected by these changes. How has your relative's day-to-day routine been affected by COVID-19?
- a.Probe: By any procedures implemented by the facility? Remind of any procedures listed earlier if needed.
- 11.How has your relative handled the changes in daily living, care, and visiting?
- 12.How has your relative’s health and well-being changed since the start of COVID-19?
- 13.Next, I’d like to hear about how you’ve been affected in your role as a caregiver. How has your ability to be a caregiver for your relative been impacted by COVID-19?
- a.Probe: Are you providing more or less care?
- b.Probe: Any different care roles or activities you’ve taken on?
- 14.How have interactions with your relative changed?
- 15.How have your feelings of stress or burden changed as a result of the COVID-19 pandemic?
- 16.Has not knowing when or if these restrictions will change affected you?
- a.Probe: How long are you comfortable with going without seeing your relative?
- b.Probe: What are your thoughts about the tradeoff between quality of life (for example not being able to have visitors) and resident safety?
- 17.In this last section, I’d like to hear more about what kinds of resources have been helpful to you during this time. What resources have been most helpful?
- a.Probe: What other resources do you wish you had access to?
- 18.For participants still enrolled in the treatment group beyond March: Did you find that talking with [name of study interventionist] was helpful for dealing with COVID-19? In what ways?
- 19.For all participants in treatment group: In what ways, if any, did things you learned from the RCTM help you in coping with the COVID-19 pandemic or in being a caregiver to your relative during the COVID-19 pandemic?
- 20.Is there anything else you would like to add about your COVID-19 experience as a caregiver of someone in a residential facility?
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This research was supported by the National Institutes of Health [R01 AG048931-05S1 to J.E.G.]
The authors declare no conflicts of interest.