Table 4 Results from coding of care partners’ qualitative data: experiences and needs (N = 29)

Who lives in your loved one’s home with them?

Alone with family nearby, 13 (44.83)

Other family, 8 (27.59)

Significant other, 7 (24.14)

Assisted/Independent Living, 7 (24.14)

Aide/Team (part-time), 5 (17.24)

Aide/Team (full-time), 4 (13.79)

How do you continue providing care while maintaining a safe distance?

Using PPE, 12 (41.38)

Social distancing, 10 (34.48)

Not applicable (i.e. care partner lives with patient), 9 (31.03)

Increased telephone communication, 5 (17.24)

Test ourselves often, 1 (3.45)

How often do you visit?

Lives with older adult, 10 (34.48)

Not at all, 7 (24.14)

Every day, 5 (17.24)

Bi-weekly, 3 (10.34)

Every other day, 1 (3.45)

Monthly, 1 (3.45)

Weekly, 1 (3.45)

What precautions are you taking to stay safe?

Using PPE, 27 (93.10)

Social distancing, 19 (65.52)

Personal hygiene, 11 (37.93)

Isolating at home, 11 (37.93)

Product hygiene, 7 (24.14)

Self-monitoring, 3 (10.34)

From which sources do you get your news about the coronavirus?

TV/radio/news station, 28 (96.55)

Political figures, 6 (20.69)

Through work, 5 (17.24)

Social media, 3 (10.34)

Medical Professions, 2 (6.90)

Residential facility/Staff announcement, 1 (3.45)

Do you know anyone who has contracted the coronavirus?

Close friends or family, 12 (41.38)

Do not know anyone, 11 (37.93)

Someone with less personal experience, 10 (34.48)

Knew multiple people with coronavirus, 5 (17.24)

Self, 1 (3.45)

Do you know anyone who has died from the coronavirus?

Yes, someone I didn’t know well, 6 (20.69)

Yes, close family or friend, 3 (10.34)

As the care partner for an OA, in what ways has this pandemic been affecting your ability to provide care for your loved one?

Increased vigilance, 17 (58.62)

Difficulty or inability to visit, 13 (44.83)

Changes in ability to provide care, 12 (41.38)

Increased emotional distress providing care, 6 (20.69)

No change, 6 (20.69)

Interference with medical care, 5 (17.24)

Do you think it is necessary to keep a safe distance away?

Absolutely necessary, 21 (72.41)

It is respectful to stay away, 2 (6.90)

Not necessary because we are all being safe, 1 (3.45)

From your perspective, does the OA understand the current situation with regard to COVID?

Does not full understand due to AD/ADRD, 10 (34.48)

Very good understanding, 4 (13.79)

Does not fully understand, 3 (10.34)

Grasps concept, 2 (6.90)

Has the OA been compliant with social distancing and, if so, how long have they been isolating at home?

OA has no choice but to be compliant, 16 (55.17)

Very compliant, 14 (48.28)

As much as the OA can remember to comply, 2 (6.90)

Increasing compliance as death rate increases, 1 (3.45)

Does he/she remember why they are socially distancing?

Yes, 4 (13.79)

No, 2 (6.90)

Have you noticed any changes in the patient in regard to her state of mind, fear, sadness and anxiety?

No effect, 14 (48.28)

Anxious, 6 (20.69)

Scared, 5 (17.24)

Confused/forgetful, 3 (10.34)

Unhappy, 3 (10.34)

Angry, 2 (6.90)

Nervous, 1 (3.45)

Regressing, 1 (3.45)

What sort of tasks do you help the OA with?

IADLs, 23 (79.31)

ADLs, 10 (34.48)

OA is independent, 3 (10.34)

How has that been affected the past few weeks?

Decreased ability to help OA, 7 (24.14)

As their care partner, how are necessities such as food and medication being provided?

Family member brings it to them, 23 (79.31)

Delivery of purchased food/medications, 14 (48.28)

Provided by facility, 8 (27.59)

Aide, 6 (20.69)

Food program, 2 (6.90)

What items have been difficult to obtain?

Medications, 5 (17.24)

Paper goods/toiletries, linens, 3 (10.34)

Food, 2 (6.90)

PPE, 1 (3.45)

Why has it been difficult to obtain these items?

Long lines, 3 (10.34)

Lack of supplies, 3 (10.34)

Have you used any additional resources to assist with these needs?

Online purchases, 14 (48.28)

Help from others (self, family, neighbors), 5 (17.24)

Virtual medical consultations, 4 (13.79)

Delivery of already-prepared food, 4 (13.79)

Virtual technology for socialization, 3 (10.34)

Picture slideshow, 1 (3.45)

What have you found to be the most challenging aspect of providing care for your loved one during this pandemic?

Emotional support, 7 (24.14)

Obtaining medical supplies, 3 (10.34)

Physical care, 2 (6.90)

Obtaining food, 1 (3.45)

Why?

Safety guidelines, 4 (13.79)

Out of stock, 2 (6.90)

Fear, 2 (6.90)

Long lines, 1 (3.45)

What concerns do you personally have in caring for an OA in this pandemic?

Keeping the patient safe, 13 (44.83)

Social isolation of the OA, 9 (31.03)

Keeping oneself safe, 7 (24.14)

Functional/cognitive decline of OA, 4 (13.79)

Meeting health needs of the OA, 4 (13.79)

No concerns, 4 (13.79)

Meeting physical needs of the OA, 2 (6.90)

Meeting material needs of the OA, 1 (3.45)

Financial problems, 1 (3.45)

From your perspective, how is your OA coping with the current situation?

Well or very well, 9 (31.03)

Anxious, 6 (20.69)

Emotional distress, 5 (17.24)

Frustrated, 3 (10.34)

Lonely, 2 (6.90)

Angry, 2 (6.90)

Sad/depressed/tearful, 2 (6.90)

In what ways is the pandemic affecting your loved one?

No change, 10 (34.48)

Worsening cognition, 2 (6.90)

Positively, 1 (3.45)

What activities is the OA doing to stay healthy and occupied while at home?

Self-care, 28 (96.55)

Watch TV, 22 (75.86)

Cognitive Activity, 12 (41.38)

Physical Activity, 9 (31.03)

Social interactions in person, 8 (27.59)

Distraction/keeping busy, 6 (20.69)

Virtual social visits, 5 (17.24)

Passive Activity, 4 (13.79)

Rituals/routines, 4 (13.79)

Hobbies, 3 (10.34)

Daily supplements/vitamins, 3 (10.34)

Unfinished business, 2 (6.90)

Sleeping, 2 (6.90)

Eating healthy, 1 (3.45)

Dancing, 1 (3.45)

How are you as the care partner staying safe and healthy during this time?

Self-care, 29 (100)

Watching TV, 25 (86.21)

Cognitive activity, 13 (44.83)

Physical activity, 11 (37.93)

Social interactions in person, 10 (34.48)

Virtual social visits, 10 (34.48)

Work from home, 8 (27.59)

Social media, 5 (17.24)

Distraction/Keeping busy, 4 (13.79)

Homeschooling, 3 (10.34)

Rituals/routines, 2 (6.90)

Hobbies, 2 (6.90)

Eating healthy, 2 (6.90)

Music, 2 (6.90)

Daily supplements/vitamins, 2 (6.90)

Unfinished business, 1 (3.45)

In what ways would you say COVID is affecting you?

Psychologically, 16 (55.17)

Socially/not able to go out, 9 (31.03)

Financially, 4 (13.79)

Employment change, 4 (13.79)

Less time, 3 (10.34)

Physically/changes in sleep, 1 (3.45)

More time, 1 (3.45)

Increased appreciation, 1 (3.45)

Increased ambiguity, 1 (3.45)

None, 1 (3.45)

Who can you lean on for support during this time?

Immediate family, 23 (79.31)

Friends/neighbors, 17 (58.62)

Distant family, 8 (27.59)

Other aides, 1 (3.45)

Does the patient have anyone he/she keeps in touch with outside of the home?

Immediate family, 16 (55.17)

Friends/neighbors, 2 (6.90)

Religion/spiritual affiliation, 1 (3.45)

Distant family, 1 (3.45)

Is there anything you can think of that would make it easier on the OA to obtain the care or companionship he/she needs when isolating at home?

Third-party well-being checks, 7 (24.14)

Virtual capabilities or training, 6 (20.69)

Socialization for the community/church, 5 (17.24)

Someone to provide needs right to the house, 3 (10.34)

More virtual engagement with healthcare experts, 2 (6.90)

Keeping a routine for the OA, 1 (3.45)