Table 2:
The Role of Paid Caregivers in Home-Based Dementia Care
| Theme 1: Vulnerability of Advanced Dementia |
| “You worry a great deal because you are entrusting your parent that you love a great deal to a total stranger… Now, a regular person can really tell you, ‘Okay, this person pushed me’ or whatever, but a person with dementia who can’t tell you that something happened-- that’s a lot of worry for me.” (Caregiver 20, daughter) |
| “You have to check that [security] camera because… you’re going to go at work and not be at peace, not knowing what’s going to happen with your mom. Is she being fed? Is she being changed her diapers?” (Caregiver 18, daughter) |
| “You have to be vigilant… [When the paid caregivers first started] I acted like I was dumb, but I paid attention. I talked with them and with my uncle… I was trying to understand what they said when I wasn’t around.” (Caregiver 14, niece) |
| Theme 2: The “Right” Paid Caregiver/s |
| I think I probably had, during that [initial] time, at least 10 or 15 different people… I didn’t have the greatest experience with a lot of people…. and so finally, I settled down on one person who is very good and knows about this. Her mother had a similar problem of dementia so she knew exactly what was going on and she’s doing an excellent job” (Caregiver 3, husband). |
| We were having where workers came in and worked with him and didn’t want to stay because he woke up at night… so we had a transition of people, different workers coming and going for a time and that’s very disruptive… We just were very fortunate that we finally got two people that they’re so diligent with their work. They care, they come in, and they do their job. They work well with us. They work well with my dad” (Caregiver 20, daughter) |
| “I called [the agency] up and… I said, ‘You know what? It’s not working out for all the hours. I’d like the woman from 2:00 to 6:00, Monday through Friday with your agency, but can I go to another agency [for the other shifts]?’ He says, ‘Of course, you can…’ I went to another agency in Brooklyn. They found me a Haitian person that I’m very happy with now.” (Caregiver 9, daughter) |
| Theme 3: Paid Caregiver Continuity |
| “[The person with dementia is] more confused or they’re more agitated when you have a variety of different people coming through… They’re more confused, and they’re more agitated… it’s like resetting constantly. They get agitated and confused and then you don’t know whether it’s the medicine that’s making them confused and agitated or whether it’s just that they’re not in sync with the new person. Again, it works a lot better when you have somebody, stable people who are good and a good fit.” (Caregiver 20, Daughter) |
| “There are things that [people with dementia] have to follow-- a routine-- because that’s another thing we want to do… The worst thing you can do is change things for them consistently or constantly. You have one person come and do this, that way and the other, it’s very confusing for them. The more you can maintain a routine, the better for the patient or the person that you’re caring for because they’re in a groove. You have to adjust to their groove.” (Caregiver 5, Son) |
| “That somebody new would have to come in and I couldn’t be there to-- like my mother, anybody new would scare her. She would be uncomfortable. So I was concerned that a new person may have to come in and how do I deal with this during COVID?” (Caregiver 11, Daughter) |