Participant characteristics
Fifty people were initially referred and forty-one were screened for eligibility. Twenty (70%) carers were enrolled, n=18 started, and n=16 completed all eight sessions (Figure 1). Two completed only three sessions, reporting that some sessions were irrelevant to them. For carers who completed all eight sessions, it took a median of 73.5 days, (interquartile range [IQR] 69.0, 90.8, range 55-220 days) to complete the program. A session was considered “delayed” when >14 days had passed since the previous session. Delays occurred due to illness, caring responsibilities and work commitments.
The majority of carers who commenced the program were women (n=12, 60%), were not in paid employment (n=15, 75%), were spouses of the person living with dementia (n=15, 75%), nominated English as their first language (n=18, 90%) and had completed secondary school (n=14, 70%). Their median age was 67.5 years (IQR 59.5, 76.3). The carers nominated a median of 82 hours per week caring (IQR 24.4, 159.5). The majority were recruited from carer support groups (30%), community health services (20%), care providers (15%) and social media (15%). Most lived in metropolitan Melbourne (n=15, 75%), n=3 (15%) lived in regional Victoria and n=2 (10%) lived in regional centres interstate.
For the PLWD, the most common diagnoses were Alzheimer’s disease (n=10, 50%), vascular dementia (n=5, 25%) and frontotemporal dementia (n=5, 15%). The median time since diagnosis was three years (IQR 1.3, 5.0, range 0-10). In terms of dementia stage, the majority of were rated as mild (n=9, 45%) or moderate (n=9, 45%) stages. Overall, their QOL-AD score was rated as fair-good and did not change over time.
Focus groups
There were seven carers who chose to participate in three focus groups face-to-face (3 in one, and 2 carers in the remaining two focus groups) and one carer participated in a one-to-one telephone interview.
Four key themes emerged from the qualitative analysis: overall experience of the program (acceptability); experience of using Zoom (feasibility); perception of START-online in relation to the timing in their carer journey (demand); and carer needs met and not met by START-online program (acceptability and effectiveness).
1. Overall experience of the START-online program.
All focus group participants enjoyed the program, and reported several benefits, but two also reported dissatisfaction with the content and structured approach. The importance of the interaction with the therapist, having a regular commitment with the therapist, and being able to discuss problems with a therapist who was empathetic and without judgement were reported by all carers.
“I mean, I really loved the program, I liked just sort of knowing that there would be someone there every week, although my START program, due to both of us being unavailable, just sort of continued for a long time, we missed a lot of weeks here and there...so I found with the START program that was my one, I had to commit. Because you know, I had committed to somebody else, so I’m going to show up and set that one hour aside.” Participant 009, female caring for her mother
“…the interaction with your therapist…they were very understanding. They weren’t abrupt, they weren’t misunderstanding. They were just pretty caring in the sense that they were easy to adapt to work with. They weren’t technical or by the book only, and I think that’s important.” Participant 011, male caring for his wife
Some carers reported learning new strategies to help them in their caring role, and felt that the program empowered, motivated or reassured them. Carers described the perceived effectiveness of the intervention and discussed the use and intention to continue to use strategies learnt from the program.
“…I think the main value was…two things, actually. Confirmation in part, of things that I was already doing or thinking, solutions that I was thinking up, so she was giving me confidence, perhaps, um and seemed interested in my thoughts on solving problems, and secondly of course, she came up with some ideas which I hadn’t thought of! And I could add them to my repertoire, if you like. I think we had quite good discussions about how to approach certain problems, and that was very good.” Participant 022, female caring for her husband
“Because as I say, not only did I have the person, but it motivated me to try to do my part…because I can’t expect everything to come from the tutor (therapist).” Participant 016, female caring for her mother
However, two carers felt less positive about the program.
“So overall it was good but not dramatic”. Participant 012, male caring for his wife
“And it missed the mark…” Participant 007, male caring for his parents
Most carers in the focus group also reported aspects of the program that could be improved or described sections and content of the program that they wanted more focus on did not find relevant or useful for them. This highlighted the need for a more individualised approach.
“And whilst the relaxation was fantastic, it was literally the last sometimes maybe 2 minutes, sometimes 5 minutes. So, in terms of actually getting any physiological benefits, I felt like it should have been a bit more of a main focus.” Participant 009, female caring for her mother
Several carers discussed the burden, or perceived amount of effort required to participate in the program, in terms of having to go through the material in the manual, or sessions being too structured.
“Part of me, and our sessions often went over, and I think a reason for that is there was almost too much structure in the book.” Participant 003, male caring for his wife
I think it was becoming onerous and sometimes tiresome, like eight weeks didn’t come soon enough sometimes…some of the questions were repetitive …and that added to the time.” Participant 019, male caring for his parent
“Like say we get to a session where we’re addressing something and I’m already quite versed in that particular topic, really, I just want to be able to talk, and I think Judy*, who was my therapist, she knew that too.” Participant 003, male caring for his wife
“…there was a lot of repetition of what is dementia and having a run on a day centre giving lectures on dementia, run a carers group that sort of things was… preaching to the converted.” Participant 021, female caring for her husband
2. Carers’ experience of using Zoom
The use of the web-based delivery and interface was also explored. Six carers reported positive experiences with the use of the videoconferencing, with all of those surveyed agreeing that being available online was a good way to access the program and almost all agreed it was easy to use Zoom for the program.
“Oh, I was lucky, the Zoom worked perfectly well, I'm being a bit … slow to develop my computer skills, I found that part perfectly alright.” Participant 005, female caring for her mother
“It didn’t start too well, if I remember we had communication problems with Zoom, but, completed it all.” Participant 022, female caring for her husband
Most carers felt the convenience of being able to participate from their own home and saving on travel time made it an accessible program.
“I can work a computer, and it takes less time. I don’t have to spend half an hour or an hour going into places and coming back again. Would cut down at least an hour and a half at least of my time. Going and coming from wherever it was.” Participant 016, female caring for her husband
“Well, I did not have to go into town to attend an appointment. I can do it any time. I guess it was safe for both parties, if you know what I mean. So from the point of convenience and safety I think and…. Transport needs as well time saving in that aspect it was good.” Participant 019, male caring for his parent
However, two carers discussed having technical difficulties.
“I suppose starting with the technology, the sort of delivery mechanism, I found that fairly awkward, Zoom is actually working very well today, at least for me, back then, it was quite disturbing to watch the screen. It was flickering and uh, shaking, and we tried many things to improve it, but without success. So, that side of it wasn't so good.” Participant 007, male caring for his parents
3. Participants’ feelings about START-online in relation to the timing in their carer journey
Some participants felt that the START-online program would have been most appropriate for carers in close proximity to the PLWD receiving the dementia diagnosis.
“Yeah I think if you were just starting out with caring, it would be a great resource to use. Because there are all sorts of traps that you fall into when you're just starting out, and you learn by experience. This could short-circuit a lot of those sorts of traps.” Participant 007, male caring for his parents
“Quite a lot of it is not terribly relevant, is it, once you’re that far down the track?” Participant 004, female caring for her mother
Participants in the focus groups also acknowledged that it was difficult to identify an ideal time to undertake START-online because caring situations and carer needs varied widely.
“I wouldn’t know, for anybody else’s story and how they’re handling the situation, … I asked for help because I feel like her personality’s changed a little bit, and I found that upsetting, and wanted to know how to manage that as I said for my comfort and her comfort too, so that’s when I asked for help, so I couldn’t make that, I couldn’t comment on when anyone else would you know, best need that help, it’s just individual and as it should be with a particular situation, yep.” Participant 013, female caring for her mother
One suggestion was for carers to be screened to determine whether START-online was likely to be beneficial for their situation.
“…maybe a health advisor or health professional is in a better position to know when you might be needing it or something, rather than trying to target a particular period after onset when you think the program should be introduced, because people’s conditions obviously change at different rates over time. And as Cath* said, the behaviours that her husband is experiencing are quite different from the ones I’m encountering with my wife, so it’s a tough call.” Participant 003, male caring for his wife
4. Carer needs met and not met by START-online
Carers discussed the isolation they often felt as well as not having the time to look after their own care needs because they prioritised the PLWD needs. Although the START-online program offered some support and strategies for carers, as mentioned above, several carers felt a more individualised approach would be preferable. Participants also expressed that the short-term nature of the program did not fully meet their needs, and described the need to access ongoing support throughout the carer journey.
“It’s more of having that lifeline, it’s more that the isolation becomes so, like you just become so isolated, you realise that the care recipient, my mum has two carers a day, she has people she does art with at night, I’m sending someone in that teaches her tech lessons, her world has as much support as could be put in place as possible, and then I’ll sit there and think, I’ve not seen anyone for a month. Like it’s all in the news about elderly people and they’re not getting visitors, and all this loneliness and isolation, and I kind of evaluated it and I thought, I am way more isolated than the actual care recipient. So in that sense I feel that’s why it’s really important, in fact I think it’s critical, carers have to have access to ongoing support based on, depending on what their needs are.” Participant 009, female caring for her mother
“It needs the discussion and the reassurances that every carer wants all the time, I’m guessing, needs a human touch and support as well.” Participant 012, male caring for his wife
“I think it would be really good if there was some sort of option to keep that going. To have some sort of ongoing contact, maybe just on a needs basis, you know, you could sort of send a message to him or her, and say, um, look I'm really struggling with this, could we have a short Zoom session on that or you know, something like that, whereas as it stood, it was delivered over the eight weeks and then it was finished, that's it sort of thing.” Participant 007, male caring for his parents
Similar comments were made in response to the question "How could we make START-online better?”
“Flexible times because I'm sure others are just as busy as I am. Could it be an ongoing support for carers?” Participant 005, female caring for her mother
“Greater emphasis on carers getting the support they need.” Participant 007, male caring for his parents
“Offer advocacy. More fluid approach to counselling and less constrained by manual… This could be done at baseline assessment to understand where carer's knowledge and use of services is to tailor the recommendations and strategies to them.” Participant 009, female caring for her mother.
Survey
The responses to the survey (Table 3) indicate strong support for the online delivery of the program with most of the questions relating to the delivery platform receiving a high agreement rate. The exception was question 11 “If I had a problem with Zoom I was able to recover the session easily” with only n=14 (78%) agreement. Only n=13 (72%) of participants regarded online access to be as good as in-person while n=16 (89%) said that overall they were satisfied with the program. The questions relating to the benefit of the program to them as carers were less enthusiastically endorsed. Only n=12 (67%) felt that START met their support needs. N=12 (67%) felt it was suitable for the stage of dementia that the person they cared for was at. Nevertheless, overall n=17 (94%) said they would recommend the program to other carers.
Table 3. Carer evaluation of START-online, n=18
Survey item
|
n (%) agree
|
i. Being available online was a good way to access the START program
|
18 (100)
|
ii. It was easy to use Zoom for the START-online program
|
16 (89)
|
iii. I felt confident using Zoom for the START-online program
|
17 (94)
|
iv. START-online met my support needs*
|
12 (67)
|
v. START-online was suitable for my situation
|
14 (78)
|
vi. START-online was suitable for the stage of dementia the person I care for is at
|
12 (67)
|
vii. I could easily talk to the therapist using Zoom
|
18 (100)
|
viii. I felt I was able to express myself effectively during the sessions
|
18 (100)
|
ix. I think the sessions provided online would be as good as in-person visits
|
13 (72)
|
x. START-online is an acceptable way to receive this program
|
18 (100)
|
xi. If I had a problem with Zoom I was able to recover the session easily
|
14 (78)
|
xii. I feel the START-online program will have a lasting effect
|
14 (78)
|
xiii. I would recommend the START-online program to other carers*
|
17 (94)
|
xiv. Overall, I was satisfied with START-online*
|
16 (89)
|
*1 missing
Quantitative outcome measures
Table 4 shows the outcome measures at pre- and post-program. Prior to START-online, carers showed moderate-to-severe levels of burden and subthreshold levels of anxiety. After START-online finished, there were small non-significant improvements observed for anxiety and burden. Some improvements were found for dysfunctional coping and potentially abusive behaviour using the MCTS. There was no change in quality of life for the PLWD.
Table 4. Outcome measures pre- and post-intervention
|
Pre-intervention, n=20
|
Post-intervention, n=18
|
|
95% confidence intervals
|
HADS anxiety (median, IQR)
|
8.5 (7, 10)
|
8.0 (6.8, 11.5)
|
Z=-0.344, p=0.731
|
-2.0, 2.0
|
HADS depression (median, IQR)
|
5.0 (4.0, 9.8)
|
5.5 (4.0, 8.5)
|
Z=-1.042, p=0.297
|
-0.5, 1.5
|
HADS total score (median, IQR)
|
13 (12.3, 19.5)
|
13.5 (10.3, 21.0)
|
Z=-1.597, p=0.110
|
-1.5, 3.5
|
ZBI (median, IQR)
|
47.0 (36.5, 52)
|
34.5 (32, 48.5)
|
Z=-1.61, p=0.246
|
-2.0, 9.0
|
BriefCOPE problem focused (median, IQR)
|
16 (12.3, 19.0)
|
19 (13, 21)
|
Z=-0.371, p=0.711
|
-3.5, 17.0
|
BriefCOPE emotion focused (median, IQR)
|
20.5 (17, 24)
|
22 (20, 26)
|
Z=-1.813, p=0.070
|
-5.0, 0.01
|
BriefCOPE dysfunctional (median, IQR)
|
19.5 (17, 21)
|
16 (14, 20.3)
|
Z=-2.420, p=0.016
|
1.0, 5.0
|
BriefCOPE total (median, IQR)
|
55 (46, 61.8)
|
57 (49.8, 62.3)
|
Z=-1.185, p=0.236
|
-12.5, 2.5
|
MCTS total (median, IQR)
|
4.0 (2.0, 7.8)
|
2.0 (1.0, 4.3)
|
Z=-2.103, p=0.035
|
3.6, 5.0
|
QOL-AD PLWD (median, IQR)
|
28 (23, 33)
|
27.5 (25.8, 32)
|
z=-0.142, p=0.887
|
-4.0, 4.0
|
HADS Hospital Anxiety and Depression Scale; IQR Interquartile range; MCTS Modified Conflict Tactic Score; PLWD people living with dementia; QOL-AD Quality of life in AD; ZBI Zarit Burden Interview