The coordinator role and functions
The participating persons with dementia and their informal caregivers differed in age, symptoms, social network, as well as life situation in general. Accordingly, their need of support from their coordinator varied. The coordinators shared this view and described a high degree of variance in how much, and what kind of, support the dyads received throughout the intervention period. Some expressed being content with a brief telephone conversation once a month, while others used the monthly telephone calls for longer sessions of counselling, organizing various support measures or simply just to talk. It also varied how much the coordinators were contacted outside of the monthly telephone calls. This also had various reasons, ranging from how to prevent pills from falling on the floor while taking them out of the pill box, to arranging care solutions while the informal caregiver needed to travel, or the informal caregivers needing some to talk to about minor or major concerns. Thus, the dyads’ perception of how their coordinator affected their everyday lives did also vary. Besides the home visits, it turned out to be only the informal caregiver who maintained contact with the coordinator, an aspect we will return to later in the results section. The first research question considered the coordinator role and functions. Although most of the dyads’ perspectives are described through the informal caregivers, the coordinator role and function affect the dyad as a whole and cannot be detached to only concern the informal caregiver. We found that the coordinators took three different functions in their relations with the dyads, to meet the variance in care needs. That is the function of being a safety net, being a pathfinder, and being a source for emotional care and support. In addition to the questions we had set out to answer, we found that good leadership and a trusting work environment was crucial for the coordinators to function in their roles.
The coordinator as a safety net
In general, all dyads expressed that they were satisfied with being part of the project. Some described how they experienced being at a point where the situation was stable, having the necessary support for the time being. One spouse described how she had struggled earlier, after her husband was diagnosed and they needed to find new solutions to cope with everyday challenges:
I feel that perhaps it was too late to get help. The help we needed, we found out on our own and we had needed it when he got the diagnosis. (…) But if I’d had someone to play ball with from the start… (Participant O, informal caregiver)
She emphasized how she had been in need of a coordinator at an earlier time, when her husband got the diagnosis. At the moment, she felt she had control and knew where to turn if she or her husband needed anything. However, she was aware that the situation might change and that it was good knowing the coordinator was there. Thus, the coordinator represented a safety net, that they could turn to when necessary, rather than an active contributor in their everyday lives. The spouse of a person who was recently diagnosed with dementia, and had not established any contacts within the system emphasized this dimension even stronger:
As I say to (coordinator) when she calls: ‘at the moment, everything is fine, but thank you for being here and in the future when we perhaps are in need of help, we know someone will be there for us’ (Participant I, informal caregiver)
Although some dyads perceived that there was little the coordinator could do for them at the moment, they emphasized the reassuring aspect of having a personal coordinator: ‘someone who knows us’(Participant I, informal caregiver), ready to help if the situation should change. The coordinators confirmed this perception and emphasized how the regular contact helped them observe small changes in the dyads’ life situation as a whole. Further, the continuous documentation laid a foundation for future assessment of care provision by other instances, especially for the health administration, who are in charge of the formal assignment of public care and support. The coordinators’ leader underlined:
Later, when they apply for something, nursing home or something, the documentation you do in the patient journal are good background information for the health administration.(Participant R, coordinators leader)
The coordinators and their leader had a clear comprehension of the importance of observations, documentation and relational knowledge concerning these patients’ and informal caregivers’ current and future needs.
The coordinator as a pathfinder
One of the informal caregivers described how navigating the health administration and organizing the services for the persons with dementia were challenging and distressing: I’ve felt that it’s incredibly difficult to find that thread, where do I start to wind? (M) Several informal caregivers described this sense of not knowing where to start when seeking help. First, they found it difficult to identify and describe what the problem actually was. Second, due to limited knowledge about the municipal care and support services, they found it hard to identify and contact the right instances that might be able to help them. One spouse described how they experienced this in the time following her husband being diagnosed with dementia:
It was a lot of phone calls, you know, I called the wrong persons. Then I got through to someone, I think it was at the social security or something, who gave me the number to (right person) and then things started to happen. (Participant C, informal caregiver)
To me, it’s been very important (the coordinator’s help), because it’s a lot of work and many things to follow up, you know. It’s appointments with the general practitioner, the ophthalmologist, then he has some skin problems, so it’s the dermatologist... Then you need to stay in touch with the homecare services, and remember to buy medicines at the pharmacy and remember this and that and then less and less is working at home. So I felt that having one person to relate to has been very good for me. To kind of see some steps ahead, you know, she can say ‘I think you might need… and we might as well apply right away’ (…) If I feel that we need some more help, I talk to (coordinator), I don’t talk to anybody else. (Participant K, informal caregiver)
The description illustrates some of the vast complexity in caring for a person with dementia. For this participant, the coordinator had, in many ways, taken over coordination of the care and support as a whole. Although the informal caregiver experienced a heavy burden, the coordinator had an overview over the total situation and did most of the communication with all the different healthcare providers involved. Thus, we have found the metaphor ‘pathfinder’ as an appropriate concept describing this crucial coordinator function of keeping a survey of the dyads’ situation as a whole and leading them on the way to possible means of support. In conversation with the coordinators concerning the time and resources they used on this kind of work, they claimed that in total it did not consume much time. They also experienced that it helped provide purposeful support, thus reducing waste of resources within the health and care services. However, they emphasized how they primarily perceived this consideration as a means to safeguard the persons with dementia:
No person with dementia wants to get a lot of people into their homes, nor a lot of services. They want exactly what they need and nothing more. (Participant P, coordinator)
The coordinators perceived that most participating persons with dementia were reluctant to receive support, especially within their home, and that they wanted to keep support at a minimum. The coordinators’ knowledge of the available support and how to attain it, and their thorough knowledge on the dyads’ life situation as a whole, enabled them to recommend care and support that was individually adapted. Throughout their follow-up process, the coordinators had slightly differing support approaches when applying for services, – a process that at times might be quite strenuous due to a complex administrative system. While one of the coordinators aimed at informing and guiding on available, adequate services and how to apply, the other coordinator also helped writing application forms as well. Although the practical work did not differ much, the perceptions of how this worked differed, as illustrated by this informal caregiver:
(The coordinator) can say “application forms for this and that is on the internet or I can send it in a mail if you have difficulties with the net” or something like that. But it’s not like I can say “we need this and that…” you know, to simplify the application process. If you’re used to orient on the internet, it’s actually nothing she’s said that I hadn’t found out on my own. But still, it’s good to have her, because you can kind of check with her “can I do this or that, does it work like this?” but still, you have to move on, on your own. (Participant G, informal caregiver)
Although this informal caregiver found it hard to handle this challenging procedure himself he still found support in being able to seek advice from the coordinator. Overall, despite differences in perceptions, most dyads experienced the coordinators as someone who helped them find and consider different possibilities, helping them cope in their everyday lives.
The coordinator as a source for emotional care and support.
Some informal caregivers also found the coordinators contributions in terms of emotional care and support vital. The need for this kind of care might be due to a general high level of distress and vulnerability, experiencing a crisis during the project period or simply dealing with the multiplicity of small everyday challenges. One spouse described how she almost despaired when they had come home from a travel and she couldn’t reach the coordinator.
I couldn’t reach her that day, I felt that I almost (grips around her throat and chokes)… but then I got through and then it’s half an hour and then all problems are solved… plus some I didn’t knew I had. (Participant A, informal caregiver)
The remark illustrates how the coordinator may be seen as someone who help making everyday challenges and suffering endurable. Further, it indicates how the coordinator might serve as a problem-solver over the telephone. The coordinator did not only answer to the dyads’ everyday challenges, she also brought to light related issues that the dyads did not think about themselves, as well as presenting possible solutions to them. Other informal caregivers emphasized the benefit of having the coordinator to contact, also for emotional support:
If I’ve been desperate, you know, this and this has happened. Then I call and talk to her and usually, she has a good idea, so it’s very good talking to her. (Participant M, informal caregiver)
The importance of having someone to talk to one-to-one, who knew them and their current life situation were addressed by several informal caregivers. Combined with input on how to cope with their present challenges, these opportunities to talk to a coordinator that listened and supported them was crucial for them. One of the coordinators described how they experienced this vital aspect as well: “I feel that I often am that ‘container’ that listens and confirms’ (Participant P, coordinator). A daughter, caring for her father with dementia described how essential it was for her to be seen and taken care of herself, by the coordinator:
I get to talk to someone who perhaps has another view and some knowledge, because I know very little about this myself. (…) And someone who tells me: ‘you know, you need to take a time-out!’ I need that someone tells me (…)I feel that it’s not only one-way communication, that it’s only me who calls and ask if anything comes up, but that they actually make contact… (Participant N, informal caregiver)
Consequently, some informal caregivers experienced the benefit of getting support, but also a little push, to help them make difficult decisions and taking care of themselves in times when caring for the family member with dementia became all-consuming. Some of the dyads also found themselves in the midst of challenging life situations not related to the dementia condition itself. One coordinator experienced how a complex family conflict created an extra burden for the dyad. Although there was little the coordinator could do about the issue at hand, she still found it crucial to listen, support and acknowledge the dyads’ attempt to cope with the situation:
At least it has become (natural), because it’s what she needs. (…) And she does a lot of good things (…) so she kind of needs someone who listens and supports and say ‘this was good’(Participant P, coordinator)
Although peripheral to the direct support of the person with dementia, the coordinator recognized how the surroundings affected the everyday life of the person with dementia. Thus, aiding to relieve the tense situation within the family would be beneficial for the well-being of the person with dementia.
Emphasis on trust based working conditions for the coordinators
Although not an initial focus of inquiry, the coordinators underlined the importance of having a trust based relationship to their supervisors to be able to fulfill their tasks as coordinators:
From the first moment the project was presented, we’ve had full support and recognition on this as something to prioritize and spend time on. And that has made it easy to get going and I think that is important. About having a leader and get time to do the tasks. We haven’t spent time on defending why we have to take this and that home visit, you know. And that’s not to be taken for granted. (Participant Q, coordinator)
An important aspect for the coordinators in order to be able do their tasks was to get recognition and trust from their superiors on their priorities and choices of action. Likewise to get support and supervision in challenging situations:
I sometimes get a bad conscience and a little stomach ache… but then, I am quite good at talking about all my feelings (laughs). But to me it’s important, in this job, to have good colleagues that I can talk to, because I don’t talk about it at home. And I think that it’s quite natural to have these feelings, so I don’t really think it’s a problem. Perhaps it’s a little barometer, I don’t know. I use (other coordinator) a lot, and (leader). Good supporters. (Participant P, coordinator)
The coordinators described how they experienced feelings of unease and emotional distress as a part of their work as a coordinator. Although straining, the coordinators did not describe this as a negative thing: rather the negative emotions were perceived as an indicator of the ability to build empathy and get involved in a relationship with the participant. Equally important though, was the emotional and professional support from co-workers and leaders. The leader agreed and confirmed how this kind of support should be prioritized:
Let them get the chance to reflect and mature as coordinators, I think a lot about that. I want to handpick personnel, you know. It is something very serious about being a coordinator, because you have such an impact on peoples’ lives and you’re not to be too easy on it either.(Participant R, coordinators leader)
The mutual trust and recognition between the coordinators and their leader seemed to be crucial for the feasibility of the trial. This statement further reveals a serious awareness of the gravity of the coordinators work. Both coordinators and their leader described a determinate focus on how to support the individual, regardless of if and how this support was measureable or might fit into goal attainment scales.
Empowering the person with dementia in decision-making processes
Considering the second research question, we found that meeting the person with dementia alone during the first home visit was perceived crucial for the coordinators to get an impression of the persons’ values and preferences. However, the coordinators found it challenging to maintain an empowering relation with the person with dementia throughout the study period.
Challenges in establishing relationship with the person with dementia
During the first home visits, the coordinators had one-to-one conversations with the participants living with dementia, based on the question ‘What’s important to you?’ in addition to mapping out clinical data. The second home visit solely focused on building a relation with the dyads. Here, they emphasized involving the persons with dementia in the dialogue and getting their views on the themes of discussion. This was deemed valuable to be able to get an impression of the person and the persons’ values and preferences.
“You get to hear a lot about their lives and experiences and you get to know what’s important to them, and what has been important to them. … You sort of get to know their pulse a little… You get an image of who this is. If I ask ‘what’s important to you, now?’ it’s not always that easy to get an answer.” (Participant P, coordinator)
In this statement we also see a recognition of how the answer to the question of ‘What’s important to you’ not necessarily is found by asking directly, but rather is hidden somewhere within the participants’ narratives. However, during the continuous follow-up by telephone, which was intended to sustain the contact with both members of the dyads, the coordinators found it challenging to uphold direct contact with the persons living with dementia. The frequency of once a month and contact by telephone made this challenging, especially because of the person’s illness-related memory problems:
Calling to someone who has dementia… It’s not a good way to communicate, you know. And building a relation to someone with dementia and meeting once every third month or half-a-year is not good either. Because the person with dementia won’t remember you and will get anxious every time. … It might have worked in some cases, but it’s not right towards the person with dementia. (Participant P, coordinator)
Thus, the monthly follow-up by telephone turned out to be only between the coordinators and informal caregivers and none of the persons with dementia initiated contact with the coordinators themselves. Most of the persons with dementia described experiences with support that were facilitated as part of the follow-up and one of the persons with dementia described it like this:
We’ve got this and that, so it’s been great… comes home and we sit and talk, so it’s been good. She’s coming next Friday. (Participant F, person with dementia)
This person had a clear view of who the coordinator was and valued the home visits and the support they had received through their coordinator. The other participating persons with dementia, did however describe little conception of who their coordinator was and what their exact role was. The following conversation between interviewer (I), person with dementia (P) and informal caregiver (C) illustrates this issue.
I: Do you feel that you have a relation to (coordinator)?
P: I really can’t say that
C: Do you know who we are talking about?
P: No… I know I have met her…
C: Many times, she’s been visiting us several times
P: You know, I don’t recognize all those actors out there
C: I think that if you’d seen her, you would have recognized her
P: I guess
(Participants K/L, informal caregiver /person with dementia)
It must be underlined that the person in question throughout the interview had little difficulties in recollecting details and aspects from his everyday life. Some persons with dementia expressed a remembrance of the meetings and the coordinators as nice persons, but they expressed little perception of the coordinators as someone who helped and supported them in any way. Thus, although the persons with dementia took active part in the interview conversations and shared their experiences of the support they received in general, they had little substantial response regarding their perception of the coordinator role.