Background
Methods
Participants and recruitment
Person with dementia’s situation of living (N; female/male) | • Private apartment (6; 3/3) • Nursing home (6; 3/3) |
Informal caregivers’ relation to person with dementia (N; female/male) | • Former spouse (1; 1/0)/spouse (2; 2/0)/partner (1; 0/1) • Child (5; (2/3)/child-in-law (2; 2/0) |
Interview mode for general practitioners (N; female/male) | • Face-to-face (8; 4/4) • By phone (4; 1/3) |
Interview mode for formal caregivers (N; female/male) | • Face-to-face (5; 4/1) |
Number of hospitalizations discussed, N (Median) | • 1–7 (3) |
Interview conduction
Analysis
Results
1) Context and nature of hospitalizations in our study | • Planned treatments/operations | |
• Unplanned treatment | • Aggravation of the general condition • Exsiccosis • Ealls in the nursing homes/at home • Other conditions | |
2) Preventability of hospitalizations | • Most hospitalizations not preventable/unjustifiable from interviewees point of view | |
• GPs strive to prevent hospitalizations wherever possible | ||
• Informal caregivers do not see themselves in a position to decide about the necessity of a hospitalization | ||
3) Factors contributing to hospitalizations | ||
• Dementia-specific factors | • Agitation/restlessness | |
• Tendency to stray/tendency to run away | ||
• Neglect of restricted mobility | ||
• Declining ability to communicate about symptoms (and accidents) | ||
• Shift of responsibility from person with dementia to informal or formal caregivers | ||
• Context-specific factors | • Nursing-home-specific factors | • Safeguard against legal consequences |
• Qualification of nursing home staff/resident-nurse-ratio | ||
• Non-availability of the GP | ||
• Hospitalizations for examinations/treatments also available in ambulatory settings | ||
• Communication (problems/lack of communication) | ||
• Interrelation between dementia- and context-specific factors | ||
4) Ideas for reducing hospitalizations | • Qualification of formal caregivers in nursing homes | |
• Twenty-four-hour-GP-emergency service | ||
• Adequate compensation of regular home visits and supporting visits from ambulatory care services |
Circumstances and reasons for the hospitalization of persons with dementia
Preventability of hospitalizations
Interviewer: And would you, in your opinion, say that it was necessary that she was admitted to the hospital after this incident? General practitioner: Yes, with unconsciousness and after collapsing, one should take a look. There is always the possibility of it being a heart attack or a stroke which you can only clear up in a hospital.
Informal caregiver: Definitely, yes, definitely. There are situations where a person with dementia falls or becomes ill with something that the nursing home or the private home environment cannot evaluate or are not equipped to deal with. I am completely convinced that I’d be the person to 100% support sending these people to the hospital quickly even if a doctor just quickly takes a look to make sure everything’s ok […].
Factors contributing to hospitalizations
Dementia-specific factors
Agitation/restlessness
Formal caregiver: […], that she fell and had that facture, she automatically gets classified as at high risk for falls […] So a walker was ordered for her, but she doesn’t use it. […] animate her not to walk too quickly, because sometimes she downright dashes down the hallway.
Tendency to stray/tendency to run away
Formal caregiver: […] And the other [day care center] is far more open and he ran away without coming back at all more often. This also caused the fall, which led to him having to be hospitalised. […]
Neglect of restricted mobility
Formal caregiver: […] That one time she fall pretty badly […]. She had degenerated significantly, especially physically. She couldn’t stand up alone anymore, as I said before, she forgot that she couldn’t stand up on her own. […]
Declining ability to communicate about symptoms (and accidents)
Formal caregiver: […] Especially in people with dementia, the problem exists that they cannot express pain in detail so that an X-ray is necessary to see where the pain comes from and where something might be broken.
General practitioner: […] if there had been afflictions, it is likely that she would not have been able to interpret these. […] If one asked her ‚Do you have heartburn?,‘ I think she would probably say ‚no‘ but wouldn’t even know what that is.
Shift of responsibility from person with dementia to informal or formal caregivers
General practitioner: […] He [the informal caregiver] calls sometimes, because we talk on the phone intermittently. I ask him to call me back when we give diuretic medications, then he tells me about the process, whether she, how the weight developed. He comes by to pick up prescriptions […], when they come together, he is the one who leads the conversation. […]
Informal caregiver: It’s just that she didn’t do it herself anymore. So I apportioned her pills and had them for her, there are containers with days of the week, not days of the weeks but morning, noon, and evening. […] And so I did that for her, well, and later, when she couldn’t do it on her own anymore, the ambulatory care nurses took care of it. I would apportion the pills and ask the ambulatory care nurses to ‘please keep an eye on it as well’. Or I checked in the mornings myself.
General practitioner: […] or the attention from family members that care so much about the affected person, that they immediately call the air ambulance. […]
Context-specific factors
Nursing home-specific factors
Safeguard against legal consequences
Interviewer: And would you, in your professional opinion, say that they always make the right call or do they call the ambulance too often or…? General practitioner: Well, they naturally have to call the ambulance when in doubt out of legal reasons.
General practitioner: […] In one ward, every time [a patient] bumped into something or fell down and stood back up without any complaints, he was sent to the hospital for legal reasons, because of the home supervisory authorities. So in one year about 35 times. […]
Qualification of nursing home staff/resident-nurse-ratio
General practitioner: You simply need someone, who will sign for it … who will take responsibility and stick their neck out in case something goes wrong. And the less educated and the more overwhelmed they feel, they’d naturally rather call the ambulance one too many times than once too late.
General practitioner: […] it very much depends on the individual, on the situation, since they [the nurses] carry a lot of responsibility and are not necessarily qualified to do certain things or decide certain things, while being under a lot of pressure not to make any mistakes. Because of this pressure not to do anything wrong a patient is sent to the hospital more often […].
Non-availability of the GP
General practitioner: Yes, because we know them. The after-hours emergency service doesn’t know the patients. It’s hard to ask a patient with dementia about their medical history or about known illnesses, thus, they have to depend on the documentation kept in the nursing home and the diagnoses in the nursing home’s computer. But they are, for example, missing all the hospital reports from earlier stays and different hospitals. Generally they only see the most recent hospital report so that we simply know the patients better and also know if something similar had already occurred before, what the cause was, how it was treated, how it went away… All things that the emergency service cannot know. Naturally, the emergency service physicians have to depend on their senses then and, if they cannot figure out what is wrong, the only option left is a hospitalization to identify the issue.
Interviewer: And would you say that it was a necessary hospitalization? General practitioner: It could have been avoided, if they had somehow reached me at 7 p.m. or 8 p.m., then I would have come by after my practice hours and then she would have received MCP and could have stayed at home. […]
Hospitalizations for examinations/treatments also available in ambulatory settings
General practitioner: So the [hospitalisations] that I experienced were okay, because he needed an infusion and then one needs to make sure that the patient gets back on his feet quickly. Um, and in this case, it was surely best to use an intravenous fluid replacement method because otherwise everything would have taken much longer. I feel… that subcutaneous fluid substitution is not as good, some facilities do this alternatively. […] And especially when it’s an emergency situation, then something needs to be done quickly and intravenous substitutions are simply not possible in nursing homes, because there is no one there qualified to monitor them.
Formal caregiver: […] for example when I see someone with a foot like that in the morning, then I have to do something. Then the problems start. I could say, ok, I’ll take them to the GP, he’ll send her in for an X-ray, they check out what’s wrong or sometimes it goes right to the surgeon’s, […]. In hospitals everything is available, if the patients are sufficiently chaperoned there, it is much easier to do it that way. But, for example, with a (person B) you can’t –even if the son were on board- say, ok- I’ll take her in my car and drive her to the doctor’s office, I... […] You need at least two people. Because, at least while (person B) was still mobile, if they stopped at a crossing, at a red stoplight somewhere and she felt like it, she would just get out of the car. Or you have your car somewhere, she runs off, and you can call after her, but no. And she’s fast, very fast, well not anymore unfortunately but, well. So, I guess, that then (...) exams, where she was in the (hospital), could have been avoided with enough chaperoning- if two people were available. But exams in the clinic are much easier. That needs to be said.
Communication
GPs and ambulatory care services seem to generally have little to no contact; therefore, an exchange of information about the state of health of the person with dementia does not take place. Only one exception was reported by a GP, describing monthly to quarterly meetings, with representatives of an ambulatory care service, to discuss common patients.General practtioner: Yes, well I find the responsible nurse or nursing assistant and we sit down together. Then I don’t have to visit the patients that I’ve known for a long time, where the nurses say: ‘Nah, everything is stable, the same as always.’ It’s a bit of a judgement call. […] Then we exchange information and it’s basically like a visitation, well it is a visitation.
Some of the GPs mentioned that close contact with the informal caregivers (caring for persons with dementia at home) would give the benefit of having more accurate information about the state of health and the need of support of the person with dementia. Usually such close contact cannot be achieved during the hectic, daily office routine. It is also perceived to be the caregiver’s responsibility to initiate contact or information exchange. One informal caregiver reported that she does not really know which medications the person with dementia takes and whether there may be side effects.General practitioner: Exactly, we have our main ambulatory care service, […] with whom we meet every four weeks or, as of late, every quarter. The main ambulatory care service caregiver and their boss come and we simply go through and discuss all our common patients together with my assisting physician, who does more of the house calls and partially knows the patients better than I do.
General practitioner: One should have a regular appointment in during practice hours, every quarter, where one can, can compare what he says and what she says. In some cases it’s two separate worlds, and in some cases it might have been interesting. […] Anyway, then [the initiative] would have had to come from the family members. And that, yes that is difficult. That, because that for me, was incredibly difficult for me to see during these very short consultations.
Interviewer: But you didn’t, let me say, exactly know what all those pills are for? Informal caregiver: Nah, nah, yea I always had to read through [the information] and they were often for the heart. […]
Interrelation of dementia-specific factors, context-specific factors and illnesses/accidents
Ideas for reducing hospitalizations
The formal caregivers also mentioned the prolonged availability of a GP, who knows the patient well, as a potential means to reduce hospitalizations.General practitioner: The (name)-ambulatory care network is modelled after procedures in (city) and is being planned for some nursing homes here as well. That an around-the-, around-clock-, so, 24-hour GP care is to be available, that you [the GP] are constantly available via cellphone and are supposed to come right away. That was…, probably against the background of ‘reduction of hospital stays’, I think so, yes. […]
Formal caregiver: So in the evenings when the GP is not available […], or on Wednesdays when the practices are closed and no home-visits are planned. Then we have to, our only option is to call there [emergency medical service], and that’s what we do.
Interviewer: Is it equally as good as if the GP comes?
Some GPs stated that hospitalizations might also be prevented if regular home visits and supporting visits from ambulatory care services were adequately compensated (e.g. monitoring acute respiratory diseases, caring for chronic wounds or therapy against hyperhydration). This would mean that the patient could be treated at home and does not have to be transferred to the hospital.Formal caregiver: No, it always depends on the type of physician. There are, in the emergency medical service […], if someone has the flu or pneumonia and a gynecologist comes to our nursing home. […] or it can be a pediatrician. […] It used to be different, but now it’s more often the case that when the physicians themselves are also unsure, they send the patients to the hospital as well. […]
General practitioner: It is certainly true that we send a lot to the hospital because we cannot deal with the problem or because we cannot visit the patient every day because we aren’t paid for it. We simply can’t. […] Dementia in combination with chronic wounds for example, if we could make it there regularly to look at the wound […]. We just had a case, it (the wound) became larger despite the nurses’ care and recommendations following photo documentation. Has to be sent to the hospital for two weeks to receive intensive care there. Perhaps, but we cannot be sure, if we had been there more often, it would have been better. It just isn’t possible to visit more often than every two or three weeks.