Background
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The first organisational difference concerns the start of the service: case management can be available either as soon as the initial symptoms of dementia appear or only after the formal diagnosis of dementia has been made. In those situations where the case management service is available from the initial symptoms, both case management and diagnostics are generally embedded in a multidisciplinary team of one organisation within the regional network. In contrast, in situations where case management support is only available after diagnosis, the case manager generally works in a different setting to the organisation where the diagnostics take place. Professionals and experts do not agree on when the service should be available [8]. Opponents of availability of case management from first dementia symptoms argue that in the early stages it is the general practitioner’s responsibility to provide support and coordinate care. In addition, opponents argue that involving a case manager in an early stage is expensive and not necessary for most clients. In contrast, advocates of the availability of case management from first dementia symptoms contend that patients and their informal carers often suffer from great uncertainty in the initial stages, and may therefore benefit a great deal from early support from a case manager.
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A second difference between organisational models of case management concerns the function of the case manager: case management can either be a separate specialist function or a combined function. In the latter case, the case manager combines the case management function with other roles, for instance also working as a community nurse, a general practice nurse or a social worker. Again there are arguments in favour of and against this solution [9, 10, 14, 17]. A perceived advantage of a separate specialist function is that the case manager can focus completely on dementia care and can therefore develop a lot of relevant knowledge and skills. However, an advantage of a combined function can be that the case manager may often already be providing care to the client and his/her carers (for example as a community nurse or general practice nurse), which may be positive in terms of the continuity of care.
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Organisational model 1: case management service is available from the first symptoms of dementia + case management is always a separate specialist function.
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Organisational model 2: case management service is only available after a formal diagnosis of dementia + case management is always a separate specialist function.
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Organisational model 3: case management service is available from the first symptoms of dementia + case management is often a combined function.
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Organisational model 4: case management service is only available after a formal diagnosis of dementia + case management is often a combined function.
Methods
Setting
Recruitment and sample of informal carers
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Respondents in organisational model 1: T1 n = 140; T2 n = 118
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Respondents in organisational model 2: T1: n = 140; T2: n = 98
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Respondents in organisational model 3: T1: n = 138; T2: n = 107
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Respondents in organisational model 4: T1: n = 126; T2: n = 106
Instruments
Analysis
Measurement % (n) | Model 1 | Model 2 | Model 3 | Model 4 |
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Gender
| At start of case management (T1) | At start of case management (T1) | At start of case management (T1) | At start of case management (T1) |
% (n = 140) | % (n = 140) | % (n = 138) | % (n = 126) | |
Men | 23 % | 24 % | 25 % | 30 % |
Women | 77 % | 76 % | 75 % | 70 % |
Age
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Younger than 55 | 38 % | 34 % | 32 % | 30 % |
55–75 | 38 % | 38 % | 37 % | 39 % |
75 or older | 24 % | 28 % | 31 % | 31 % |
Average age (range) | 61.1 (35–88 years) | 63.0 (30–88 years) | 64.3 (33–87 years) | 64.6 (27–92 years) |
Relationship to person with dementia
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Partner | 40 % | 48 % | 43 % | 51 % |
Daughter(−in-law)/Son(−in-law) | 54 % | 46 % | 47 % | 42 % |
Brother/sister/other relative | 3 % | 3 % | 6 % | 4 % |
Friend, acquaintance, neighbour | 3 % | 3 % | 4 % | 3 % |
Perceived health
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Excellent/very good/good | 65 % | 66 % | 67 % | 62 % |
Moderate | 34 % | 31 % | 30 % | 35 % |
Poor | 1 % | 3 % | 3 % | 3 % |
Duration of informal care
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Less than 1 year | 23 % | 24 % | 38 % | 37 % |
1 to 3 years | 40 % | 47 % | 41 % | 37 % |
3 to 5 years | 23 % | 15 % | 13 % | 13 % |
5 years or longer | 14 % | 14 % | 8 % | 13 % |
Ethical considerations
Results
Background characteristics
Satisfaction with the case manager
Caregiver burden
Measurement (n) | Model 1 | Model 2 | Model 3 | Model 4 | ||||
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Average (range, sd)
| At start of case management (T1) (n = 116) | 1 year after start of case management (T2) (n = 48) | At start of case management (T1) (n = 121) | 1 year after start of case management (T2) (n = 50) | At start of case management (T1) (n = 119) | 1 year after start of case Management (T2) (n = 48) | At start of case management (T1) (n = 108 | 1 year after start of case management (T2) (n = 59) |
My relative’s situation gives me hardly any room to live my own life | 3.1 (1–5; 0.09) | 3.1 (1–5; 0.13) | 3.3 (1–5; 0.09) | 3.2 (1–5; 0.13) | 3.3 (1–5; 0.09) | 3.4 (1–5; 0.13) | 3.1 (1–5; 0.09) | 3.1 (1–5; 0.12) |
It is not easy to combine the responsibility for my relative and the responsibility for my work or family | 3.1 (1–5; 0.09) | 3.3 (1–5; 0.14) | 3.2 (1–5; 0.09) | 3.4 (1–5; 0.14) | 3.4 (1–5; 0.09) | 3.3 (1–5; 0.14) | 3.3 (1–5; 0.09) | 3.4 (1–5; 0.1.3) |
I am letting down other people because of my involvement with my relative | 3.7 (1–5; 0.08) | 3.9 (1–5; 0.11) | 3.7 (1–5; 0.08) | 3.6 (1–5; 0.11) | 3.9 (1–5; 0.08) | 3.8 (1–5; 0.11) | 3.7 (1–5; 0.09) | 3.7 (1–5; 0.11) |
I always have to be prepared for my relative | 2.8 (1–5; 0.09) | 2.9 (1–5; 0.13) | 2.9 (1–5; 0.09) | 3.0 (1–5; 0.12) | 3.0 (1–5; 0.09) | 3.0 (1–5; 0.12) | (1–5; 0.09) | 2.6 (1–5; 0.11) |
My independence is at stake | 3.4 (1–5; 0.08) | 3.5 (1–5; 0.12) | 3.5 (1–5; 0.08) | 3.4 (1–5; 0.12) | 3.7 (1–5; 0.08) | 3.8 (1–5; 0.12) | 3.4 (1–5; 0.09) | 3.5 (1–5; 0.12) |
My relative’s situation needs my constant attention | 2.7 (1–5; 0.09) | 2.6 (1–5; 0.12) | 2.7 (1–5; 0.08) | 2.9 (1–5; 0.11) | 2.8 (1–5; 0.09) | 2.7 (1–5; 0.12) | 2.5 (1–5; 0.09) | 2.6 (1–5; 0.12) |
My involvement with my relative causes conflicts at home and/or at my work* | 3.9 (1–5; 0.08) | 4.1 (1–5; 0.11) | 3.9 (1–5; 0.08) | 4.0 (1–5; 0.11) | 4.1 (1–5; 0,08) | 3.9 (1–5; 0.11) | 3.8 (1–5; 0.08) | 3.9 (1–5; 0.11) |
My relative’s situation is never out of my mind | 2.5 (1–5; 0.11) | 2.5 (1–5; 0.16) | 2.7 (1–5; 0.12) | 2.7 (1–5; 0.16) | 2.6 (1–5; 0.12) | 2.7 (1–5; 0.16) | 2.6 (1–5; 0.12) | 2.5 (1–5; 0.15) |
My relative’s situation puts me under a lot of pressure | 3.0 (1–5; 0.09) | 3.1 (1–5; 0.12) | 3.1 (−15; 0.09) | 3.1 (1–5; 0.12) | 3.2 (1–5; 0.09) | 3.2 (1–5; 0.12) | 3.0 (1–5; 0.09) | 3.1 (1–5; 0.11) |
Total score for EDIZ** | 3.6 (0–9; 0.23) | 3.9 (0–9; 0.31) | 3.9 (0–9; 0.23) | 3.9 (0–9; 0.30) | 4.1 (0–9; 0.23) | 4.2 (0–9; 0.31) | 3.5 (0–9; 0.24) | 4.0 (0–9; 0.29) |