Background
Quality of life of persons with dementia
Dementia care
Regional dementia care networks
Regional dementia care networks in Germany
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Stakeholder: Dementia care networks of this type focus on providing support by identifying and linking regional care providers and actively involving stakeholders. They refer their work to the (social) environment, and the specific involvement of external care providers gives the opportunity to improve achievement of the objectives. The aim of stakeholder dementia care networks is predominantly to educate persons with dementia and their family members.
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Organisation: This type of dementia care network is characterised by a high level of internal formal governance and a defined control centre. Creating and following formal and informal structures, dementia care network stakeholders intend to achieve a high level of efficacy and effectiveness of support structures provided by the network. Through this highly defined governance structure, achievement of the objectives is independent from the individuals. The main network aims focus more on intrinsic structures rather than on external interventions.
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Hybrid: Dementia care networks of this type are characterised by the ability to quickly adapt their strategies to accommodate changing requirements regarding environmental or legal regulations. This feature allows these dementia care networks to act on a state-of-the-art level, and therefore to play an active part in the provision of healthcare services. The level of involvement of network stakeholders depends on their goals as a stakeholder.
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Mission: This type of dementia care network is characterised by user-focused, specific care-related aims that are followed through consistently. All resources and features aim to achieve care-related objectives. To realise these objectives, mission-related dementia care networks must know in detail the needs of persons with dementia as well as care providers in their region.
Methods
Sample
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utilising one of the participating dementia care networks;
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having a formal diagnosis of dementia;
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living at home;
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having a primary caregiver (e.g. relative, friend, or nurse);
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giving written informed consent (for persons with dementia with a legal representative, written informed consent was obtained from the representative).
Data collection
Quality of life – Quality of life Alzheimer’s disease
Impairment by dementia – Functional assessment staging
Challenging behaviour – Cohen−Mansfield agitation inventory
Depression – Geriatric depression scale
Activities of daily living – Instrumental activities of daily living
Caregiver burden – Berliner Inventar zur Angehörigenbelastung – Demenz
Data analysis
Results
Sample at baseline
total (n = 560) | p-value | follow-up | p-value | |||||
---|---|---|---|---|---|---|---|---|
follow-up (n = 407)* | loss to follow-up (n = 153) | T0 (n = 407)* | T1 (n = 407)* | |||||
Age in years (mean, SD) | 79.7 (8.4) | 79.1 (8.5) | 81.5 (8.1) | 0.003a | n/a | n/a | n/a | |
Sex (n, %) | ||||||||
Female | 319 (57.0) | 244 (60.1) | 81 (53.6) | 0.101b | n/a | n/a | n/a | |
Male | 232 (41.4) | 162 (39.9) | 70 (46.4) | n/a | n/a | |||
Living situation of caregiver (n, %) | ||||||||
Together |
337 (69.7)
|
252 (62.4)
|
85 (57.8)
|
0.014
c
|
247 (62.8)
|
226 (57.5)
|
< 0.001
d
| |
Nearby |
127 (22.7)
|
99 (24.5)
|
28 (19.0)
|
97 (24.7)
|
105 (26.7)
| |||
Greater distance |
87 (15.5)
|
53 (13.1)
|
34 (23.1)
|
49 (12.5)
|
62 (15.8)
| |||
Social Index (Scheuch-Winkler) (n, %) | ||||||||
Low | 248 (60.6) | 183 (60.6) | 65 (60.7) | 0.810c | n/a | n/a | ||
Middle | 121 (29.6) | 91 (30.1) | 30 (28.0) | n/a | n/a | |||
High | 40 (9.8) | 28 (9.3) | 12 (11.2) | n/a | n/a | |||
Impairment by dementia (FAST, 0–7) (n, %) | ||||||||
Up to moderate (FAST ≤5) | 42 (7.5) |
35 (8.9)
|
7 (4.8)
|
< 0.016
c
|
30 (7.8)
|
23 (6.0)
|
< 0.001
d
| |
Severe (FAST 6) | 229 (40.9) |
177 (44.9)
|
52 (35.6)
|
174 (45.4)
|
136 (35.5)
| |||
Very severe (FAST 7) | 269 (48.0) |
182 (46.2)
|
87 (59.6)
|
179 (46.7)
|
224 (58.5)
| |||
Depression (GDS, 0–15) (mean, SD) | 4.6 (3.4) | 4.6 (3.4) | 4.6 (3.4) | 0.967a |
4.4 (3.2)
|
4.6 (3.4)
|
< 0.001
e
| |
Challenging behavior (CMAI) (n; %) | ||||||||
Physically non-aggressive behavior | yes | 344 (61.4) | 152 (37.9) | 52 (35.4) | 0.330b |
152 (37.9)
|
171 (42.6)
|
< 0.001
f
|
no | 204 (36.4) | 249 (62.1) | 95 (64.6) |
249 (62.1)
|
230 (57.4)
| |||
Verbally agitated behavior | yes | 330 (58.9) | 161 (40.0) | 60 (40.3) | 0.519b |
161 (40.0)
|
155 (38.6)
|
< 0.001
f
|
no | 221 (39.5) | 241 (60.0) | 89 (59.7) |
214 (60.0)
|
247 (61.4)
| |||
Aggressive behavior | yes | 85 (15.2) | 59 (14.8) | 26 (17.6) | 0.251b |
59 (14, 8)
|
60 (15.0)
|
< 0.001
f
|
no | 462 (82.5) | 340 (85.2) | 122 (82.4) |
340 (85.2)
|
339 (85.0)
| |||
Mind. 1 challenging behavior | yes | 422 (75.4) | 307 (76.4) | 115 (78.2) | 0.369b |
307 (76.4)
|
321 (79.1)
|
< 0.001
f
|
no | 127 (22.7) | 95 (23.6) | 32 (21.8) |
95 (23.6)
|
84 (20.9)
| |||
Capacities of daily living (IADL, 0–8) (mean, SD) |
2.0 (1.9)
|
2.2 (1.9)
|
1.5 (1.6)
|
< 0.001
a
|
2.2 (1.9)
|
1.5 (1.7)
|
< 0.001
e
| |
Quality of life (QoL-AD, 13–52), (mean, SD) |
28.6 (5.5)
|
29.0 (5.4)
|
27.8 (5.7)
|
0.024
a
|
29.1 (5.4)
|
28.7 (5.4)
|
< 0.001
e
| |
Caregiver Burden (BIZAD ADL, 0–16) (mean, SD) | 6.2 (4.9) | 6.0 (5.0) | 6.7 (4.8) | 0.113a | n/a | n/a | n/a |
Stakeholder (n = 119) | Organization (n = 82) | Hybrid (n = 109) | Mission (n = 97) | p-value | ||
---|---|---|---|---|---|---|
Age in years (mean, sd) | 78.7 (8.8) | 80.6 (8.0) | 78.5 (8.3) | 79.1 (8.6) | 0.333a | |
Sex (n, %) | ||||||
female | 43 (36.1) | 31 (38.3) | 40 (36.7) | 48 (49.5) | < 0.174b | |
male | 76 (63.9) | 50 (61.7) | 69 (63.3) | 49 (50.5) | ||
Living situation of caregiver (n, %) | ||||||
Together |
78 (66.1)
|
50 (62.5)
|
60 (55.0)
|
64 (66.0)
|
0.025
b
| |
nearby |
33 (28.0)
|
22 (27.5)
|
27 (24.8)
|
17 (17.5)
| ||
Greater distance |
7 (5.9)
|
8 (10.0)
|
22 (20.2)
|
16 (16.5)
| ||
Social Index (Scheuch-Winkler) (n, %) | ||||||
low |
65 (67.0)
|
16 (36.4)
|
60 (75.9)
|
42 (51.2)
|
< 0.001
b
| |
middle |
27 (27.8)
|
25 (56.8)
|
11 (13.9)
|
28 (34.1)
| ||
high |
5 (5.2)
|
3 (6.8)
|
8 (10.1)
|
12 (14.6)
| ||
Impairment by dementia (FAST, 0–7) (n, %) | ||||||
up to moderate (FAST ≤5) | 8 (7.1) | 5 (6.3) | 8 (7.4) | 14 (14.9) | 0.082b | |
severe (FAST 6) | 59 (52.2) | 32 (40.5) | 53 (49.1) | 33 (35.1) | ||
very severe (FAST 7) | 46 (40.7) | 42 (53.2) | 47 (43.5) | 47 (50.0) | ||
Depression (GDS) | ||||||
score (0–15); mean (sd) |
5.4 (3.7)
|
5.3 (3.4)
|
4.4 (3.3)
|
3.3 (2.9)
|
< 0.001
a
| |
Challenging behavior (CMAI) (n, %) | ||||||
Physically non-aggressive behavior | yes | 152 (37.9) | 52 (35.4) | 0.330b | 249 (62.1) | < 0.101f |
no | 249 (62.1) | 95 (64.6) | 158 (38.8) | |||
Verbally agitated behavior | yes | 161 (40.0) | 60 (40.3) | 0.519b | 241 (60.0) | < 0.648f |
no | 241 (60.0) | 89 (59.7) | 166 (40.0) | |||
Aggressive behavior | yes | 59 (14.8) | 26 (17.6) | 0.251b | 59 (14,8) | < 1.000f |
no | 340 (85.2) | 122 (82.4) | 348 (85.2) | |||
At least 1 challenging behavior | yes | 307 (76.4) | 115 (78.2) | 0.369 b | 307 (76.4) | < 0.272f |
no | 95 (23.6) | 32 (21.8) | 100 (23.6) | |||
Capacities of daily living (IADL, 0–8); mean (sd) |
1.9 (2.1)
|
1.9 (1.6)
|
2.3 (1.9)
|
2.5 (2.0)
|
< 0.050
a
| |
Quality of life (QoL-AD, 13–52); mean (sd) |
27.8 (5.6)
|
28.6 (5.3)
|
29.0 (5.4)
|
29.0 (5.4)
|
0.003
a
| |
Caregiver Burden (BIZAD_ADL, 0–16) (mean, sd) |
7.1 (5.1)
|
6.3 (5.1)
|
5.4 (4.5)
|
4.9 (5.0)
|
0.008
a
|
Changes over time
Mixed-model analyses
Dependent variable | p-value model | R2 | independent (Co-) Variables | p-value | Beta | 95% CI |
---|---|---|---|---|---|---|
Proxy-rated quality of life (QoL-AD difference t1-t0) |
< 0.001
|
0.183
| ||||
Intercept
|
0.001
|
11.088
|
4.543;17.632
| |||
Sex: femalea | 0.830 | −0.123 | −1.220;0.973 | |||
Living situation of caregiverb | ||||||
nearby | 0.981 | −0.017 | −1.375;0.134 | |||
greater distance | 0.969 | 0.039 | −1.883;1.961 | |||
Social Index (Scheuch-Winkler)c | ||||||
middle | 0.648 | 0.291 | −0.885;1.467 | |||
high | 0.536 | 0.606 | −1.257;2.469 | |||
at least 1 challenging behavior (CMAI)e | 0.247 | 0.816 | −0.524;2.468 | |||
Type of DCNd | ||||||
Organization | 0.570 | 0.632 | −1.716;2.980 | |||
Hybrid | 0.746 | 0.301 | −1.667;2.269 | |||
Mission | 0.509 | 0.642 | −1.401;2.687 | |||
agef | 0.816 | −0.007 | −0,069;0.052 | |||
depression (GDS)f | 0.352 | −0.077 | −0.233;0.080 | |||
Capacities of daily living (IADL)f | 0.810 | 0.039 | −0.274;0.352 | |||
Caregiver burden (BIZAD_ADL)f | 0.118 | −0.142 | −0.315;0.030 | |||
QoL-AD at baseline
|
< 0.001
|
−0.357
|
−1.401;-0.231
|