Background
-
To describe the course of dementia in NH patients from admission until death.
-
To identify predictors of progression of dementia in NH patients, with a particular focus on predictors of the course of neuropsychiatric symptoms.
-
To investigate predictors of mortality in NH patients.
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To explore the impact of genetic polymorphism on the occurrence and course of neuropsychiatric symptoms in dementia.
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To study health resource use at admission and over the follow-up period.
Methods
Study design and setting
Participants
Data collection
Description | Base-line version 1 0212 n=153 | Base-linea version 2 0712 n=391 | Base-lineb version 3 0813 n=152 | Follow up 6 mnd version 1 0812 n=318 | Follow upb 6 mnd version 2 0813 n=191 | Follow up from 12 mnd version | |
---|---|---|---|---|---|---|---|
Physical health status | |||||||
Blood pressure and pulse | x | x | x | x | x | x | |
Body Mass Index | x | x | x | x | x | x | |
General Medical Health Rating (GMHR) [31] | Four-category scale rating medical health | x | x | x | x | x | x |
Mobilization-Observation-Behaviour-Intensity-Dementia Pain Scale (MOBID-2) (Including VAS) [32] | Assessment of pain in patients with dementia | x | x | x | x | x | x |
Unified Parkinson’s Disease Rating Scale (UPDRS), six-item version [33] | Assessment of extra-pyramidal symptoms | x | x | x | |||
Edmonton Symptom Assessment System (ESAS-r) [34] | Assessment of pain and distressing symptoms such as fatigue, drowsiness, nausea, appetite disturbances, dyspnoea, depression, anxiety, and wellbeing | x | x | ||||
Karnofsky Performance Status (KPS) [35] | Functional performance status | x | x | x | |||
Resident Assessment Instrument (RAI), subscales skin and nutrition [36] | Distressing symptoms, care and treatment provided | x | x | ||||
Charlson’s co-morbidity index [37] | Co-morbid conditions | x | x | x | x | ||
Cognitive function and severity of dementia | |||||||
Mini Mental State Examination (MMSE) [23] | Screening for cognitive impairment | x | x | x | x | x | x |
Severe Impairment Battery – 8 (SIB-8) [24] | Cognitive impairment in severe dementia | x | x | x | x | x | x |
Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE) [26] | Informant-rated scale of estimated cognitive decline | x | |||||
Clinical Dementia Rating Scale (CDR) [28] | Level of dementia (cognition and function) | x | x | x | x | x | x |
Functional Assessment Staging of Alzheimer’s Disease (FAST) [30] | Level of dementia (cognition and function) | x | x | x | x | x | |
Diagnoses | Type of dementia according to an algorithm | x | x | x | |||
Neuropsychiatric and depressive symptoms | |||||||
Neuropsychiatric Inventory Nursing Home version (NPI-NH) [38] | Neuropsychiatric symptoms | x | x | x | x | x | x |
Neuropsychiatric Inventory–Questionnaire (NPI-Q) [43] | A brief assessment of neuropsychiatric symptoms | x | x | ||||
Cornell Scale for Depression in Dementia (CSDD) [44] | Depression in persons with dementia. | x | x | x | x | x | x |
Confusion Assessment Method (CAM) [45] | Assesses the occurrence of delirium | x | x | x | |||
Functioning in daily living and physical symptoms | |||||||
Physical Self-Maintenance Scale (PSMS) [46] | Measures basal ADL | x | x | x | x | x | x |
Life-Space Assessment (LSA) [47] | Assessment of life-space mobility | x | x | x | x | x | |
Short Physical Performance Battery (SPPB) [48] | Chair stand, balance, and walking | x | x | x | x | x | |
Quality of life | |||||||
Quality of Life in Alzheimer’s Disease – patient rated (QoL-AD) [49] | Measures disease-specific QoL | x | |||||
Quality of Life in Alzheimer’s Disease – staff rated (QoL-AD) [49] | Measures disease-specific QoL | x | |||||
Quality of Life in Alzheimer’s Disease – patient or staff rated (QoL-AD) [49] | Measures disease-specific QoL | x | x | ||||
Measures QoL in severe dementia | x | x | x | x | x | x | |
EQ-5D (including VAS) [52] | Measures health-related QoL | x | x | x | x | x | x |
Medication regular prescription | Drug type and daily dose | x | x | x | x | x | x |
Cost of care | |||||||
Resource Utilization in Dementia (RUD) [54] | Formal and informal care | x | x | x | |||
Resource Utilization in Dementia – Formal Care (RUD-FOCA) [55] | Measures direct care time required in nursing | x | x | x | |||
Caregiver burden | |||||||
Relative Stress Scale (RSS) [56] | Assessment of caregiver burden | x |
Measures
Cognitive function and severity of dementia
Physical health status
Neuropsychiatric and depressive symptoms
Functioning in daily living and physical symptoms
Quality of life
Medication
Cost of care
Caregiver burden
Linkage to registry and databases
Ethical and legal considerations
Results
All patients | Patients with dementia | Patients without dementia |
p-value*
| |
---|---|---|---|---|
n= 696 |
n= 583 |
n= 113 | ||
Age mean (SD) | 84.5 (7.5) | 84.1 (7.5) | 86.5 (7.0) | 0.002a)
|
Female gender | 445 (63.9) | 375 (64.3) | 70 (61.9) | 0.630b)
|
Unmarried/divorced/widowed vs. married/partner n/N | 478/687 (69.6) | 390/576 (67.6) | 88/111 (79.3) | 0.015b)
|
n=516 |
n=428 |
n=88 | ||
Education in years – mean (SD) | 8.34 (2.8) | 8.30 (2.9) | 8.50 (2.4) | 0.549a)
|
Residence before admission |
n=520 |
n=428 |
n=92 | |
Private home | 230 (44.2) | 194 (45.3) | 36 (39.1) | 0.278b)
|
Sheltered flat | 71 (13.7) | 59 (13.8) | 12 (13.0) | 0.851b)
|
Care Home (CH) | 5 (1.0) | 5 (1.2) | - | 0.592c)
|
CH with Nursing | 134 (25.8) | 110 (25.7) | 24 (26.1) | 0.939b)
|
Hospital | 78 (15.0) | 58 (13.6) | 20 (21.7) | 0.046b)
|
Other | 2 (0.4) | 2 (0.5) | - | 1.000c)
|
Type of unit |
n= 696 |
n= 583 |
n= 113 | |
Regular unit (RU) | 385 (55.3) | 303 (52.0) | 82 (72.6) | <0.001b)
|
Respite and rehabilitation unit (RRU) | 85 (12.2) | 64 (11.0) | 21 (18.6) | 0.024b)
|
Special care unit (SCU) | 226 (32.5) | 216 (37.0) | 10 (8.8) | <0.001b)
|
GMHR |
n=666 |
n=557 |
n=109 | |
GMHR dichotomized; poor/fair | 349 (52.4) | 280 (50.3) | 69 (63.3) | 0.013b)
|
MOBID-2 | ||||
Total score |
n=667 |
n=557 |
n=110 | |
mean (SD) | 2.1 (2.2) | 1.96 (2.1) | 2.84 (2.4) | <0.001a)
|
Overall pain at a 10-point scale |
n=597 |
n=490 |
n=107 | |
mean (SD) | 2.4 (2.5) | 2.17 (2.4) | 3.42 (2.8) | <0.001a)
|
UPDRS-6 |
n=528 |
n= 446 |
n=82 | |
mean (SD) | 3.6 (3.7) | 3.6 (3.7) | 3.6 (3.4) | 0.870a)
|
Vision |
n=681 |
n=569 |
n=112 | |
Normal | 161 (23.6) | 138 (24.3) | 23 (20.5) | 0.036b)
|
Mildly impaired | 431 (63.3) | 365 (64.1) | 66 (58.9) | |
Very impaired | 89 (13.1) | 66 (11.6) | 23 (20.5) | |
Hearing |
n=682 |
n=571 |
n=111 | |
Normal | 299 (43.8) | 259 (45.4) | 40 (36.0) | 0.193b)
|
Mildly impaired | 290 (42.5) | 236 (41.3) | 54 (48.6) | |
Very impaired | 93 (13.6) | 76 (13.3) | 17 (15.3) | |
Use of psychotropic medication** |
n= 696 |
n= 583 |
n= 113 | |
Antipsychotics | 84 (12.1) | 72 (12.4) | 12 (10.6) | 0.605b)
|
Antidepressants | 199 (28.6) | 167 (28.6) | 32 (28.3) | 0.944b)
|
Anxiolytics | 108 (15.5) | 89 (15.3) | 19 (16.8) | 0.677b)
|
Sedatives | 167 (23.9) | 128 (21.9) | 39 (34.5) | 0.004b)
|
Anti-dementia drugs | 169 (24.3) | 163 (28.0) | 6 (5.3) | <0.001b)
|
CSDD |
n=657 |
n=548 |
n=109 | |
mean (SD) | 6.4 (5.2) | 6.6 (5.3) | 5.7 (4.7) | 0.094a)
|
PSMS |
n=694 |
n=582 |
n=112 | |
mean (SD) | 15.3 (4.5) | 15.3 (4.5) | 15.4 (4.7) | 0.797a)
|
QoL-AD*** | ||||
Patient rated |
n=276 |
n=227 |
n=49 | |
mean (SD) | 33.1 (5.5) | 32.7 (5.4) | 34.7 (5.6) | 0.025a)
|
Staff rated | n=346 | n=300 | n=46 | |
mean (SD) | 31.8 (5.8) | 31.7 (5.7) | 32.6 (6.8) | 0.327a)
|
QUALID |
n=691 |
n=579 |
n=112 | |
mean (SD) | 20.0 (7.2) | 20.0 (7.2) | 19.4 (7.1) | 0.402a)
|
EQ-5D | ||||
Patient rated |
n=219 |
n=172 |
n=47 | |
mean (SD) | 3.3 (2.2) | 2.9 (2.1) | 4.7 (2.3) | <0.001a)
|
Staff rated |
n=455 |
n=392 |
n=63 | |
mean (SD) | 5.3 (1.7) | 5.3 (1.7) | 5.5 (1.9) | 0.393a)
|
Overall QoL VAS-scale | n=520 | n=421 | n=99 | |
mean (SD) | 60.4 (23.5) | 62.1 (23.1) | 53.1 (23.7) | 0.001a)
|
Patient rated |
n=197 |
n=153 |
n=44 | |
mean (SD) | 61.6 (23.5) | 63.7 (23.2) | 54.2 (23.4) | 0.018a)
|
Staff rated |
n=314 |
n=260 |
n=54 | |
mean (SD) | 59.2 (23.2) | 60.6 (22.9) | 52.7 (24.0) | 0.023a)
|
Baseline | 6.month | 12.month | 18.month | |
---|---|---|---|---|
Number included | 696 | 543 | 446 | 372 |
Number assessed | 696 | 508 | 427 | 349 |
Number that left the study | 153 | 250 | 324 | |
- Due to death | 115 | 191 | 261 | |
- Due to other reasons | 38 | 59 | 63 | |
- NH withdrawn | 2 | 2 | 3 | |
- Patient withdrawn | 4 | 8 | 9 | |
- Moved to another unit or NH | 15 | 21 | 23 | |
- Moved home | 17 | 28 | 28 |
Still participating after 18-months | Lost to follow-up before 18-months | ||||
---|---|---|---|---|---|
Due to death |
p-value* | Due to other reasons |
p-value** | ||
Age n - year (SD) | 372 - 83.7 (7.9) | 261 - 86.2 (6.4) | <0.001a)
| 63 - 82.2 (8.0) | 0.173a)
|
Women n/N - % | 252/372 - 67.7% | 151/261 - 57.9% | 0.011b)
| 43/63 - 68.3% | 0.936b)
|
CDR-SOB n - mean score (SD) | 369 - 10.2 (4.1) | 257 - 10.7 (4.6) | 0.108a)
| 61 - 8.9 (4.0) | 0.026a)
|
GMHR n/N - % dichotomized; poor/fair | 154/357 - 43.1% | 160/250 - 64.0% | <0.001b)
| 35/59 - 59.3% | 0.021b)
|
All patients n=696 | Patients with dementia n=583 | Patients without dementia n=113 |
p-value* | ||
---|---|---|---|---|---|
Prevalence of Dementia1
| No dementia | 17 (2.4) | |||
Mild Cognitive Impairment | 96 (13.8) | ||||
Dementia | 583 (83.8) | ||||
Dementia sub-types1
| Alzheimer disease (AD) | 414 (71.0) | |||
Vascular Dementia (VaD) | 46 (7.9) | ||||
Mixed AD/VaD | 11 (1.9) | ||||
Frontotemporal Dementia | 47 (8.1) | ||||
Lewy Body Dementia | 22 (3.7) | ||||
Other | 43 (7.4) | ||||
Dementia diagnosis according to NH-records | 326 (55.9) | 8 (7.1) | <0.001b)
| ||
Cognition | MMSE sum (n) mean (SD) | (611) 16.0 (6.3) | (511) 14.7 (5.5) | (100) 22.6 (5.6) | <0.001a)
|
CDR-SOB (n) mean (SD) | (687) 10.3 (4.3) | (576) 11.2 (3.6) | (111) 5.3 (4.2) | <0.001a)
| |
SIB-8 sum (n) mean (SD) | (601) 12.2 (3.7) | (502) 11.8 (3.8) | (99) 14.6 (2.7) | <0.001a)
| |
IQCODE score > 3.44 | 121 (17.4) | 115 (95) | 6 (5) | <0.001b)
| |
FAST value ≥ 4 n/N | 472/540 (87.4) | 449/434 (96.7) | 91/38 (41.8) | <0.001b)
|
Prevalence of CS-NPS | All patients Total N=696 | Patients with dementia Total N=583 | Patients without dementia Total N=113 |
p-value
|
---|---|---|---|---|
n/N | n/N | n/N | ||
Delusions | 97/686 (14.1) | 90/575 (15.7) | 7/111 (6.3) | 0.010a)
|
Hallucinations | 34/688 (4.9) | 33/576 (5.7) | 1/112 (0.9) | 0.031a)
|
Agitation | 99/689 (14.4) | 93/577 (16.1) | 6/112 (5.4) | 0.003a)
|
Depression | 148/688 (21.5) | 125/576 (21.7) | 23/112 (20.5) | 0.784a)
|
Anxiety | 141/690 (20.4) | 126/578 (21.8) | 15/112 (13.4) | 0.043a)
|
Euphoria | 23/687 (3.3) | 21/567 (3.6) | 2/111 (1.8) | 0.562b)
|
Apathy | 109/687 (15.9) | 95/575 (16.5) | 14/112 (12.5) | 0.287a)
|
Disinhibition | 101/687 (14.7) | 92/575 (16.0) | 9/112 (8.0) | 0.029a)
|
Irritability | 122/684 (17.8) | 110/572 (19.2) | 12/112 (10.7) | 0.031a)
|
Aberrant Motor Behaviour | 73/687 (10.6) | 69/575 (12.0) | 4/112 (3.6) | 0.008a)
|
Night-time Behaviour | 112/689 (16.3) | 98/577 (17.0) | 14/112 (12.5) | 0.239a)
|
Eating Change | 71/688 (10.3) | 58/576 (10.1) | 13/112 (11.6) | 0.625a)
|
Any symptom | 413/682 (60.6) | 359/571 (62.9) | 54/111 (48.6) | 0.005a)
|
NPI 12 sum median (range) |
n=693 8.0 (0 - 123) |
n=581 10.0 (0 - 123) |
n=112 4.0 (0 - 66) | <0.001c)
|
NPI-AGITATION median (range) |
n=678 1.0 (0 - 36) |
n=566 1.0 (0 - 36) |
n=112 0.0 (0 - 36) | <0.001c)
|
NPI-PSYCHOSIS median (range) |
n=683 0.0 (0 - 24) |
n=572 0.0 (0 - 24) |
n=111 0.0 (0 - 12) | <0.001c)
|
NPI-AFFECTIVE median (range) |
n=687 1.0 (0 - 24) |
n=575 1.0 (0 - 24) |
n=112 0.5 (0 - 24) | 0. 125c)
|
All patients | Patients with dementia | Patients without dementia |
p-value
| |
---|---|---|---|---|
Coronary disease | 167/664 (25.2) | 130/559 (23.3) | 37/105 (35.2) | 0.009a)
|
Acute myocardial infarction | 97/664 (14.6) | 77/558 (13.8) | 20/106 (18.9) | 0.176a)
|
Congestive heart failure | 137/654 (20.9) | 105/549 (19.1) | 32/105 (30.5) | 0.009a)
|
Peripheral vascular disease | 91/656 (13.9) | 75/551 (13.6) | 16/105 (15.2) | 0.659a)
|
Cerebrovascular disease | 161/664 (24.2) | 135/556 (24.3) | 26/108 (24.1) | 0.963a)
|
Dementia | 467/659 (70.9) | 445/552 (80.6) | 22/107 (20.6) | <0.001a)
|
Pulmonary disease | 82/666 (12.3) | 61/556 (11.0) | 21/110 (19.1) | 0.018a)
|
Connective tissue disease | 58/664 (8.7) | 42/557 (7.5) | 16/107 (15.0) | 0.013a)
|
Peptic ulcer disease | 58/667 (8.7) | 44/558 (7.9) | 14/109 (12.8) | 0.093a)
|
Liver disease | 3/673 (0.4) | 3/564 (0.5) | 0 | 1.000b)
|
Diabetes | 101/676 (14.9) | 79/566 (14.0) | 22/110 (20.0) | 0.104a)
|
Diabetes with complications | 25/676 (3.7) | 14/564 (2.5) | 11/110 (10.0) | 0.001b)
|
Hemiplegia or paraplegia | 21/664 (3.2) | 12/555 (2.2) | 9/109 (8.3) | 0.003b)
|
Renal disease | 86/670 (12.8) | 62/560 (11.1) | 24/110 (21.8) | 0.002a)
|
Cancer | 98/671 (14.6) | 77/563 (13.7) | 21/108 (19.4) | 0.120a)
|
Metastatic cancer | 17/667 (2.5) | 12/559 (2.1) | 5/108 (4.6) | 0.172b)
|
Severe liver disease | 3/674 (0.4) | 3/565 (0.5) | 0 | 1.000b)
|
HIV disease | 1/668 (0.1) | 1/558 (0.2) | 0 | 1.000b)
|