Background
Methods
Study selection
Data extraction
Quality assessment
Scoring items
Statistical analysis
Results
Selected articles
Description of included studies
First author | Country, setting | Dementia | Population: selection on pain, NPS or function? | Quality of study** |
---|---|---|---|---|
USA, nh | Moderate dementia, mean MDS cognitive performance scale 3.17 (SD 1.52) | Age ≥ 65 years, excluded when comatose | 10 | |
USA, ltc | Dementia, AD or signs of chronic stable cognitive impairment (in chart or MDS) | At risk for (or having) pressure ulcers | 4 | |
USA, nh | Advanced dementia, SIRS mean 10.3 (SD 6.7), AD 58% | Palliative care (life expectancy ≤6 months) | 6.5 | |
USA, nh | Moderate to severe dementia, MMSE mean 16.8 (SD 5.6) for 92 subjects | Age ≥ 55 years, had to have pain assessment, able to self-report on their level of pain | 7 | |
USA, ltc | Moderate dementia, mean NCSE 0.10 (SD 0.91) | Referral to clinical psychologist due to change in cognitive functioning, emotional distress, or behavioural dysfunction associated with dementia | 7.5 | |
USA, ltc | Dementia, mild 40%, moderate 41% and severe 19%, according to FAST (Reisberg) NCSE | Referral to clinical psychologist due to change in cognitive functioning, emotional distress, or behavioural dysfunction associated with dementia | 7.5 | |
Canada, ltc | In 4% no dementia with MMSE>25, mild dementia 27%, moderate 44%, severe 25% | Admission in ltc at least 6 months to allow for patient charts to be completed | 7 | |
USA, nh and residential care/assisted living | Dementia, mild 14%, moderate 26% and severe 61%, according to MMSE or MDS-COGS. | Random sample aged ≥ 65 years (complete response 60%) | 8.5 | |
USA, va outpatients | Dementia, mild 46%, moderate 39%, severe 11%, according to DRS. | Veteran outpatients, not in LTC-facilities, with available caregiver | 8.5 | |
USA, nh | Dementia according to CPS-MDS dataset | At least one comprehensive MDS assessment, age ≥ 60 years | 9 | |
Singapore, nh | Dementia with 33% mild (MIC) and 41% severe (SIC) cognitive impairment, according to AMT | No recent change in cognitive status, age ≥ 65 years. Here report of communicative subgroup with dementia (thus excluding 53 and including 125 of 358). | 8.5 | |
Taiwan, nh | Dementia, 39% profound or end-stage dementia, according to CDR-C. | Admission at least 1 month | 12 | |
USA, Veterans Administration Medical Centre, longitudinal study | Dementia, DemRS2 mean 4.12 (SD 2.79) | > 60 years, no aggressive behaviour in past year, no residence in nh and caregiver > 8 hrs a week, no onset of aggression before first follow-up (at 5 mo) | 9.5 | |
USA, nh | Dementia, MMSE mean 6.4 (SD 6.7) | Verbal disruption (BEHAVE-AD >= 1.5), age ≥ 55 years, passed audiological assessment, and life expectancy >6 mo | 9 | |
USA, outpatient geriatrics clinic | Dementia, MMSE mean 16.6 (SD 7.2) | Patient-caregiver dyad with pain-report on same day (77% of original sample) | 9.5 | |
Canada, community dwelling | Cognitive impairment, 3 MS, mild to moderate dementia 18.5% | Community dwelling people aged ≥ 65 years, within one inclusion wave a pain self-assessment was incorporated | 9 | |
Norway, nh | No (13%), mild (46%) or moderate (41%) cognitive impairment, according to MMSE. | MMSE > 11, aged ≥ 65 years (inclusion and response 35% of total sample). Communicative patients | 6.5 | |
EU and Israel, nh | Cognitive impairment, mild-moderate 55% and severe 45%, according to CPS | Several countries | 11.5 | |
Netherlands, nh/residential home | Dementia, according to MDS-CPS | Dependent in decision making, aged ≥ 65 years | 11 | |
Netherlands, nh, longitudinal study | Dementia, according to MDS | Availability of 4 quarterly MDS assessments within period of 15 months, aged ≥ 65 years | 12 | |
USA, nh and residential care/assisted living | Dementia, with 29% MMSE>10 and MDS-COGS >2-4 | Available pain data, aged ≥ 65 years | 10 | |
Zieber 2005 [38] | Canada, ltc | Moderate to severe cognitive impairment, according to FAST (Reisberg) score 6-7 | Residents with continuous nursing care because of significant physical and/or cognitive impairments (‘nh-level’) | 8 |
Overview of measurement instruments
Measurement of pain | Measurement of neuropsychiatric symptoms | Measurement of function | ||||
---|---|---|---|---|---|---|
First author | Rating scale | Method of detection | Rating scale | Method of detection | Rating scale | Method of detection |
MDS pain severity scale, combining pain frequency and pain intensity | Self-report, if not possible staff report based on proxy reports | MDS subscales; wandering-item, aggression behaviour scale (ABS), challenging behaviour profile (CBP) agitation subscale | Patient self-report, proxy and professional | MDS-ADL long form (7 items) | Staff observation | |
No use of rating scale | Data collection instrument (3-month period), raters unknown | MDS for depression | Medical records | MDS (number of ADLs) | Medical records | |
GMPI pain and suffering subscale | Part of neuropsychological evaluation by a licensed clinical geropsychologist | -GDS-15 “-26 dysfunctional behaviours with scores “1-7” | Part of neuropsychological evaluation by a licensed clinical geropsychologist | PRADLI | Part of neuropsychological evaluation by a licensed clinical geropsychologist | |
GMPI | Part of neuropsychological evaluation by a licensed clinical geropsychologist and each instrument was administered after interviewing the resident, nursing staff and family members | GLDS, 19 categories with scores 1-7 | Part of neuropsychological evaluation by a licensed clinical geropsychologist and each instrument was administered after interviewing the resident, nursing staff and family members Medical records, preceding 6 to max 26 Months | GLDS | Part of neuropsychological evaluation by a licensed clinical geropsychologist and each instrument was administered after interviewing the resident, nursing staff and family members | |
No use of rating scale | Medical records, preceding 6 to max 26 months | No use of rating scales | No use of rating scale | Medical records Ambulatory status: independent, requires assistance, wheel chair (or bedridden n=1) | ||
PGC-PIS, score ≥ 2 | Rating by supervisory staff member | CSDD CMAI | Rating by supervisory staff member | MDS; activities of daily living scale, SMOI | Rating/observation by supervisory staff member | |
PGC-PIS, item on level of pain in previous week, scores 1-6 | Interview with patient and proxy by trained interviewer/research assistant | CMAI HAM-D NPI (subdomains delusion/hallucinations) | Interview with patient and proxy by trained interviewer/research assistant | - | - | |
Leonard 2006 [50] | MDS pain burden using a 4-level composite score based on pain frequency and intensity | - | MDS (Physical aggression: MDS item ‘others were hit, shoved, scratched, sexually abused’; Depression: MDS score≥3 on sum of 9 items, e.g. ‘being sad’, ‘making negative statements’, ‘persistent anger with self or others’, ‘pained facial expressions’. (At least once in week before)) | - | - | - |
PAINAD for non-communicative patients | Interviews with patient and staff member by professionals for communicative patients | Depression with GDS-15 or STAI Anxiety with Cornell | Self-report or staff report | AAS | Not reported | |
PAINAD-Chinese version | Observation immediately following instances of routine care by principal investigator and research assistant | No use of rating scales | Medical records and observations by professional | No use of rating scale | Medical records and observation by professional | |
PGC-PIS worst pain item | Not reported | CMAI aggression subscale CMAI non-aggressive physical agitation subscale HAM-D depression | Not reported | - | - | |
PPQ, intensity item, 10–14 day baseline | Primary CNA and data used from medical records | RMBPC-NH, selection of 3 need driven behaviours, BEHAVE-AD | Primary CNA and unit staff | PSMS | Nurses and trained research assistants | |
VDS, 1 item on presence and severity of pain ‘right now’ | Interviews with patients and caregivers by trained research assistant | GDS-15 CMAI | Interview patient and proxy | KATZ IADL | Interview patient and proxy | |
VDS, 5 point, ‘pain past 4 weeks’ | Interviews with patient by trained research assistant | Mental Health screening questionnaire; 5-item and 6 point scale | Interview with patient by trained research assistant | OARS/IADL; 3 point scale | Interview patient by trained research assistant | |
VRS, 4 point, ‘pain right now’ | Patient self-report | DQoL, 29-items on 5 domains: self-esteem, aesthetics, positive affect, negative affect, belonging | Not reported | Barthel | Self-report and medical records | |
InterRAI LTCF | InterRAI LTCF questions and observation of behaviour, any type of pain or discomfort of the body in previous 3 days by trained (research) staff | InterRAI LTCF 5 behavioural symptoms, previous 3 days | Not reported | MDS ADL Hierarchy Scale | Data recorded by study physicians | |
MDS-RAI pain frequency (item J2a) | Combination of physical examination, patient history, observation, consultation caregiver and medical records by staff | MDS Depression Rating Scale MDS item J1e for delusions MDS item J1i for hallucinations | Combination of physical examination, patient history, observation, consultation caregiver and medical records by staff | - | - | |
MDS | Combination of physical examination, patient history, observation, consultation caregiver and medical records by staff | MDS items I1ee, E1a, E1d, E1f, E1b, E1i, E1l, E1m for depression MDS for delusions and hallucinations MDS items B5b, E1b, E4aa, E4da for agitation | Combination of physical examination, patient history, observation, consultation caregiver and medical records by staff | - | - | |
PGC-PIS, score ≥2, and 0–10 pain numeric rating scale | Registered nurses or licensed practical nurses and interview with overseeing supervisor | CSDD, score ≥7 CMAI, any behaviour at least weekly | Rating by care supervisors, registered nurses and licensed practical nurses | MDS-ADL, APAS SMOI | Rating by care supervisors, registered nurses and licensed practical nurses | |
DS-DAT, and a 7-point pain rating scale | Trained facility nurses, palliative care nurse consultants | PAS | Trained facility nurses | - | - |
Measurement of pain
Measurement of NPS
Measurement of Physical Function
Associations between pain, NPS and physical function
First author | N | Pain: prevalence | Depression: prevalence | Correlates of pain with depression | Quality of study |
---|---|---|---|---|---|
1836 | Pain 27% | Depression 32% |
SOR 1.6 (95% CI:
1.3-2.0)
| 4 | |
234 | Persistent pain 72% | Depression (GDS-15) mean 7.8 (SD 3.12) | Correlations with GMPI ‘pain and suffering’ r=0.13 (p<0.05) with GDS-15 depression | 7.5 | |
140 | Pain 64% (musculoskeletal pain 40%) | Depression 16% | SOR 1.3 (95% CI: 0.5-3.5) (analyses in sample of no dementia-severe dementia) | 7 | |
328 | High pain 21% | Depression 23% | SOR 3.1 (95% CI: 1.7-5.5) (in n=328) | 8.5 | |
99 | Pain mean (PGC-PIS) 2.4 (SD 1.2) | Depression (HAM-D) mean 7.7 (SD 6.1) |
r=0.49 (p ≤0.01)
| 8.5 | |
225 | Pain 44%; chronic pain 34% | Depression 61% |
SOR 3.2 (95% CI: 1.8-5.9)
| 8.5 | |
112 | Observed pain 37% (PAINAD >= 2) | Depression 5% | OR=1.2 (95% CI: 0.19-7.26) | 12 | |
171 | Worst pain mean 1.91 (SD 1.53) | Depression (HAM-D) mean 6.16 (SD 5.28) | Baseline: r = 0.30 (n.s.) | 9.5 | |
115 | Any current pain self-report 32%, caregiver report 53% | Depression (GDS-15) mean 3.1 (SD 2.7) | For self-report pain SOR 1.5 (95% CI: 0.6-3.7) For caregiver pain report: SOR 0.5 (95% CI: 0.2-1.1) with patient depression | 9.5 | |
5549 | Moderate or greater pain: 35.8% | Depressed mood 37.3% | OR=1.69 (95% CI: 1.18-2.44) with depressed mood (Adjusted for demographics) | 9 | |
331 | Pain 21%, in nh 23%, in rc/al 20% (self-report for subgroup mmse>10 was: 39% and 25%) | Depressed 23% | OR=2.3 (1.1-4.8) and AOR=2.9 (1.2-7.2) (Adjusted for: sex, race, age, cognitive status, number of 10 comorbidities, impairments of 7 activities of daily living) | 10 |
First author | N | Pain: prevalence | Agitation/aggression: prevalence | Correlates of pain with agitation/aggression | Quality of study |
---|---|---|---|---|---|
56577 | Not reported | Aggression 24% Agitation 24% | AOR 1.04 (95% CI: 1.01-1.08) with aggression AOR 1.17 (95% CI: 1.13-1.20) with agitation Subsample without use of psychotropic medication AOR 1.07 (95% CI: 1.01-1.15) with aggression AOR 1.16 (95% CI: 1.08-1.25) with agitation (Adjusted for cognition, ADL, sociodemographics) | 10 | |
1836 | Pain 27% | Agitation 44%, | SOR 1.1 (95% CI: 0.9-1.4) with agitation | 4 | |
99 | Pain mean 2.4 (SD 1.2) | Agitation (CMAI) mean 14.3 (SD 4.1) | r=0.20 (p≤0.05) with aggression | 8.5 | |
103344 | Pain 24%; mild pain 15%, moderate to severe pain 9% | Physical aggression 7% | SOR 0.8 (95% CI: 0.8-0.9) for pain burden and physical aggression | 9 | |
171 | Worst pain mean 1.91 (SD 1.53) | Non aggressive physical agitation (CMAI) mean 12.14 (SD 4.50) | Baseline: r = 0.06 (n.s.) with aggression Follow-up: depression indirectly predicted onset of aggression, through pain | 9.5 | |
115 | Any current pain self-report 32%, caregiver report 53% | Agitation (CMAI) mean 46.9 (SD 18.9), | For self-report pain no association with agitation (p>0.05) For caregiver pain report p=0.04 with agitation | 9.5 | |
1101 | Any pain 49% | Agitation (score>0, range 0–5) 76% | r=0.22 to 0.26 (p<0.001) with agitation (Range of correlations scores over 4 periods.) Follow-up: Longitudinal changes in agitation scores are related to changes in depression score but not to pain. | 12 | |
58 | Not reported | Not reported | r=0.51 (p<0.01) for DS-DAT scores and agitation (PAS-total) Pain rating by palliative care nurse consultants: r=0.49 (p<0.01) with agitation (PAS-total) Pain rating by facility nurse: r=0.28 (p<0.05) with agitation (PAS-total) | 8 |
Correlates of pain and Specified NPS | |||||
---|---|---|---|---|---|
First author
|
N
|
Pain: prevalence
|
Neuropsychiatric symptoms: prevalence
|
Correlates of pain with NPS
|
Quality of study
|
56577 | Not reported | Wandering 9% | AOR 0.77 (95% CI: 0.73-0.81) with wandering Subsample without psychotropic medication AOR 0.72 (95% CI: 0.63-0.83) with wandering (Adjusted for cognition, ADL, sociodemographics) | 10 | |
99 | Pain mean 2.4 (SD 1.2) | Delusions/hallucinations mean 0.35 (SD 0.48) | r=0.15 (p>0.05) with psychosis | 8.5 | |
225 | Pain 44%, chronic pain 34% | Anxiety 48% | SOR 1.8 (95% CI: 1.0-3.0) with anxiety | 8.5 | |
161 | Not reported | BEHAVE-AD mean 6..4 (SD 29.2) RMBPC-NH mean 1.45 (SD 0.64) | r=0.15 (p=0.08) for pain intensity and emotional behaviour problems r=0.05 (p=0.58) for pain intensity and resistiveness to care | 9 | |
106 | Current pain in total group 55%, in cognitive impaired group 52% | Negative affect index (DQoL) mean 2.0 (SD 0.75), positive affect/humour index (DQoL) mean 3.4 (SD 0.9) | p<0.01 for current pain and negative affect p=0.11 for current pain and with positive affect/humour | 6.5 | |
2822 | Any pain 19% (moderate/severe/excruciating pain 13%) | Behavioural symptoms 37% Psychiatric symptoms 21% | AOR=0.74 (95% CI: 0.55-1.0) with wandering AOR=1.4 (95% CI: 1.08-1.8) with resistance to care AOR 1.5 (95% CI: 1.07-2.03) with delusions AOR 1.06 (95% CI: 0.80-1.41) with verbal abuse AOR 1.08 (95% CI: 0.75-1.55) with physical abuse (Adjusted for age, gender, country, cognitive impairment, number of diseases, ischemic heart disease, stroke, falls, communication problems, and a flare-up of a chronic or recurrent condition) | 11.5 | |
929 | Daily pain 29%, less than daily pain 19% | Verbally abusive not easily altered 2%, physically abusive not easily altered 12%, Delusions 8%, Hallucinations 9% | r=0.07 (p=0.03) for pain frequency and verbal abuse AOR=0.9(p=0.53) with resisting care AOR=0.7 (p=1.2) with verbal abuse AOR=0.7 (p=0.16) with physical abuse (Both multivariate models among others controlled for resisting care.) | 11 | |
58 | Not reported | Not reported | r=0.46 (p<0.01) for DS-DAT scores and resisting care r=0.42 (p<0.01) for DS-DAT scores and aberrant vocalization Pain rating by palliative care nurse consultants: r=0.51 (p<0.01) with resisting care r=0.40 (p<0.01) with aberrant vocalizations Pain rating by facility nurse: r=0.48 (p<0.01) with resisting care r=0.065 (p<0.63) with aberrant vocalizations | 8 | |
Correlates of pain and Unspecified NPS
| |||||
123 | Pain 63% | Psychiatric disorders or behaviour problems 85%, behaviour problems 67% | SOR 1.9 (95% CI: 0.7-5.3) with psychiatric/ behaviour problems SOR 1.2 (95% CI: 0.5-2.5) with behaviour problems | 6.5 | |
104 (excluding those unable to self-report pain) | Moderate-severe pain 60% No-mild pain 40% 50 subject unable to answer | ≥1 disruptive behaviours (wandering, verbal disruption, physical aggression, regressive behaviour, hallucinations) 70% in dementia sample n=154 | SOR 1.8 (95% CI: 0.8-4.0) with ≥1 disruptive behaviour | 7 | |
234 | Persistent pain 72% | Dysfunctional behaviours mean 4.4 (SD 0.76) | r=0.22 (p<0.05) with dysfunctional behaviours | 7.5 | |
277 | Acute pain 29% Chronic pain 59% | - | r=0.18 (p<0.05) with GLDS mean behavioural intensity | 7.5 | |
161 | Not reported | BEHAVE-AD mean 61.4 (SD 29.2) RMBPC-NH mean 1.45 (SD 0.64) | r=0.18 (p=0.03) for pain intensity and disruptive behaviour problems | 9 | |
r=0.05 (p=0.53) for pain intensity and global need driven behaviours | |||||
2822 | Any pain 19% (moderate/severe/excruciating pain 13%) | Behavioural symptoms 37% Psychiatric symptoms 21% | AOR=1.4 (95% CI: 1.04-1.8) with socially inappropriate behaviour (Adjusted for age, gender, country, cognitive impairment, number of diseases, ischemic heart disease, stroke, falls, communication problems, and a flare-up of a chronic or recurrent condition) | 11.5 | |
331 | Pain 21%, in nh 23%, in rc/al 20% (self-report for subgroup mmse>10 was higher: 39% and 25%) | Behavioural symptoms 58% | OR=1.1 (95% CI: 0.49-2.29) and AOR=1.2 (95% CI: 0.57-2.36) with behavioural symptoms | 10 | |
(Adjusted for: sex, race, age, cognitive status, number of 10 comorbidities, impairments of 7 activities of daily living) |
Correlates of pain and ADL or IADL | |||||
---|---|---|---|---|---|
First author
|
N
|
Pain: prevalence
|
Physical function: prevalence
|
Correlates of pain with ADL or IADL
|
Quality of study
|
104 (excluding those unable to self-report pain) | Moderate-severe pain 60%, no-mild pain 40% (50 subject unable to answer) | ≥1 ADL limitations 92% in dementia sample (n=154) | SOR 1.9 (95% CI: 0.0) with ≥ 1 ADL limitation | 7 | |
234 | Persistent pain 72% | ADL independency mean 0.09 (SD 0.99) | Correlations with GMPI ‘pain and suffering’ r=−0.04 (α>0.05) with ADL independency | 7.5 | |
115 | Any current pain self-report 32%, caregiver report 53% | KATZ mean 8.5 (SD 2.7), IADL mean 15.3 (SD 3.9) | For self-report pain No association ADL and IADL (p> 0.05) For caregiver pain report No association with ADL or IADL (p> 0.05) | 9.5 | |
5549 | Moderate or greater pain: 35.8% | Any IADL impairment: 665% | OR=1.74 (95% CI: 1.15-2.62) with any iADL impairment (Adjusted for demographics) | 9 | |
106 | Current pain in total group 55%, in cognitive impaired group 52% | Highly or moderate ADL dependent 36% | p=0.20 for current pain and ADL SOR=0.5 (95% CI: 0.2-1.2) for current pain and ADL high/medium v.s. low | 6.5 | |
2822 | Any pain 19% (moderate/severe/excruciating pain 13%) | No disability 8%, assistance required 43%, dependent 49% | SOR 1.0 (95% CI: 0.9-1.2) with ADL-dependent SOR 0.9 (95% CI: 0.75-1.09) with ADL assistance required (Adjusted for age, gender, country, cognitive impairment, number of diseases, ischemic heart disease, stroke, falls, communication problems, and a flare-up of a chronic or recurrent condition) | 11.5 | |
Correlates of pain and other functional impairments
| |||||
123 | Pain 63% | Nutrition/hydration problems total sample 85% | SOR 1.9 (95% CI: 0.7-5.3) with nutrition/hydration problems | 6.5 | |
104 (excluding those unable to self-report pain) | Moderate-severe pain 60%, no-mild pain 40% (50 subject unable to answer) | ≥ 1 ADL limitations 92% in dementia sample (n=154) | SOR 1.6 (95% CI: 0.2) with bladder incontinence | 7 | |
140 | Pain 64% (musculoskeletal pain 40%) | Use of wheel chair 60% Requires assistance 34% | SOR 1.5 (95% CI: 0.7-3.0) with use of wheel chair or bedridden SOR 1.0 (95% CI: 0.5-2.0) with requires assistance (Analyses in sample of no dementia-severe dementia) | 7 | |
112 | Observed pain 37% (PAINAD >=2) | Being restrained 46%; observed care activities: bathing 43%, assisted transfer 31%, self-transfer 26% | OR=5.4 (95% CI: 2.3-12.5) and AOR=3.0 (95% CI: 1.0-8.7) with being restrained OR=23.4 (95% CI: 3.0-188) and AOR=19.2 (95% CI: 2.3-162) with bathing OR=29.7 (95% CI: 3.6-242) and AOR=11.3 (95% CI: 1.2-102) with assisted transfer, both compared to self-transfer (Adjusted for gender, age, wound, restraint, tube present in body, recent fall, severity of dementia and type of activity) | 12 | |
331 | Pain 21%, in nh 23%, in rc/al 20% (self-report for subgroup MMSE>10 was higher: 39% and 25%) | Low activity 47%, immobile 12% Low food intake 53% Low fluid intake 51% | OR=0.65 (95% CI: 0.38-1.11) and AOR=0.64 (95% CI: 0.37-1.10) with low activity OR=1.1 (95% CI: 0.49-2.29) and AOR=0.8 (95% CI: 0.37-1.69) with immobility OR=1.18 (95% CI: 0.64-2.17) and AOR=1.03 (95% CI: 0.56-1.87) with low food intake OR=1.20 (95% CI: 0.67-2.15) and AOR 1.14 (95% CI: 0.66-1.99) with low fluid intake (Adjusted for: sex, race, age, cognitive status, number of 10 comorbidities, impairments of 7 activities of daily living) | 10 |