Table 2 Articles reporting prevalence of pain in nursing home residents with dementia
From: A systematic review of prevalence of pain in nursing home residents with dementia
Author, Year, Country | Aim of the study | Participants with dementia: numbers, age, gender | Design | Inclusion | Assessment of pain | Prevalence of pain |
|---|---|---|---|---|---|---|
Andrews et al. 2019 [32] Australia | To investigate prevalence of pain in NHs residents with dementia | N = 114 WD Mean (SD) age = 86.2 (8.1) years Female 71.9% | Cross-sectional | Admitted more than 3 months ago Dementia is diagnosed or suspected after assessment with PAS | Documentation: Pain present when documented in last 3 months Pain was recorded in nursing or medical documentation | Independent of length of stay 86% had at least one documented pain episode the last 3 months |
Atee et al. 2021 [16] Australia | To investigate the prevalence of pain in NH residents with NPS by dementia diagnosis | N = 479 WD Mean (SD) age = 81.9 (8.3) years Female 55.5% | Cross-sectional | Independent of when admitted Dementia was recorded Has received special service for NPS last year | PainChek Pain present when PainChek ≥ 7 Staff assessment | Independent of length of stay Presence of pain was 65.6% Presence of pain in subsamples: AD (n = 196): 64.3% DUN (n = 159): 66% VaD (n = 61): 62.3% MD (n = 28): 78.6% DLB (n = 14): 78.6% FTD (n = 11): 54.6% Others WD (n = 10): 60% |
Barry et al. 2015 [50] Northern Ireland/United Kingdom | To investigate the prevalence of pain in NH residents with dementia | N = 42 WD Mean (SD) age = 82.1 (7.4) years Female 57.1% | Cross-sectional | Admitted more than four weeks ago Diagnosed with dementia | VDS Pain present right ‘now’ and ‘on an average day’ when VDS > 0 Self-reported, staff assessment and next of kin assessment | Independent of length of stay Presence of pain right now Self-reported: 23.8% Staff assessed: 42.9% Next of kin assessed: 57.1% Pain on an average day: Self-reported: 38% Staff assessed: 69% Next of kin assessed: 75% Missing self-reported pain in about 30% of residents for both assessments |
Bunker et al. 2022 [51] USA | To investigate prevalence of pain and pain impacting QoL the last days of life in NH residents with dementia, also seen by financial model for care | N = 115,757 Age and gender distribution is not stated Total with any pain N = 20,585 N with pain by model of care TM N = 13,256 Mean age = 85.9 years Female 67.5% MA N = 4909 Mean age = 86 years Female 66.6% ACO N = 2420 Mean age = 86.4 years Female 68% | Cross-sectional | Last 30 days of life Dementia diagnoses on MDS Cognitive impairment with CFS score 2 or higher | MDS 3.0 Pain reported present in a 5-day period by resident Any pain present Pain impacting QoL = self-reported pain either on pain that made it hard to sleep or limited the day-to-day activities in a 5-day period | Last 30 days of life Presence of any pain (n = 20,585) 17.8% Presence of pain impacting QoL in residents with pain (n = 4528) 22% Presence of pain impacting QoL in subsamples residents with pain: 21.6% in TM 22.1% in MA 23.6% in ACO |
Dube et al. 2020 [52] USA | To investigate pain in NH residents without cancer at admission | Moderate dementia N = 1,973,550 Age ≥ 75 years = 75.8% Female 59.5% Severe dementia N = 1,638,194 Age ≥ 75 years = 81.8% Female 62.8% Total sample N = 8,613,080 Age ≥ 85 years = 34% Female = 62.5% | Cross-sectional | Newly admitted (assessed ≤ 14 days) Dementia if cognitive impairment was moderate or severe defined by BIMS or CPS | MDS 3.0 Pain reported present in a 5-day period Reported by resident or by staff for residents unable to self-report | Admission Moderate dementia Presence of self-reported pain (n = 1,777,495): 49.8% Presence of staff-assessed pain (n = 196,055): 41.5% Severe dementia Presence of self-reported pain (n = 1,238,621): 32.9% Presence of staff-assessed pain (n = 399,573): 37.2% |
Estabrooks et al. 2015 [39] Canada | To investigate the symptom burden, including pain, in older NH residents with and without dementia in their last year of life analyzed by work environment characteristics in the facilities | N = 2635 WD Age and gender distribution were not stated Total sample N = 3647 Mean (SD) age 88 years Female 65.8% | Longitudinal Follow-up: 4 assessments last year of life | Having 4 quarterly RAI-MDS 2.0 reports before death Dementia recorded in the assessment history | RAI-MDS 2.0 Daily pain in a 7-day period that was moderate or worse Reported by resident or by staff for residents unable to self-report | Last year of life In high ranked NH work environments: 4, 3, 2 quarters before death: 14% had daily pain 1 quarter before death: 18% had daily pain In low ranked NH work environments: 4, 3, 2 quarters before death: 17–18% had daily pain 1 quarter before death: 21% had daily pain |
Forrester et al. 2021 [53] USA | To investigate pain in NH residents who are unable to self-report pain due to dementia | N = 26,816 WD Age ≥ 75 years = 82.3% Female 72.4% | Longitudinal Follow-up 3 & 6 months Pain reported once, baseline | Newly admitted (assessed ≤ 14 days) Residents who are unable to self-report pain due to dementia/cogni-tive impairment | MDS 3.0 Presence of pain detected in a 5-day period Staff assessment | Admission 35.9% had presence of pain In those with stable, severe, or worsening cognitive impairment at 6 months: 38.7% had pain at admission while in those with stable mild/moderate cognitive impairment or some improvement after 6 months 35.3% had pain at admission |
Griffioen et al. 2019 [31] Norway | To investigate the prevalence of pain and opioid use in NH residents with dementia and agitation | N = 327 WD Mean (range) age 85.7 (65–104) years Female 73.7% | Cross-sectional | Admitted more than four weeks ago Diagnosed with dementia using DSM-IV Having moderate to severe dementia defined by FAST Agitation defined by CMAI | MOBID-2 Pain Scale Clinically relevant pain when MOBID-2 ≥ 3 Staff assessment | Independent of length of stay 62.1% had clinically relevant pain In NH-residents with dementia and pain: 61.6% were prescribed analgesics and 24.6% of those with pain used strong opioids 10.5% without pain also used opioids (not including codeine combinations and tramadol) |
Haasum et al. 2011 [54] Sweden | To investigate pain and use of analgesics in older adults with and without dementia living in NH/institution and own home | N = 186 WD in NH/ institution Mean (SD) age 89.1 (6.1) years Female 87.1% | Cross-sectional | Independent of length of stay Diagnosed with dementia using DSM-IV | Self-reported pain Experience of any pain last 4 weeks Presence of pain-related diagnoses | Independent of length of stay 8.6% had presence of pain 42.5% had missing or don’t know 48.4% had a pain-related diagnosis |
Helvik et al. 2021 [15] Norway | To investigate pain in people with dementia admitted to NH | N = 953 WD Mean (SD) age 84 (7.5) years Female 64.2% | Cross-sectional | Newly admitted (≤ 4 weeks) Diagnosed with dementia using ICD-10 criteria | MOBID-2 Pain Scale Clinically relevant pain when MOBID-2 ≥ 3 Staff assessment | Admission 35.5% had clinically relevant pain |
Helvik et al. 2022 [55] Norway | To investigate use of analgesics stratified by clinically relevant pain at admission and 12 month and 24 months in NH residents with dementia | N = 996 WD Mean (SD) age 84.5 (7.6) years Female 63.9% | Longitudinal Follow-up: Annual for 2 years | Newly admitted (≤ 4 weeks) Diagnosed with dementia using ICD-10 criteria | MOBID-2 Pain Scale Clinically relevant pain when MOBID-2 ≥ 3 Staff assessment | Admission 35.6% had clinically relevant pain Thereafter 1 year: 37.7% 2 years: 41.5% |
Hendriks et al. 2015 [7] The Netherlands | To investigate the course of symptoms, including pain, from admission to death in NH residents with dementia | N = 327 WD Mean (SD) age 84 (7.0) years Female 70% | Longitudinal Follow-up: Semiannual assessments for maximum 3.5 years | Newly admitted (8 weeks) Diagnosed with dementia by NH physician | Documentation Pain present when documented frequency ≥ 5 of 30 previous days the second month after admission & average of documented frequency ≥ 5 days of 30 days the three last months before semi-annual assessments Persistent presence of pain when presence of pain at two consecutive assessments Incidence of pain: No presence of pain at one assessment and presence at next Resolution of pain: Presence of pain at one assessment and not at next | Admission 52% had presence of pain Thereafter ½ year: 61% 1 year: 68% 1½ year: 58% 2 years: 56% 2½ years: 47% Last ordinary assessment before death: 67% Persistent presence of pain varied between 36–41% across consecutive assessments Incidence of pain varied between 6–24% across consecutive assessments Resolution of pain varied between 10–13% across consecutive assessments |
Hendriks et al. 2014 [18] The Netherlands | To investigate prevalence of symptoms, including pain, in the last week of life in NH residents with dementia | N = 330 WD Mean (SD) age at death 85.2 (7.4) years Female 67% | Cross-sectional | Independent of length of stay prior to final week Diagnosed with dementia | Documentation Pain present when documented frequency > 1 day the last week of life | Last week of life 52% had presence of pain |
Holmerová et al. 2018 [56] Czech Republic | To investigate pain and use of analgesics in NH residents | Mild dementia N = 85 Mean (SD) age 85.6 (7.8) years Female 77.6% Moderate dementia N = 171 Mean (SD) age 85.3 (7.4) years Female 83.6% Total sample N = 404 Mean (SD) age 84.8 (7.5) years Female 78% | Cross-sectional | Independent of when admitted Mild and moderate to severe dementia defined by MMSE | EQ-5D-3L-pain/ PAINAD Mild dementia Pain present if one item in EQ-5D-3L > 1 Self-reported Moderate to severe dementia Pain present when PAINAD > 0 Staff assessment | Independent of length of stay Mild dementia 54.1% had presence of pain Moderate to severe dementia 39.2% had presence of pain |
Hunnicutt et al. 2017 [57] USA | To investigate intermittent pain and persistence of pain in long stay NH residents | WD: Number, age, and gender distribution is not stated Total sample N = 1,387,405 Age and gender distribution not stated | Longitudinal Follow-up: 90 days after inclusion | Long term stay (> 100 days) Dementia if cognitive impairment was moderate or severe defined by BIMS or CPS | MDS 3.0 Pain present when reported ≥ 1 of 5-previous days Reported by resident (VDS/NPS > 0) or by staff for residents unable to self-report Intermittent pain present if pain on either of the two assessments Persistent pain present if pain at both assessments | Long term stay Moderate dementia 19.8% had intermittent presence of pain 18.4% had persistent presence of pain Severe dementia 16.9% had intermittent presence of pain 10.5% had persistent presence of pain |
van Kooten et al. 2017 [58] The Netherlands | To investigate prevalence of pain in NH residents with dementia | N = 199 WD Mean (SD) age 84.9 (6.5) years Female 77.4% | Cross-sectional | Independent of when admitted Living in a Dementia Special Care unit diagnosed with dementia Information regarding dementia subtypes | MOBID-2 in all & NRS/VDS/FPS-R/PAINAD in some In all residents: Clinically relevant pain when MOBID-2 ≥ 3 Staff assessment Residents able to self-report pain (n = 122): Clinically relevant pain when NRS ≥ 4, VDS moderate or higher and/or FPS-R third face Residents not able to self-report pain (n = 67): Clinically relevant pain when PAINAD ≥ 2 Staff assessment | Independent of length of stay 43.0% had clinically relevant staff assessed pain (MOBID-2) Prevalence of clinically relevant pain in subsamples (MOBID-2): AD (n = 106): 41.7% MD (n = 31): 38.7% VaD (n = 20): 60.0% Others WD (n = 42): 41.5% Pain was more prevalent in those with severe dementia (MOBID-2) Prevalence of pain using a self-report inventory or PAINAD was lower (22.1% and 26.9%, respectively) than assessed with MOBID-2 |
Koppitz et al. 2015 [13] Switzerland | To investigate symptoms noted in records of NH residents with dementia in their dying phase | N = 65 WD Mean (SD) age 83.7 (8.5) years Female 75.4% | Longitudinal Follow-up: over 90 days, 4 phases; 90–61, 60–31, 30–8, 7–0 days to death | Living in a Dementia Special Care unit | Documentation Pain present when documented ≥ 1 of 7 days, ≥ 1 of 30 days, ≥ 1 of 90 days | Last 90 days of living 71% had documentation of presence of pain Over the four survey periods (n = 33–41): The prevalence of pain increased from 64.2% to 80.4% in the subsamples with detailed period information |
Malara et al. 2016 [11] Italy | To investigate prevalence of pain in NH residents with verified dementia | N = 181 WD Mean (SD) age male 80.7 (9.3) years Mean (SD) age female 85.6 (7.3) years Female 66.3% | Cross-sectional | Independent of when admitted Diagnosed with dementia using DSM-IV | NRS/PAINAD/ICD-9 in all residents Pain present when NRS > 0 Self-report of pain & PAINAD ≥ 2 Staff assessment Chronic pain documented according to ICD-9-CM | Independent of length of stay 79.6% had presence of self-reported pain among those with reliable answers of NRS (42.5% of total sample) 51.8% had presence of staff assessed pain (PAINAD) 46.4% had chronic pain (ICD-9-CM) |
Miu and Chan 2014 [59] Hong Kong | To investigate prevalence of pain in NH residents in residents with dementia | N = 309 WD Mean (SD) age 85.0 (7.5) years Female 59.5% Residents with pain: n = 190 Mean (SD) age 84.6 (7.6) years Female 65.3% Residents without pain: n = 119 Mean (SD) age 85.6 (7.4) years Female 67.2% | Cross-sectional | Admitted more than four weeks ago A diagnosis of dementia from medical record | PAINAD Pain present when PAINAD ≥ 2 Staff assessment | Independent of length of stay 61.5% had presence of pain |
Morrison et al. 2020 [60] USA | To investigate prevalence of pain among newly admitted NH residents | Moderate dementia N = 268,167 Age ≥ 75 years = 74.2% Female 58.4% Severe dementia N = 544,400 Age ≥ 75 years = 75.5% Female 61.6% Total sample N = 1,036,806 Age ≥ 75 years = 71.5% Female 60.3% | Cross-sectional | Newly admitted (≤ 14 days) Dementia if cognitive impairment was moderate or severe defined by BIMS or CPS | MDS 3.0 Presence of signs of pain behavior ≥ 1 of the previous 5 days Staff assessment | Admission Moderate dementia 42.4% had presence of pain Severe dementia 38.4% had presence of pain |
Raikumar et al. 2017 [17] United Kingdom | To investigate the prevalence of pain in NH residents with dementia at two time-points | N = 967 WD Those with pain (n = 341) Mean (SD) age 85.3 (8.7) years Female 73.6% Those without pain (n = 626) Mean (SD) age 84.2 (9.1) years Female 69.0% N = 629 at follow-up | Longitudinal Follow-up once after 9 months | Independent of when admitted Dementia if filling the diagnostic criteria for dementia, and CDRS ≥ 1 | APS Pain present when APS ≥ 3 Staff assessment | Independent of length of stay First assessment: 35.3% had presence of pain Second assessment 31.3% had presence of pain |
Rostad et al. 2017 [61] Norway | To investigate pain and quality of life in NH residents with severe dementia | N = 112 WD Median (range) age 84 (68–99) years Female 69% | Cross-sectional | Independent of when admitted Diagnosis of dementia in medical records Lacking capacity to self-report or communicate pain verbally | Doloplus-2 pain scale Clinically relevant pain when Doloplus-2 ≥ 5 Staff assessment | Independent of length of stay 67.9% had clinically relevant pain |
Sengupta et al. 2010 [14] USA | To investigate the prevalence of pain by race and dementia in NH residents | WD: Number, age, and gender distribution not stated Total sample N = 14,017 Age and gender distribution not stated | Cross-sectional | Independent of when admitted Dementia when documented in medical record | Documentation Pain present when documented frequency ≥ 1 of the previous 7 days | Independent of length of stay White residents: 18% had presence of pain Non-white residents: 12% had presence of pain |
Sjölund et al. 2021 [62] Sweden | To investigate the prevalence of pain in NH residents using different pain assessments and by cognitive impairment | N = 95 WD Age and gender distribution were not stated Total sample N = 213 Mean (SD) age 85.4 (6.9) years Female 68.5% | Cross-sectional | Admitted more than four weeks ago Dementia is stated by MMSE | Doloplus-2/NRS Pain present when Doloplus-2 ≥ 5 Staff assessment & NRS > 0 Staff assessment | Independent of length of stay 72.6% had presence of pain using Doloplus-2 83.2% had presence of pain using NRS |
Tan et al. 2016 [63] Australia | To investigate pain and use of analgesics in NH residents with and without dementia | N = 169 WD Mean (SD) age 87.4 (6.1) years Female 78.1% | Cross-sectional | Independent of when admitted Dementia: no information about criteria for labeling dementia | FPS-R/PAINAD Pain present when FPS-R > 0, Self-reported & PAINAD > 0, Staff assessment | Independent of length of stay 66.3% had self-reported presence of pain (FPS-R) 26.0% had staff-assessed presence of pain (PAINAD) High number of missing responses in FPS-R |