Afonso-Argilés et al. BMC Geriatrics (2020) 20:453 https://doi.org/10.1186/s12877-020-01835-x RESEARCH ARTICLE Open Access Emergency department and hospital admissions among people with dementia living at home or in nursing homes: results of the European RightTimePlaceCare project on their frequency, associated factors and costs F. Javier Afonso-Argilés1,2, Gabriele Meyer3,4*, Astrid Stephan3,4, Mercè Comas5,6, Ansgar Wübker7, Helena Leino-Kilpi8, Connie Lethin9,10, Kai Saks11, Maria Soto-Martin12, Caroline Sutcliffe13, Hilde Verbeek14,15, Adelaida Zabalegui16,17, Anna Renom-Guiteras2,6,18 and on behalf of the RightTimePlaceCare Consortium Abstract Background: Evidence is lacking on the differences between hospitalisation of people with dementia living in nursing homes and those living in the community. The objectives of this study were: 1) to describe the frequency of hospital admission among people with dementia in eight European countries living in nursing homes or in the community, 2) to examine the factors associated with hospitalisation in each setting, and 3) to evaluate the costs associated with it. Methods: The present study is a secondary data analysis of the RightTimePlaceCare European project. A cross- sectional survey was conducted with data collected from people with dementia living at home or who had been admitted to a nursing home in the last 3 months, as well as from their caregivers. Data on hospital admissions at 3 months, cognitive and functional status, neuropsychiatric symptoms, comorbidity, polypharmacy, caregiver burden, nutritional status, and falls were assessed using validated instruments. Multivariate regression models were used to investigate the factors associated with hospital admission for each setting. Costs were estimated by multiplying quantities of resources used with the unit cost of each resource and inflated to the year 2019. (Continued on next page) * Correspondence: gabriele.meyer@medizin.uni-halle.de 3 Department of Nursing Science, Witten/Herdecke University, Witten, Germany 4 Institute of Health and Nursing Sciences, Medical Faculty, Martin Luther University Halle-Wittenberg, Halle (Saale), Germany Full list of author information is available at the end of the article © The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Afonso-Argilés et al. BMC Geriatrics (2020) 20:453 Page 2 of 13 (Continued from previous page) Results: The study sample comprised 1700 people with dementia living in the community and nursing homes. Within 3 months, 13.8 and 18.5% of people living in nursing homes and home care, respectively, experienced ≥1 hospital admission. In the nursing home setting, only polypharmacy was associated with a higher chance of hospital admission, while in the home care setting, unintentional weight loss, polypharmacy, falls, and more severe caregiver burden were associated with hospital admission. Overall, the estimated average costs per person with dementia/year among participants living in a nursing home were lower than those receiving home care. Conclusion: Admission to hospital is frequent among people with dementia, especially among those living in the community, and seems to impose a remarkable economic burden. The identification and establishment of an individualised care plan for those people with dementia with polypharmacy in nursing homes, and those with involuntary weight loss, accidental falls, polypharmacy and higher caregiver burden in the home care setting, might help preventing unnecessary hospital admissions. Keywords: Aged, Dementia, Geriatric syndrome, Home care, Hospitalisation, Nursing home Background alone is not associated [9]. However, there is a lack of Dementia is a major cause of disability and dependency studies reporting on factors associated with hospitalisa- among older people worldwide and has a psychological, tion among people with dementia living in NH. social and economic impact on the persons affected, Geriatric syndromes are known to predict an increased their families and caregivers, and the society [1]. People likelihood of hospitalisation, affect quality of life [11], in- with dementia have increasing needs for care and super- crease the use and cost of health care, and raise overall vision throughout the course of their disease, usually mortality among the general older population [12, 13]. leading to the need for support from relatives or other However, relevant geriatric syndromes such as malnutri- informal caregivers and, when the needs of people with tion or falls have not been evaluated as potential factors dementia are increased, many of them need to receive associated with hospital admissions in the studies involv- care in nursing homes (NH) [2]. ing people with dementia [9]. Furthermore, even if care- Admission to hospital due to acute medical problems, givers of people with dementia have a crucial role in the including the admission to the emergency departments, care and resource use in this population, only few stud- is one of the events that people with dementia may ex- ies have analyzed the effects that their psychological perience throughout the course of the disease, irrespec- wellbeing may have on the decisions of hospital admis- tively of whether they live at their own home or at NH. sion of these people [14]. Despite the benefits of receiving specialized care, mul- Even if the economic cost of dementia has been widely tiple negative health outcomes have been associated with evaluated in recent years [15], only few studies have pro- the admission to hospital of older people in general and vided a detailed description of the costs of hospital ad- people with dementia in particular, including high risk mission among people with dementia taking their living of delirium [3], functional decline [4], fall-related injuries situations into consideration [16]. This information may [5], nosocomial infections, pressure ulcers [6], and an be helpful for the planning of the provisions of care. elevated risk of mortality [7, 8]. Thus, there is a lack of studies that describe and com- In a recent systematic review of the literature, Shep- pare the frequency of hospital admission in both the herd et al. (2019) concluded that people with dementia community and NH settings, investigate and compare are more frequently admitted to hospital than those the factors associated with hospital admission in both without dementia, and identified hospitalisation rates in settings, and provide information on its costs. people with dementia between 0.37 and 1.26/person-year in high-quality studies [9]. However, studies on people with dementia that predominantly resided in long-term Aim nursing care facilities were excluded from this review. The aims of the present study were: 1) to describe the Maxwell et al. (2015) reported an annual hospitalisation frequency of hospital admissions (including Emergency rate of 0.10 per person-year among people with demen- Department), among people with dementia from eight tia living in NH [10]. European countries living in the community and those In their meta-analysis, Shepherd et al. (2019) found living in nursing homes; 2) to examine the factors asso- strong evidence that multimorbidity, polypharmacy, and ciated with hospital admissions among people with de- lower functional ability are associated with hospital mentia living in the community and those living in admission, and strong evidence that dementia severity nursing homes settings, separately; 3) to evaluate the Afonso-Argilés et al. BMC Geriatrics (2020) 20:453 Page 3 of 13 costs associated with hospital admissions according to (for example an ethical committee specialized in medical the different living situations. or nursing science) to conduct the study in accordance with their national standards and regulations. Country- Methods specific consent procedures were followed. Design Data were collected by trained interviewers at baseline This study is a secondary analysis of a large European between November 2010 and April 2012 and follow-up research project called ‘RightTimePlaceCare’ (RTPC). interviews were conducted after 3 months [17]. All inter- The RTPC survey was a longitudinal prospective study, viewers were professionals in health or social care or conducted in eight European countries (Estonia, Finland, medical/nursing/social care students with practical France, Germany, Netherlands, Spain, Sweden, and the experience and at least a Bachelor’s degree. United Kingdom). The project aimed to improve health and social care services for European citizens with de- Measures mentia and focused on the transition from professional Sample characteristics home care towards institutional nursing care. Further At baseline, information on the age, sex, country and liv- details are published elsewhere [17]. ing situation (i.e. home care (HC) vs nursing home (NH)) of the people with dementia was collected. Cogni- Participants tive status was assessed with the S-MMSE (range 0–30), The RTPC survey comprised two groups of participants: with higher scores indicating less cognitive impairment 1) People with dementia newly admitted to NH (i.e. [19]. The disease severity was defined as mild (S-MMSE within one to 3 months after admission) and their > 21), moderate (10–21), or severe (< 10) [20]. Partici- informal caregivers; 2) People with dementia who re- pants who were unable to perform the S-MMSE due to ceived professional home care and were at risk of cognitive or functional impairment were placed into the institutionalization (as judged by a professional respon- “severe dementia” group. Medical history of past and sible for their care) along with their informal caregivers. current clinical conditions were recorded based on the Informal caregivers could include spouses/partners, Charlson Comorbidity Index (CCI) (range 0–37), with other family members, relatives, friends, neighbours or higher scores indicating more clinical conditions and a other unpaid individuals within their social network score > 2 indicating moderate comorbidity [21]. Inde- [18]. The number of informal caregivers was limited to pendence in activities of daily living (ADL) was mea- one main informal caregiver per person with dementia, sured by the Katz index (range 0–6); we categorised defined as the person who was most involved in care for dependency as mild (Katz index 5–6), moderate (2–4), the people with dementia. For people living in NH, the or severe (< 2) [22]. Behavioural and psychiatric symp- next of kin or significant other was included, being the toms in dementia were evaluated with the Neuropsychi- person closest to the person with dementia (spouse, chil- atric Inventory Questionnaire (NPI-Q). The NPI-Q dren, grandchildren, other relatives, or friends) and who comprises 12 domains (e.g. agitation and aggression, de- was most involved in decisions about their care. lusions, hallucinations) with 2 scores reported for each Inclusion criteria for people with dementia were if they domain: (1) presence of symptoms and (2) severity on a (1) had a primary diagnosis of dementia as diagnosed by 0–3 scale (0 = none, 1 = mild, 2 = moderate, 3 = severe; an expert (e.g. physician, psychiatrist, neurologist, geria- range 0–36), with higher scores indicating more (severe) trician, or general practitioner, depending on countries’ symptoms [23]. diagnostic procedures) and recorded in the medical re- Furthermore, several quality of care indicators based cords; (2) scored 24 points or lower on the Standardized on recent literature [24] were assessed at baseline: nutri- Mini Mental State Examination (S-MMSE) [19]; and (3) tional status (one item question ‘did the person experi- had an informal caregiver who visited the people with ence a weight loss of 4% or more of his/her weight in dementia at least twice a month. People with dementia the past year?’) [25, 26], polypharmacy (≥5 drugs) [27] were excluded when they (1) were younger than 65 and the occurrence of falls during the preceding 3 years; (2) had a primary psychiatric diagnosis or Korsak- months. Fall was defined as “an unexpected event in off syndrome; and, for the group recently admitted to which the participant comes to rest on the ground, floor, NH, (3) were only temporarily resident in the NH (e.g. or lower level” [28]. rehabilitation, respite of the informal caregiver) with the With regard to the informal caregivers, data on their intention of moving back home. age, sex and relationship with the person with dementia were collected. In addition, caregiver burden was mea- Procedures sured using the Zarit Burden Interview (ZBI) [29]. Infor- Each country obtained ethical approval from a country mal caregivers responded to 22 statements relating to specific legal authority for research on human beings the care of their relative with dementia using a Likert Afonso-Argilés et al. BMC Geriatrics (2020) 20:453 Page 4 of 13 scale scoring system which ranged from “Never” to Estimate of cost for emergency department and hospital “Nearly Always”. Total scores range from 0 to 88, with a admissions higher score indicating higher perceived burden; three While the costs of dementia were previously measured severity groups were defined: little or no burden (ZBI < 21), from a societal perspective in the RTPC project [33–35], mild burden (ZBI ≥21–40), or moderate to severe burden our study focused on the assessment of direct medical (ZBI > 40) [30]. costs generated by EDA and HA and calculated as aver- In the HC setting, information on independence in age costs per capita and year in Euros (€). In the absence ADL, behavioural and psychiatric symptoms in dementia of valid and comparable unit costs for all participating and quality of care indicators was asked to the informal countries, a common price vector based mainly on caregivers of the people with dementia, while in the NH Swedish sources was used for all countries [33, 36]. For setting, this information was asked to the formal care- HA, the length of stay in each medical department was givers, as they were considered best informed proxies. taken into account in the measurement. In the case of All measurement instruments were selected based on fees not being available for daily stay in departments their psychometric properties (validity, reliability), clin- other than internal medicine, geriatrics or surgery it was ical utility and appropriateness for the target settings decided to assume a cost per day similar to the daily ex- and population [17]. pense in the department of geriatrics. In addition, we calculated the average costs per capita and year specific- ally among those people with dementia who had suffered Information on emergency department and hospital ≥1 hospital admission. All costs were inflated to the year admissions 2019 and currency conversion adjustments based on The Resource Utilization in Dementia (RUD) instrument 2019 exchange rates were made for the non-EURO was used to determine the health care resources used for countries. Cost components, unit costs, the international people with dementia [31]. The RUD instrument cap- adjustment schemes and their sources are shown in tures medical care resources use (e.g. medication, in- Table 1 [32, 36, 37]. patient and outpatient care), community care services (e.g. home care, transportation, meals on wheels, day Statistical analyses care), special accommodation (e.g. nursing home) and The characteristics of people with dementia and their in- time spent with caring activities by informal caregivers. formal caregivers as well as the HA and EDA episodes Information on hospital visits since the baseline inter- are described using means and standard deviations (SD) view was gathered using an adapted version of the RUD for continuous variables with normal distribution, instrument in the follow-up assessment that included median, first and third quarter for continuous variables the two concepts Hospital Admission (HA) and Emer- without normal distribution, and percentages for gency Department Admissions (EDA). In the HC setting, discrete variables. The assessment of the hospitalisation this information was asked to the informal caregivers, rates was made taking into account the estimated annual while in the NH setting, this information was asked to emergency department and hospital admissions, respect- the formal caregivers, as they were considered best in- ively, in addition to the total number of people with formed proxies. With regard to HA, caregivers were dementia participating in the study. asked: “since the last visit, was the person with dementia Univariate analyses were used to evaluate the inde- admitted to a hospital (for more than 24 hours)?”; “how pendent variables (CCI, S-MMSE, Katz Index, NPI-Q many times was your relative/the resident hospitalised?”; scores, ZBI, weight loss, polypharmacy, falls and setting) “for each hospitalisation, please provide the diagnosis or potentially associated with the occurrence of a Hospital reasons for hospitalisation”; “for each hospitalisation, Admission (at least one episode of HA or EDA). Vari- please specify the total number of nights spent in each ables were chosen after literature-based team discussion. type of ward”. The following types of ward were asked Mann-Whitney’s U test was used for continuous vari- about: geriatric ward, surgery ward, internal medicine ables, as the distribution of the variables was not normal ward, psychiatry ward and other hospital stays. If the an- and the number of cases was small. Fisher’s exact test swer “other” was given, the caregiver was asked to spe- was preferred when the software was available to calcu- cify the type of ward by means of an open question. late it (all categorical variables except country), even With regard to EDA, caregivers were asked: “Since the though the approximation using the Chi-square test was last visit, did the person with dementia receive care in good because of sufficient sample size in all categories an accident and emergency hospital department (for less [38]. All variables were included in a logistic regression than 24 hours)?”; and if yes, “how many times”? Partici- model. The different independent variables were tested pants with at least one episode of HA or EDA were on multicollinearity in order to identify potential inter- considered to have experienced a hospital visit. actions between them. Afonso-Argilés et al. BMC Geriatrics (2020) 20:453 Page 5 of 13 Table 1 Unit costs and international price adjustments (inflated to the year 2019a) Estonia Finland France Germany Netherlands Spain Sweden UK International price adjustment Exchange rates; local currency / Euro 1.00 1.00 1.00 1.00 1.00 1.00 10.59 0.87 Medical Care (Inpatient care) Costsb per day hospital (geriatric) 92.14 318.60 313.82 293.41 280.82 162.22 335.25 256.98 Costs per day hospital (internal medicine) 101.27 350.18 344.92 322.50 308.64 179.13 368.50 282.45 Costs per day hospital (surgery) 148.87 514.74 507.01 474.05 453.69 263.31 541.63 415.19 Costs Emergency room visit 63.06 218.14 214.86 200.89 192.27 111.59 229.54 175.94 a Last available official statistics by the Organisation for Economic Co-operation and Development (OECD). Prices, purchasing power parities (PPP) and Exchange rates [32] b Costs are expressed in Euros All analyses considered a significance level α of 0.05 dementia/year of 0.26 among persons living in NH and (two-sided) and were conducted with IBM SPSS Statis- 0.43 among those living in HC. tics version 25 (IBM Corporation, Chicago, IL). Some differences were found with regard to the types of departments where people with dementia were admit- Results ted, depending on their living situations. Sample characteristics The total RTPC sample at baseline comprised 2014 Factors associated with emergency department and dyads of people with dementia and their informal care- hospital admissions givers. For the present study, only participants with data Table 4 displays the univariate and multivariate analyses available on EDA and HA were included. Thus, the on the factors potentially associated with having at least study sample comprised 1700 people with dementia and one EDA or HA for each setting. The multivariate ana- their informal caregivers (n = 1054 (62%) from the HC lyses showed that, for people with dementia living in setting and n = 646 (38%) from the NH setting). NH, polypharmacy was associated with having at least The mean age of the study sample was 82.8 years one EDA or HA (OR 1.96, CI (1.03–3.75)). With regard (standard deviation (SD) 6.5), and 68.5% were women. to the people with dementia living in HC, the factors in- The characteristics of the study participants (people with dependently associated with hospital admission were: dementia and informal caregivers) are summarized in the presence of falls in the preceding 3 months (OR 1.64, Table 2 and Additional file 1, respectively. CI (1.12–2.41)), polypharmacy (OR 2.48, CI (1.70–3.62)), weight loss (OR 1.73, CI (1.17–2.56)), mild caregiver Emergency department or hospital admissions burden compared with little or no burden (OR 1.67 CI Table 3 describes the frequencies of EDA and HA in (1.04–2.66)), and moderate to severe caregiver burden both settings as well as, for HA, the frequencies of ad- compared with little or no burden (OR 1.76, CI (1.04– mission and the average length of stay in days in the 2.98)). No statistically significant association was found different medical departments evaluated. between hospital admission and functional or cognitive Two-hundred and eighty-four of the people with de- status of participants in either NH or HC. mentia (16.7%) experienced at least one EDA (< 24 h) or HA between the baseline and follow-up assessments, Costs of emergency department and hospital admissions with a higher frequency in the HC group (NH: 89 Table 5 shows the estimated health cost per person with (13.8%) vs HC: 195 (18.5%); p = 0.011). The majority of dementia/year according to country and setting (NH vs the people with dementia living at home and in nursing HC). On average, for the whole study sample, the esti- home who suffered at least one EDA within the 3 mated medical cost per person with dementia/year re- months had only one episode of EDA, with a minority of lated to EDA and HA was 1884.28€, with 1046.19€ per them suffering two or more EDA. A similar situation person with dementia/year in NH group and 2397.96€ in occurred for HA episodes. HC group. Concerning the estimated average expend- We found an overall estimated HA rate per person iture per person with dementia/year for EDA, this was with dementia/year of 0.44 and EDA rate per person 67.30€ in the NH group and 117.48€ in the HC group. with dementia/year of 0.37, with an estimated rate of For HA an estimated average cost per person with de- HA per person with dementia/year of 0.35 among per- mentia/year of 978.89€ was obtained in the NH group, sons living in NH and 0.50 among those living in HC, and 2280.48€ in the HC group. On average, for the and an estimated rate of EDA per person with whole study sample, we found higher expenses per Afonso-Argilés et al. BMC Geriatrics (2020) 20:453 Page 6 of 13 Table 2 Baseline characteristics of the people with dementia, by setting Variables Nursing Home Home Care Overall (n = 646) (n = 1054) (n = 1700) Age (years), mean (SD) 83.8 (6.5) 82.1 (6.5) 82.8 (6.5) Women, n (%) 486 (75.2%) 679 (64.4%) 1165 (68.5%) S- MMSE (range 0–30)a,b, median (Q1;Q3) 13 (8;17) 15 (10;20) 14 (9;19) Missing values 128 130 258 Katz Index (range 0–6)a, median (Q1;Q3) 2 (1;4) 3 (2;5) 3 (1;5) Missing values 2 11 13 Charlson Comorbidity Index (range 0–37)a, median (Q1;Q3) 2 (1;3) 2 (1;3) 2 (1;3) a Severity of neuropsychiatric symptoms (range 0–36) , median (Q1;Q3) 5.5 (3;10) 8 (4;13) 7 (3;12) Zarit Burden Interview (range 0–88)a, median (Q1;Q3) 21 (13;33) 31 (20.9;43) 27 (17;39.2) Missing values 3 3 6 Weight loss (≥4%, yes), n (%) 81 (13.0%) 211 (20.6%) 292 (17.7%) Missing values 25 28 53 Polypharmacy (≥5 drugs, yes), n (%) 440 (68.1%) 604 (57.3%) 1044 (61.4%) Mean number of drugs (SD) 6.0 (3.1) [6] 5.3 (3.1) [5] 5.5 (3.1) [5] Falls in preceding 3 months (baseline) 172 (26.7%) 215 (20.4%) 387 (22.8%) Missing values 3 1 4 Country, n (%) United Kingdom 55 (8.5%) 60 (5.7%) 115 (6.8%) Estonia 80 (12.4%) 145 (13.8%) 225 (13.2%) Finland 111 (17.2%) 157 (14.9%) 268 (15.8%) France 35 (5.4%) 151 (14.3%) 186 (10.9%) Germany 99 (15.3%) 91 (8.6%) 190 (11.2%) Netherlands 104 (16.1%) 165 (15.7%) 269 (15.8%) Spain 85 (13.2%) 155 (14.7%) 240 (14.1%) Sweden 77 (11.9%) 130 (12.3%) 207 (12.2%) Missing values declared when present SD Standard Deviation, Q1 First quartile, Q3 Third quartile a Underlined scores indicate the direction of a better outcome b Only participants with scores of lower than 24 points were included person with dementia/year in both ED and HA visits for admission per person with dementia/year of 0.26 among people with dementia living in the HC setting compared people living in NH and 0.43 among those living in HC. to those living in the NH setting, except in the In the HC setting, factors identified as being associated Netherlands, where a higher expenditure on hospitalisa- with a higher probability of suffering at least one EDA tion of people with dementia living in NH was found, or HA were: suffering weight loss, accidental falls, pre- despite the global EDA and HA cost per person with de- senting polypharmacy and having a caregiver with mild mentia/year being lower than the HC group. A greater to severe burden compared with little or no burden. In estimated cost per person with dementia/year for EDA the NH setting, only polypharmacy was associated with was also found in the NH group in France and a higher probability of suffering at least one EDA or HA. Germany. Concerning health costs, a higher estimated cost per person/year attributable to hospital admission (EDA and Discussion HA) was observed for people with dementia included in In this cross-sectional study, 1700 people with dementia the HC group as compared to the NH group. from eight European countries participating in the RTPC With regard to community-dwelling people with de- study were investigated. The estimated rate of hospital mentia, our results of estimated rate of hospitalisation admission per person with dementia/year of 0.35 among are within the range of hospitalization rates presented by people living in NH and 0.50 among those living in HC, Shepherd et al. in their systematic review of the litera- and an estimated rate of emergency department ture (rates of 0.37–1.26 per person/year) [9]. When Afonso-Argilés et al. BMC Geriatrics (2020) 20:453 Page 7 of 13 Table 3 Description of Emergency Department Admissions (EDA) and Hospital Admission (HA), by setting Nursing Home (n = 646) Home Care (n = 1054) Overall (n = 1700) p_value**** PwD* with at least 1 EDA or 1 HA**, n (%) 89 (13.8%) 195 (18.5%) 284 (16.7%) 0.011 PwD with at least 1 EDA (with < 24 h stay), n (%) 48 (7.4%) 123 (11.7%) 171 (10.1%) 0.005 PwD with valid number of EDA*** 43 115 158 PwD with 1 admission, n (%) 33 (76.7%) 81 (70.4%) 114 (72.2%) PwD with 2 or more admissions, n (%) 10 (23.3%) 34 (29.6%) 44 (27.8%) Rate of EDA per PwD/year 0.26 0.43 0.37 PwD with at least 1 HA (with > 24 h stay), n (%) 58 (9.0%) 135 (12.8%) 193 (11.4%) 0.018 PwD with valid number of HA*** 57 133 190 PwD with 1 admission, n (%) 50 (87.7%) 103 (77.4%) 153 (80.5%) PwD with 2 or more admissions, n (%) 7 (12.3%) 30 (22.6%) 37 (19.5%) Rate of HA per PwD/year 0.35 0.50 0.44 Department of HA, n (%) Geriatric 5 (10%) 49 (35%) 54 (28%) Internal Medicine 15 (31%) 41 (29%) 56 (29%) Surgical 20 (41%) 20 (14%) 40 (21%) Other 11 (22%) 30 (21%) 41 (22%) Length of stay during HA admission in days, median (Q1;Q3) Geriatric 8 (5;16) 8 (6;11) 7.5 (6;11) Internal Medicine 11 (4;15) 8 (6;17) 7.5 (5;17) Surgical 6.5 (3;17) 8.5 (4;11) 7 (3;15) Other 3 (2;6) 9 (6;18) 7 (4;14) Note: Q1 first quartile, Q3 third quartile *: PwD: People with Dementia **: A PwD may have suffered both EDA and HA episodes ***: Data on the number of EDA or HA available only for these participants ****: p values provided only for the main descriptive variables on EDA and HA comparing our results on hospitalisation rates among Sleeman et al. also found in a retrospective cohort people with dementia living in NH, the few studies exist- study of 4867 people with dementia in their last year of ing for this setting report on disparing results, with life in England, that being in a nursing home was associ- Maxwell et al. (2018) reporting a rate of 0.21 person/year ated with a significantly lower number of ED visits [43]. [10], and Feng et al. (2014) reporting a rate of 0.46 [39]. The authors argued that increasing bed capacity in NHs People with dementia living at their homes had higher may have explained their results, as it may have allowed rates of EDA or HA than those in the NH setting in the more people with advanced dementia dying in the NH. present study. Reasons for this may have been that care- Maxwell et al. also reported on lower hospitalisation givers of people with dementia who live at home may rates among people with dementia living in NH com- have had less support in managing health needs or pared with those living in assisted living facilities, and higher levels of care burden [40], leading to a greater attributed this difference to the insufficient capacity of need for emergency service utilization and hospital ad- assisted living facilities to cover the needs of people with mission. Other reasons for lower hospital transfer needs dementia [10]. in the nursing home setting compared with home care Conversely, another report analyzing the impact of de- suggested in the literature are that, even if EDA rates mentia on hospital and ED use among fee-for-service from nursing home are high [8], some of these institu- Medicare beneficiaries reported that people with demen- tions may be equipped with specific care units for people tia who lived in nursing homes were significantly more with advanced dementia [41], have a wider availability to likely to visit the emergency department and be hospita- perform post-acute attention [42], receive specialized lised than those who resided in their own homes [29]. health support from geriatric [43] or end-of-life care In the HC setting, polypharmacy was associated with more frequently, and they may have policies to prevent hospital admission, in the line with the results by Shep- transferring those persons to hospital. herd et al., who found moderate confidence in this Table 4 Univariate and multivariate analysis on the factors potentially associated with having at least one EDA or HA, by setting Nursing Home (n = 646) Home Care (n = 1054) PwD with PwD without p_value Unadjusted Adjusted OR [95%CI] PwD with at PwD without p_value Unadjusted Adjusted OR at least one EDA or HA OR [95%CI] least one EDA EDA or HA OR [95%CI] [95%CI] EDA or HA (n = 557; 86.2%) or HA (n = 859; 81.5%) (n = 89; 13.8%) (N = 195; 18.5%) Age (years) n (%) 0.120 0.562 65–80 years 17 (19.1%) 151 (27.1%) Reference Reference 65 (33.3%) 307 (35.7%) Reference Reference ≥ 81 years 72 (80.9%) 406 (72.9%) 1.58 (0.90–2.76) 1.94 (0.98–3.85) 130 (66.7%) 552 (64.3%) 1.11 (0.80–1.55) 1.12 (0.78–1.61) Sex, n (%) 0.085 0.282 Afonso-Argilés et al. BMC Geriatrics Female 60 (67.4%) 426 (76.5%) Reference Reference 119 (61.0%) 560 (65.2%) Reference Reference Male 29 (32.6%) 131 (23.5%) 1.57 (0.97–2.55) 1.55 (0.88–2.75) 76 (39.0%) 299 (34.8%) 1.20 (0.87–1.65) 1.06 (0.74–1.52) S-MMSE score, n (%),a 0,954 0,175 Mild dementia 8 (12.5%) 58 (12.8%) Reference Reference 42 (24.6%) 198 (26.3%) Reference Reference Moderate dementia 37 (57.8%) 242 (53.3%) 1.11 (0.49–2.51) 1.00 (0.42–2.38) 81 (47.4%) 396 (52.6%) 0,96 (0,64-1,45) 0.93 (0.60–1.45) (2020) 20:453 Severe dementia 19 (29.7%) 154 (33.9%) 0.89 (0.37–2.16) 1.13 (0.46–2.78) 48 (28.1%) 159 (21.1%) 1.42 (0.90–2.26) 1.3 (0.78–2.17) Weight loss, n (%) 0.724 0.002 No 80 (89.0%) 485 (86.6%) Reference Reference 140 (70.9%) 703 (81.4%) Reference Reference Yes 9 (11.0%) 72 (13.4%) 0.80 (0.38–1.67) 0.72 (0.32–1.62) 55 (29.1%) 156 (18.6%) 1.79 (1.25–2.57) 1.73 (1.17–2.56) Polypharmacy, n (%) 0.049 < 0.001 No 20 (22.5%) 186 (33.4%) Reference Reference 51 (26.2%) 399 (46.4%) Reference Reference Yes 69 (77.5%) 371 (66.6%) 1.73 (1.02–2.93) 1.96 (1.03–3.75) 144 (73.8%) 460 (53.6%) 2.45 (1.73–3.46) 2.48 (1.70–3.62) Falls in preceding 0.009 0.001 3 months n (%) No 55 (61.4%) 419 (75.1%) Reference Reference 137 (70.1%) 702 (81.7%) Reference Reference Yes 34 (38.6%) 138 (24.9%) 1.90 (1.19–3.05) 1.66 (0.96–2.86) 58 (29.9%) 157 (18.3%) 1.91 (1.34–2.71) 1.64 (1.12–2.41) Charlson Comorbidity 0.906 0.076 Index n (%) ≤2 55 (61.8%) 349 (62.7%) Reference Reference 131 (67.2%) 632 (73.6%) Reference Reference >2 34 (38.2%) 208 (37.3%) 1.04 (0.65–1,64) 1.04 (0.61–1.77) 64 (32.8%) 227 (26.4%) 1.36 (0.97–1.90) 1.13 (0.78–1.64) Katz Index, n (%) 0.221 0.029 Severe 60 (67.4%) 327 (58.9%) 2.94 (0.69–12.58) 2.00 (0.44–9.04) 84 (43.3%) 281 (33.1%) 1.60 (1.01–2.54) 1.24 (0.72–2.15) Moderate 27 (30.3%) 196 (35.3%) 2.20 (0.50–9.72) 1.96 (0.43–8.97) 80 (41.2%) 407 (47.9%) 1.06 (0.67–1.67) 0.95 (0.57–1.58) Mild 2 (2.2%) 32 (5.8%) Reference Reference 30 (15.5%) 161 (19.0%) Reference Reference NPI-Q Severity, mean (SD) 7.7 (6.0) 6.8 (5.7) 0.174 1.03 (1.00–1.07) 1.02 (0.97–1.07) 9.9 (6.1) 9.0 (6.2) 0.069 1.02 (1.00–1.05) 0.99 (0.96–1.02) Zarit Burden Index n (%) 0.511 0.018 Little or no burden 47 (53.4%) 264 (47.6%) Reference Reference 37 (19.0%) 227 (26.5%) Reference Reference Mild burden 28 (31.8%) 211 (38.0%) 0.75 (0.45–1.23) 0.6 (0.34–1.1) 88 (45.1%) 398 (46,5%) 1.36 (0.89–2.06) 1.67 (1.04–2.66) Moderate to severe burden 13 (14.8%) 80 (14.4%) 0.91 (0.47–1.77) 1.00 (0.47–2.15) 70 (35.9%) 231 (27.0%) 1.86 (1.20–2.88) 1.76 (1.04–2.98) CI Confidence Interval, EDA Emergency Department Admission, HA Hospital Admission, OR Odds Ratio, PwD People with Dementia a Mild Dementia (S-MMSE score > 21), Moderate Dementia (S-MMSE score 10–21), or Severe Dementia (S-MMSE score < 10 or not evaluated due to impaired cognitive or functional status) Page 8 of 13 Afonso-Argilés et al. BMC Geriatrics (2020) 20:453 Page 9 of 13 Table 5 Estimated average annual medical costs per person with dementia in the RTPC sample (n = 1700) a, b,c Medical Care (Inpatient care) Estonia Finland France Germany Netherlands Spain Sweden UK All countries n = 225 n = 268 n = 186 n = 190 n = 269 n = 240 n = 207 n = 115 n = 1700 Estimated n of people with 48 (56) 124 (164) 56 (68) 84 (108) 72 (144) 136 (200) 36 (108) 76 (96) 632 (944) dementia with EDA episodes (estimated EDA episodes/year) Cost (NH) 6.31 62.89 122.78 121.75 51.77 52.51 35.77 127.96 67.30 Cost (HC) 20.87 183.41 68.30 105.96 135.17 115.19 169.51 164.21 117.48 Total cost of EDA 15.69 133.49 78.55 114.19 102.93 92.99 119.76 146.87 98.41 Estimated n of people with 72 (816) 148 (2656) 176 (1832) 140 (1072) 44 (204) 56 (1012) 56 (1308) 72 (1000) 764 (9900) dementia with HA episodes (estimated HA days/year) Cost (NH) 215.86 1092.88 1326.99 1464.11 353.11 397.94 2005.59 1229.82 978.89 Cost (HC) 459.23 5340.47 3632.84 2429.68 153.14 1372.76 3028.60 1619.27 2280.48 Total cost of HA 372.70 3581.21 3198.94 1926.57 238.17 1059.53 2648.13 1433.01 1785.87 Estimated n of people with 120 272 232 224 116 192 92 148 1396 dementia with hospital episodes (EDA episodes and HA episodes) Cost (NH) 222.17 1155.77 1449.77 1585.86 424.83 540.84 2041.56 1357.78 1046.19 Cost (HC) 480.10 5523.87 3701.13 2535.65 288.31 1487.96 3198.11 1783.48 2397.96 Total cost of hospital episodes 388.39 3714.70 3277.49 2040.76 341.09 1152.52 2767.89 1579.89 1884.28 EDA Emergency Department Admissions, HA Hospital Admissions a All expenses refer to costs per person with dementia, according to setting and country b Costs calculated including only people with dementia with data available on the number of EDA or HA c All costs expressed in € association in their meta-analysis [9]. In contrast, Conversely, falls are of great concern for people Shepherd et al. found moderate confidence in the associ- with dementia given their potentially higher number ation of lower level of functional ability with hospitalisa- of visits to emergency departments and severe conse- tion risk. This association was not found in the present quences, mainly hip fracture [47]. Our results are study. Instead, in the present study significant associa- aligned with those reported by Toot et al. on the risk tions were found with a history of falls within the previ- of admission associated with osteoarticular conditions ous 3 months and with the presence of weight loss. (eg: falls/fractures) in people with dementia living in These factors were not evaluated by Shepherd et al. in the community [48]. their meta-analyses. Interestingly, the authors suggest in The severity of dementia was not associated with their discussion that it can be difficult to ascertain hospital admission, which is consistent with the results whether loss of functionality may be connected with presented by Shepherd et al. in their meta-analyses, who other adverse outcomes such as side effects of medica- reported moderate confidence in this finding [9]. tion or even malnutrition or weight loss. This might Conversely, higher comorbidity was not associated explain the differences between their results and those with hospital admission in the present study, in contrast of the present study. with the results by Shepherd et al., who graded their So far, unintentional weight loss has been found asso- confidence with this result as moderate. However, in ciated with increased morbidity and mortality among their discussion, the authors reported on a study [49] older adults [44], but to the best of our knowledge the that described an increased risk of hospitalisation only relationship between unintentional weight loss in people because of the presence of dementia as comorbidity, ir- with dementia and the risk of hospitalisation has not respective of the existence of any further comorbid been well established [9, 45]. In previous reports, but in conditions. older populations, malnutrition has been associated with Currently, evidence for effective interventions to re- an almost fourfold increased risk of readmission or mor- duce the risk of falls, to reduce polypharmacy and to im- tality within 7 days of discharge from a hospital, and the prove nutrition is limited and requires further risk almost doubled between 8 and 180 days after dis- development [50–53]. Nevertheless, the results of the charge [46]. present study suggest that the identification and Afonso-Argilés et al. BMC Geriatrics (2020) 20:453 Page 10 of 13 management of these three geriatric syndromes might of the overall costs of dementia care. Interestingly, a pre- help preventing hospitalisation events among people vious analysis of the costs of dementia care within the with dementia living at home. Furthermore, the promo- RTPC study showed higher costs for the care provided tion of an advanced and individualised care plan among at NH compared with those provided at HC, with the people with dementia showing these geriatric syndromes particularity that the costs in the HC setting increased may be particularly advisable. with the severity of dementia [33]. Mild to severe levels of caregiver burden were associ- The findings of our study should be interpreted con- ated with hospital admission for people with dementia sidering its limitations. Firstly, there might have been a living in the HC setting in the present study. This result number of people with undiagnosed dementia who were is in the line with the results by Guterman et al. [14] not included in the present study due to its inclusion and Maust et al. [40], which found a significant associ- criteria (formal diagnosis of dementia); these people, ation between mental health and caregiver distress, re- who may also be admitted to hospital for several reasons spectively, and ED use by people with dementia living in with the corresponding costs associated, could not be the community. Future interventions to reduce unneces- described in the present study. Secondly, the time period sary hospitalisations should also focus on providing sup- investigated for each participant was limited to 3 port to the caregivers of people with dementia living at months, which may not represent the entire population home. of people with dementia requiring hospital admission In the NH setting, only polypharmacy was associated over the one-year period, taking into account seasonal with hospital admission among people with dementia in fluctuations; however, the prospective character of the the present study, suggesting that there is a special need study may have facilitated the acquisition of reliable to target this geriatric syndrome for this population, in data. Furthermore, the RTPC country samples may not order to reduce unnecessary hospitalisations [54, 55]. be representative of the general national population of In the present study, it was observed that medical people with dementia. Thirdly, although we accounted costs associated with hospital admission (including for multiple variables that may affect the need for hos- EDA) were higher in the HC setting, results that can be pital admission, there may also be additional unmeas- explained by the higher frequency of HA and EDA ured confounding factors that influence the use of found among people with dementia living at home. hospital care, for example, specific health support at the Similar to our results, Coots Daras et al. (2017) found community or nursing home setting in each country or that people with dementia in their last year of life living even at the local level. Finally, several years have passed in NH had lower costs derived of EDA and HA than between data compilation and secondary analysis. How- people with dementia living in the community. However, ever, we believe that the present study adds relevant these results were not seen among the general popula- value to the body of literature with regard to the com- tion with dementia, for whom the costs of EDA and HA parison of the frequency of hospitalisation between the were higher among those living in NH [16]. The authors NH and HC settings among people with dementia, discuss that expenditures associated with hospital and factors associated and costs, in a world where the ED use may vary by residential setting, and proximity to organization of long-term-care is still a challenge [58]. death. Our results suggest that interventions aimed at pre- venting EDA and HA among people with dementia may Conclusions be cost-effective, especially in the HC setting, as for To the best of our knowledge, this is the first study that most countries the costs associated with EDA and HA evaluates internationally (across Europe) the frequency were higher in these setting. However, the results should of hospitalisation among people with dementia living in be interpreted with caution, as costs of other interven- nursing homes and home care settings, and analyses the tions that may be put in place when acute events occur associated factors and costs for each setting. such as specialized health support teams or specific care Admission to hospital is frequent among people with units for advanced dementia have not been taken into dementia, especially among those living in the commu- consideration. Differences between countries with regard nity, and seems to impose a remarkable economic to the implementation of such interventions, as well as burden. The identification and establishment of an indi- potential country differences in the characteristics of the vidualized care plan for those people with dementia with people with dementia living in each of the settings [56] polypharmacy in nursing homes, and those with invol- and potential country differences in the way how de- untary weight loss, accidental falls, polypharmacy and mentia care is provided [57], may explain the country higher caregiver burden in the home care setting, might differences seen in the costs of hospitalisation. Further- help preventing unnecessary hospital admissions and more, these results should be seen within the framework saving associated costs. Afonso-Argilés et al. BMC Geriatrics (2020) 20:453 Page 11 of 13 Supplementary information Availability of data and materials Supplementary information accompanies this paper at https://doi.org/10. The datasets used and/or analysed during the current study are available 1186/s12877-020-01835-x. from the corresponding author on reasonable request. Additional file 1: Baseline characteristics of informal caregivers. Ethics approval and consent to participate The Good Epidemiological Practice guidelines recommended by the International Epidemiological Association (IEA 2007) and the Helsinki Abbreviations declaration are followed. This study was approved by the Ethical Committee CCI: Charlson Comorbidity Index; COI: Cost-of-illness; EDA: Emergency of the Hospital Clinic, Barcelona, Spain (2010/6031); the Ethics Review Department Admission; €: Euros; EU: European Union; HA: Hospital Committee on Human Research of the University of Tartu (196/T-3) and the Admission; IEA: International Epidemiological Association; KATZ: Katz Index of Ethical Committee of the Hospital District of South-West Finland (8/2010), Independence in Activities in Daily Living; NH: Nursing Home; NPI- Finland; the Comité de Protection des Personnes Sud-Ouest et Outre-Mer, Q: Neuropsychiatric Inventory-Questionnaire; OECD: Organisation for Toulouse, France (09 202 07); the Nursing Science Ethical Committee at the Economic Co-operation and Development; OR: Odds Ratio; PPP: Purchasing University of Witten/Herdecke, Germany; the Medical Ethical Committee of Power Parities; Q1: Quartile 1; Q2: Quartile 2; RTPC: RightTimePlaceCare; the Academic Hospital Maastricht/Maastricht University, the Netherlands RUD: Resource Utilization in Dementia; SD: Standard Deviation; S- (MEC 10–5-044); the Regional Ethical Review Board in Lund, Sweden (2010/ MMSE: Standardized Mini-Mental State Examination; WHO: World Health 538); and the National Research Ethics Service, North West 5 Research Ethics Organization; ZBI: Zarit Burden Interview Committee, the United Kingdom (11/NW/0003) (Verbeek et al., 2012). Partici- pants were informed of the study purpose, and they were free to participate Acknowledgements or withdraw from the study at any time. They were asked to sign the in- We thank Robert Schmitz for his previous work analyzing transfer episodes formed consent form. among the participants of the RTPC study. We appreciate the collaboration of Georgina Ramírez Rodríguez, M.D. for her support at the cost estimations Consent for publication shown in the study. Not applicable. Group authorship The RightTimePlaceCare (RTPC) Consortium partners are as follows: Competing interests Coordinator The authors declare that they have no competing interests. University of Witten/Herdecke (DE): Gabriele Meyer PhD, RN, professor (scientific coordinator, WP 1 leader), Astrid Stephan PhD, RN, Anna Renom- Author details Guiteras PhD, Dirk Sauerland, professor (WP 4 and 6 leader), Dr. Ansgar Wüb- 1 Department of Geriatric Medicine and Palliative Care. Badalona Serveis ker PhD, Patrick Bremer. Assistencials, Barcelona, Spain. 2Universitat Autònoma de Barcelona, Consortium members Barcelona, Spain. 3Department of Nursing Science, Witten/Herdecke Maastricht University (NL): Jan P.H. Hamers PhD, RN; Basema Afram MSc, University, Witten, Germany. 4Institute of Health and Nursing Sciences, Hanneke C. Beerens PhD, RN; Michel H.C. Bleijlevens, PhD, PT; Hilde Verbeek, Medical Faculty, Martin Luther University Halle-Wittenberg, Halle (Saale), PhD; Sandra M.G. Zwakhalen, PhD, RN; Dirk Ruwaard, MD, Ton Ambergen, Germany. 5Department of Epidemiology and Evaluation. Hospital del Mar, PhD. Parc de Salut Mar, Barcelona, Spain. 6Member of the Health Services Research Lund University (SE): Ingalill Rahm Hallberg PhD, RN; Ulla Melin Emilsson on Chronic Patients Network (REDISSEC), Madrid, Spain. 7RWI – PhD; Staffan Karlsson, PhD, RN; Christina Bokberg, PhD, RN; Connie Lethin, Leibniz-Institute for Economic Research, Leibniz Science Campus Ruhr and PhD, RN. RUB, Essen, Germany. 8Department of Nursing Science and Nurse Director, University of Manchester (UK): David Challis, PhD, professor; Caroline Sutcliffe, Turku University Hospital, University of Turku, Turku, Finland. 9Department of MSc; David Jolley, PhD; Sue Tucker, MSc, RN; Ian Bowns, PhD; Brenda Roe, Health Sciences. Faculty of Medicine, Lund University, SE-221 00 Lund, PhD; Alistair Burns, PhD, professor. Sweden. 10Clinical Memory Research Unit. Department of Clinical Sciences, University of Turku (FI): Helena Leino-Kilpi, PhD, RN, professor; Jaana Kosken- Lund University, SE-221 00 Lund, Sweden. 11Department of Internal niemi, MNSc, RN, researcher; Riitta Suhonen, PhD, RN, professor; Matti Viita- Medicine, University of Tartu, Tartu, Estonia. 12Department of Geriatric nen, MD, PhD, professor; Seija Arve, PhD, RN, adjunct professor; Minna Stolt, Medicine, Gerontopole, Alzheimer Disease Research Center, Inserm UMR MNSc; Maija Hupli, PhD, RN. 1027, University Hospital of Toulouse, Toulouse, France. 13School of Health University of Tartu (EE): Kai Saks, MD, PhD, professor; Ene-Margit Tiit, PhD, Sciences, University of Manchester, Manchester, UK. 14Department of Health professor; Jelena Leibur, MD, MBA; Katrin Raamat, MA; Angelika Armolik, MA; Services Research, Care and Public Health Research Institute, Maastricht Teija Tuula Marjatta Toivari, RN. University, Maastricht, The Netherlands. 15Living Lab in Ageing and Fundació Privada Clinic per la Recerca Biomedica, Hospital Clinic of Barcelona Long-Term Care, Maastricht, The Netherlands. 16Hospital Clinic de Barcelona, (ES): Adelaida Zabalegui, PhD, RN, FEANS (WP 5 leader); Montserrat Navarro, Barcelona, Spain. 17School of Medicine, Universitat de Barcelona, Barcelona, PhD, RN; Esther Cabrera, PhD, RN (Tecnocampus Mataró); Ester Risco, PhD, Spain. 18Department of Geriatric Medicine, Parc de Salut Mar, Barcelona, RN; Carme Alvira, PhD, RN; Marta Farré, MSc, RN; Susana Miguel, MSc, RN. Spain. Gerontôpole, University of Toulouse (FR): Maria Soto, MD; Agathe Milhet; Sandrine Sourdet, MD; Sophie Gillette; Bruno Vellas, PhD. Received: 13 April 2020 Accepted: 14 October 2020 Authors’ contributions ARG, FJAA and GM contributed to the conception, design of the work, References analysis and interpretation of data of the present study. MC contributed to 1. 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