Higher prevalence of dementia but no improvement in total comfort while dying among nursing home residents with de- mentia between 2010 and 2015: Results from two retrospective epidemiological studies

Important policy developments in dementia and palliative care in nursing homes between 2010 and 2015 in Flanders, Belgium might have influenced which people die in nursing homes and how they die. We aimed to examine differences between 2010 and 2015 in the prevalence and characteristics of residents with dementia in nursing homes in Flanders, and their palliative care service use and comfort in the last week of life. We used two retrospective epidemiological studies, including 198 residents in 2010 and 183 in 2015, who died with dementia in representative samples of nursing homes in Flanders. We found a 23%-point increase in dementia prevalence (P-value<0.001), with a total of 11%-point decrease in severe to very severe cognitive impairment (P=0.04). Controlling for this difference in resident characteristics, in the last week of life, there were increases in the use of pain assessment (+20%-point; P<0.001) and assistance with eating and drinking (+10%-point; P=0.02) but no change in total comfort. The higher prevalence of dementia in nursing homes with no improvement in residents’ total comfort while dying emphasize an urgent need to better support nursing homes in improving their capacities to provide timely and high-quality palliative care services to more residents dying with dementia.

Flanders, the Dutch-speaking part of Belgium where about 60% of the population live, [3] as well as differences in their palliative care service use and comfort in the last week of life.
Between 2010 and 2015, new dementia policies in Flanders were oriented towards delaying the institutionalization of older people with dementia by enabling them to stay at home for as long as possible. [4][5][6][7][8] Several initiatives for people with dementia living in communities were also implemented regionwide, e.g. information campaigns and trainings of primary care professionals and family caregivers. [9][10][11][12] While these developments could potentially result in fewer admissions or shorter stay in nursing homes or more admissions of those with advanced conditions unmanageable at home, [13,14] representative data showing these potential changes are lacking.
Particularly three developments related to palliative care in the nursing home sector in Law that recognizes the legal right to palliative care of 'patients whose life-threatening illness no longer responds to curative treatments', [15] the Flemish government passed the Decree on Residential Care in 2009. [16] This decree officially requires Flemish nursing homes to support, sensitize and train all regular staff regarding palliative care. Second, in 2010, the Flanders' Federation of Palliative Care launched palliative care guidelines for professional caregivers in nursing homes in developing and implementing palliative care in their facility, [17,18] including the comprehensive delivery of physical, psychosocial and spiritual support. [18] Third, in 2013, the Flemish government introduced a strategy to evaluate quality of care in nursing homes by having them report on 13 quality indicators. [19] Two of these quality indicators concern palliative care ('place of death' and 'advance care planning'). These indicators are used to systematically monitor the aggregate quality of care in this sector and to identify areas where improvements can be made. Despite these policy developments for nursing homes, no epidemiological study has yet examined the use of palliative care services of residents with dementia and their comfort while dying before and after these developments. Examining this will inform policymakers in Belgium on how to further improve the quality of care at the end of life of nursing home residents with dementia. Results can also be used to inform policies in many countries, especially in Western Europe with similar shifts in health care policies. [1,2] Hence, focusing on Flanders, we sought to answer the following research questions: -Are there differences in the prevalence of dementia in nursing homes between 2010 and 2015?
-Are there differences in the socio-demographic and clinical characteristics of nursing home residents with dementia between 2010 and 2015?
-Are there differences in palliative care service use and comfort in the last week of life of nursing home residents with dementia between 2010 and 2015?

Design
We used data from two retrospective epidemiological studies in regionwide representative samples of nursing homes in Flanders, Belgium, namely the Dying Well with Dementia study focused on residents with dementia (2010) and the PACE study focused on all residents, of whom the presence of dementia was determined (2015). [20,21] Both studies used similar research methods, unless otherwise indicated.

Participating nursing homes
To obtain regionwide representative samples of nursing homes, proportional stratified random sampling methods. From a national list, the research team randomly sampled Flemish nursing homes, stratified by region (five provinces), bed capacity (up to or more than 90 beds), and ownership (public, private/non-profit, private/profit). If a nursing home refused to participate, another one was randomly selected from the same stratum until the targeted number per stratum was reached. [20,21]

Data collection and study population
The administrator/manager in each nursing home was asked to identify all residents who died in the previous three months. Because the 2010 study focused on dementia, the residents who did not have dementia were excluded immediately before data collection.
This was done by asking the administrators/managers to further identify residents who met the Katz scale criteria used by the Belgian health insurance system to allocate financial resources: "category Cdementia", i.e. being completely care dependent or needing help for bathing, dressing, eating, toileting, continence and transferring plus being disoriented in time and space OR "disorientation in time and space" (≥3 or "almost daily a problem with disorientation in time and space"). [20,21] In 2010, data were collected on residents who met at any of the Katz scale criteria, while in 2015, data were collected on all identified residents. To collect data, both studies used after-death questionnaires distributed to nursing home staff most closely involved in care, GP and nursing home administrator. Dementia was determined by asking the GP and the nursing home staff if the resident "had dementia" or "was diagnosed with dementia".
Dementia was present if the nursing home staff and/or the GP indicated it, and no dementia when both respondents indicated it; or when one indicated it, but the other did not return the questionnaire or did not answer the question. [20,21] Response rates for staff, GPs and administrators were respectively 88.4%, 52.9% and 95.0% in 2010 and 85.1%, 68.3% and 94.2% in 2015. We excluded residents for whom the nursing home staff did not return the questionnaire. Non-response analysis showed no difference in residents' characteristics between cases for whom the questionnaire was returned by nursing home staff or not. [20,22]

Measurements
Using validated instruments, the nursing home staff reported residents' cognitive and functional impairment one month before death. Cognitive Performance Scale (CPS) uses five variables from the Minimum Data Set to group residents into six hierarchical cognitive performance categories, e.g. CPS scores 5-6 indicate severe and very severe impairment. [23] Global Deterioration Scale (GDS) is divided into seven stages, of which stage 7 indicates that a resident lost all verbal abilities, was incontinent/required assistance with eating and toileting, and lost basic psychomotor skills. [24] To compare with earlier studies, [20,22] [16,26] The nursing home staff also reported whether the residents received services related to medical or nursing treatments/procedures in the last week of life, psychosocial interventions in the last month and spiritual and/or pastoral care before death.
They also assessed comfort in the last week of life using Comfort Assessment in Dying-

Data analyses
The 2010 and 2015 databases were merged by RM and two palliative care researchers.
The prevalence of dementia between 2010 and 2015 were compared using χ 2 -test.

Subsequent analyses were performed in IBM SPSS statistics version 26 (©IBM Corporation)
using generalised linear mixed model to account for clustering of data within nursing homes. We compared residents' characteristics and their palliative care service use and comfort scores between 2010 and 2015. We adjusted all analyses for resident characteristics that differed between the years. Hypothesis testing was two-sided. Statistical significance was set at P<0.05.

Prevalence of dementia
The prevalence of dementia significantly increased from 45% in 2010 (205 of 458 residents) to 68% in 2015 (199 of 291 residents) (+23%-point; P-value<0.001; Figure 1). Of the residents with dementia, we excluded 7 residents in 2010 and 16 in 2015, as the nursing home staff did not return the questionnaires, leaving 198 and 183 residents for further analyses.

Characteristics of residents with dementia
Between 2010 and 2015, residents' characteristics did not change, except for scores on the Cognitive Performance Scale. One month before death, the proportion of residents with dementia with severe to very severe cognitive impairment (CPS scores 5-6) had a total of 11%-point decrease (P=0.04; Table 1

Palliative care service use among residents with dementia
In multivariable analyses controlled for differences in CPS scores, in 2010 and 2015 respectively, a palliative care record was initiated for 62% and 72% of residents (P=0.052), of which 51% and 60% occurred within 14 days before death (P=0.28; Table 2). According to nursing home staff, 83% in 2010 and 82% in 2015 of residents received palliative care.
For 17% (2010) and 20% (2015) of these people who received palliative care, no coordinating and advisory physician, palliative care reference nurse, palliative care task group and palliative home care teams were involved (P=0.30).
In the last week of life, there were significant increases in the percentages of residents for whom pain assessment was conducted (from 63% in 2010 to 83% in 2015; P<0.001) and who received assistance with eating and drinking (from 72% in 2010 to 82% in 2015; P=0.02).
In the last month of life, the percentage of residents for whom their environment was adjusted, e.g. to promote walking around safely, increased from 10% in 2010 to 16% in 2015 (P=0.03), while 37% (2010) and 47% (2015) of residents did not receive any psychosocial intervention (P=0.22). In 2010 and 2015 respectively, shortly before death, 48% and 57% of residents received spiritual care, meaning that 52% and 43% did not receive it (P=0.06).

Discussion
Our study showed that between Retrospective data collection is a feasible method for population-based epidemiological end-of-life studies, as it limits potential bias in prospective sampling, e.g. underrepresentation of people who live longer than the follow-up period. [22] Although these are separate studies, both utilised similar study designs, aiming to reach representative samples, and all variables of interest were measured in the same way. Finally, while the measurement of palliative care services is limited to services measured in both studies, these services comprise important components of palliative care in dementia, e.g. comprehensive delivery of physical, psychosocial, or spiritual support. [29] However, this study also has limitations. Because data were collected after death, there might be some recall bias. [22] Further, only the 2010 Dying Well with Dementia study used the Katz-scale criteria to exclude residents without dementia before data collection. Nevertheless, such residents without dementia would have also been identified by the nursing home staff and/or the GPs in the PACE study, as they were involved closely in resident care. [30,31] Our study clearly showed that between 2010 and 2015, there is a substantially higher prevalence of nursing home residents with dementia with very minimal change in their clinical and socio-demographic characteristics. Over this relatively short period, almost an additional 1 in 4 residents die with dementia. Perhaps, this is because such increase in the prevalence of dementia also occurred in the home setting, as the 2016 estimates in Flanders suggest that there were 15,855 more people with dementia in 2015 than in 2010, [32] which is congruent with the current trends in dementia prevalence in other countries in Europe. [33] At the end of life, people with dementia also have complex care needs that could complicate primary care delivery and could thus become unmanageable at home. [34,35] Hence, more people with dementia living at home may have been transferred eventually to nursing homes. [13,14] Further, over the years, nursing home residents with dementia apparently remain to have almost similar clinical and demographic characteristics, which suggests that their complex and prolonged care needs at the end of life persist over the years. [34,35] We 2010, this finding suggests that these residents died with other diseases that do not result in cognitive impairment. Comorbidities, which often occur alongside old age and dementia, present additional challenges for healthcare service delivery to residents living and dying with dementia. [36] In addition, our study showed that in the last week of life of residents with dementia between 2010 and 2015, there were some encouraging improvements in their use of medical/nursing procedures. However, their total comfort in the last week of life did not change.
In particular, we found improvement in the use of pain assessment and correspondingly in the comfort level due to relief from pain and moaning which is a behavioural sign of pain; [37] and more residents received assistance with eating and drinking aiming to address intake problems that are common in advanced dementia. [35] However, the use of other medical/nursing procedures, psychosocial interventions, and spiritual care at the end-of-life seemed to lag behind. These findings underscore the persistent lack of attention given to the comprehensive care encompassing physical, psychosocial and spiritual support, which are paramount to improving residents' overall comfort at the end-of-life. [29] Promoting comfort for nursing home residents with dementia is a key policy goal of care in many countries and a palliative care approach has been widely advocated to improve comfort in this population. [29,[28][29][30][31][32][33][34][35][36][37][38][39][40][41][42] However, providing high-quality and comprehensive palliative care to and improving comfort in nursing home residents with dementia is a highly demanding and complex work for care professionals. [43] Our identified increase in the prevalence of nursing home residents with dementia and the minimal change in the complexity of their care needs at the end-of-life highlight the increasing complexity of the challenges faced by the nursing home sector. This evolution is likely to continue in the future, as the prevalence of dementia in Flanders has been projected to almost double by 2060. [32] Such evolution might also be comparable with evolution in other countries that implemented similar dementia and palliative care policies and initiatives and have similarly increasing dementia prevalence.[1,2,33] Further, we found that despite some encouraging improvements in the use of medical/nursing procedures, e.g. pain assessment, there remains a lack of improvement in their total comfort in the last week of life. In order to maintain the high quality of care in nursing homes and to improve comfort at the end-of-life of a growing number of residents with dementia, [32,44] there is an urgent need for continued and stronger public health investments and a more comprehensive palliative care approach in this sector. [29] The timely and consistent implementation of a comprehensive palliative care in dementia approach requires a strong national and regional policy commitment and the incorporation of this approach in the attitudes and skills of nursing home staff. [45][46] Because there is still no known effective palliative care program for nursing home residents with dementia, [47] future research should continue developing and evaluating palliative care programs that could improve comfort at the end-of-life in this population. Strategies on how to develop, implement and evaluate complex palliative care interventions in nursing homes and the factors that need to be addressed in doing so have been published. [48][49][50]

Conclusions
Our study suggests that between 2010 and 2015, there was a higher prevalence of residents with dementia in nursing homes in Flanders, Belgium who persistently have complex care needs at the end-of-life. Further, despite encouraging improvements in their use of some medical/nursing procedures, there remains a lack of improvement in their total comfort in the last week of life. These findings highlight the increasing complexity of challenges faced by the nursing home sector, which underscores an urgent need to better support nursing homes in improving their capacities to provide timely, high-quality and comprehensive palliative care to a growing number of nursing home residents living and dying with dementia.
Author Contributions: RM, TS and LVDB made equal substantial contribution to conceptualising the design of the work. TS and NVDN collected the data. RM analysed the data and drafted and revised the manuscript critically for important intellectual content. All authors made substantial contribution to interpreting the data and revising the manuscript critically; have given the final approval of the manuscript to be submitted for publication; and have participated sufficiently in the work to take responsibility for appropriate portions of the content.

Informed Consent Statement:
The respondents participated voluntarily, returning a questionnaire was taken as consent to participation, and their anonymity was guaranteed by using unique anonymous identifier.

Data Availability Statement:
The data that support the findings of this study are available from the corresponding author upon reasonable request.