Introduction
A person with dementia often exhibits various non-cognitive symptoms at some time during the progress of the disorder (Lövheim et al., Reference Lövheim, Sandman, Karlsson and Gustafson2008b). Behavioral and psychological symptoms, such as verbal or physical aggression, aberrant motor behaviors, psychotic symptoms, anxiety, depressive symptoms and apathy are common (Zuidema et al., Reference Zuidema, Derksen, Verhey and Koopmans2007; Lövheim et al., Reference Lövheim, Sandman, Karlsson and Gustafson2008b). The symptoms often interfere negatively with the quality of life of the person with dementia, and are a major strain on relatives and care staff (Black and Almeida, Reference Black and Almeida2004; Shin et al., Reference Shin, Carter, Masterman, Fairbanks and Cummings2005). Some symptoms, aggression in particular, are common reasons for institutionalization (Coehlo et al., Reference Coehlo, Hooker and Bowman2007; Burns et al., Reference Burns, O'Brien and Ames2010). Furthermore, those who exhibit these symptoms are at increased risk of being prescribed antipsychotic drugs (Lövheim et al., Reference Lövheim, Sandman, Kallin, Karlsson and Gustafson2006), a treatment that has been increasingly questioned in recent years based on reports of increased mortality, adverse events and an only moderate effect at best (Schneider et al., Reference Schneider, Dagerman and Insel2005; Reference Schneider2006; Sink et al., Reference Sink, Holden and Yaffe2005; Rochon et al., Reference Rochon2008).
In the county of Västerbotten in northern Sweden, periodic investigations (every six or seven years) have been undertaken since 1975 of every person living in institutional geriatric care (Adolfsson et al., Reference Adolfsson, Gottfries, Nyström and Winblad1981; Sandman et al., Reference Sandman, Adolfsson, Norberg, Nyström and Winblad1988; Lövheim et al., Reference Lövheim, Sandman, Kallin, Karlsson and Gustafson2008a; Reference Lövheim, Sandman, Karlsson and Gustafson2009). We have previously reported changes in pharmacological drug treatment and changes in behavioral and psychological symptoms between 1982 and 2000 based on these data (Lövheim et al., Reference Lövheim, Sandman, Kallin, Karlsson and Gustafson2008a; Reference Lövheim, Sandman, Karlsson and Gustafson2009). Between 1982 and 2000 there was a manifold increase in the use of antidepressants (from 6.3% in 1982 to 39.9% in 2000), and the use of anxiolytics, hypnotics and sedatives also increased, whereas the use of antipsychotics decreased slightly (Lövheim et al., Reference Lövheim, Sandman, Kallin, Karlsson and Gustafson2008a). Between the years 1982 and 2000, there was a decline in depressive symptoms, in regressive symptoms and in passive resistance to care, and an increase in the general level of activity in this population (Lövheim et al., Reference Lövheim, Sandman, Kallin, Karlsson and Gustafson2008a; Reference Lövheim, Sandman, Karlsson and Gustafson2009).
The data collection was performed once again in 2007. Concerning psychotropic drug use, we assumed we would see a sharp increase in the use of anti-dementia drugs compared to 2000, when only 5.1% of people with cognitive impairment were prescribed these drugs (Lövheim et al., Reference Lövheim, Sandman, Kallin, Karlsson and Gustafson2008a).
The aim of the present study was to analyze time trends in the prevalence of behavioral and psychological symptoms and psychotropic drug treatments among people with cognitive impairment living in institutional care, by analyzing two large, comparable, samples from 2000 and 2007 respectively.
Methods
Material
The analysis is based on two cross-sectional questionnaire surveys performed in 2000 and 2007 respectively in the county of Västerbotten in northern Sweden. The two surveys used the same methodology and the same questionnaire, and included all those living in institutional care for old people. In 2000, the population in the area was 256,000, of whom 44,000 (17.2%) were older than 65 years, while in 2007 the population had increased to approximately 258,000, of whom 47,000 (18.2%) were aged 65 years or older (Statistics Sweden, 2010).
The number of people living in institutions providing geriatric care was 4357 in 2000 and 3578 in 2007, corresponding to 9.9% and 7.6% of the 65+ populations respectively. Institutional geriatric care comprised nursing homes, residential care units, group dwellings for people with dementia, short-stay or rehabilitation units and somatic geriatric and psychogeriatric hospital wards. The response rate in 2000 and 2007 was 87.3% and 85.8% respectively, rating 3804 and 3070 individuals respectively. People younger than 65 years or for whom no age was registered were excluded from the analysis, leaving 3669 people from 2000 and 2914 from 2007. From these, those who had a cognitive score that indicated cognitive impairment (Gottfries' cognitive scale score of less than 24 points – see below) were selected. In this way, 2035 persons were selected from the 2000 survey and 2019 from the 2007 survey, giving a total of 4054 people.
The Regional Ethics Review Board in Umeå approved the study (registration number 00-170 and 07-028M).
Procedures
The survey form was sent to all care settings in the county which provided institutional geriatric care. The member of staff who knew the resident best was asked to complete the individual assessment scales based on observations of the resident's state during the preceding week. Written instructions about how to carry out the assessments were included and the staff were informed that members of the research team could be contacted by telephone to answer questions or provide additional guidance.
Assessments
The Multi-Dimensional Dementia Assessment Scale (MDDAS) (Sandman et al., Reference Sandman, Adolfsson, Norberg, Nyström and Winblad1988) was used to make the assessments. The scale includes assessments of functioning in activities of daily living (ADL), cognition and behavioral and psychological symptoms and a registration of current drug prescriptions. The MDDAS has good inter- and intra-rater reliability (Sandman et al., Reference Sandman, Adolfsson, Norberg, Nyström and Winblad1988).
A registered nurse filled in the data concerning prescribed medication, from the resident's prescription record. Drugs data were grouped and coded by members of the research team and every person was assigned a dichotomous value for each group. Information about doses and pro re nata (“as needed”) medication was not coded, thus only figures for ongoing medication are given.
Cognitive impairment was measured using a scale developed by Gottfries and Gottfries (Adolfsson et al., Reference Adolfsson, Gottfries, Nyström and Winblad1981). This scale consists of 27 items measuring a person's level of cognitive functioning. A score of less than 24 is considered to indicate cognitive impairment, which correlates with a sensitivity of 90% and a specificity of 91% (Adolfsson et al., Reference Adolfsson, Gottfries, Nyström and Winblad1981) to the usual 24/30 Mini-Mental State Examination (MMSE) (Folstein et al., Reference Folstein, Folstein and McHugh1975) cut-off. The cognitive scale was further divided into mild cognitive impairment (score 16–23), moderate cognitive impairment (score 8–15) and severe cognitive impairment (score 0–7). An activities of daily living (ADL) score was calculated based on assessment of dependence in dressing, hygiene, eating and bladder and bowel control. All ADL categories score 1–5, except that for bladder control, which scores 0–4. Hence the ADL score varies from 4 to 24, where a higher score indicates greater ADL independence.
The MDDAS contains 25 items concerning behavioral symptoms and 14 items concerning psychological symptoms. Each item is rated on a three-point scale, indicating whether the symptom or behavior occurs at least once a day, at least once a week or not at all during the one-week observation period. The variables were dichotomized between at least once a week and less than once a week, and prevalence numbers, therefore, indicate one-week prevalences. The items were grouped according to a rotated factor analysis as presented previously (Lövheim et al., Reference Lövheim, Sandman, Karlsson and Gustafson2008b). Each item is presented, in Table 3, under the factor to which it loaded the most.
Statistics
For the background variables, dichotomous variables were analyzed using the Pearson χ2-test and continuous variables using the independent sample t-test. The one-week prevalence of the 39 behavioral and psychological symptoms and the use of different classes of psychotropic drugs in 2000 and 2007 respectively, were compared. Multivariate logistic regression models were constructed to control for demographic changes between the two samples. The models had the behavior, symptom or drug class as dependent variable and included sex, age, level of cognitive impairment (divided into mild, moderate and severe cognitive impairment: Gottfries' cognitive scores 16–23, 8–15 and 0–7 respectively), level of ADL dependency (divided into low, medium or high dependency: ADL scores 4–10, 11–17 and 18–24 respectively) and year of investigation (2000 or 2007) as independent variables. Statistical calculations were performed using the Statistical Package for Social Science (SPSS) 13.0 for Mac.
Results
The basic characteristics of the samples for 2000 and 2007 are presented in Table 1. There was an increase in mean age between the samples, and in 2007 there was a significantly better mean cognitive score and function in ADL.
Basic characteristics of the two studied samples of people with cognitive impairment
ADL = activities of daily living, SD = standard deviation
The use of psychotropic drugs is presented in Table 2. There was an increase in the number of people using antidepressants from 43.2 to 49.1 % (p < 0.001) between 2000 and 2007. Furthermore, in 2007, 167 people were treated with a combination of two different antidepressants, compared to 28 people in 2000. The most common antidepressant combination was an SSRI with a presynaptic α2-antagonist (mianserin or mirtazapine), which 148 people received in 2007. The use of antipsychotic drugs and of anxiolytics, hypnotics and sedatives had not changed significantly. However, among the antipsychotics there was a significant decrease in the use of conventional antipsychotics (p < 0.001) and a significant increase in the use of atypical antipsychotics (p < 0.001). In 2007, 66.9% of those taking antipsychotics were on atypicals, compared to 51.0% in 2000.
Psychotropic drug use in 2000 and 2007
a Corrected for sex, age, ADL performance (high, medium or low dependency) and level of cognitive impairment (mild, moderate or severe cognitive impairment).
SSRI = selective serotonin reuptake inhibitors; SNRI = serotonin–norepinephrine reuptake inhibitor; MAO = monoamine oxidase.
In 2007, 18.0% of the patients took anti-dementia drugs, compared to 5.1% in 2000 (p < 0.001). Cholinesterase inhibitors were used by 308 people (15.3%), and memantine by 62 people (3.1%) in 2007. Seven people took cholinesterase inhibitors and memantine concomitantly. Among people with mild, moderate and severe cognitive impairment (Gottfries' cognitive score 16–23, 8–15 and 0–7), 20.6%, 23.0% and 10.1% respectively took anti-dementia drugs.
Fifteen out of 39 behavioral or psychological symptoms had become less common and no symptoms had become more common, from 2000 to 2007, controlled for age, sex, ADL function and cognitive level (see Table 3 and also Table S1 published as supplementary material online attached to the electronic version of this paper at http://www.journals.cambridge.org/ipg). Within the cluster of aggressive behaviors, four out of six behaviors had declined in prevalence: “hits patients/staff”, “aggressive threats to patients/staff”, “resists being dressed and undressed” and “spits out drugs”. Among restless behaviors also four out of six behaviors had become less common: “mixes up food”, “eats soil from potted plants, cigarette ends, etc.”, “eats others’ food” and “rolls up tablecloths”.
Behavioral and psychological symptoms (BPSD) in 2000 and 2007
Non-significant items are presented in italicized font. Please see also Table S1 published as supplementary material online attached to the electronic version of this paper at http://www.journals.cambridge.org/ipg, where the number of people assessed for each item, the number of affirmative answers, odds ratio, 95% confidence interval of odds ratio and p-value are presented for all 39 items of the MDDAS scale (Multi-Dimensional Dementia Assessment scale).
a Prevalences correspond to people having exhibited the behavior or symptom at least once during the one-week observation period.
b Corrected for sex, age, ADL performance (high, medium or low dependency) and level of cognitive impairment (mild, moderate or severe cognitive impairment).
Within the passiveness cluster, the number of people who did not cooperate decreased, and among regressive behaviors two out of three behaviors declined in prevalence: “unruly in bed, throws bedclothes on the floor” and “smears feces on clothes, furniture, etc.”. Furthermore, there was a decrease in the number of people who were sad, who took things from other patients’ boxes and closets, who hid things and who constantly sought the attention of the staff. Among hallucinatory symptoms none of the symptoms changed significantly in prevalence.
Discussion
From 2000 to 2007, 15 out of 39 behavioral and psychological symptoms showed a decline in prevalence and no behaviors or symptoms became more common when changes in population composition (age, sex, cognitive level and ADL level) were controlled for. The magnitude of the decline in many behaviors and symptoms was probably large enough to represent a clinically important change and, in particular, the decrease in the number of people exhibiting aggressive behaviors might be very important. These behaviors are often stressful for care staff and relatives, which is reflected in an increased risk of institutionalization and medication with antipsychotic drugs (Black and Almeida, Reference Black and Almeida2004; Lövheim et al., Reference Lövheim, Sandman, Kallin, Karlsson and Gustafson2006; Coehlo et al., Reference Coehlo, Hooker and Bowman2007).
The overall use of antipsychotics remained unchanged between the samples; however, as previously reported by many authors (Hosia-Randell and Pitkälä, Reference Hosia-Randell and Pitkälä2005; Rapoport et al., Reference Rapoport, Mamdani, Shulman, Herrmann and Rochon2005; Selbaek et al., 2006), a continuing shift towards atypical antipsychotics was seen. Furthermore, the use of antidepressants rose to almost 50% in the 2007 sample, a high prescription rate compared to other studies (Hosia-Randell and Pitkälä, Reference Hosia-Randell and Pitkälä2005; Selbaek et al., 2006; Zuidema et al., Reference Zuidema, Derksen, Verhey and Koopmans2007). In Sweden, antidepressant drugs are now considered a first-line treatment for depression, anxiety and aggression in people with dementia, but even though these conditions are common among institutionalized old people with dementia (Selbaek et al., 2006; Zuidema et al., Reference Zuidema, Derksen, Verhey and Koopmans2007; Lövheim et al., Reference Lövheim, Sandman, Karlsson and Gustafson2008b), the high prescription rate demands attention. Antidepressant drugs are not free of side effects, and possible benefits of treatment have to be weighed against these risks.
Also, despite the high prevalence of antidepressant drug use, many people still exhibited depressive symptoms, and it could be argued that more focus should now be placed on improving the treatment of depression among those who are already receiving antidepressant treatment. Remission rates can possibly be improved by active follow-up and proper adjustment of the treatment, and by thorough assessment and treatment of the underlying causes of depression. This seems to be needed in this population. Furthermore, there are indications of poorer treatment results among people with moderate cognitive impairment (Lövheim et al., Reference Lövheim, Bergdahl, Sandman, Karlsson and Gustafson2010), and much work remains to be done to establish proper strategies for the treatment of depression in dementia, including routines for investigating underlying causes and pharmacological and non-pharmacological treatment interventions.
The cross-sectional data, as well as the lack of information concerning psychiatric diagnosis and information about follow-up, makes it impossible to conclude in any single case if the treatment was, or was not, appropriate. However, the large proportion of people being currently treated with antidepressants might, in itself, indicate an over-use of these drugs.
The use of anti-dementia drugs increased from 5.1% to 18.0% between 2000 and 2007. Among people with mild to moderate cognitive impairment, the prevalence was over 20%, and among people with severe cognitive impairment it was approximately 10%. Cholinesterase inhibitors are approved for use in people with mild to moderate Alzheimer's disease (AD), which is the most common dementia disorder and accounts for about half of the total number of dementia cases (Lobo et al., Reference Lobo2000). In this study, the exact dementia diagnosis was not known, but the use of anti-dementia drugs was probably more prevalent among people with AD than other dementias. Furthermore, anti-dementia drugs do not have positive effects in everyone and some suffer intolerable side effects from them. The 18.0% one-week prevalence of anti-dementia drug use among old people with cognitive impairment living in institutional geriatric care thus probably reflects a large proportion of people with AD who have tried these drugs at some stage in the course of their disease.
This paper presents a comparison between two cross-sectional surveys. The cross-sectional nature of the data obviously makes it impossible to draw any conclusions about causality. The increase in the use of anti-dementia drugs seems to be the most important change in pharmacological drug treatment between the two years but whether this change has also affected the prevalence of behavioral and psychological symptoms cannot be established from this study. There were small improvements in mean cognitive and functional (ADL) abilities between the samples. However, as these demographic changes were controlled for in the regression analyses of psychotropic drug use and behavioral and psychological symptoms, they could not explain the reduction in some behaviors and symptoms.
Between 2000 and 2007, no major changes were made in the organization of geriatric care, and the general level of education among caring staff was about the same. Nevertheless, seven years separate these two samples and a number of factors might possibly have impacted on the prevalences. For example, new clinical guidelines and the recent warnings about atypical antipsychotics might have affected the prescription pattern. Staff assessment of the behaviors and symptoms might also differ between the years. These limitations must be taken into account when interpreting the findings.
Another limitation to the present study was that many analyses were made with a 0.05 level of significance, which increases the risk of type 1 errors. Full adjustment would require a p-value of <0.002 for the main analyses of behaviors and symptoms. Applying this limit reduces the number of significant differences to four, two of them from the cluster of aggressive behaviors. However, the conclusions of this paper are not based on single significant differences but the overall pattern of changes, and we assume the risk of type 1 errors does not invalidate the conclusions. Nonetheless, when interpreting single items, this must clearly be taken into account.
Conclusion
The prevalence of many behavioral symptoms declined from 2000 to 2007, and among these changes, the decline in aggressive behaviors probably has the greatest clinical impact.
Conflict of interest
None.
Description of authors' roles
All authors were involved in the acquisition of data. H. Lövheim and Y. Gustafson analyzed and interpreted the data and prepared the paper. P.O. Sandman and S. Karlsson were responsible for the study concept and design. All authors reviewed the drafts, added their comments and approved the final version of the paper.
Acknowledgments
This study was supported financially by grants from Umeå University Foundation for Medical Research, the Swedish Brain Power Foundation, the Swedish Foundation for Healthcare Sciences and Allergy Research, the Field Research Centre for the Elderly in Västerbotten, the Swedish Research Council, the Swedish Dementia Association (Stiftelsen Demensfonden) and Erik and Anne-Marie Detlof's Foundation, Umeå University.
