RESEARCH ARTICLE
The prevalence and burden of behavioural and psychological symptoms of dementia in rural Tanzania S.-M. Paddick1,2, A. Kisoli3, A. Longdon4, C. Dotchin1,5, W. K. Gray1, P. Chaote3, A. Teodorczuk2,6 and R. Walker1,7 1
Northumbria Healthcare NHS Foundation Trust, North Tyneside General Hospital, North Shields, Tyne and Wear, North Shields, UK Institute of Neuroscience, Newcastle University, Newcastle Upon Tyne, UK 3 Hai District Hospital, Boma’ngombe, Tanzania 4 South Devon Healthcare Trust, Torquay, UK 5 Institute for Ageing, Newcastle University, Newcastle Upon Tyne, UK 6 Northumberland, Tyne and Wear NHS Trust, Newcastle Upon Tyne, UK 7 Institute of Health and Society, Newcastle University, Newcastle Upon Tyne, UK Correspondence to: Dr Stella-Maria Paddick, E-mail: [email protected] 2
Behavioural and psychological symptoms (BPS) in dementia are common in high-income countries, but there are few data from sub-Saharan Africa. Our aim was to estimate the prevalence and pattern of BPS and associated caregiver distress in rural Tanzania. Methods: Prevalent cases of dementia (aged 70 and over) were identified during a community-based door-to-door study in six rural villages in Tanzania. Following cognitive screening, a stratified sample (over-sampled for people with dementia) of cases underwent a detailed clinical assessment including the brief 12 item neuropsychiatric inventory (NPI-Q), which assesses BPS and associated caregiver distress over the preceding 30 days. Results: Of 78 people with dementia, at least one current BPS was reported by 69 (88.4%), with 40 (51.3%) reporting 3 or more symptoms. In 172 people with no cognitive impairment, 110 (64.0%) reported at least one symptom and 48 (27.9%) reported 3 or more. In dementia cases, the most frequent symptoms reported were anxiety (47.4%), agitation/aggression (38.5%), night-time behavioural disturbance (34.6%), irritability (33.3%) and depression (33.3%). Conclusion: The frequency of BPS in dementia in this rural Tanzanian population is high and comparable to that reported in prevalence studies from high income countries. Symptoms were also common, although to a lesser degree, amongst cognitively intact subjects. BPS are likely to have a significant impact on quality of life for elderly persons and their carers in low-income settings. Low-cost interventions, such as community-based therapy and education, are needed. Copyright # 2014 John Wiley & Sons, Ltd.
Objectives:
Key words: dementia; Africa; psychological symptoms; behavioural symptoms; neuropsychiatric inventory History: Received 04 March 2014; Accepted 04 September 2014; Published online 28 October 2014 in Wiley Online Library (wileyonlinelibrary.com) DOI: 10.1002/gps.4218
Introduction Mental and behavioural disorders are increasingly recognised as major causes of disability, particularly in low- and middle-income countries (LMICs) (Collins et al., 2011). As populations age, the number of people with dementia is likely to rise and is predicted to rise Copyright # 2014 John Wiley & Sons, Ltd.
faster in LMICs than in high-income countries (HICs) (Prince et al., 2013a; Prince et al., 2013b). Behavioural and psychological symptoms (BPS) represent a major component of disease burden in people with dementia (Ikeda et al., 2004; Lyketsos et al., 2002; Okura et al., 2010). Although not included in core diagnostic criteria for dementia (American
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Psychiatric Association, 1994; World Health Organization, 1993), they are now recognised as being an integral part of the disease process and include agitation, anxiety, irritability, appetite and sleep disturbance, delusions and hallucinations (Finkel et al., 1996). In HICs, community-based studies have reported a prevalence of BPS of between 58% and 75% in dementia and 43% in cognitive impairment in the US (Lyketsos et al., 2002; Okura et al., 2010) and over 88% in dementia in Japan (Ikeda et al., 2004). The most common symptoms reported were apathy in 36–56%, agitation/aggression in 30–41% and depression in 32% (Ikeda et al., 2004; Lyketsos et al., 2002; Okura et al., 2010). Cultural expectations of elderly people, differing pressures on caregivers and differing epidemiology and clinical presentation have been suggested as reasons for different prevalence and presentation of symptoms between LMICs and HICs (Eker and Ertan, 2000; Finkel et al., 1996; Homma et al., 2000; Mangone et al., 2000). A review of 55 studies of psychosis in Alzheimer’s disease (AD) found African–American origin increased the risk of experiencing psychosis in AD (Ropacki and Jeste, 2005). In sub-Saharan Africa (SSA), neurological and psychiatric symptoms are often poorly understood and at times felt to be caused by witchcraft or curses (Mushi et al., 2014). However, few data on the prevalence and presentation of BPS in SSA exist. One multicentre study assessed 555 dementia patients across 17 developing countries (including 20 cases from Nigeria as the only African cases) found that BPS were reported by 70.9% of participants overall, with case level psychiatric syndromes in 49.5% (Ferri et al., 2004). The only other data from SSA were also collected in Nigeria and suggested that BPS were at least as common as reported in HICs (Amoo et al., 2011; Baiyewu et al., 2003; Baiyewu et al., 2012; Hendrie et al., 2000). Details of studies from SSA are presented in Table 1. In SSA, trained mental health workers are scarce (Saxena et al., 2007), and recent surveys have highlighted a serious shortage of trained neurologists and geriatricians (Bower and Zenebe, 2005; Dotchin et al., 2013). BPS are recognised to be associated with reduced quality of life, increased caregiver burden and increased functional impairment, independent of cognitive function (Ballard et al., 2008; Okura et al., 2010; Prince et al., 2012), but to date there are few data on the impact of BPS on caregiver burden in SSA. Characterisation of the prevalence and pattern of these symptoms in SSA is therefore crucial in determining the size of the treatment gap and need for service and resource planning. Copyright # 2014 John Wiley & Sons, Ltd.
Our study aimed to assess the prevalence and pattern of BPS and associated caregiver burden in a communitybased rural Tanzanian population. Methods Ethical considerations
This study was approved by the National Institute of Medical Research, Dar-es-Salaam, Tanzania and by the Newcastle and North Tyneside Joint Ethics Committee in the UK. Signed informed consent was obtained from each participant. We obtained a thumbprint for those that could not read and write. The purpose and implications of the study were verbally explained. Where patients were unable to give valid consent due to lack of capacity, written assent was obtained from a close relative. Setting and participants
This study was conducted in the rural Hai district of Northern Tanzania. Part of the Hai district is a demographic surveillance site (DSS) where regular population censuses are conducted. The most recent census was completed in May 2009. The study data were collected between April and September 2010 as part of a two-phase community-based door-to-door prevalence study of dementia. Our methods have been fully described previously and only a brief summary will be presented here (Longdon et al., 2013). We aimed to interview and assess all those aged 70 years and over living in each of six villages, selected by a random number generator, from the 52 villages within the DSS, giving a study cohort of 1198 people. Dementia screening and assessment
Phase I screening for dementia was carried out using the Community Screening Instrument for Dementia (CSI-D) (Hall et al., 1993) administered by trained local enumerators. The CSI-D ranks individuals into ‘good performance’, ‘intermediate performance’ and ‘poor performance’ categories. In phase II, we clinically assessed a sample of those screened in phase I, stratified to over-sample those who performed poorly on the CSI-D (Prince et al., 2003). We aimed to assess all those with ‘poor performance’, 50% of those with ‘intermediate performance’ and 5% of with ‘good performance’. Clinical assessments were carried out by two UK research doctors with an interest in dementia (S-M.P. and A.L.) accompanied by a local study nurse fluent in both Int J Geriatr Psychiatry 2015; 30: 815–823
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Table 1 Previous studies of behavioural and psychiatric symptoms of dementia in Africa Author, Year
Country/setting
Hendrie (Hendrie et al., 2000)
Nigeria, community
Baiyewu (Baiyewu et al., 2003)
Sample size
Inclusion criteria
Tools used
Findings
51 (39 AD) compared to 66 (51 AD) African Americans in Indianapolis
Known dementia on clinical criteria
Clinical interview
Nigeria, community
40
DSM III-R/ICD-10 dementia
NPI-Q, MMSE Blessed scale
Ferri (Ferri et al., 2004)
17 low and middle income countries
555 (over 17 countries) 20 from Africa
DSM-IV dementia
Baiyewu (Baiyewu et al., 2012)
Nigeria, community
34 cognitively normal, 53 MCI or cognitive impairment no dementia and 21 cognitively normal
DSM-IV dementia
GMS-AGECAT algorithm, open questioning of relatives. NPI-Q
Depression 8.2%, delusions 2.4% hallucinations 0%. Personality exaggeration 22%, mood disturbance 25%, irritability 18%, embarrassing behaviour 24%, stubbornness 23%, less concern 26% and any personality change 45.1%. Most symptoms were more common in the Indianapolis cohort; only irritability, stubbornness and delusions reached significance. Delusions 17.5%, Hallucinations 12.5%, Agitation 32.5%, Depression 20%, Anxiety 20.0% Elation 10.0%, Apathy 25% Disinhibition 10%, Irritability 7.5%, Aberrant motor behaviour 27.5%, Nighttime behaviour 17.5% and Appetite change 42.5%. 70.9% reported any BPSD. 49.5% had a case level psychiatric syndrome excluding dementia. Any symptom 79.4%, Delusions 23.5%, Hallucinations 17.6%, Agitation/aggression 29.4%, Depression/ dysphoria 44.1%, Anxiety 14.7%, Elation/euphoria 2.9%, Apathy/indifference 38.2%, Disinhibition 29.4%, Irritability/lability 32.4%, Aberrant motor behaviour 17.6%, Night time behaviour 29.4% and Appetite/eating change 32.4%.
English and Swahili (A.K.). Participants were assessed in their own home with their carer or an appropriate informant (who was usually a close relative) present. Dementia diagnoses were based on DSM-IV criteria (American Psychiatric Association, 1994), and MCI was defined according to the consensus criteria (Winblad et al., 2004). In cases of diagnostic uncertainty, case histories were reviewed by a UK-based old age psychiatrist blinded to the original diagnosis (A.T.). Assessment of behavioural and psychiatric symptoms
BPS were assessed using the brief 12-item Neuropsychiatric Inventory (NPI-Q) (Cummings et al., 1994) Copyright # 2014 John Wiley & Sons, Ltd.
which asks caregivers whether a specific symptom has been present in the last 30 days and, if it has, to rate its severity and the associated distress caused. Severity is rated as either mild (score 1), moderate (score 2) or severe (score 3). Distress is rated from minimal (score 1) to extreme (score 5). The NPI-Q has been used to assess BPS in a number of countries, including by the 10/66 research group in 21 low- and middle-income countries (Ferri et al., 2004). It has also been validated in Nigeria (Amoo et al., 2011; Baiyewu et al., 2003; Baiyewu et al., 2012). The nurse carrying out the interviews had been extensively trained in use of this tool, and a UK-based doctor was present during the interviews to clarify any points that were unclear. Int J Geriatr Psychiatry 2015; 30: 815–823
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Other assessments
Demographic data, including age, education, occupation and marital status, were collected from participants and their carers. For the purposes of this study, education was dichotomised into ‘no formal schooling’ and ‘some formal schooling’. The 10-item Barthel index (Mahoney and Barthel, 1965) was used to assess functional ability. Total Barthel index score ranges from 0 (poorest function) to 20 (no functional impairment). The 22-item Zarit Burden Interview (ZBI) (Zarit et al., 1986) was used to assess carer burden. ZBI score ranges from 0 (no burden) to 88 (highest burden). Respondents were first asked if they felt that they provided additional care for their relative, and those who did, completed the ZBI. A number of individuals felt that they did not perform a role as a ‘carer’ and that any assistance they provided was a normal intergenerational expectation. These informants did not complete the ZBI. The method of collection of these data has been published previously (Dotchin et al., 2014). Statistical analyses
Data were analysed using standard statistical software, PASW-18 for windows (PASW, Chicago, IL, USA). All
data were non-normally distributed; therefore, nonparametric descriptive statistics and significance tests were used. Mann–Whitney U tests and chi-square tests were used as appropriate. Logistic regression modelling was used to adjust for the effects of age, gender and education level when comparing NPI-Q scores between groups. Linear regression was used to adjust for the effects of age, gender, education and physical function (Barthel index score) to assess the influence of NPI-Q symptom load on ZBI score. Co-linearity diagnostics and residuals analysis were used to assess robustness. Two-tailed tests were used throughout and significance indicated at 5%. Results From the stratified sample of 296 people assessed clinically in phase II of the study, 78 had dementia, 46 had MCI and 172 had no cognitive impairment and acted as controls. Demographic data for participants are shown in Table 2. Those with dementia (U = 4336.0, z = 4.485, p < 0.001) and those with MCI (U = 2832.0, z = 2.963, p = 0.003) were significantly older than controls. There was no significant difference in gender distribution between controls and those with dementia (χ 2 (1) = 1.697, p = 0.193) or between controls and
Table 2 Characteristics of participants Dementia (n = 78) Patients Median age in years (IQR) Number of females Number with no formal education** Carer or informant Median age in years (IQR) Number of females Number with no formal education Relationship to patient
Employment status
Co-residence with participant Care needs
MCI (n = 46)
Controls (n = 172)
85 (78.75 to 90.25) 56 (71.8%) 49 of 75 (65.3%)
82 (76 to 88.5) 36 (78.3%) 24 of 44 (54.5%)
78 (73 to 84) 109 (63.4%) 94 of 164 (57.3%)
45 (37 to 57) 66 (84.6%) 13 (16.7%)
43 (34.5 to 57) 39 (84.8%) 5 (10.9%)
47 (36 to 66) 111 (64.5%) 26 (15.1%)
9 spouse, 22 son/daughter, 30 son/daughter-in-law, 3 sibling, 10 other relative, 1 friend and 3 paid carer 39 full-time employment, 5 part-time employment, 23 full-time housewife/ husband, 3 student, 2 unemployed and 6 retired 71 (91.0%)
4 spouse, 16 son/daughter, 20 son/daughter-in-law, 4 other relative and 1 paid carer
41 (89.1%)
41 spouse, 50 son/daughter, 35 son/daughter-in-law, 4 sibling, 28 other relative, 1 friend and 11 paid carer 114 full-time employment, 6 parttime employment, 27 full-time housewife/husband, 3 student, 3 unemployed and 19 retired 127 (73.8%)
30 (38.5%) requires care much of the time, 12 (15.4%) requires care some of the time and 36 (46.2%) does not require care
6 (13.0%) requires care much of the time, 8 (17.4%) requires care some of the time and 32 (69.6%) does not require care
9 (5.2%) requires care much of the time, 9 (5.2%) requires care some of the time and 154 (89.5%) does not require care
26 full-time employment, 1 part-time employment, 13 full-time housewife/ husband, 1 student and 5 retired
IQR = interquartile range. **Based on 283 responses, for 13 participants no education data was available.
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those with MCI (χ 2 (1) = 3.612, p = 0.057). Likewise, the proportion having at least some primary education compared with those who had never attended formal education was not significantly different between controls and dementia cases (χ 2 (1) = 1.376, p = 0.241) or between the control and MCI groups (χ 2 (1) = 0.109, p = 0.742). Overall, educational attainment in this population was strikingly low, with the majority (59.0%) never having attended school. Demographic data for carers/informants are also presented in Table 2. Much of the care burden was met by younger family members, including grandchildren. Only 3 people with dementia had a formal paid carer. Although the median age of carers/informants was slightly higher in the no cognitive impairment group, they were significantly more likely to be male (χ 2 (2) = 14.902, p = 0.001) and to be in paid employment (χ 2 (2) = 6.666, p = 0.036), compared to those with MCI and dementia. Finally, the care requirements of those with dementia was greatest, with 53.8% reported to have care needs, compared to 30.4% with MCI and 10.5% of those with no cognitive impairment. Behavioural and psychiatric symptoms
NPI-Q data were available for all patients and are presented in Table 3. Of 78 people with dementia, at least one current BPS was reported by 69 (88.4%), with 40 (51.3%) reporting 3 or more symptoms. In 172 controls, 110 (64.0%) reported at least one symptom and 48 (27.9%) reported 3 or more. The most common BPS in dementia were anxiety, agitation/aggression, night-time behavioural disturbance, depression and irritability. The total number of symptoms, severity scores and distress scores were greater in dementia than in MCI, and lowest in controls.
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After adjusting for the effect of age, gender and education by logistic regression, there was a significant difference in the number of symptoms reported between the dementia and control group (OR = 1.22, 95%CI 1.09 to 1.37, p = 0.001), with more symptoms reported in the dementia group. The dementia group also had significantly more symptoms reported than the MCI group (OR = 1.21, 95%CI 1.02 to 1.42, p = 0.027). However, there was no difference in the number of symptoms reported between the MCI and control groups (OR = 1.05, 95%CI 0.90 to 1.21, p = 0.562). Likewise, the total symptom severity score when summed across all domains was significantly higher in the dementia group than the control group (OR = 1.07, 95%CI 1.03 to 1.12, p = 0.002) and higher in the dementia group than the MCI group (OR = 1.07, 95%CI 1.00 to 1.14, p = 0.040). There was no difference between the MCI and control group (OR = 1.02, 95%CI 0.96 to 1.08, p = 0.567). The total distress score was significant higher in the dementia group than the control group (OR = 1.05, 95%CI 1.01 to 1.09, p = 0.009), but not significantly different when comparing the dementia group and the MCI group (OR = 1.06, 95%CI 0.99 to 1.12, p = 0.059), nor when comparing the MCI and control groups (OR = 1.01, 95% CI 0.96 to 1.06, p = 0.728). Depression was reported in 93 (31.4%) participants overall, with prevalence varying little across the groups. Furthermore, BPS were relatively frequent in the normal cognition group, with anxiety and irritability being the next most common symptoms after depression. Influence of dementia sub-types on symptoms
Of the 78 dementia cases, 38 were Alzheimer’s disease (AD), 32 were vascular dementia (VAD), 3 were
Table 3 Neuropsychiatric inventory scores Symptom present in the last 30 days
Dementia (n = 78)
MCI (n = 46)
Controls (n = 172)
Delusions Hallucinations Agitation/aggression Depression Anxiety Elation/euphoria Apathy Disinhibition Irritability Motor disturbance Night-time behaviour Appetite disturbance Median number of BPS present (IQR) Median symptom severity score (IQR) Median symptom distress score (IQR)
15 (19.2%) 23 (29.5%) 30 (38.5%) 26 (33.3%) 37 (47.4%) 2 (2.6%) 22 (28.2%) 13 (16.7%) 26 (33.3%) 21 (26.9%) 27 (35.1%) 19 (24.4%) 3 (1 to 5) 6 (2.75 to 11) 5.5 (2 to 13)
5 (10.9%) 3 (6.5%) 10 (21.7%) 15 (32.6%) 17 (37.0%) 1 (2.2%) 3 (6.5%) 7 (15.2%) 11 (23.9%) 7 (15.2%) 13 (28.3%) 9 (19.6%) 1.5 (0 to 4) 3 (0 to 8.25) 4 (0 to 9)
20 (11.6%) 23 (13.4%) 27 (15.7%) 52 (30.2%) 39 (22.7%) 6 (3.5%) 16 (9.3%) 21 (12.2%) 40 (23.3%) 15 (8.7%) 32 (18.6%) 31 (18.0%) 1 (0 to 3) 2 (0 to 6) 2 (0 to 6)
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Parkinson’s disease dementia and 5 were other forms of dementia (Paddick et al., 2014). BPS for AD and VAD cases are presented in Table 4. When comparing AD and VAD some differences in symptom pattern were evident. Anxiety was the most common symptom in AD, followed by depression, irritability and agitation/aggression. In VAD the most common symptom was agitation/aggression, then anxiety and night-time sleep disturbance. However, there were no significant differences between dementia subtypes either in total number of symptoms, severity of symptoms or distress from symptoms.
Care giver burden
The ZBI was completed by carers for 45 people (57.7%) with dementia, 23 people (50.0%) with MCI and 97 (56.4%) of the control group. All other informants said that they did not feel that they were providing additional care over and above that considered normal in Hai. It is likely that if the ZBI had been completed for these carers, that the score would have been zero, indicating no burden. Comparing carers/informants who completed the ZBI and those who did not, there were no significant differences in carer age (median 45 for both groups, U = 9827.0, z = 0.653, p = 0.514,) or gender (77.0% female and 67.9% female respectively, χ 2 (1) = 2.059, p = 0.151). Those carers who completed the ZBI were less likely to live with the participant (76.4%) than those who did not complete the ZBI (86.3%), χ 2 (1) = 6.810, p = 0.009. This is likely to reflect the additional burden in providing care outwith their normal routine therefore likely to be in excess of the normal intergenerational expectation of caring for an elderly person in their home.
From the control group 86 (88.7%) scored zero, whilst in the MCI group 12 (52.2%) scored zero. In the dementia group 12 (26.7%) scored zero, and the median score was 14 (IQR 0 to 24.5). After adjusting for the effects of age, gender, education and Barthel index score, the total number of NPI-Q symptoms was still a significant predictor of carer burden score in those who completed the ZBI (β = 2.002 95% CI 0.713 to 3.292, p = 0.003).
Discussion This is one of very few studies of BPS in dementia to be carried out in SSA and the first outside Nigeria. BPS appear to be associated with a considerable distress and caregiver burden, even in those without dementia. One reason for this might be the fact that we did not exclude individuals found to have other psychiatric diagnoses from the control sample. Although significantly more common and more severe in dementia, such symptoms are unlikely to be exclusively part of the dementia syndrome. Indeed, reported depressive symptoms were equally common across all groups. We found no significant difference in BPS between AD and VAD subtypes, therefore the relatively high proportion of VAD cases in our study is not likely to have impacted greatly on our findings. A greater total number of BPS was a significant independent predictor of increased carer burden, even after adjusting for the effects of age, gender, education and physical function. Although carer burden may be most obvious in those with physical disability, the contribution of BPS to carer burden should not be underestimated (Dotchin et al., 2014). One interesting finding from our study was the apparent openness with which carers took part in the clinical
Table 4 Data split into those with Alzheimer’s disease and those with vascular dementia Symptom present in last 30 days
Alzheimer’s disease (n = 38)
Vascular dementia (n = 32)
Significance
10 (26.3%) 8 (21.1%) 12 (31.6%) 14 (36.8%) 19 (50.0%) 8 (25.0%) 10 (26.3%) 8 (21.1%) 14 (36.8%) 10 (26.3%) 11 (28.9%) 9 (23.7%) 2 (1.5 to 4) 5 (3 to 10.5) 5 (2.5 to 12)
4 (12.5%) 11 (34.4%) 15 (46.9%) 9 (28.1%) 14 (43.8%) 2 (6.3%) 8 (25.0%) 4 (12.5%) 10 (31.3%) 9 (28.1%) 12 (37.5%) 6 (18.8%) 2.5 (1 to 5.5) 6 (1.2 to 9.75) 6 (1 to 13)
– – – – – – – – – – – – U = 569.5, z = 0.274, p = 0.784 U = 559.0, z = 0.398, p = 0.690 U = 561.0, z = 0.148, p = 0.882
Delusions Hallucinations Agitation/Aggression Depression Anxiety Elation/Euphoria Apathy Disinhibition Irritability Motor disturbance Night-time behaviour Appetite disturbance Median number of BPS present (IQR) Median symptom severity score (IQR) Median symptom distress score (IQR)
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interview and the fact that such a high proportion of carers lived with their relative and saw them daily, so were likely to be able to comment on BPS observed with a high degree of accuracy. This openness was notable, given that such symptoms are often associated with stigma. It is also notable that in the no cognitive impairment group carers/informants were significantly more likely to be male and in full-time paid employment. In this setting, this may be an indication that as elderly relatives develop cognitive problems, and the burden of care increases, younger, female family members take on more of the role as carer. In a society where formal retirement from work due to age is rare, this may allow older male family member to continue to work. Comparison to studies in high-income countries
The prevalence and pattern of BPS within our study sample were similar to that reported in communitybased studies from HICs (Ikeda et al., 2004; Lyketsos et al., 2002; Okura et al., 2010). Most studies of BPS of dementia have been undertaken in clinic or hospitalbased samples and are therefore likely to be biased given that the patient or their family have sought help. The community-based Cache county study in the US found that 75% of dementia patients, and 43% of those with MCI, identified at least one neuropsychiatric symptom (Lyketsos et al., 2002). Apathy was the most common symptom in dementia (36%) and depression the most common in MCI (20%). A door-to-door study in Spain also found apathy to be the most common symptom in dementia (Fernandez Martinez et al., 2008). The US Aging Demographics And Memory Study (ADAMS) included 856 community-based adults aged 71 and older and found that 58% of dementia cases, and 43% of those with cognitive impairment, but no dementia had BPS using the NPI-Q (Okura et al., 2010). In severe dementia, the most common symptom was apathy, present in 42%, with 41% experiencing agitation. In mild dementia and cognitive impairment, the most common symptom was depression, present in 25% and 30%, respectively. We found apathy to be relatively less common, particularly for those with MCI and in controls. Although, this may be due to difficulty in describing apathy in this population, different intergenerational expectations in Hai, with elderly people expected to take less of a role in day-to-day activities, may also be partly responsible.
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et al., 2012; Guerra Hernández et al., 2011; RodriguezAgudelo et al., 2011; Tatsch et al., 2006). However, BPS appear to be much less common in China, where in a community-based sample of 1271 dementia patients only 50.1% reported at least one BPS (Haibo et al., 2013). The first study of BPS of dementia in SSA reported a significantly lower prevalence of BPS in Yoruba Nigerians than African–American when analysing symptoms identified during clinical interview (Hendrie et al., 2000). The reason for this is not clear, and it is difficult to generalise as a validated scale was not used. There may have been cultural differences in willingness or openness to complain of potentially embarrassing behaviour to interviewers, particularly since stigma surrounding mental illness amongst the Yoruba has been noted (Baiyewu et al., 2003). It may be that the presence of the local enumerators at all interviews in our study helped to overcome fears of disclosing embarrassing symptoms. The prevalence of mental illness is thought to be higher in immigrant populations and minority groups, such as African Americans, and this may also have influenced the findings (Bhugra and Jones, 2001). A more recent Nigerian study (Baiyewu et al., 2012) found anxiety and night-time behavioural disturbance were less common and appetite change and apathy more common than in our cohort. Further investigation into the differences in BPS between these East and West African populations is merited. One further Nigerian study of patients referred to a neuropsychiatric service, which used a retrospective case note review to complete the NPI-Q on patients with a diagnosis of dementia, found a high symptom load in dementia (Amoo et al., 2011). The researchers did not question carers directly so the severity of symptoms and distress caused cannot be assessed. Limitations
In assessing caregiver burden, a large proportion of respondents did not complete the ZBI due to feeling that they did not provide additional care to their relative over and above what might be culturally expected. Those who did complete it were those who felt that they were providing some additional care, and therefore the sample is likely to be biased in favour of frailer or more dependent individuals. Additionally, we only asked about the presence of symptoms in the preceding month, so the true burden of symptoms may have been higher than that presented.
Comparison to studies in low- and middle-income countries
Conclusions
The pattern and prevalence of symptoms are similar to that reported in South and Central America (Acosta-Castillo
BPS of dementia are common in this population, with levels comparable to those seen in HICs. It is sometimes
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suggested that living within extended family groups in less developed societies leads to lower rates of caregiver burden. Our study suggests that this may not be the case, and that carers frequently encountered distressing symptoms. Moreover, since none of our cohort had a previous diagnosis of dementia, neither they, nor their carers had received an explanation for the presence of these symptoms. BPS may represent an important target for future interventions to reduce caregiver strain and improve quality of life. Conflict of interest None declared
Key points • Behavioural and psychological symptoms (BPS) of dementia are common in high-income countries, but published data on BPS from sub-Saharan Africa are scarce. • We found BPS to be highly prevalent in older adults with dementia in rural Tanzania. • BPS are likely to have a significant impact upon quality of life for older adults with dementia and their carers. • Low-cost interventions and educational programmes for BPS are needed to improve quality of life.
Acknowledgements We wish to acknowledge the help of all health care workers, village enumerators and medical supervisors who assisted in identification of cases, clinical assessment and completion of the census. We are especially grateful to patients, carers and family members for taking part in the study. Funding: This study was part funded by a British Geriatric Society SpR start up grant and an Academy of Medical Sciences (UK) Clinical Lecturer start up grant. Role of the funding source: The sponsors of this study had no role in designing the study; in the collection, analysis, and interpretation of data; in the writing of the report; or in the decision to submit the paper for publication. Author contributions Design/conception—Richard Walker, Catherine Dotchin, Stella-Maria Paddick and Anna Longdon. Literature Copyright # 2014 John Wiley & Sons, Ltd.
search—Richard Walker, Catherine Dotchin and Stella-Maria Paddick. Data collection—Stella-Maria Paddick, Anna Longdon and Aloyce Kisoli. Data analysis—William K. Gray, Catherine Dotchin, StellaMaria Paddick and Andrew Teodorczuk. Interpretation of results—Richard Walker, Catherine Dotchin, William Gray, Stella-Maria Paddick and Andrew Teodorczuk. Writing of paper—Richard Walker, Catherine Dotchin, William Gray, Stella-Maria Paddick, Anna Longdon, Andrew Teodorczuk and Aloyce Kisoli References Acosta-Castillo GI, Luisa Sosa A, Orozco R, Borges G. 2012. Neuropsychiatric symptoms in older adults with dementia and their relationship to disease severity. Rev Invest Clin 64: 354–363. American Psychiatric Association. 1994. Diagnostic and statistical manual of mental disorders, 4th edn. American Medical Association: Washington DC. Amoo G, Akinyemi RO, Onofa LU, et al. 2011. Profile of clinically-diagnosed dementias in a neuropsychiatric practice in Abeokuta, South-Western Nigeria. Afr J Psychiatry (Johannesbg) 14: 377–382. Baiyewu O, Smith-Gamble V, Akinbiyi A, et al. 2003. Behavioral and caregiver reaction of dementia as measured by the neuropsychiatric inventory in Nigerian community residents. Int Psychogeriatr 15: 399–409. Baiyewu O, Unverzagt FW, Ogunniyi A, et al. 2012. Behavioral symptoms in community-dwelling elderly Nigerians with dementia, mild cognitive impairment, and normal cognition. Int J Geriatr Psychiatry 27: 931–939. Ballard C, Day S, Sharp S, Wing G, Sorensen S. 2008. Neuropsychiatric symptoms in dementia: importance and treatment considerations. Int Rev Psychiatry 20: 396–404. Bhugra D, Jones P. 2001. Migration and mental illness. Advances in Psychiatric Treatment 7: 216–222. Bower JH, Zenebe G. 2005. Neurologic services in the nations of Africa. Neurology 64: 412–415. Collins PY, Patel V, Joestl SS, et al. 2011. Grand challenges in global mental health. Nature 475: 27–30. Cummings JL, Mega M, Gray K, et al. 1994. The Neuropsychiatric Inventory: comprehensive assessment of psychopathology in dementia. Neurology 44: 2308–2314. Dotchin CL, Akinyemi RO, Gray WK, Walker RW. 2013. Geriatric medicine: services and training in Africa. Age Ageing 42: 124–128. Dotchin CL, Paddick SM, Longdon AR, et al. 2014 A comparison of caregiver burden in older persons and persons with Parkinson’s disease or dementia in sub-Saharan Africa. Int Psychogeriatr 26: 687–692. Eker E, Ertan T. 2000. Behavioral and psychological symptoms of dementia in Eastern and Southeastern Europe and the Middle-East. Int Psychogeriatr 12: 409–413. Fernandez Martinez M, Castro Flores J, Perez de las Heras S, et al. 2008. Prevalence of neuropsychiatric symptoms in elderly patients with dementia in Mungialde County (Basque Country, Spain). Dement Geriatr Cogn Disord 25: 103–108. Ferri CP, Ames D, Prince M. 2004. Behavioral and psychological symptoms of dementia in developing countries. Int Psychogeriatr 16: 441–459. Finkel SI, Costa e Silva J, Cohen G, Miller S, Sartorius N. 1996. Behavioral and psychological signs and symptoms of dementia: a consensus statement on current knowledge and implications for research and treatment. Int Psychogeriatr 8 (Suppl 3): 497–500. Guerra Hernández MA, Llibre Guerra JJ, García Arjona L. 2011. Síntomas psicológicos y conductuales en adultos mayores con diagnóstico de demencia. Panorama Cuba y Salud 6: 20–25. Haibo X, Shifu X, Pin NT, et al. 2013 Prevalence and severity of behavioral and psychological symptoms of dementia (BPSD) in community dwelling Chinese: findings from the Shanghai three districts study. Aging Ment Health 17: 748–752. Hall KS, Hendrie HC, Brittain HM, et al. 1993. The Development of a Dementia Screening Interview in 2 Distinct Languages. Int J Methods Psychiatr Res 3: 1–28. Hendrie H, Gao S, Baiyewu O. 2000. Comparison of symptoms of behavioral disturbances in Yoruba and African-American individuals with dementia. Int Psychogeriatr 12: 403–408. Homma A, Woo JI, Chiu HFK, Hoek KE. 2000. Behavioral and psychological symptoms of dementia in Japan and the Asia Pacific region. Int Psychogeriatr 12: 419–422. Ikeda M, Fukuhara R, Shigenobu K, et al. 2004. Dementia associated mental and behavioural disturbances in elderly people in the community: findings from the first Nakayama study. J Neurol Neurosurg Psychiatry 75: 146–148.
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823 Prince M, Bryce R, Albanese E, et al. 2013a. The global prevalence of dementia: a systematic review and metaanalysis. Alzheimers Dement 9: 63–75 e62. Prince M, Guerchet M, Prina M. 2013b. Policy Brief for Heads of Government: The Global Impact of Dementia 2013–2050. Alzheimer Disease International: London, UK Rodriguez-Agudelo Y, Solis-Vivanco R, Acosta-Castillo I, et al. 2011. Neuropsychiatric symptoms in older adults with and without dementia in urban and rural regions. Results of the 10/66 Dementia Research Group in Mexico. Rev Invest Clin 63: 382–390. Ropacki SA, Jeste DV. 2005. Epidemiology of and risk factors for psychosis of Alzheimer’s disease: a review of 55 studies published from 1990 to 2003. Am J Psychiatry 162: 2022–2030. Saxena S, Thornicroft G, Knapp M, Whiteford H. 2007. Resources for mental health: scarcity, inequity, and inefficiency. Lancet 370: 878–889. Tatsch MF, Bottino CM, Azevedo D, et al. 2006. Neuropsychiatric symptoms in Alzheimer disease and cognitively impaired, nondemented elderly from a community-based sample in Brazil: prevalence and relationship with dementia severity. Am J Geriatr Psychiatry 14: 438–445. Winblad B, Palmer K, Kivipelto M, et al. 2004. Mild cognitive impairment--beyond controversies, towards a consensus: report of the International Working Group on Mild Cognitive Impairment. J Intern Med 256: 240–246. World Health Organization. 1993. International statistical classification of disease and related problems (10th edn). World Health Organization: Geneva, Switzerland. Zarit SH, Todd PA, Zarit JM. 1986. Subjective burden of husbands and wives as caregivers: a longitudinal study. Gerontologist 26: 260–266.
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The prevalence and burden of behavioural and psychological symptoms of dementia in rural Tanzania S.-M. Paddick1,2, A. Kisoli3, A. Longdon4, C. Dotchin1,5, W. K. Gray1, P. Chaote3, A. Teodorczuk2,6 and R. Walker1,7 1
Northumbria Healthcare NHS Foundation Trust, North Tyneside General Hospital, North Shields, Tyne and Wear, North Shields, UK Institute of Neuroscience, Newcastle University, Newcastle Upon Tyne, UK 3 Hai District Hospital, Boma’ngombe, Tanzania 4 South Devon Healthcare Trust, Torquay, UK 5 Institute for Ageing, Newcastle University, Newcastle Upon Tyne, UK 6 Northumberland, Tyne and Wear NHS Trust, Newcastle Upon Tyne, UK 7 Institute of Health and Society, Newcastle University, Newcastle Upon Tyne, UK Correspondence to: Dr Stella-Maria Paddick, E-mail: [email protected] 2
Behavioural and psychological symptoms (BPS) in dementia are common in high-income countries, but there are few data from sub-Saharan Africa. Our aim was to estimate the prevalence and pattern of BPS and associated caregiver distress in rural Tanzania. Methods: Prevalent cases of dementia (aged 70 and over) were identified during a community-based door-to-door study in six rural villages in Tanzania. Following cognitive screening, a stratified sample (over-sampled for people with dementia) of cases underwent a detailed clinical assessment including the brief 12 item neuropsychiatric inventory (NPI-Q), which assesses BPS and associated caregiver distress over the preceding 30 days. Results: Of 78 people with dementia, at least one current BPS was reported by 69 (88.4%), with 40 (51.3%) reporting 3 or more symptoms. In 172 people with no cognitive impairment, 110 (64.0%) reported at least one symptom and 48 (27.9%) reported 3 or more. In dementia cases, the most frequent symptoms reported were anxiety (47.4%), agitation/aggression (38.5%), night-time behavioural disturbance (34.6%), irritability (33.3%) and depression (33.3%). Conclusion: The frequency of BPS in dementia in this rural Tanzanian population is high and comparable to that reported in prevalence studies from high income countries. Symptoms were also common, although to a lesser degree, amongst cognitively intact subjects. BPS are likely to have a significant impact on quality of life for elderly persons and their carers in low-income settings. Low-cost interventions, such as community-based therapy and education, are needed. Copyright # 2014 John Wiley & Sons, Ltd.
Objectives:
Key words: dementia; Africa; psychological symptoms; behavioural symptoms; neuropsychiatric inventory History: Received 04 March 2014; Accepted 04 September 2014; Published online 28 October 2014 in Wiley Online Library (wileyonlinelibrary.com) DOI: 10.1002/gps.4218
Introduction Mental and behavioural disorders are increasingly recognised as major causes of disability, particularly in low- and middle-income countries (LMICs) (Collins et al., 2011). As populations age, the number of people with dementia is likely to rise and is predicted to rise Copyright # 2014 John Wiley & Sons, Ltd.
faster in LMICs than in high-income countries (HICs) (Prince et al., 2013a; Prince et al., 2013b). Behavioural and psychological symptoms (BPS) represent a major component of disease burden in people with dementia (Ikeda et al., 2004; Lyketsos et al., 2002; Okura et al., 2010). Although not included in core diagnostic criteria for dementia (American
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Psychiatric Association, 1994; World Health Organization, 1993), they are now recognised as being an integral part of the disease process and include agitation, anxiety, irritability, appetite and sleep disturbance, delusions and hallucinations (Finkel et al., 1996). In HICs, community-based studies have reported a prevalence of BPS of between 58% and 75% in dementia and 43% in cognitive impairment in the US (Lyketsos et al., 2002; Okura et al., 2010) and over 88% in dementia in Japan (Ikeda et al., 2004). The most common symptoms reported were apathy in 36–56%, agitation/aggression in 30–41% and depression in 32% (Ikeda et al., 2004; Lyketsos et al., 2002; Okura et al., 2010). Cultural expectations of elderly people, differing pressures on caregivers and differing epidemiology and clinical presentation have been suggested as reasons for different prevalence and presentation of symptoms between LMICs and HICs (Eker and Ertan, 2000; Finkel et al., 1996; Homma et al., 2000; Mangone et al., 2000). A review of 55 studies of psychosis in Alzheimer’s disease (AD) found African–American origin increased the risk of experiencing psychosis in AD (Ropacki and Jeste, 2005). In sub-Saharan Africa (SSA), neurological and psychiatric symptoms are often poorly understood and at times felt to be caused by witchcraft or curses (Mushi et al., 2014). However, few data on the prevalence and presentation of BPS in SSA exist. One multicentre study assessed 555 dementia patients across 17 developing countries (including 20 cases from Nigeria as the only African cases) found that BPS were reported by 70.9% of participants overall, with case level psychiatric syndromes in 49.5% (Ferri et al., 2004). The only other data from SSA were also collected in Nigeria and suggested that BPS were at least as common as reported in HICs (Amoo et al., 2011; Baiyewu et al., 2003; Baiyewu et al., 2012; Hendrie et al., 2000). Details of studies from SSA are presented in Table 1. In SSA, trained mental health workers are scarce (Saxena et al., 2007), and recent surveys have highlighted a serious shortage of trained neurologists and geriatricians (Bower and Zenebe, 2005; Dotchin et al., 2013). BPS are recognised to be associated with reduced quality of life, increased caregiver burden and increased functional impairment, independent of cognitive function (Ballard et al., 2008; Okura et al., 2010; Prince et al., 2012), but to date there are few data on the impact of BPS on caregiver burden in SSA. Characterisation of the prevalence and pattern of these symptoms in SSA is therefore crucial in determining the size of the treatment gap and need for service and resource planning. Copyright # 2014 John Wiley & Sons, Ltd.
Our study aimed to assess the prevalence and pattern of BPS and associated caregiver burden in a communitybased rural Tanzanian population. Methods Ethical considerations
This study was approved by the National Institute of Medical Research, Dar-es-Salaam, Tanzania and by the Newcastle and North Tyneside Joint Ethics Committee in the UK. Signed informed consent was obtained from each participant. We obtained a thumbprint for those that could not read and write. The purpose and implications of the study were verbally explained. Where patients were unable to give valid consent due to lack of capacity, written assent was obtained from a close relative. Setting and participants
This study was conducted in the rural Hai district of Northern Tanzania. Part of the Hai district is a demographic surveillance site (DSS) where regular population censuses are conducted. The most recent census was completed in May 2009. The study data were collected between April and September 2010 as part of a two-phase community-based door-to-door prevalence study of dementia. Our methods have been fully described previously and only a brief summary will be presented here (Longdon et al., 2013). We aimed to interview and assess all those aged 70 years and over living in each of six villages, selected by a random number generator, from the 52 villages within the DSS, giving a study cohort of 1198 people. Dementia screening and assessment
Phase I screening for dementia was carried out using the Community Screening Instrument for Dementia (CSI-D) (Hall et al., 1993) administered by trained local enumerators. The CSI-D ranks individuals into ‘good performance’, ‘intermediate performance’ and ‘poor performance’ categories. In phase II, we clinically assessed a sample of those screened in phase I, stratified to over-sample those who performed poorly on the CSI-D (Prince et al., 2003). We aimed to assess all those with ‘poor performance’, 50% of those with ‘intermediate performance’ and 5% of with ‘good performance’. Clinical assessments were carried out by two UK research doctors with an interest in dementia (S-M.P. and A.L.) accompanied by a local study nurse fluent in both Int J Geriatr Psychiatry 2015; 30: 815–823
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Table 1 Previous studies of behavioural and psychiatric symptoms of dementia in Africa Author, Year
Country/setting
Hendrie (Hendrie et al., 2000)
Nigeria, community
Baiyewu (Baiyewu et al., 2003)
Sample size
Inclusion criteria
Tools used
Findings
51 (39 AD) compared to 66 (51 AD) African Americans in Indianapolis
Known dementia on clinical criteria
Clinical interview
Nigeria, community
40
DSM III-R/ICD-10 dementia
NPI-Q, MMSE Blessed scale
Ferri (Ferri et al., 2004)
17 low and middle income countries
555 (over 17 countries) 20 from Africa
DSM-IV dementia
Baiyewu (Baiyewu et al., 2012)
Nigeria, community
34 cognitively normal, 53 MCI or cognitive impairment no dementia and 21 cognitively normal
DSM-IV dementia
GMS-AGECAT algorithm, open questioning of relatives. NPI-Q
Depression 8.2%, delusions 2.4% hallucinations 0%. Personality exaggeration 22%, mood disturbance 25%, irritability 18%, embarrassing behaviour 24%, stubbornness 23%, less concern 26% and any personality change 45.1%. Most symptoms were more common in the Indianapolis cohort; only irritability, stubbornness and delusions reached significance. Delusions 17.5%, Hallucinations 12.5%, Agitation 32.5%, Depression 20%, Anxiety 20.0% Elation 10.0%, Apathy 25% Disinhibition 10%, Irritability 7.5%, Aberrant motor behaviour 27.5%, Nighttime behaviour 17.5% and Appetite change 42.5%. 70.9% reported any BPSD. 49.5% had a case level psychiatric syndrome excluding dementia. Any symptom 79.4%, Delusions 23.5%, Hallucinations 17.6%, Agitation/aggression 29.4%, Depression/ dysphoria 44.1%, Anxiety 14.7%, Elation/euphoria 2.9%, Apathy/indifference 38.2%, Disinhibition 29.4%, Irritability/lability 32.4%, Aberrant motor behaviour 17.6%, Night time behaviour 29.4% and Appetite/eating change 32.4%.
English and Swahili (A.K.). Participants were assessed in their own home with their carer or an appropriate informant (who was usually a close relative) present. Dementia diagnoses were based on DSM-IV criteria (American Psychiatric Association, 1994), and MCI was defined according to the consensus criteria (Winblad et al., 2004). In cases of diagnostic uncertainty, case histories were reviewed by a UK-based old age psychiatrist blinded to the original diagnosis (A.T.). Assessment of behavioural and psychiatric symptoms
BPS were assessed using the brief 12-item Neuropsychiatric Inventory (NPI-Q) (Cummings et al., 1994) Copyright # 2014 John Wiley & Sons, Ltd.
which asks caregivers whether a specific symptom has been present in the last 30 days and, if it has, to rate its severity and the associated distress caused. Severity is rated as either mild (score 1), moderate (score 2) or severe (score 3). Distress is rated from minimal (score 1) to extreme (score 5). The NPI-Q has been used to assess BPS in a number of countries, including by the 10/66 research group in 21 low- and middle-income countries (Ferri et al., 2004). It has also been validated in Nigeria (Amoo et al., 2011; Baiyewu et al., 2003; Baiyewu et al., 2012). The nurse carrying out the interviews had been extensively trained in use of this tool, and a UK-based doctor was present during the interviews to clarify any points that were unclear. Int J Geriatr Psychiatry 2015; 30: 815–823
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Other assessments
Demographic data, including age, education, occupation and marital status, were collected from participants and their carers. For the purposes of this study, education was dichotomised into ‘no formal schooling’ and ‘some formal schooling’. The 10-item Barthel index (Mahoney and Barthel, 1965) was used to assess functional ability. Total Barthel index score ranges from 0 (poorest function) to 20 (no functional impairment). The 22-item Zarit Burden Interview (ZBI) (Zarit et al., 1986) was used to assess carer burden. ZBI score ranges from 0 (no burden) to 88 (highest burden). Respondents were first asked if they felt that they provided additional care for their relative, and those who did, completed the ZBI. A number of individuals felt that they did not perform a role as a ‘carer’ and that any assistance they provided was a normal intergenerational expectation. These informants did not complete the ZBI. The method of collection of these data has been published previously (Dotchin et al., 2014). Statistical analyses
Data were analysed using standard statistical software, PASW-18 for windows (PASW, Chicago, IL, USA). All
data were non-normally distributed; therefore, nonparametric descriptive statistics and significance tests were used. Mann–Whitney U tests and chi-square tests were used as appropriate. Logistic regression modelling was used to adjust for the effects of age, gender and education level when comparing NPI-Q scores between groups. Linear regression was used to adjust for the effects of age, gender, education and physical function (Barthel index score) to assess the influence of NPI-Q symptom load on ZBI score. Co-linearity diagnostics and residuals analysis were used to assess robustness. Two-tailed tests were used throughout and significance indicated at 5%. Results From the stratified sample of 296 people assessed clinically in phase II of the study, 78 had dementia, 46 had MCI and 172 had no cognitive impairment and acted as controls. Demographic data for participants are shown in Table 2. Those with dementia (U = 4336.0, z = 4.485, p < 0.001) and those with MCI (U = 2832.0, z = 2.963, p = 0.003) were significantly older than controls. There was no significant difference in gender distribution between controls and those with dementia (χ 2 (1) = 1.697, p = 0.193) or between controls and
Table 2 Characteristics of participants Dementia (n = 78) Patients Median age in years (IQR) Number of females Number with no formal education** Carer or informant Median age in years (IQR) Number of females Number with no formal education Relationship to patient
Employment status
Co-residence with participant Care needs
MCI (n = 46)
Controls (n = 172)
85 (78.75 to 90.25) 56 (71.8%) 49 of 75 (65.3%)
82 (76 to 88.5) 36 (78.3%) 24 of 44 (54.5%)
78 (73 to 84) 109 (63.4%) 94 of 164 (57.3%)
45 (37 to 57) 66 (84.6%) 13 (16.7%)
43 (34.5 to 57) 39 (84.8%) 5 (10.9%)
47 (36 to 66) 111 (64.5%) 26 (15.1%)
9 spouse, 22 son/daughter, 30 son/daughter-in-law, 3 sibling, 10 other relative, 1 friend and 3 paid carer 39 full-time employment, 5 part-time employment, 23 full-time housewife/ husband, 3 student, 2 unemployed and 6 retired 71 (91.0%)
4 spouse, 16 son/daughter, 20 son/daughter-in-law, 4 other relative and 1 paid carer
41 (89.1%)
41 spouse, 50 son/daughter, 35 son/daughter-in-law, 4 sibling, 28 other relative, 1 friend and 11 paid carer 114 full-time employment, 6 parttime employment, 27 full-time housewife/husband, 3 student, 3 unemployed and 19 retired 127 (73.8%)
30 (38.5%) requires care much of the time, 12 (15.4%) requires care some of the time and 36 (46.2%) does not require care
6 (13.0%) requires care much of the time, 8 (17.4%) requires care some of the time and 32 (69.6%) does not require care
9 (5.2%) requires care much of the time, 9 (5.2%) requires care some of the time and 154 (89.5%) does not require care
26 full-time employment, 1 part-time employment, 13 full-time housewife/ husband, 1 student and 5 retired
IQR = interquartile range. **Based on 283 responses, for 13 participants no education data was available.
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those with MCI (χ 2 (1) = 3.612, p = 0.057). Likewise, the proportion having at least some primary education compared with those who had never attended formal education was not significantly different between controls and dementia cases (χ 2 (1) = 1.376, p = 0.241) or between the control and MCI groups (χ 2 (1) = 0.109, p = 0.742). Overall, educational attainment in this population was strikingly low, with the majority (59.0%) never having attended school. Demographic data for carers/informants are also presented in Table 2. Much of the care burden was met by younger family members, including grandchildren. Only 3 people with dementia had a formal paid carer. Although the median age of carers/informants was slightly higher in the no cognitive impairment group, they were significantly more likely to be male (χ 2 (2) = 14.902, p = 0.001) and to be in paid employment (χ 2 (2) = 6.666, p = 0.036), compared to those with MCI and dementia. Finally, the care requirements of those with dementia was greatest, with 53.8% reported to have care needs, compared to 30.4% with MCI and 10.5% of those with no cognitive impairment. Behavioural and psychiatric symptoms
NPI-Q data were available for all patients and are presented in Table 3. Of 78 people with dementia, at least one current BPS was reported by 69 (88.4%), with 40 (51.3%) reporting 3 or more symptoms. In 172 controls, 110 (64.0%) reported at least one symptom and 48 (27.9%) reported 3 or more. The most common BPS in dementia were anxiety, agitation/aggression, night-time behavioural disturbance, depression and irritability. The total number of symptoms, severity scores and distress scores were greater in dementia than in MCI, and lowest in controls.
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After adjusting for the effect of age, gender and education by logistic regression, there was a significant difference in the number of symptoms reported between the dementia and control group (OR = 1.22, 95%CI 1.09 to 1.37, p = 0.001), with more symptoms reported in the dementia group. The dementia group also had significantly more symptoms reported than the MCI group (OR = 1.21, 95%CI 1.02 to 1.42, p = 0.027). However, there was no difference in the number of symptoms reported between the MCI and control groups (OR = 1.05, 95%CI 0.90 to 1.21, p = 0.562). Likewise, the total symptom severity score when summed across all domains was significantly higher in the dementia group than the control group (OR = 1.07, 95%CI 1.03 to 1.12, p = 0.002) and higher in the dementia group than the MCI group (OR = 1.07, 95%CI 1.00 to 1.14, p = 0.040). There was no difference between the MCI and control group (OR = 1.02, 95%CI 0.96 to 1.08, p = 0.567). The total distress score was significant higher in the dementia group than the control group (OR = 1.05, 95%CI 1.01 to 1.09, p = 0.009), but not significantly different when comparing the dementia group and the MCI group (OR = 1.06, 95%CI 0.99 to 1.12, p = 0.059), nor when comparing the MCI and control groups (OR = 1.01, 95% CI 0.96 to 1.06, p = 0.728). Depression was reported in 93 (31.4%) participants overall, with prevalence varying little across the groups. Furthermore, BPS were relatively frequent in the normal cognition group, with anxiety and irritability being the next most common symptoms after depression. Influence of dementia sub-types on symptoms
Of the 78 dementia cases, 38 were Alzheimer’s disease (AD), 32 were vascular dementia (VAD), 3 were
Table 3 Neuropsychiatric inventory scores Symptom present in the last 30 days
Dementia (n = 78)
MCI (n = 46)
Controls (n = 172)
Delusions Hallucinations Agitation/aggression Depression Anxiety Elation/euphoria Apathy Disinhibition Irritability Motor disturbance Night-time behaviour Appetite disturbance Median number of BPS present (IQR) Median symptom severity score (IQR) Median symptom distress score (IQR)
15 (19.2%) 23 (29.5%) 30 (38.5%) 26 (33.3%) 37 (47.4%) 2 (2.6%) 22 (28.2%) 13 (16.7%) 26 (33.3%) 21 (26.9%) 27 (35.1%) 19 (24.4%) 3 (1 to 5) 6 (2.75 to 11) 5.5 (2 to 13)
5 (10.9%) 3 (6.5%) 10 (21.7%) 15 (32.6%) 17 (37.0%) 1 (2.2%) 3 (6.5%) 7 (15.2%) 11 (23.9%) 7 (15.2%) 13 (28.3%) 9 (19.6%) 1.5 (0 to 4) 3 (0 to 8.25) 4 (0 to 9)
20 (11.6%) 23 (13.4%) 27 (15.7%) 52 (30.2%) 39 (22.7%) 6 (3.5%) 16 (9.3%) 21 (12.2%) 40 (23.3%) 15 (8.7%) 32 (18.6%) 31 (18.0%) 1 (0 to 3) 2 (0 to 6) 2 (0 to 6)
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Parkinson’s disease dementia and 5 were other forms of dementia (Paddick et al., 2014). BPS for AD and VAD cases are presented in Table 4. When comparing AD and VAD some differences in symptom pattern were evident. Anxiety was the most common symptom in AD, followed by depression, irritability and agitation/aggression. In VAD the most common symptom was agitation/aggression, then anxiety and night-time sleep disturbance. However, there were no significant differences between dementia subtypes either in total number of symptoms, severity of symptoms or distress from symptoms.
Care giver burden
The ZBI was completed by carers for 45 people (57.7%) with dementia, 23 people (50.0%) with MCI and 97 (56.4%) of the control group. All other informants said that they did not feel that they were providing additional care over and above that considered normal in Hai. It is likely that if the ZBI had been completed for these carers, that the score would have been zero, indicating no burden. Comparing carers/informants who completed the ZBI and those who did not, there were no significant differences in carer age (median 45 for both groups, U = 9827.0, z = 0.653, p = 0.514,) or gender (77.0% female and 67.9% female respectively, χ 2 (1) = 2.059, p = 0.151). Those carers who completed the ZBI were less likely to live with the participant (76.4%) than those who did not complete the ZBI (86.3%), χ 2 (1) = 6.810, p = 0.009. This is likely to reflect the additional burden in providing care outwith their normal routine therefore likely to be in excess of the normal intergenerational expectation of caring for an elderly person in their home.
From the control group 86 (88.7%) scored zero, whilst in the MCI group 12 (52.2%) scored zero. In the dementia group 12 (26.7%) scored zero, and the median score was 14 (IQR 0 to 24.5). After adjusting for the effects of age, gender, education and Barthel index score, the total number of NPI-Q symptoms was still a significant predictor of carer burden score in those who completed the ZBI (β = 2.002 95% CI 0.713 to 3.292, p = 0.003).
Discussion This is one of very few studies of BPS in dementia to be carried out in SSA and the first outside Nigeria. BPS appear to be associated with a considerable distress and caregiver burden, even in those without dementia. One reason for this might be the fact that we did not exclude individuals found to have other psychiatric diagnoses from the control sample. Although significantly more common and more severe in dementia, such symptoms are unlikely to be exclusively part of the dementia syndrome. Indeed, reported depressive symptoms were equally common across all groups. We found no significant difference in BPS between AD and VAD subtypes, therefore the relatively high proportion of VAD cases in our study is not likely to have impacted greatly on our findings. A greater total number of BPS was a significant independent predictor of increased carer burden, even after adjusting for the effects of age, gender, education and physical function. Although carer burden may be most obvious in those with physical disability, the contribution of BPS to carer burden should not be underestimated (Dotchin et al., 2014). One interesting finding from our study was the apparent openness with which carers took part in the clinical
Table 4 Data split into those with Alzheimer’s disease and those with vascular dementia Symptom present in last 30 days
Alzheimer’s disease (n = 38)
Vascular dementia (n = 32)
Significance
10 (26.3%) 8 (21.1%) 12 (31.6%) 14 (36.8%) 19 (50.0%) 8 (25.0%) 10 (26.3%) 8 (21.1%) 14 (36.8%) 10 (26.3%) 11 (28.9%) 9 (23.7%) 2 (1.5 to 4) 5 (3 to 10.5) 5 (2.5 to 12)
4 (12.5%) 11 (34.4%) 15 (46.9%) 9 (28.1%) 14 (43.8%) 2 (6.3%) 8 (25.0%) 4 (12.5%) 10 (31.3%) 9 (28.1%) 12 (37.5%) 6 (18.8%) 2.5 (1 to 5.5) 6 (1.2 to 9.75) 6 (1 to 13)
– – – – – – – – – – – – U = 569.5, z = 0.274, p = 0.784 U = 559.0, z = 0.398, p = 0.690 U = 561.0, z = 0.148, p = 0.882
Delusions Hallucinations Agitation/Aggression Depression Anxiety Elation/Euphoria Apathy Disinhibition Irritability Motor disturbance Night-time behaviour Appetite disturbance Median number of BPS present (IQR) Median symptom severity score (IQR) Median symptom distress score (IQR)
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interview and the fact that such a high proportion of carers lived with their relative and saw them daily, so were likely to be able to comment on BPS observed with a high degree of accuracy. This openness was notable, given that such symptoms are often associated with stigma. It is also notable that in the no cognitive impairment group carers/informants were significantly more likely to be male and in full-time paid employment. In this setting, this may be an indication that as elderly relatives develop cognitive problems, and the burden of care increases, younger, female family members take on more of the role as carer. In a society where formal retirement from work due to age is rare, this may allow older male family member to continue to work. Comparison to studies in high-income countries
The prevalence and pattern of BPS within our study sample were similar to that reported in communitybased studies from HICs (Ikeda et al., 2004; Lyketsos et al., 2002; Okura et al., 2010). Most studies of BPS of dementia have been undertaken in clinic or hospitalbased samples and are therefore likely to be biased given that the patient or their family have sought help. The community-based Cache county study in the US found that 75% of dementia patients, and 43% of those with MCI, identified at least one neuropsychiatric symptom (Lyketsos et al., 2002). Apathy was the most common symptom in dementia (36%) and depression the most common in MCI (20%). A door-to-door study in Spain also found apathy to be the most common symptom in dementia (Fernandez Martinez et al., 2008). The US Aging Demographics And Memory Study (ADAMS) included 856 community-based adults aged 71 and older and found that 58% of dementia cases, and 43% of those with cognitive impairment, but no dementia had BPS using the NPI-Q (Okura et al., 2010). In severe dementia, the most common symptom was apathy, present in 42%, with 41% experiencing agitation. In mild dementia and cognitive impairment, the most common symptom was depression, present in 25% and 30%, respectively. We found apathy to be relatively less common, particularly for those with MCI and in controls. Although, this may be due to difficulty in describing apathy in this population, different intergenerational expectations in Hai, with elderly people expected to take less of a role in day-to-day activities, may also be partly responsible.
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et al., 2012; Guerra Hernández et al., 2011; RodriguezAgudelo et al., 2011; Tatsch et al., 2006). However, BPS appear to be much less common in China, where in a community-based sample of 1271 dementia patients only 50.1% reported at least one BPS (Haibo et al., 2013). The first study of BPS of dementia in SSA reported a significantly lower prevalence of BPS in Yoruba Nigerians than African–American when analysing symptoms identified during clinical interview (Hendrie et al., 2000). The reason for this is not clear, and it is difficult to generalise as a validated scale was not used. There may have been cultural differences in willingness or openness to complain of potentially embarrassing behaviour to interviewers, particularly since stigma surrounding mental illness amongst the Yoruba has been noted (Baiyewu et al., 2003). It may be that the presence of the local enumerators at all interviews in our study helped to overcome fears of disclosing embarrassing symptoms. The prevalence of mental illness is thought to be higher in immigrant populations and minority groups, such as African Americans, and this may also have influenced the findings (Bhugra and Jones, 2001). A more recent Nigerian study (Baiyewu et al., 2012) found anxiety and night-time behavioural disturbance were less common and appetite change and apathy more common than in our cohort. Further investigation into the differences in BPS between these East and West African populations is merited. One further Nigerian study of patients referred to a neuropsychiatric service, which used a retrospective case note review to complete the NPI-Q on patients with a diagnosis of dementia, found a high symptom load in dementia (Amoo et al., 2011). The researchers did not question carers directly so the severity of symptoms and distress caused cannot be assessed. Limitations
In assessing caregiver burden, a large proportion of respondents did not complete the ZBI due to feeling that they did not provide additional care to their relative over and above what might be culturally expected. Those who did complete it were those who felt that they were providing some additional care, and therefore the sample is likely to be biased in favour of frailer or more dependent individuals. Additionally, we only asked about the presence of symptoms in the preceding month, so the true burden of symptoms may have been higher than that presented.
Comparison to studies in low- and middle-income countries
Conclusions
The pattern and prevalence of symptoms are similar to that reported in South and Central America (Acosta-Castillo
BPS of dementia are common in this population, with levels comparable to those seen in HICs. It is sometimes
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suggested that living within extended family groups in less developed societies leads to lower rates of caregiver burden. Our study suggests that this may not be the case, and that carers frequently encountered distressing symptoms. Moreover, since none of our cohort had a previous diagnosis of dementia, neither they, nor their carers had received an explanation for the presence of these symptoms. BPS may represent an important target for future interventions to reduce caregiver strain and improve quality of life. Conflict of interest None declared
Key points • Behavioural and psychological symptoms (BPS) of dementia are common in high-income countries, but published data on BPS from sub-Saharan Africa are scarce. • We found BPS to be highly prevalent in older adults with dementia in rural Tanzania. • BPS are likely to have a significant impact upon quality of life for older adults with dementia and their carers. • Low-cost interventions and educational programmes for BPS are needed to improve quality of life.
Acknowledgements We wish to acknowledge the help of all health care workers, village enumerators and medical supervisors who assisted in identification of cases, clinical assessment and completion of the census. We are especially grateful to patients, carers and family members for taking part in the study. Funding: This study was part funded by a British Geriatric Society SpR start up grant and an Academy of Medical Sciences (UK) Clinical Lecturer start up grant. Role of the funding source: The sponsors of this study had no role in designing the study; in the collection, analysis, and interpretation of data; in the writing of the report; or in the decision to submit the paper for publication. Author contributions Design/conception—Richard Walker, Catherine Dotchin, Stella-Maria Paddick and Anna Longdon. Literature Copyright # 2014 John Wiley & Sons, Ltd.
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