Patient and caregiver experiences of living with dementia in Tanzania.

Introduction: Tanzania is a low-income country with an increasing prevalence of dementia, which provides challenges for the existing healthcare system. People with dementia often don't receive a formal diagnosis, and with a lack of formal healthcare, are often predominantly supported by family relatives. There are very few published data relating to lived experiences of people with dementia in Tanzania. This study aimed to understand people with dementia, and their caregivers' experiences of living with dementia in Tanzania and the perceived needs of people with dementia.Methods: Qualitative, semi-structured interviews were conducted with 14 people with dementia and 12 caregivers in Moshi, Tanzania. Interviews were audio-recorded, translated, transcribed and analysed using a Framework Analysis approach.Results: Three sub-themes were identified within data describing the experience of 'Living with Dementia in Tanzania': 'Deteriorations in Health', 'Challenges to living with Dementia in Tanzanian Culture', and 'Lack of Support': people with dementia faced challenges due to social isolation, stigmatisation, and lack of caregiver knowledge on how best to provide support. Collectively, these impacted on both the physical and mental health of people with dementia. Misconceptions about dementia aetiology related to age, stresses of daily life and other co-morbidities. People with dementia were motivated to access treatment, exhibiting pluralistic health-seeking behaviours. There was an overall preference for non-pharmacological interventions over medication, with high levels of trust in medical professional opinions.Conclusions: Living with dementia in Tanzania is influenced by both cultural and religious factors. More work is needed to target supplementary healthcare (with efforts to promote accessibility), support for caregivers and public health education about dementia to overcome existent misconceptions and stigma.

Group experiences of cognitive stimulation therapy (CST) in Tanzania: a qualitative study.

BACKGROUND: Tanzania is a low-income country in which medication for dementia is largely unavailable. Cognitive Stimulation Therapy (CST) is a group-based psychological treatment for people with dementia (PwD), shown to improve cognition and quality of life (QoL). It has previously been culturally adapted and piloted in Tanzania, shown to produce similar outcomes. UK research into CST suggests processes inherent to the group nature are key to its success. This study sought to identify group processes within CST in Tanzania and understand their impact on CST principles and outcomes. METHODS: Data collection took place in rural Hai District, through qualitative semi-structured interviews. Sixteen PwD and four facilitators were recruited through convenience sampling and interviewed about their experiences of CST. Interviews were audio-recorded, translated, transcribed and analysed by thematic analysis. RESULTS: Two main themes emerged: 'Positive group experiences' and 'Negative group experiences'. From this, a number of group processes were identified, such as helping behaviours and feeling understood by the group. Positive processes supported CST principles and participant improvement. Facilitators were influential over group dynamics. The group processes identified impacted CST principles and treatment outcomes. CONCLUSIONS: This is the first study on group mechanisms of CST in Tanzania. It provides deeper insight into participants' experiences of CST, thus identifying specific processes underlying the quantitatively measured positive outcomes of CST in Tanzania by previous studies. It also reveals further cultural barriers to implementation, enabling amendments for optimization of treatment efficacy.

Development and acceptability of a brief, evidence-based Dementia Awareness for Caregivers course in low- and middle-income countries.

BACKGROUND: Knowledge of and attitudes towards dementia vary across countries, and for caregivers in low- and middle-income countries (LMICs), access to information can be challenging. There is an urgent need for brief, easily accessible and culturally appropriate educational courses for caregivers of persons with dementia, providing much needed information whilst addressing important psychological concepts such as stigma. METHODS: An international and multidisciplinary team developed Dementia Awareness for Caregivers (DAC) courses in four stages: (1) scoping review and module agreement, (2) development of an International template (DAC-International) containing a standardised process for adding information, (3) development of local DACs using a standardised format and (4) acceptability of courses in Brazil, India and Tanzania. FINDINGS: The DAC-International was developed, comprising three modules: 'What is dementia?'; 'Positive engagement' and 'Caring for someone with dementia'. Three local versions were developed from this (DAC-Brazil, DAC-India and DAC-Tanzania), where additions of country-specific information included prevalent stereotypes and the addition of culturally relevant case studies. An initial field test was conducted in each country (n = 85), which indicated acceptability to participants. CONCLUSIONS: The methods used here resulted in culturally valid and acceptable educational courses for carers of people with dementia. Future work will consist of large-scale, formal evaluations and the development of additional local courses.

A New Approach for Developing "Implementation Plans" for Cognitive Stimulation Therapy (CST) in Low and Middle-Income Countries: Results From the CST-International Study.

Background: Even with a strong evidence base, many healthcare interventions fail to be translated to clinical practice due to the absence of robust implementation strategies. For disorders such as Alzheimer's disease and other dementias, access to evidence-based interventions beyond research settings is of great importance. Cognitive Stimulation Therapy (CST) is a brief, group-based intervention, with consistent evidence of effectiveness. Methods: An implementation focused, three-phase methodology was developed using extensive stakeholder engagement. The methods resulted in a standardized Implementation Plan for the successful translation of CST from research to practice. The methodology was developed using the Consolidated Framework for Implementation Research (CFIR) and refined in three countries that vary in levels of economic development and healthcare systems (Brazil, India and Tanzania). Results: Five Implemention Plans for CST were produced. Each plan contained implementation strategies and action plans devised in conjunction with policy professionals, healthcare professionals, people with dementia and family carers, and an international team of researchers and clinicians. Conclusion: This novel methodology can act as a template for implementation studies in diverse healthcare systems across the world. It is an effective means of devising socio-culturally informed Implementation Plans that account for economic realities, health equity and healthcare access.

Managing dementia in rural Nigeria: feasibility of cognitive stimulation therapy and exploration of clinical improvements.

Objectives: We investigated the feasibility and clinical impact of a psychosocial intervention, Cognitive Stimulation Therapy (CST), to help manage dementia in a rural setting in Nigeria. Method: People with dementia were identified from a prevalence study in Lalupon in the south-west of Nigeria. Prior to this feasibility study CST was adapted for the setting and pilot by our team. Fourteen sessions of CST were provided over a 7-week period by a trained nurse specialist and occupational therapist. Change in quality of life was the main outcome. Results: Nine people were enrolled in CST. Significant improvements in cognitive function, quality of life (physical, psychosocial and environmental domains), physical function, neuro-psychiatric symptoms and carer burden were seen. Conclusions: CST appears to be feasible in this setting, although adaptation for low literacy levels, uncorrected visual and hearing impairment and work and social practices is needed. The clinical improvements seen were encouraging.

Screening for Instrumental Activities of Daily Living in Sub-Saharan Africa: A Balance Between Task Shifting, Simplicity, Brevity, and Training.

BACKGROUND: Task shifting has been suggested as one way to help manage the increasing burden of dementia in sub-Saharan Africa (SSA). However, brief, easy-to-use and valid screening tools are needed to support this approach. Our team has developed an 11-item questionnaire to assess instrumental activities of daily living (IADLs) in SSA, the Identification and Intervention for Dementia in Elderly Africans (IDEA)-IADL questionnaire. We aimed to externally validate the questionnaire and develop a shorter, more efficient version. METHODS: A community-based sample of 329 older adults in 4 rural villages was screened for dementia using the validated IDEA cognitive screen and the 11-item IDEA-IADL questionnaire. A stratified sample was assessed for Diagnostic and Statistical Manual of Mental Disorders (Fourth Edition) dementia by a United Kingdom-based doctor, who was blinded to the results of screening. Area under the receiver operating characteristic (AUROC) curve analysis was used to assess validity, and factor analysis and regression modeling were used to develop a shorter version of the questionnaire. RESULTS: A 3-item IDEA-IADL questionnaire was developed and externally validated in the study sample. The questionnaire was deemed to be valid and enhanced screening performance in 2 villages (AUROC: 0.857 and 0.895) but detracted from the accuracy of the IDEA cognitive screen in the other 2 villages (AUROC: 0.591 and 0.639). These differences appeared to be due to differences in interpretation of responses to questions by the assessors. CONCLUSIONS: A brief IDEA-IADLs scale was developed and worked well in some villages. However, our study highlights a training need if brief screening tools to assess IADLs are to be effectively used by nonspecialists in low-resource settings.

A longitudinal study of cognitive decline in rural Tanzania: rates and potentially modifiable risk factors.

ABSTRACTBackground:The number of people living with dementia in sub-Saharan Africa (SSA) is expected to increase rapidly in the coming decades. However, our understanding of how best to reduce dementia risk in the population is very limited. As a first step in developing intervention strategies to manage dementia risk in this setting, we investigated rates of cognitive decline in a rural population in Tanzania and attempted to identify associated factors. METHODS: The study was conducted in the rural Hai district of northern Tanzania. In 2014, community-dwelling people aged 65 years and over living in six villages were invited to take part in a cognitive screening program. All participants from four of the six villages were followed-up at two years and cognitive function re-tested. At baseline and follow-up, participants were assessed for functional disability, hypertension, and grip strength (as a measure of frailty). At follow-up, additional assessments of visual acuity, hearing impairment, tobacco and alcohol consumption, and clinical assessment for stroke were completed. RESULTS: Baseline and follow-up data were available for 327 people. Fifty people had significant cognitive decline at two-year follow-up. Having no formal education, low grip strength at baseline, being female and having depression at follow-up were independently associated with cognitive decline. CONCLUSIONS: This is one of the first studies of cognitive decline conducted in SSA. Rates of decline at two years were relatively high. Future work should focus on identification of specific modifiable risk factors for cognitive decline with a view to developing culturally appropriate interventions.

Cognitive stimulation therapy as a low-resource intervention for dementia in sub-Saharan Africa (CST-SSA): Adaptation for rural Tanzania and Nigeria.

INTRODUCTION: Cognitive stimulation therapy is a non-pharmacological intervention for people with dementia. Its use has been associated with substantial improvements in cognition and quality of life in studies from high-income countries, equivalent to those achieved by pharmacological treatments. Cognitive stimulation therapy may be particularly suited to low resource settings, such as sub-Saharan Africa, because it requires little specialist equipment and can be delivered by non-specialist health workers. The aim of this study was to adapt cognitive stimulation therapy for use in sub-Saharan Africa taking into account socio-cultural differences and resource implications. METHODS: Cognitive stimulation therapy is a structured programme, originally developed in the United Kingdom. Substantial adaptations were required for use in sub-Saharan Africa. The formative method for adapting psychotherapy was used as a framework for the adaption process. The feasibility of using the adapted cognitive stimulation therapy programme to manage dementia was assessed in Tanzania and Nigeria in November 2013. Further adaptations were made following critical appraisal of feasibility. RESULTS: The adapted cognitive stimulation therapy intervention appeared feasible and acceptable to participants and carers. Key adaptations included identification of suitable treatment settings, task adaptation to accommodate illiteracy and uncorrected sensory impairment, awareness of cultural differences and usage of locally available materials and equipment to ensure sustainability. CONCLUSIONS: Cognitive stimulation therapy was successfully adapted for use in sub-Saharan Africa. Future work will focus on a trial of cognitive stimulation therapy in each setting.

Cognitive stimulation therapy as a sustainable intervention for dementia in sub-Saharan Africa: Feasibility and clinical efficacy using a stepped-wedge design - ERRATUM.

In the above article (Paddick, 2017) The corresponding author's details were previously listed incorrectly. The correct details are; contact number +44 191 293 2709 and email address William.gray@nhct.nhs.uk. The original article has been updated with the correct contact details. The publishers apologise for any inconvenience and confusion this error has caused.

Adaptation and validation of the Alzheimer's Disease Assessment Scale - Cognitive (ADAS-Cog) in a low-literacy setting in sub-Saharan Africa.

OBJECTIVE: This study aimed to assess the feasibility of a low-literacy adaptation of the Alzheimer's Disease Assessment Scale - Cognitive (ADAS-Cog) for use in rural sub-Saharan Africa (SSA) for interventional studies in dementia. No such adaptations currently exist. METHODS: Tanzanian and Nigerian health professionals adapted the ADAS-Cog by consensus. Validation took place in a cross-sectional sample of 34 rural-dwelling older adults with mild/moderate dementia alongside 32 non-demented controls in Tanzania. Participants were oversampled for lower educational level. Inter-rater reliability was conducted by two trained raters in 22 older adults (13 with dementia) from the same population. Assessors were blind to diagnostic group. RESULTS: Median ADAS-Cog scores were 28.75 (interquartile range (IQR), 22.96-35.54) in mild/moderate dementia and 12.75 (IQR 9.08-16.16) in controls. The area under the receiver operating characteristic curve (AUC) was 0.973 (95% confidence interval (CI) 0.936-1.00) for dementia. Internal consistency was high (Cronbach's α 0.884) and inter-rater reliability was excellent (intra-class correlation coefficient 0.905, 95% CI 0.804-0.964). CONCLUSION: The low-literacy adaptation of the ADAS-Cog had good psychometric properties in this setting. Further evaluation in similar settings is required.

Cognitive stimulation therapy as a sustainable intervention for dementia in sub-Saharan Africa: feasibility and clinical efficacy using a stepped-wedge design.

BACKGROUND: Cognitive stimulation therapy (CST) is a psychosocial group-based intervention for dementia shown to improve cognition and quality of life with a similar efficacy to cholinesterase inhibitors. Since CST can be delivered by non-specialist healthcare workers, it has potential for use in low-resource environments, such as sub-Saharan Africa (SSA). We aimed to assess the feasibility and clinical effectiveness of CST in rural Tanzania using a stepped-wedge design. METHODS: Participants and their carers were recruited through a community dementia screening program. Inclusion criteria were DSM-IV diagnosis of dementia of mild/moderate severity following detailed assessment. No participant had a previous diagnosis of dementia and none were taking a cholinesterase inhibitor. Primary outcomes related to the feasibility of conducting CST in this setting. Key clinical outcomes were changes in quality of life and cognition. The assessing team was blind to treatment group membership. RESULTS: Thirty four participants with mild/moderate dementia were allocated to four CST groups. Attendance rates were high (85%) and we were able to complete all 14 sessions for each group within the seven week timeframe. Substantial improvements in cognition, anxiety, and behavioral symptoms were noted following CST, with smaller improvements in quality of life measures. The number needed to treat was two for a four-point cognitive (adapted Alzheimer's Disease Assessment Scale-Cognitive) improvement. CONCLUSIONS: This intervention has the potential to be low-cost, sustainable, and adaptable to other settings across SSA, particularly if it can be delivered by non-specialist health workers.

Community validation of the IDEA study cognitive screen in rural Tanzania.

OBJECTIVES: The dementia diagnosis gap in sub-Saharan Africa (SSA) is large, partly because of difficulties in screening for cognitive impairment in the community. As part of the Identification and Intervention for Dementia in Elderly Africans (IDEA) study, we aimed to validate the IDEA cognitive screen in a community-based sample in rural Tanzania METHODS: Study participants were recruited from people who attended screening days held in villages within the rural Hai district of Tanzania. Criterion validity was assessed against the gold standard clinical dementia diagnosis using DSM-IV criteria. Construct validity was assessed against, age, education, sex and grip strength and instrumental activities of daily living (IADLs). Internal consistency and floor and ceiling effects were also examined. RESULTS: During community screening, the IDEA cognitive screen had high criterion validity, with an area under the receiver operating characteristic curve of 0.855 (95% CI 0.794 to 0.915). Higher scores on the screen were significantly correlated with lower age, male sex, having attended school, better grip strength and improved performance in activities of daily living. Factor analysis revealed a single factor with an eigenvalue greater than one, although internal consistency was only moderate (Cronbach's alpha = 0.534). CONCLUSIONS: The IDEA cognitive screen had high criterion and construct validity and is suitable for use as a cognitive screening instrument in a community setting in SSA. Only moderate internal consistency may partly reflect the multi-domain nature of dementia as diagnosed clinically. Copyright © 2016 John Wiley & Sons, Ltd.

Validation of the Identification and Intervention for Dementia in Elderly Africans (IDEA) cognitive screen in Nigeria and Tanzania.

BACKGROUND: We have previously described the development of the Identification and Intervention for Dementia in Elderly Africans (IDEA) cognitive screen for use in populations with low levels of formal education. The IDEA cognitive screen was developed and field-tested in an elderly, community-based population in rural Tanzania with a relatively high prevalence of cognitive impairment. The aim of this study was to validate the IDEA cognitive screen as an assessment of major cognitive impairment in hospital settings in Nigeria and Tanzania. METHODS: In Nigeria, 121 consecutive elderly medical clinic outpatients reviewed at the University College Hospital, Ibadan were screened using the IDEA cognitive screen. In Tanzania, 97 consecutive inpatients admitted to Mawenzi Regional Hospital (MRH), Moshi, and 108 consecutive medical clinic outpatients attending the geriatric medicine clinic at MRH were screened. Inter-rater reliability was assessed in Tanzanian outpatients attending St Joseph's Hospital in Moshi using three raters. A diagnosis of dementia or delirium (DSM-IV criteria) was classified as major cognitive impairment and was provided independently by a physician blinded to the results of the screening assessment. RESULTS: The area under the receiver operating characteristic (AUROC) curve in Nigerian outpatients, Tanzanian outpatients and Tanzanian inpatients was 0.990, 0.919 and 0.917 respectively. Inter-rater reliability was good (intra-class correlation coefficient 0.742 to 0.791). In regression models, the cognitive screen did not appear to be educationally biased. CONCLUSIONS: The IDEA cognitive screen performed well in these populations and should prove useful in screening for dementia and delirium in other areas of sub-Saharan Africa.

Development and community-based validation of the IDEA study Instrumental Activities of Daily Living (IDEA-IADL) questionnaire.

BACKGROUND: The dementia diagnosis gap in sub-Saharan Africa (SSA) is large, partly due to difficulties in assessing function, an essential step in diagnosis. OBJECTIVES: As part of the Identification and Intervention for Dementia in Elderly Africans (IDEA) study, to develop, pilot, and validate an Instrumental Activities of Daily Living (IADL) questionnaire for use in a rural Tanzanian population to assist in the identification of people with dementia alongside cognitive screening. DESIGN: The questionnaire was developed at a workshop for rural primary healthcare workers, based on culturally appropriate roles and usual activities of elderly people in this community. It was piloted in 52 individuals under follow-up from a dementia prevalence study. Validation subsequently took place during a community dementia-screening programme. Construct validation against gold standard clinical dementia diagnosis using DSM-IV criteria was carried out on a stratified sample of the cohort and validity assessed using area under the receiver operating characteristic (AUROC) curve analysis. RESULTS: An 11-item questionnaire (IDEA-IADL) was developed after pilot testing. During formal validation on 130 community-dwelling elderly people who presented for screening, the AUROC curve was 0.896 for DSM-IV dementia when used in isolation and 0.937 when used in conjunction with the IDEA cognitive screen, previously validated in Tanzania. The internal consistency was 0.959. Performance on the IDEA-IADL was not biased with regard to age, gender or education level. CONCLUSIONS: The IDEA-IADL questionnaire appears to be a useful aid to dementia screening in this setting. Further validation in other healthcare settings in SSA is required.