'We call it the shaking illness': perceptions and experiences of Parkinson's disease in rural northern Tanzania

Parkinson disease (PD) causes physical disability that negatively affects the quality of life of the sufferer's and their families. There are no Parkinson's disease (PD) social science studies published from Africa. This paper presents findings from a qualitative research study on how PD is perceived and treated in a population of approximately 161,000 within a demographic surveillance site in rural Tanzania. We conducted in-depth interviews with 28 PD sufferers, 28 carers, 4 health workers and 2 traditional healers. In addition, 6 focus group discussions were conducted in 3 villages to investigate wider community views of PD. PD sufferers expressed frustration with the physical, psychological, social and economic consequences of the illness. Feelings of a diminished quality of life characterised by dependency, stigma and social isolation were common. Additionally, a handful of male sufferers related their sexual incompetence to the illness. Carers complained of lost income opportunities and social isolation resulting from caring for sufferers. Misconceptions about the cause, symptoms and appropriated PD treatment were widespread. Only 2 PD sufferers had commenced western type treatment through outsourcing drugs from other parts of the country and outside of Tanzania. This study highlights the urgent need for PD awareness and treatment interventions in such settings. Such interventions need to address the concerns and needs of sufferers, their carers and the wider community, including the health care system

Social Representation and Practices Related to Dementia in Hai District of Tanzania.

With the increasing number of people surviving into old age in Africa, dementia is becoming an important public health problem. Understanding the social dynamics of dementia in resource-poor settings is critical for developing effective interventions. We explored the socio-cultural beliefs surrounding dementia and the life experience of people with dementia (PWD) and their caregivers in the Hai District of Kilimanjaro, Tanzania. Cross-sectional qualitative design. Forty one PWD were purposively sampled from the Hai District of Kilimanjaro. Twenty five paired interviews with PWD and with caregivers, and 16 with caregivers alone, were conducted. Interviews were tape recorded, transcribed verbatim and analyzed using content analysis approach. Forty one PWD (26 females), aged 70 years and older, were recruited but due to speech difficulties only 25 participated in the interviews. Married were 13, widow in 22 and widower 6. The majority, 33/41 were illiterate. PWD and carers perceived memory problems as a normal part of ageing. Dementia was commonly referred as "ugonjwa wa uzeeni" (disease of old people) or memory loss disease. The majority of PWD 13/12 and carers 7/16 did not know what dementia is or what causes it. Dementia was felt to be associated with stroke, high blood pressure, diabetes, old age, curse/witchcraft and life stress. Half of the participants had used modern care and alternative care such as herbs, prayers or traditional healers. Caregivers complained about the burden of caring for PWD and suggested that community organizations should be involved in addressing the problem. Knowledge about dementia is low and the symptoms are accepted as a problem of old age. PWD and carers demonstrate pluralistic behaviour in seeking help from modern care, prayers and traditional healers. The disease adds significant burden to family members. Family and caregivers need more education on early recognition of symptoms and cost effective management of dementia at family level. Faith-based organizations could play an important role in dementia interventions. At a national level effective policy and improvement of the health care system to address the needs of PWD and their families are imperative

A Qualitative Study Exploring the Impact and Effects Following Hospital Discharge of COVID-19:Study Protocol

Introduction: Research into the long-term effects of coronavirus disease 2019 (COVID-19) continues at an unprecedented pace. Many physical long-term symptoms of COVID-19 have been reported and include headache, fatigue, muscle pain and breathlessness, etc. Psychological effects are not dissimilar to survivors of SARS. There is limited qualitative research exploring the mental health impacts and experiences of hospitalized COVID-19 inpatients. Methods: A prospective qualitative study is planned to explore patient experiences post hospital discharge following a diagnosis of COVID-19. The research aims to gain an understanding of how COVID-19 affects quality of life (QoL) and functional abilities. Patients discharged from the hospital will be invited to take part in semi-structured interviews discussing their experiences of hospitalization and the impact of COVID-19 on their QoL. Interviews will be conducted at three and six months following discharge from hospital. This study will provide important qualitative insight and may inform clinical interventions and commissioning decisions. Trial registration: The study has Research Ethics Committee (REC) and Health Research Authority (HRA) approvals obtained from Health and Care Research Wales (HCRW) [IRAS project ID 293196]

Dementia Prevalence Estimates in Sub-Saharan Africa: Comparison of two Diagnostic Criteria.

We have previously reported the prevalence of dementia in older adults living in the rural Hai district of Tanzania according to the Diagnostic and Statistical Manual of Mental Disorders, 4th edition (DSM-IV) criteria. The aim of this study was to compare prevalence rates using the DSM-IV criteria with those obtained using the 10/66 diagnostic criteria, which is specifically designed for use in low- and middle-income countries. In phase I, 1,198 people aged 70 and older were screened for dementia. A stratified sample of 296 was then clinically assessed for dementia according to the DSM-IV criteria. In addition, data were collected according to the protocol of the 10/66 Dementia Research Group, which allowed a separate diagnosis of dementia according to these criteria to be established. The age-standardised prevalence of clinical DSM-IV dementia was 6.4% (95% confidence interval [CI] 4.9-7.9%) and of '10/66 dementia' was 21.6% (95% CI 17.5-25.7%). Education was a significant predictor of '10/66 dementia', but not of DSM-IV dementia. There are large discrepancies in dementia prevalence rates depending on which diagnostic system is used. In rural sub-Saharan Africa, it is not clear whether the association between education and dementia using the 10/66 criteria is a genuine effect or the result of an educational bias within the diagnostic instrument. Despite its possible flaws, the DSM-IV criteria represent an international standard for dementia diagnosis. The 10/66 diagnostic criteria may be more appropriate when identification of early and mild cognitive impairment is required

Identifying prognostic indicators for cognitive stimulation therapy for dementia: protocol for a systematic review and individual participant data meta-analysis

BACKGROUND: Cognitive stimulation therapy (CST) is the only non-pharmacological, treatment for dementia recommended by the UK National Institute for Health and Care Excellence, following multiple international trials demonstrating beneficial cognitive outcomes in people with mild-to-moderate dementia. However, there is limited understanding of whether treatment prognosis is influenced by sociodemographic and clinical variables (such as dementia subtype and gender), information which could inform clinical decision-making. AIM: We describe the protocol for a systematic review and individual patient data meta-analysis assessing the prognostic factors related to CST. In publishing this protocol, we hope to increase the transparency of our work, and keep healthcare professionals aware of the latest evidence for effective CST. METHOD: A systematic review will be conducted with searches of the bibliographic databases Medline, EMBASE and PsycINFO, from inception to 7 February 2023. Studies will be included if they are clinical trials of CST, use the Alzheimer's Disease Assessment Scale - Cognitive Subscale (gold-standard measure of cognition in dementia in clinical trials) and include participants with mild-to-moderate dementia. Following harmonisation of the data-set, mixed-effect models will be constructed to explore the relationship between the prognostic indicators and change scores post-treatment. CONCLUSIONS: This is the first individual patient data meta-analyses on CST, and has the potential to significantly optimise patient care. Previous analyses suggest people with advanced dementia could benefit more from CST treatment. Given that CST is currently used post-diagnosis in people with mild-to-moderate dementia, the implications of confirming this finding, among identifying other prognostic indicators, are profound

Rationing care by frailty during the COVID-19 pandemic

The coronavirus disease 2019 (COVID-19) pandemic is disproportionately affecting older people and those with underlying comorbidities. Guidelines are needed to help clinicians make decisions regarding appropriate use of limited NHS critical care resources. In response to the pandemic, the National Institute for Health and Care Excellence published guidance that employs the Clinical Frailty Scale (CFS) in a decision-making flowchart to assist clinicians in assessing older individuals’ suitability for critical care. This commentary raises some important limitations to this use of the CFS and cautions against the potential for unintended impacts. The COVID-19 pandemic has allowed the widespread implementation of the CFS with limited training or expert oversight. The CFS is primarily being used to assess older individuals’ risk of adverse outcome in critical care, and to ration access to care on this basis. While some form of resource allocation strategy is necessary for emergencies, the implementation of this guideline in the absence of significant pressure on resources may reduce the likelihood of older people with frailty, who wish to be considered for critical care, being appropriately considered, and has the potential to reinforce the socio-economic gradient in health. Our incomplete understanding of this novel disease means that there is a need for research investigating the short-term predictive abilities of the CFS on critical care outcomes in COVID-19. Additionally, a review of the impact of stratifying older people by CFS score as a rationing strategy is necessary in order to assess its acceptability to older people as well as its potential for disparate impacts

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

Identifying prognostic indicators for cognitive stimulation therapy for dementia: protocol for a systematic review and individual participant data meta-analysis

Background Cognitive stimulation therapy (CST) is the only non-pharmacological, treatment for dementia recommended by the UK National Institute for Health and Care Excellence, following multiple international trials demonstrating beneficial cognitive outcomes in people with mild-to-moderate dementia. However, there is limited understanding of whether treatment prognosis is influenced by sociodemographic and clinical variables (such as dementia subtype and gender), information which could inform clinical decision-making. Aim We describe the protocol for a systematic review and individual patient data meta-analysis assessing the prognostic factors related to CST. In publishing this protocol, we hope to increase the transparency of our work, and keep healthcare professionals aware of the latest evidence for effective CST. Method A systematic review will be conducted with searches of the bibliographic databases Medline, EMBASE and PsycINFO, from inception to 7 February 2023. Studies will be included if they are clinical trials of CST, use the Alzheimer's Disease Assessment Scale – Cognitive Subscale (gold-standard measure of cognition in dementia in clinical trials) and include participants with mild-to-moderate dementia. Following harmonisation of the data-set, mixed-effect models will be constructed to explore the relationship between the prognostic indicators and change scores post-treatment. Conclusions This is the first individual patient data meta-analyses on CST, and has the potential to significantly optimise patient care. Previous analyses suggest people with advanced dementia could benefit more from CST treatment. Given that CST is currently used post-diagnosis in people with mild-to-moderate dementia, the implications of confirming this finding, among identifying other prognostic indicators, are profound

Social Vulnerability, Frailty, and Their Association With Mortality in Older Adults Living in Rural Tanzania.

BackgroundSocial vulnerability correlates with frailty and is associated with mortality and disability. However, few studies have investigated this relationship outside of high-income country settings. This study aimed to produce and analyze a culturally adapted social vulnerability index (SVI) to investigate the relationship between social vulnerability, frailty, and mortality in older adults in Tanzania.MethodsAn SVI was produced using data from a cohort study investigating frailty in older adults in Tanzania. Variables were selected based on previous SVI studies using the categories established by Andrew et al. from the Canadian Study of Health and Aging, and National Population Health Survey. The SVI distribution was examined and compared with a frailty index (FI) produced from the same sample, using mutually exclusive variables. Cox regression survival analysis was used to investigate the association between social vulnerability, frailty, and mortality.ResultsA stratified cohort of 235 individuals were included in the study at baseline, with a mean age of 75.2 (SD 11.5). Twenty-six participants died within the follow-up period, with a mean of 503 days (range: 405-568) following the initial assessment. The SVI had a median score of 0.47 (interquartile range: 0.23, range: 0.14-0.86). Social vulnerability significantly predicted mortality when adjusting for age and gender, but not when also adjusting for frailty.ConclusionsSocial vulnerability can be successfully operationalized and culturally adapted in Tanzania. Social vulnerability is associated with mortality in Tanzania, but not independently of frailty

Mixed methods implementation research of cognitive stimulation therapy (CST) for dementia in low and middle-income countries: study protocol for Brazil, India and Tanzania (CST-International)

INTRODUCTION In low/middle-income countries (LMICs), the prevalence of people diagnosed with dementia is expected to increase substantially and treatment options are limited, with acetylcholinesterase inhibitors not used as frequently as in high-income countries (HICs). Cognitive stimulation therapy (CST) is a group-based, brief, non-pharmacological intervention for people with dementia that significantly improves cognition and quality of life in clinical trials and is cost-effective in HIC. However, its implementation in other countries is less researched. This protocol describes CST-International; an implementation research study of CST. The aim of this research is to develop, test, refine and disseminate implementation strategies for CST for people with mild to moderate dementia in three LMICs: Brazil (upper middle-income), India (lower middle-income) and Tanzania (low-income). METHODS AND ANALYSIS Four overlapping phases: (1) exploration of barriers to implementation in each country using meetings with stakeholders, including clinicians, policymakers, people with dementia and their families; (2) development of implementation plans for each country; (3) evaluation of implementation plans using a study of CST in each country (n=50, total n=150). Outcomes will include adherence, attendance, acceptability and attrition, agreed parameters of success, outcomes (cognition, quality of life, activities of daily living) and cost/affordability; (4) refinement and dissemination of implementation strategies, enabling ongoing pathways to practice which address barriers and facilitators to implementation. ETHICS AND DISSEMINATION Ethical approval has been granted for each country. There are no documented adverse effects associated with CST and data held will be in accordance with relevant legislation. Train the trainer models will be developed to increase CST provision in each country and policymakers/governmental bodies will be continually engaged with to aid successful implementation. Findings will be disseminated at conferences, in peer-reviewed articles and newsletters, in collaboration with Alzheimer's Disease International, and via ongoing engagement with key policymakers