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

Abstract

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.

Keywords

dementia cognitive stimulation therapy Nigeria Tanzania Africa non-pharmacological interventions low-resource mental health interventions

Introduction

In sub-Saharan Africa (SSA), recent evidence suggests dementia prevalence equivalent to that found in high-income countries (HICs) (George-Carey et al., 2012). In this low-resource setting, where coverage of healthcare services can be limited, outcomes for people with dementia are often poor with substantial disability and high carer burden common (Dotchin et al., 2014; Kisoli et al., 2015; Wang, Xiao, He, Ullah, & De Bellis, 2014). Unfortunately, healthcare and human resources to address the problem are almost completely absent. There are an estimated 200 times fewer trained mental health workers per head of population in SSA than in most HICs (Saxena, Thornicroft, Knapp, & Whiteford, 2007), and across the continent, there are very few trained neurologists, geriatricians or psychiatrists (Bower & Zenebe, 2005; Dotchin, Akinyemi, Gray, & Walker, 2013; Eaton et al., 2011). These resource shortages result in the majority of people with dementia, and their families, having no access to healthcare services.

The World Health Organization (WHO) recommended strategy to increase access to healthcare interventions in low-resource environments is to train primary care workers to provide interventions more commonly delivered by specialists (Dua et al., 2011; Patel, 2009). Early evidence of this task-shifting approach to mental health intervention is positive (Van Ginneken et al., 2013). Interventions for dementia are almost exclusively based on HIC evidence which may have limited applicability to SSA. Evidence-based low-resource interventions are urgently needed to inform a future task-shifting approach.

Cognitive stimulation therapy (CST) is a non-pharmacological intervention for dementia with meta-analytic evidence from HIC studies of improvements in cognition, quality of life and reductions in caregiver burden (Aguirre, Woods, Spector, & Orrell, 2013; Woods, Aguirre, Spector, & Orrell, 2012). CST is therefore recommended for people with dementia worldwide (Prince, Albanese, & Guerchet, 2014). Evidence from HIC settings suggests CST is cost-effective in comparison to pharmacological interventions for dementia (Knapp et al., 2006). Since CST can be effectively delivered by non-specialist workers or trained carers, there is clear potential for its use in resource-limited settings. However, current evidence of the effectiveness of CST is from formal care settings not typical of SSA (Spector et al., 2003). It has not previously been utilised in a low- or middle-income country setting, although guidelines for adaptation to other cultures have been published (Aguirre, Spector, & Orrell, 2014).

The aim of the current study was to describe the adaptation and feasibility assessment of CST as a potential low-resource intervention for dementia in Tanzania and Nigeria.

Methods

Ethics

In Nigeria, the study was approved by the University of Ibadan and Oyo state Ministry of Health research ethics committees. In Tanzania, the study was approved nationally by the National Institute for Medical Research, and locally by Kilimanjaro Christian Medical University College. Informed consent was obtained from each participant recruited for the CST feasibility study. We obtained a thumbprint for those unable to write and the purpose and implications of the study were verbally explained. In cases where ability to give valid consent was in doubt, written assent was obtained from a close relative.

Study sites

This study was part of the Identification and Interventions for Dementia in Elderly Africans (IDEA) study. The IDEA study has two study sites: the Hai district of Northern Tanzania, East Africa and Lalupon, Oyo State, Nigeria, West Africa. Both sites are rural but differ in educational background, health systems, language and lifestyle.

Tanzania is a low-income country (gross national income (GNI) per capita $630) and Nigeria a lower middle-income country (GNI $2710 per capita). The Hai district of northern Tanzania is located on the slopes of Mount Kilimanjaro, close to the town of Moshi. The main occupation is agriculture. Although most farming is at a subsistence level, cash crops, such as tomatoes and coffee, are grown in some areas to provide additional income. Hai district is a demographic surveillance site where numerous epidemiological studies have taken place since the 1990s.The population at the last census was 161,119, of whom 8869 (5.5%) are aged 70 years and over. Of those aged 70 and over, two-thirds of women and one-third of men are completely illiterate (Paddick et al., 2014). The majority of the population speak Swahili, a lingua franca across East Africa, but a significant proportion of older rural women speak only a local language. Healthcare is free for elderly people, but lack of trained doctors, nurses and other health professionals and limited drug supply mean that there is often substantial unmet healthcare need.

Lalupon is located in the Lagelu local government area of Nigeria in Oyo state. It is some 20 miles north of the city of Ibadan, the state capital. It has a population of 15,854 according to the latest national census, with 642 people (4.0%) aged 65 years and over. The majority of people come from the Yoruba ethnic group. The predominant occupations are farming and trading. The educational level in older people is similar to that reported in Hai, with around one-third of the population aged 65 years and over having any formal education. The area has primary healthcare facilities and is regularly visited by staff of the Department of Community Medicine of University College Hospital, Ibadan.

CST in HICs

The theoretical basis of cognitive stimulation involves consideration of cognitive reserve and neuroplasticity. Cognitive reserve relates to the observed reduction in dementia risk in highly educated individuals and those engaging in complex mental activities in advanced age (Prince et al., 2012). It is hypothesised that engaging in cognitively demanding activities results in the development of more numerous neuronal connections allowing a degree of compensation for neuronal loss in old age. Neuroplasticity, the ability of the brain to adapt to stressors, is now thought to occur even in older age and following neuronal insult, allowing for neuro-rehabilitation and recovery. It is therefore likely that neuroplasticity may help compensate for degenerative changes in diseases such as dementia.

Cognitively stimulating activities are designed to promote learning through formation of new neuronal connections (Hall, Orrell, Stott, & Spector, 2013). There is research evidence of cognitive improvements following these activities in people with dementia (Baglio et al., 2015; Breuil et al., 1994; Young, Camic, & Tischler, 2015). CST is a highly structured, manualised programme of 14 twice-weekly therapy sessions (Spector, Thorgrimsen, Woods, & Orrell, 2006). It combines cognitively stimulating activities with principles of reality orientation, reminiscence and validation therapy (Spector et al., 2003). A fundamental principle is respect for participants, with activities designed to stimulate discussion and engage, whilst avoiding exposure of memory deficits through factual questioning.

The structured sessions include a repeated programme of warm-up, orientation, introductions and current affairs discussion intended to increase familiarisation prior to themed activities designed to engage older adults. In the UK, these themed activities typically include physical games, sounds, childhood memories, food, current affairs, faces and photographs, word association, creativity, categorising objects, orientation, using money, number games, word games and a team quiz. A comprehensive description of the activities which typically make up the CST sessions is given in the CST manual (Spector et al., 2006).

Adaption of CST for use in SSA

As a framework for adaptation of CST for use in SSA, the formative method for adapting psychotherapy (FMAP) was used (Hwang, 2009). This collaborative and community-led adaptation method is recommended for the adaption of CST to other cultures (Aguirre et al., 2014). The FMAP consists of five phases:

Phase I: Generating knowledge and collaborating with stakeholders

Aguirre et al. (2014) recommend the involvement of people with dementia and family members, community healthcare workers, mental healthcare workers and other older people with knowledge of historical, cultural and religious issues relevant to the culture. Issues related to the development of culturally appropriate interventions for people with dementia in Hai district and Lalupon were discussed with people with dementia, family carers, village healthcare workers and village leaders (e.g. village elders, religious leaders) when the idea of such an intervention was first raised by the study team. A dementia prevalence study in Hai district was used as an opportunity to canvas views in Tanzania (Longdon et al., 2013). In Nigeria, key stakeholders were engaged during the Ibadan study of Ageing and follow-up of the Indianapolis–Ibadan dementia project (Gureje, Ogunniyi, Kola, & Abiona, 2011; Ogunniyi et al., 2011).

Community healthcare workers, mental healthcare workers and academics from Nigeria and Tanzania (DM, SM, OO and AK) were invited to a workshop held in Newcastle upon Tyne, UK from 13 to 19 June 2013. Discussions were facilitated by a UK-based psychiatrist with dementia research experience in Tanzania (S-MP). At the start of the workshop, a one-day training session on CST was led by Dr Aimee Spector (University College London), a UK-based researcher involved in the development of the original CST manual.

Phase II: Integrating generated information with theory and empirical and clinical knowledge

This was the main activity during the UK workshop sessions. The information collected during phase I was used to inform the adaption of the CST manual to make it suitable for use in the rural study sites. Key considerations were the following.

Low literacy levels

Basic levels of literacy could not be assumed. High proportions of participants at both sites were unlikely to have attended school and so would be unable to read or write. Tasks involving holding a pen (including drawing) and reading words would not be appropriate.

Transportation

Since both sites were rural, participants were likely to need to travel to attend group sessions. Since public transport does not exist at the study sites, travelling was likely to involve significant cost and time for some participants.

Timing of sessions

In Hai district, the rainy season can make many villages inaccessible by road. Sessions during rainy season would be likely to suffer major disruption with both participants and healthcare workers/facilitators unable to attend. Sessions would also have to be held in the early afternoons to allow everyone time to get to the session and return home afterwards.

Location of sessions

Finding a suitable large communal building in some of the village locations was thought to be a possible problem. Although every village has a church or mosque, some participants may feel uncomfortable attending sessions held in a place of worship for a religion they were not part of.

Beliefs

Sessions should respect an individual’s religious and cultural beliefs.

Rights to privacy

During group sessions, some people may feel uncomfortable discussing issues they feel to be private. This includes discussion of the lives of other family members.

Phase III: Reviewing and revising the initial culturally adapted intervention with stakeholders

After the workshop, participants discussed the adaptation with community healthcare workers and mental health professionals in their own countries (AO, AS, GM and AA). The adaptation was discussed with the developers of the original CST manual to confirm that the adapted programme remained true to CST principles. A challenging issue at both sites was to gauge appropriate levels of difficulty for session activities. Community healthcare workers were able to offer advice on whether illiterate but cognitively intact older adults in their community would understand activities to the same extent as those with higher levels of education.

Phase IV: Testing the culturally adapted intervention

A feasibility assessment of CST was held at both study sites using the adapted manual. In Tanzania, the CST sessions ran from 28 October to 13 December 2013. Participants were identified from a dementia prevalence study conducted in the Hai district of Tanzania in 2010 (Longdon et al., 2013). Sessions were led by a senior occupation therapist (SM) assisted by an occupational therapist (GM) and the study doctor (S-MP). In Nigeria, the CST session ran from 11 November to 18 December 2013. Participants were recruited from a concurrent dementia prevalence study in Lalupon. The sessions were led by a senior research nurse (OO) and an occupational therapist (AS). At both sites, patients were included if they had mild to moderate dementia (diagnosed according to the DSM-IV (American Psychiatric Association, 1994) criteria by a psychiatrist in Tanzania (S-MP) and a neurologist in Nigeria (AO)), were aged 65 years or over, were able to engage in group activity for up to an hour, were able to understand simple instructions, communicate verbally and had no agitation or psychosis.

Phase V: Finalizing the culturally adapted intervention

After the feasibility study, the CST manual was further adapted based on the findings and finalised.

Outcomes and data collection during the feasibility study

The main aims of the feasibility study were (1) to assess the feasibility of conducting CST sessions in rural SSA, (2) to assess the acceptability of the adapted CST sessions to people with dementia and their carers and (3) to identify any areas for further adaptation. Once all session had been completed, the healthcare workers, patients and carers were asked to give feedback on each of these outcomes. Key outcome measures for the planned pilot trial were administered. These included the WHO Brief Quality of Life measure (The WHOQOL Group, 1998) and an adapted Alzheimer’s Disease Assessment Scale-Cognitive assessment (Mohs et al., 1997). However, the main aim in administering these assessment scales was to train healthcare workers in their use and to assess the acceptability of the assessments to patients and carers. Given the small number of subjects involved, the data were not analysed to assess improvements in outcome. Demographic data were collected from all participants.

Results

Phases I, II and III – Information gathering, adaptation and critical appraisal

During phases I, II and III, the CST manual was adapted for use in SSA. The adaptations emerged from discussions during at all three phases. The following key issues were identified.

The role of older people in society

The stated principle of respect for older people and asking opinions rather than facts in order to avoid exposure of cognitive deficit was felt to fit well with general views and attitudes to older persons in both Tanzania and Nigeria. Key considerations to integrate this principle into the adapted manual included the low level of literacy amongst older people, especially in Tanzania. Careful adaptation of activities to avoid literacy or drawing dependent tasks would be required to avoid exposure of those unable to read or write. In Tanzania, a facilitator fluent in local languages would be needed for those unable to speak Swahili.

At both sites, it is customary, out of respect, for older people to be relieved of household responsibilities by younger relatives. This custom opposes the goal of increasing activity and mental stimulation recommended by CST. Nevertheless, in the experience of local health workers, this view could be challenged through education of carers to involve participants in family decisions and encourage participation in activities.

Lifestyle and work arrangements

The existing highly structured twice weekly programme was felt to present a challenge in both study settings. Local experience indicated that although participants would value treatment and wish to attend, other activities would take priority. In rural villages, it would be customary to attend all burial or marriage ceremonies and community meetings even if a treatment session was organised. In an agricultural society, planting and harvesting seasons and attendance at weekly market days would generally be prioritized over non-emergency healthcare treatment. Great care would need to be taken to plan CST programmes with local communities to avoid these priority activities, but flexibility would be required. Group leaders would need contingency plans to reschedule sessions missed due to village events.

Other cultural issues

In Nigeria, previous experience and stakeholder discussions revealed that psychological treatment alone was not well understood, and that participants would expect a medical intervention in order to fully engage. It was felt that blood pressure screening and appropriate referral by nursing staff was a reasonable addition to the programme to help meet these expectations. In both settings, it would be culturally appropriate to give participants a small gift, such as a sweet to give to a grandchild, following attendance.

Cultural boundaries with regard to sharing personal information were felt to differ from those in the UK. For example, in rural Tanzania, it would be inappropriate to directly ask someone about their number of children/grandchildren and their personal background, unless this information was freely shared. Therefore, activities involving discussion of personal information would need modification.

Resources and infrastructure

Lack of transport infrastructure and road networks would result in challenges particularly in the rainy season and for those living furthest from treatment centres. Comfort would need to be maintained through provision of refreshments for those walking long distances to reach the session venue. Sessions were extended to one hour to allow for refreshments and time to rest. Sessions needed to be timed to allow those walking to get back home before dark. Furthermore, few suitable, well-lit buildings exist in rural areas. Since religious background was culturally very important in rural areas, chosen locations could not be centers of worship, as this would exclude those of other faiths from attendance. In most cases, the only suitable location identified was the village office or hall. Full support from village committees would be required.

CST session structure

CST sessions commence with an introductory section including greetings, orientation (reinforced by writing names and places on a large board), a group song and a brief current affairs discussion prior to the main themed activity. This section was adapted based upon group experience and discussions from phase I. Adaptations included verbal, rather than written, orientation, inclusion of a group prayer prior to the group song and discussion of village affairs, rather than national news items. It was important to consider how people typically access news and information, and tailor sessions appropriately. For example, in Hai, weekly sermons would be broadcast by radio and widely listened to, and village information announced following religious services for both Christians and Muslims.

Individual themed sessions are intended to result in a varied programme of activities. Each session was reviewed and adapted to ensure understandability and cultural relevance. All activities requiring literacy were altered to verbal activities. Care was taken to understand the goal of each activity in terms of cognitive stimulation, such as sensory stimulation or reminiscence, and to design an adapted session with the aim of achieving a similar outcome. All session materials had to be readily available in the local area and economical to buy. Where changes were not essential, the original activity was included. Care was also taken not to make activities so specific to the local area that they could not be used elsewhere. A summary of the adaptations made to the sessions at each site and comparison with the original manual are presented in Table 1.

Table 1.

Summary of adaptations to individual CST sessions after workshop discussions and feasibility assessment.

Session	Original item description	Initial adaptation	Comments and further adaptation following feasibility assessment
1	Physical games	Bean bag and bucket game was used rather than skittles in original version. To take into account locally available materials.	Adaptation to familiar game with locally available materials.
2	Sound	Minimal adaptation to sounds more likely to be familiar in local environment. Inclusion of well-known folk songs	Participants responded well to hearing traditional songs and suggesting those played at weddings.
3	Childhood	Topics for discussion included personal history, childhood home, traditional foods, and traditional toys.	Caution was needed in personal history section to avoid over-sharing of personal information, particularly in Tanzania
4	Food	Major adaptation was to include foods appropriate to local area Discussion of local seasonal foods Discussion of appropriate foods for a wedding	Original manual focus on breakfast and budgeting inappropriate due to lack of variety of day to day foods. Inclusion of unfamiliar foods promoted discussion.
5	Current affairs	Adaptation to include local events and current affairs. Other suitable topics for discussion were felt to be historical and current fashion, alongside more controversial topics such as gender roles.	Facilitators needed to be very familiar with local current affairs to lead this discussion. Topics of gender roles, and arranged marriage were popular with participants.
6	Faces/scenes	Adaptation to include famous faces appropriate to local setting such as president and first lady. Inclusion of photographs of events taken in the local area.	Additional support was needed for those with visual impairment to take part.
7	Word association	Adaptation to include local proverbs, riddles and well known songs. This required liaison with primary health staff resident within each village.	The concept of riddles proved difficult, as many rural elderly were unfamiliar with these. Proverbs and church songs engaged participants successfully.
8	Being creative	Adaptation to traditional crafts likely to be familiar to participants. Resource availability was a major concern. In Tanzania this included making of woven banana mats.	Participants were enthusiastic in carrying out this activity, even completing their mats at home to show the group the following week. It was noted that even those with more significant cognitive impairment were able to complete this well.
9	Categorising objects	Minimal adaptation was necessary to adapt objects to the local setting	A variety of real objects and photographs were used.
10	Orientation	Initial adaptation of this session involved a large easy to read map of the local area, and photographs of well known landmarks to assist the discussion.	It became clear that some rural elderly were unfamiliar with the concept of a map, even when not required to draw. Asking participants to describe a route was more successful
11	Using money	This session was adapted to include the concept of bargaining rather than fixed prices, likely to be more familiar in rural SSA. Prices and costs for discussion were locally relevant such as a bag of corn, or a day’s labour.	It became clear that some participants were less familiar with the concept of prices, but were able to discuss in approximate terms the cost of different items. It was important to recognise limited numeracy of participants.
12	Number games	This session was adapted to focus more on counting than numbers, participants were asked to count the number of animals in a picture for example.	It was recognised that numbers and calculation were challenging for all group members, but a focus on counting was more effective.
13	Word games	This session was adapted for a low literacy setting to allow tracing of letters with a marker pen, but also tracing of the letter shapes using rice or beans.	The use of beans to trace an outline rather than use of marker pens was more successful in practice. Use of marker pens was retained in the manual as an option for those with previous formal education.
14	Team quiz	This session was similar to that in the original manual and included a celebration and roundup of the group, with an activity selected from previous sessions by the group members themselves.	Participants selected the sounds and pictures game to be repeated. This session became a small celebration, and participants led a singing session and danced. Relatives and primary healthcare workers were invited and attended.

Phase IV: Testing the culturally adapted intervention

Following adaptation during phases I–III, a full CST programme of 14 sessions was completed at both sites. In Hai, of seven participants recruited, one refused to attend and one experienced rapid cognitive deterioration between recruitment and the start of the sessions and was unable to attend. The remaining five participants commenced and completed the programme. All participants were female, illiterate and had never attended school. All five were able to identify a primary caregiver who was able to assist at home, although responsibility for individual care tasks was often shared between younger family members. The mean age of participants was 82 years (range 77 to 85). The sessions were held in a village hall, with the support of the village committee. Attendance was good, despite transport difficulties, with only two sessions missed by one participant due to roads becoming impassable in heavy rain. A successful strategy was to meet carers prior to the start of the first session and agree times and dates for sessions. This helped to avoid clashes with village activities and market days. It also allowed the study team to emphasise the need for participants to complete the full programme of sessions. Agreed session times were 3.00 pm to 4.00 pm on Tuesdays and Fridays, which accommodated farm work in the mornings but allow participants to return home in daylight.

In Lalupon, 16 participants were recruited of whom 11 were female (68.8%), 8 (50.0%) had at least some formal education and all were able to identify a primary caregiver. The mean age was 75 years (range 66 to 82). Attrition levels were higher in Lalupon, with four drop-outs by the start of session three. As predicted in phases I–III, those not completing the programme had expected to be given medication. One further participant failed to attend after seven sessions, without giving a reason. Sessions were held in the town hall. Sessions ran from 9.00 am to 10.15 am on Tuesdays and Thursdays. At the request of participants, later sessions became three times weekly in order to avoid planned Christmas festivities.

Identifying appropriate buildings with suitable access was problematic at both sites. Available buildings were not designed for frail older adults, and in many cases, the available chairs were in poor condition or otherwise unsuitable. On occasions, essential items such as tables were removed for other activities or the group arrived to find the hall in use for another activity, resulting in disruption. This issue was addressed in Lalupon through payment for hire of the hall, but this approach has implications for the long-term sustainability of CST therapy in these settings.

Other infrastructure problems were recognised to pose an ongoing challenge. In Hai, one session was delayed when an electricity cable fell across the road that led to the village, completely blocking access. Other sessions were delayed due to weather and road conditions. Despite all these challenges, a full programme was completed at both sites.

Outcomes from the feasibility assessment

During informal feedback, carers noted that their relative appeared more active and more interested in activities and that they had noticed some general improvements in memory. There were no negative feedback comments from carers. Participants all stated that they had enjoyed the group and would have liked to attend for longer. The healthcare professionals running the group stated that the participants had gained in confidence during the sessions and had begun to participate more fully. It was also noted that their level of self-care had improved as the sessions progressed.

Phase V: Finalizing the culturally adapted intervention

After the phase IV feasibility study, the CST manual was further adapted and finalised. The general approach and structure of the CST sessions were felt not to require substantial change. Most changes were minor and related to individual programme activities. These had generally been adapted during the sessions as issues arose. One unexpected challenge was the degree of uncorrected sensory impairment amongst participants. This was so widespread that it would be impractical to exclude participants for this reason. The issue was partially addressed through visual acuity testing and provision of reading glasses and verbal facilitation for those with greater levels of impairment. This was felt to be a successful strategy and required an additional facilitator to be present.

Another challenge in Tanzania, not identified in phases I–III, was confusion over names, with the concept of one lifetime name less fixed than in most HICs. Women in rural areas receive other names on marriage, and both names remain correct; it is also customary to refer to women as ‘mother of their child’. This caused some confusion in the introduction and greeting section for both facilitators and participants. The strategy for managing this was to agree on preferred names with the group, even if these differed to those given in the recruitment phase.

The finalised CST-SSA manual is available as supplementary material online or from the authors on request.

Discussion

We have successfully adapted CST for use in low-resource settings in SSA (CST-SSA). The FMAP proved a useful framework for the adaption and ensured that the adapted manual retained the same basic elements and structure as the original CST programme. The FMAP framework allowed a structured approach to ensuring cultural acceptability. Most of the key adaptations identified during phases I–III worked well in the feasibility study sessions. Despite the cultural and educational differences between Lalupon and Hai, it was possible to develop a single treatment manual for both sites.

It was encouraging that despite resource and infrastructure challenges at both sites, a full CST programme was completed. Attrition occurred in most cases due to expectation of being given medication and failure to understand non-pharmacological treatment. These expectations must be carefully managed prior to enrolment in CST.

Nevertheless, a lack of access to medical treatment for older adults with multiple comorbidities in a resource-limited setting is a challenge which will need to be addressed if CST is to be clinically effective and financially sustainable in this setting. In Lalupon, this was addressed through involvement of a doctor. In the longer term, appropriate referral routes to primary and secondary healthcare services should be put in place to address comorbidities.

The CST feasibility studies were carried out by trained and experienced occupational therapists, nurses and doctors. The shortage of specialist healthcare workers across much of SSA makes this approach unsustainable. It is likely that it will be necessary to train non-specialist healthcare workers and carers in delivery of CST if it is to be used routinely.

In the UK, CST techniques have already been applied successfully as an intervention within South Asian ethnic groups who did not have English as their first language (Mahmood, Ahmed, Orrell, & Kinsler, 2012). This suggests that, provided that it is modified to be culturally specific to the setting, CST can be used effectively in a variety of populations. We believe that if our interventions are successful then the results will be applicable to other settings across SSA.

Conclusions

CST was successfully adapted for use in SSA and feasibility assessed in rural Tanzania and Nigeria. CST appears to be a potentially feasible non-pharmacological intervention to help manage dementia in this setting. Despite drop-outs, the response to the CST sessions by participants was overwhelmingly positive. We plan to complete a trial of CST in both study sites to formally evaluate the effectiveness of CST in treatment of symptoms of dementia and in improving quality of life in people with dementia and their carers.

Footnotes

Acknowledgements

We wish to acknowledge the help of all health care workers, officials, patients, carers and family members who assisted in this study. We also wish to thank Professor Martin Orrell (University of Nottingham, UK) and Dr Aimee Spector (University College London, UK) for their helpful advice and support.

Author contributions

AO, RW, CD, WG and DM contributed to the design/conception of the article. SM, OO, S-MP and WG contributed to the literature search. SM, OO, AS, S-MP, AK, GM and BA contributed to the data collection. SM, OO, S-MP and WG contributed to the data analysis. All authors contributed equally for the interpretation of results and critical review of the manuscript. SM, OO, S-MP and WG contributed to the writing of first draft.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by a grant from Grand Challenges Canada (Grant number: 0086-04).

Sarah Mkenda is a senior occupational therapist and head of the occupational therapy school at Kilimanjaro Christian Medical University College, Moshi, Tanzania. She has BSc and MSc degrees in occupational therapy from Brighton University, UK, and a growing interest in academic research, with a particular interest in cognitive stimulation therapy.

Olaide Olakehinde is a senior nurse at the University College Hospital, Ibadan, Nigeria. She has a specific interest in care of the elderly and dementia. She is the lead nurse in Nigeria for the Identification and Intervention for Dementia in Elderly Africans (IDEA) study.

Godfrey Mbowe is an occupational therapist based at Kilimanjaro Christian Medical Centre, Moshi, Tanzania. He has been heavily involved in the wider IDEA study.

Akeem Siwoku is an occupational therapist and is currently studying for a degree in psychology. He was the lead occupational therapist for the IDEA study in Nigeria. He has a particular interest in research in the field of neuroscience.

Aloyce Kisoli is a research nurse based at Kilimanjaro Christian Medical University College, Moshi, Tanzania. He has a specific interest in dementia and has been involved in research in the Hai district of Tanzania since 2010. He has authored 12 academic publications to date.

Stella-Maria Paddick is an academic clinical fellow in psychiatry at Newcastle University. She is currently studying for a PhD and was clinical lead for the IDEA study in Tanzania. She has authored over 20 academic publications, most as lead author, and has a specific interest in dementia and global health.

Babatunde Adediran is a physician with a research and clinical interest in community health. He is the lead clinician for the IDEA study in Nigeria. He has acted as a consultant for the Nigerian Ministry of Health and the WHO.

William K Gray is a medical statistician based at Northumbria Healthcare NHS Foundation Trust, UK. He has authored over 80 academic publications and was a co-investigator on the IDEA study.

Catherine L Dotchin is a geriatrician based clinically at Northumbria Healthcare NHS Foundation Trust, UK, and academically at Newcastle University, UK. Her PhD work was on the prevalence and aetiology of Parkinson’s disease in the Hai district of Tanzania, and she has a specific interest in global health and the elderly. She was a co-investigator on the IDEA study.

Akinpelumi Adebiyi is a physician and epidemiologist based at University of Ibadan. He led on the investigation of awareness-raising strategies for the IDEA study in Nigeria. He has been involved in a number of high-profile public health campaigns across Nigeria, notably with regard to smoking cessation.

Richard W Walker is honorary professor of ageing and international health at Newcastle University, UK. Clinically, he works as a geriatrician at Northumbria Healthcare NHS Foundation Trust. He has authored over 150 academic publications and is UK PI for the IDEA study. He has led on studies of the epidemiology of stroke, dementia, Parkinson’s disease, epilepsy, hypertension and atrial fibrillation in Africa. His UK research portfolio focuses on Parkinson’s disease management.

Declare Mushi is a senior lecturer in social sciences at Kilimanjaro Christian Medical University College. He has a PhD in public health from the University of Heidelberg, Germany. He was Tanzanian lead for the IDEA study was a specific focus on dementia awareness-raising strategies. He has an extensive research background with a particular interest in the social aspects of non-communicable disease management in Africa.

Adesola Ogunniyi is a professor of neurology at Ibadan University. He is the overall principal investigator for the IDEA study. He has a distinguished track record in stroke and dementia research in Nigeria and was the clinical lead for the first study of the prevalence of dementia in Nigeria. He has advised numerous scientific and medical bodies including the Nigerian Ministry of Health, the WHO and the US NIH.

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