Identification and Intervention for Dementia in Elderly Africans (IDEA) study: the quest for an innovative management in sub-Saharan Africa
Adesola Ogunniyi is Professor of Medicine (Neurology) at the University of Ibadan (UI) and Honorary Consultant Physician/Neurologist to the University College Hospital, Ibadan, Nigeria (UCH). He is the principal investigator of the Identification and Treatment of Dementia in Elderly Africans (IDEA) Study, a collaborative research involving Tanzania, Nigeria and the United Kingdom. He was the former Chair of the UI/UCH Institutional Review Board (2011-2014) and has been involved with dementia research for over two decades.
Demographic transition and population ageing worldwide have increased the number of people at risk of developing dementia and this is a global concern. This is particularly so in low and middle income countries who face additional problems of conflict and poverty whilst being ravaged by communicable diseases. It is estimated that about 44 million people are currently living with dementia and the number is expected to rise to 135 million by 2050 with 71% residing in low and middle-income countries1. The increase in dementia burden and lack of adequate facilities for care provision in sub-Saharan Africa (SSA) call for innovative ways of meeting the challenges posed. The development of any effective treatment that can be administered by non-specialists, including lay healthcare workers at community level appears to be a step in the right direction. Cognitive Stimulation Therapy (CST) is a non-pharmacological, group-based management strategy that has been shown to be beneficial for treating individuals with mild to moderate dementia in western countries2-4. It has however not been used in SSA.
The Pilot Study
I present our experience with pilot-testing CST, with a view to highlighting the challenges faced in our two-country study in Africa before the main therapy session. The study took place simultaneously at two sites - Lalupon in Lagelu local government area, Oyo State, Nigeria and Hai District, a demographic surveillance site in Tanzania. Ethical approval was obtained from respective Ethics Research Committees at the University of Ibadan, Nigeria and Kilimanjaro Christian Medical College, Tanzania. Eligible participants were selected based on prior screening for cognitive impairment and second-stage dementia diagnosis using the validated IDEA (Identification and Intervention for Dementia in Elderly Africans) protocol. The adapted CST was delivered in 14 sessions that were carried out twice weekly. Although eight participants are considered ideal for each group session, we allowed liberal participation for the pilot phase. There were 5 participants in Hai District while 16 individuals started the therapy session in Lalupon, although only 11 eventually completed the seven weeks programme.
Challenges
A number of challenges were faced during our pilot phase. The challenges identified were:
- Attrition of participants
The reasons for the attrition of participants that I deduced were: distance of the venues from the homes of participants; engagement with other family matters, lack of local transportation; early and rather premature impression of lack of benefit; and fear of domination by others in the group. The latter was evident when sessions demanded literacy and those who never attended school felt inadequate. My proffered solution is to do everything possible to sustain interest of participants such as gentle persuasion and altered group dynamics so that every participant has a say. It is important to note that the initial enthusiasm of participants may diminish as time passes on.
- Co-morbidities
Co-morbidities like osteoarthritis and sensory deprivation, being common problems in old age, and even malaria fever, can affect participation. For instance, all the 5 individuals selected in Hai district coincidentally had visual impairment due to refractive errors. Consequently, sessions that needed visual cues had to be rescheduled until reading glasses were purchased.
- Medical Check Ups
An unanticipated need to include medical check up of participants arose in Lalupon. Blood pressure measurement had to be done as well as management of ailments. In addition, participants were given health education during the CST sessions. This resulted in improved cooperation. There is an unwritten expectation that each encounter with health care workers must go hand-in-hand with being examined and supply of medications.
Positive Outcomes
Qualitative assessment at the end of the therapy sessions showed that CST was effective in bringing older persons “out of their shells” with better participation in communal events as well as noticeable behavioural changes including improvement in personal hygiene. Most of the sessions were considered stimulating. The participants looked forward to subsequent sessions and they became more interested in current events. They expressed satisfaction with the opportunity to interact with their peers and felt honored to have been thought of despite their age. Living with others as an indication of social interaction had earlier been reported to improve cognitive performance in the Indianapolis-Ibadan Dementia study5. We believe that this could be partly responsible for the changes observed.
Detailed quantitative assessment of cognitive performance and the economic benefits will be carried out during the main trial of CST at the two sites. This pilot testing however showed that CST has the potential of being a cost-effective treatment modality for mild to moderate dementia in SSA.
References:
1. Alzheimer Disease International (2014) The rising Impact of dementia. ADI Global Perspective, 24(1):3.
2. Spector A et al. (2008). Cognitive stimulation for the treatment of Alzheimer's disease. Expert Rev Neurother, 8(5): 751-7.
3. National Collaborating Centre for Mental Health (2007) National Clinical Practice Guideline Number 42. Dementia: A NICE-SCIE Guideline on supporting people with dementia and their carers in health and social care. London, UK: National Institute for Health and Clinical Excellence.
4. Woods B et al (2012) Cognitive stimulation to improve cognitive functioning in people with dementia. Cochrane Database Syst Rev, 2:CD005562.
5. Ogunniyi A et al (2000) Epidemiology of dementia in Nigeria: results from the Indianapolis-Ibadan study. Euro. Neurol, 7: 485-490.
Grand Challenges Canada is acknowledged for funding the study through Grant # 0086-04. Community leaders and study participants at both study sites are appreciated.
