Challenges with phenotyping dementia in a low resource setting; Frontotemporal dementias (FTDs) as a case study in Nigeria

Abstract

AbstractBackgroundPhenotyping dementia is a major problem in low resource settings like Nigeria and it has implication for research and management of people with dementia. Challenges associated with phenotyping dementia are embedded in poor health financing and lack of health personnel. This study aimed at scoping studies on dementia in Nigeria to identify those related to frontotemporal dementia (FTD) and describe the pattern of its presentation in a memory clinic as a means of highlighting challenges of phenotyping.MethodA literature search of studies on dementia that reported FTDs as a phenotype and or described profile or pattern of FTDs in Nigeria was conducted. In addition, a review of hospital records of all persons clinically diagnosed with dementia (PWD) using the ICD 10 criteria was conducted. Those with FTD phenotypes were identified. The cohort comes from a memory clinic in University College Hospital, Ibadan, Nigeria. Records of these individuals with FTDs were reviewed and data (including sociodemographic details, clinical profile and pattern of presentation) extracted for case series report.ResultsLiterature search yielded 2 studies; a retrospective study that reported dementia phenotypes including FTD and a case report. From a total of 216 PWD, we identified and included 14 persons with FTDs (6.5%) in this case series. Initially, 32 records of tentative diagnosis of FTD were identified, however, 18 persons with incomplete evaluation after the initial assessment were excluded. The mean age (±S.D) of those included (n = 14) is 67.7(±8.4). The main presenting complaints were behavioral with 57.1% presenting to the hospital at least a year after onset of symptoms. The most common behavioral problem identified was personality change accompanied with disinhibition in 9 persons (64.3%). Symptoms started before age 60 years in only one person. Two of the 14 persons had an initial diagnosis of schizophrenia until subsequent review with neuroimaging. Delay in carrying out neuroimaging due to financial constraint was a major challenge in making a diagnosis.ConclusionThere is paucity of data on FTDs in Nigeria. Out‐of‐pocket payment for assessment is a major setback in phenotyping dementia and it has implication on both clinical practice and research.