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August 2014
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Jhivan Pargassdiscusses a fascinating new study coming out of UWI with the Faculty of Medical Sciences’ Dr. Gershwin Davis, Senior Lecturer in Chemical Pathology, Professor Amanda McRae, Professor of Human Anatomy, and Professor Robert Stewart of the Institute of Psychiatry, King’s College London. As they trace the prevalence and socio-economic cost of dementia in Trinidad and Tobago, she learns that dementia is a complex collection of complications. Imagine that an elderly loved one, perhaps an aunt, started to forget the names of everyday objects or recent events. She remembers the family luncheon she attended ten years ago, but not what she had for breakfast, or the name of your recently born baby. The changes are small; you chalk them up to old age. But, as time progresses,she is no longer able to find the right words to express herself, and is in an increasingly confused state of mind. She develops mood swings and personality changes, loses interest in what she once loved, and forgets how to conduct daily tasks. You take her for a checkup and the doctor hits you with a staggering blow: she is showing symptoms of dementia.* What makes dementia confusing is that it is not actually a disease, but rather a collection of symptoms that can be caused by various diseases. The leading cause is Alzheimer’s disease, but dementia can also develop due to brain damage from an injury or stroke, and from other diseases such as Parkinson’s and Huntington’s. What might be even more confusing is trying to find out how many people here in our little twin islands suffer from this debilitating and incurable condition, and the costs incurred by having the disorder, or having to take care of someone who does. However, that is soon to change, thanks to a project being done in collaboration with the HEU Centre for Health Economics, and spearheaded by a team of remarkable people from the Faculty of Medical Sciences, Dr. NelleenBaboolal, Senior Lecturer in Psychiatry, Dr. Gershwin Davis, Senior Lecturer in Chemical Pathology, and Professor Amanda McRae, Professor of Human Anatomy. They areassisted byProfessor Robert Stewart (Institute of Psychiatry, King’s College London), who is a founding member of the 10/66 dementia research group*. The two-part project, titled the Prevalence and Economic Cost of Dementia Project in Trinidad and Tobago, has a fairly detailed history. It was officially launched in April 2012, but the impetus for this particular study was there long before. In 2003, the three project leads were working on a project that focused on identifying biomarkers for dementia. Most of the study cohort was comprised of patients from Dr. Baboolal’s Memory Clinic, founded in the same year. As the study progressed, one question was repeatedly asked: “How prevalent is dementia in T&T?” So whose idea was it to add another branch to the tree? Prof. McRae says with a chuckle that it was probably all three of them at the same time. They agree that their individual, yet greatly similar interests in the disease brought them all together for what Prof. McRae calls “the greatest collaboration on the face of the earth” and what Dr. Davis describes as “a fantastic merger, a perfect fit”. Both insist that Dr. Baboolalwas at the core of it all, given that the cause is one “dear to her heart”, and the initial project began with her Memory Clinic patients. DrsBaboolal, Davis and Professor McRae have been working together for ten years and together they form the Dementia Awareness and Research Group of Trinidad and Tobago (DARTT).*** The prevalence study explores the multidisciplinary nature and extent of dementia, as well as the cost of the illness.In essence, the study seeks to establish the prevalence of dementia and the associated risk factors amongst the elderly population as well as evaluate the economic burden of the illness on households. It only really took off in 2014, as, with any good undertaking, there were a few “teething problems”. However, these setbacks were taken in stride and a pilot study in Mayaro/Rio Claro was conducted by a team of five field workersin 2012. 13 persons in the age ranges 60-69, 70-79, 80-89 and 90 and above were interviewed using the 10/66 instrument and the socio-economic questionnaire. This investigation allowed for the testing of the instruments to be used in the actual study. The feedback was very positive, which delighted the project leaders, as participants were cooperative and expressed interest. To adequately explain why this study is so extraordinarily important, we must first understand that the population of Trinidad and Tobago is aging. Dr. Davis explains that one of the main problems with aging is a change in the disease pattern from one of viruses and communicable diseases, to chronic non-communicable diseases, e.g. Alzheimer’s.With the increase in the numbers of the elderly, a predicament arises. But what is the extent of the problem? That’s the question they’re trying to answer, and this is really the driving force behind the study. The results of many prevalence studies are readily available, but these originate mainly from the developed world, with few in the Caribbean. Three Hispanic-Caribbean countries, Cuba, Puerto Rico and the Dominican Republic, have done such studies, but the DARTT study is the first of its kind in Trinidad and in the English-speaking Caribbean, which gives it even more weight. Prof. Stewart explains that determining a central figure such as the prevalence of dementia in Trinidad and Tobago is critical because for the first time, it will provide the Government, and anyone else who wants to know, with a picture of how common dementia is and the socio-economic cost that comes with it. He explains that the results will also have enormous transformative implications for policy, as they will highlight the economic reasons for investing in dementia. He paraphrased Alzheimer’sDisease International, according to whom if dementia care were a country, it would be the world’s 18th largest economy, given that in 2010, the worldwide costs of dementia exceeded 1% of global GDP at US$604 billion. As mentioned,this is a two-phase project. The goal of the completed first phase was to determine where individuals in the various age bands reside, which speeds up the process forenumerators conducting the survey in the field.2,000 persons from 120 electoral districts were selected at random in phase one, all of whom will be revisited in the second phase, which is currently in progress.All selected persons will have their cognitive function assessed using the survey instruments developed by the FMS team, the HEU and Prof. Stewart.If everything goes smoothly, data collection and results analysis should be completed around October 2014. Of course, none of this would have been possible without funding. Very early on, the team received a grant from the Government of Trinidad and Tobago, which enabled them to do thegroundwork, but it was a TT$550,000 grant from the UWI-Trinidad and Tobago Research, Development and Impact (RDI) Fund that allowed the study to launch. However, as with all funding, the need for more persists. The size of the grant required the team to “prune” other aspects of the research to ensure that the focus would be on the core aspects: prevalence and socio-economic cost. It also means that the study is currently focused solely in Trinidad. The project is a timely one, as dementia becomes more and more relevant worldwide, especially due to increasingly aging populations. Its relevance is often driven by the Alzheimer’s Association, an organization which is able to articulate to governments the need for increased attention to the disease, and is enormously influential in pushing for more research to be done in the field. The local branch of the Alzheimer’s Association is very concerned with “upping the agenda” to guarantee that research into Alzheimer’s, the main cause of dementia, is a high priority. The tireless work of such organisations coupled with studies such as this, is what keeps the argument going for more treatments and better patient care. The data that the study will provide is fundamental to our local context, as the first thing someone usually asks when discussing the importance of any disease is “how common is it?” If that basic question can’t be answered, you’re stuck. There’s always guesswork from international studies, but no external data can supplement results obtained from a local study, and this is just what the DARTT prevalence study will supply to Trinidad, and soon, to Tobago. The team also plans to take the project even further, by following the cohort of persons with dementia to look for associated risk factors by doing blood testing and neuroradioimaging, by studying persons aged 90 and above, and by informing policy makers regarding aging. They also plan to conduct similar studies in other Caribbean islands, and, once funding becomes available, there will be follow-up studies focusing specifically on various kinds of dementia. For now, the goal is to complete phase two have the results analysed and published. Once this is done, itwill provides a more accurate picture for everyone—not justthe government, but society in general, because as Prof. Stewart so rightly put it,“Dementia belongs to everyone; it is everyone’s business.”
* The Pan-American Health Organization (PAHO) defines dementia is a syndrome that affects memory, thinking, behaviour and ability to perform everyday activities. The organization estimates that the number of people living with dementia worldwide is currently estimated at 35.6 million.** The 10/66 Dementia Research Group is a collective of researchers carrying out population-based research into dementia, non-communicable diseases and ageing in low and middle income countries.*** DARTT is a voluntary non-profit which aims to educate the population, promote brain health, diagnose afflicted persons, support patients, families, caregivers and conduct research on Alzheimer’s disease. Much more information on the study and the group’s other fascinating and pioneering work is available on the website: www.dartt.org.ttThe greatest collaboration on earthThe two-part project, titled the Prevalence and Economic Cost of Dementia Project in Trinidad and Tobago, has an approach unique to Trinidad and Tobago as it is the first survey of a national population, rather than a geographic catchment.The project itself has a fairly detailed history. It was officially launched in April 2012, but the impetus for this particular study was there long before. In 2003, the three leads were working on a project that focused on identifying biomarkers for dementia. Most of the study cohort was comprised of patients from Dr. Baboolal’s Memory Clinic, founded in the same year. As the study progressed, one question was repeatedly asked: “How prevalent is dementia in T&T?” The enormous economic cost of care
“While persons living with dementia can still have a good quality of life provided that they receive adequate care, they have unique needs which start early in the disease and evolve constantly over time, which are associated with higher costs of care compared with other long-term care users. In this context, the socio-economic component of the study explores the direct cost of medical care as well as the direct cost of formal care (paid home or care in homes) and the indirect cost of informal care (care provided by the unpaid family caregivers). It is expected that this information will provide decision makers with the information necessary to formulate policies to effectively address the needs of those living with or affected by dementia in Trinidad and Tobago”. Both Prof. McRae and Dr. Davis emphasise that dementia not only affects the patient, but family members as well, as they may have to relinquish their jobs, and therefore their income. People who provide this informal care often also end up damaging their own health because caring for a dementia patient can be extremely emotionally and physically demanding, especially in the later stages, and not all families can afford formal care. In thinking about caring for dementia patients, it is not always considered that a significant amount of money also goes towards the healthcare of the caregivers. The International Alzheimer’s Association reports that in 2013, due to the physical and emotional burden of caregiving, Alzheimer's and dementia caregivers had $9.3 billion in additional healthcare costs of their own. |
Dementia is a chronic disease that can take up to around ten years to reach the end-stage, and accompanying it is a massive economic burden. For this reason, the HEU Centre for Health Economics is a partner of the study, Director Professor Karl Theodore lending his expertise to the project. The HEU describes briefly the socio-economic component of the study: