SUNDAY 3RD AUGUST, 2014 – UWI TODAY
9
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’s Disease 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 for enumerators conducting the survey in the
field. 2,000 persons from120 electoral districts were selected
at random in phase one, all of whomwill 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 thiswouldhave beenpossiblewithout
funding. Very early on, the team received a grant from the
Government of Trinidad and Tobago, which enabled them
to do the groundwork, 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
andmore 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 and have
the results analysed and published. Once this is done, it
will provide a more accurate picture for everyone—not just
the government, but society in general, because as Prof.
Stewart so rightly put it, “Dementia belongs to everyone; it
is everyone’s business.”
ects memory, thinking, behaviour and ability to perform everyday activities. The organization
ated at 35.6 million.
n-based research into dementia, non-communicable diseases and ageing in low and middle
ealth, diagnose afflicted persons, support patients, families, caregivers and conduct research
inating and pioneering work is available on the website:
The greatest
collaboration on earth
The two-part project, titled the
Prevalence and
Economic Cost ofDementiaProject inTrinidad
andTobago
, 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 inApril 2012, but the impetus for
this particular studywas there longbefore. In 2003,
the three leads were working on a project that
focused on identifying biomarkers for dementia.
Most of the study cohortwas comprisedof patients
fromDr. Baboolal’s Memory Clinic, founded in the
same year. As the study progressed, one question
was repeatedly asked:“Howprevalent is dementia
in T&T?”
The enormous economic
cost of care
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 HealthEconomics
is a partner of the study,
Director Professor Karl
Theodore l end i ng h i s
expertise to the project. The
HEU describes briefly the
socio-economic component
of the study:
“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 comparedwith other long-termcare 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 decisionmakers 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 in2013, due to thephysical
and emotional burden of caregiving, Alzheimer’s
and dementia caregivers had $9.3 billion in
additional healthcare costs of their own.
s
Professor Amanda McRae
