Report on the dementia situation in Jamaica
Mapping Dementia Care in Jamaica
Rochelle Amour1, Ishtar Govia1, Janelle Robinson1, Tiffany Palmer1, Marissa Stubbs1, Adelina Comas-Herrera2, Wendy Weidner3
1Epidemiology Research Unit, Caribbean Institute for Health Research, The University of the West Indies, Mona Campus, Jamaica
2London School of Economics & Political Sciences, UK
3Alzheimer’s Disease International, UK
Introduction
Dementia is not a normal part of ageing, but a disease of the brain which results in cognitive decline and typically requires 24-hour care in its later stages. This reality has major implications for Jamaica’s health and social care landscape due to a rapidly ageing population. This document draws from a 100+ page in-depth desk review and situational analysis of the policy context and dementia care landscape in Jamaica.
This work was conducted by the STRiDE Jamaica Research Team at the Caribbean Institute for Health Research (CAIHR), University of the West Indies, Mona, as part of the STRiDE Dementia Research Project (Strengthening Responses to Dementia in Developing Countries). STRiDE Jamaica executed a multi-pronged and extensive research program (2018-2022) in response to the 2017 World Health Organisation (WHO) commitment to the Global Action Plan on dementia (GAPD).
Executive summary
- Current trends in non-communicable disease (NCD) rates and potential impact of ‘long-COVID’ likely to lead to increased incidence of dementia in Jamaica
- Dementia is a multisectoral issue. Opportunities for inclusion in related policies have been mapped and identified by STRiDE Jamaica over the past 4 years
- Dementia is only one of many diseases which depends heavily on long-term care. Investment in the care market and support for caregivers can stimulate the economy and benefit several other overlapping vulnerable groups
- Several stakeholders call for better education and awareness of dementia among health and social care professionals and the general public
- STRiDE Jamaica has produced a body of data and has identified further opportunities for local data collection to help inform practice
Why should dementia be a policy priority for Jamaica?
Over 70% of older Jamaicans have a chronic illness, which is a dementia risk factor. Persons over 65 who have dementia are likely to have up to 4 other NCDs (such as cardiovascular disease and diabetes)[i]. However, due to the progressive nature of age-related dementias, the cost of dementia care in later life is about 57% higher than the cost of other diseases, including cancer[ii]. With its ageing population, Jamaica is likely to see a further increased prevalence of chronic diseases, including dementia, over the next few years. With increased prevalence comes increased costs.
Currently, Jamaicans lack equitable access to medication for common NCDs, and only about 20% of the population has any insurance (11% are government workers and 8% are private-sector workers). Yet, less than 30% of senior citizens are enrolled in the National Health Fund’s (NHF) highly commendable, best practice programme, Jamaica Drugs for the Elderly (JADEP). Further, participation is 170% higher among higher socio-economic groups (who are more likely to be able to afford private insurance) than Jamaicans in lower socio-economic groups. In addition, dementia / Alzheimer’s disease – the most common type of dementia- is not listed as an NCD covered by the NHF.
The lack of access means most older Jamaicans, particularly those from low-income brackets, may be at an increased risk of dementia, and will require long-term care at the government’s expense, resulting in, for example, steep increases in long-term care cases as well as persons who are abandoned by family members at public health facilities social cases. The issue may be further compounded by the impact of ‘long-COVID’ on brain health, which may contribute to an increased prevalence of persons with cognitive decline who are reliant on the public sector.
“It’s something that is going to and can affect each and every one of us, it could be in our future. So it’s not something to disparage. It’s something to try to learn about, to understand and put in the methods of managing the problem.” (STRiDE Research Participant – Family Physician).
In cases where persons can provide care for their loved ones at home, household income is typically reduced as persons must leave their jobs or take long periods of time off to provide care. This in turn compromises their contributions to the economy. The health of these informal caregivers is also jeopardised in the process because of the impact on their mental health and their lower prioritisation of their own physical health maintenance. [iii]
A family’s first port of call is usually their GP (General Practitioner/ Family Physician). But globally, over 60% of healthcare practitioners still believe that dementia is a normal part of ageing[iv]. Many persons never receive a formal diagnosis, and families are left unprepared to adequately care for their loved one. Though there are digital or fluid biomarker screening and diagnostic tools which can assist, these are currently unavailable locally.
Without sufficient access to mental health, social, neurological or allied health professionals, or affordable dementia-related medication to help manage unpredictable symptoms of the disease; without social grants or respite care programmes, formalized caregiver organisations or formal clinical guidelines on dementia, families and other caregivers are left to navigate caregiving on their own.
Navigating these challenges can be quite overwhelming. This can, in turn, lead to unintentional or perhaps even intentional instances of financial abuse. Untrained and stretched caregivers are left unchecked and unsupported. Persons living with cognitive impairment and dementia, lacking the capacity to make sound decisions, may, in these instances, experience physical, verbal or emotional abuse as. This has many direct and indirect costs to financial institutions, protective services, social services and other stakeholders. During COVID, implemented measures to reduce the spread even further complicated family care arrangements[v].
“When you hear people saying that they have somebody who is suffering from this, you’ll never understand until you get the experience, when it happens to you.” (STRiDE Jamaica Research Participant, unpaid family caregiver)
The immense impact of dementia care on families in Jamaica and the lack of formal support for these caregivers and people living with dementia currently warrants urgent policy attention. But dementia is not the only disease which depends heavily on this kind integrated, person-centred, short- and long-term care that prioritises continuity of care. Families looking after persons living with disabilities, mental illness, liver disease and other chronic illness are also in the same boat.
Addressing dementia in Jamaica can reduce the immense costs of social cases and underemployment caused by our current overdependence on informal care. It can also safeguard the interests of hundreds of thousands of persons with overlapping care needs.
The intersection of dementia with several other socio-economic and health issues necessitates strategic inclusion of the disease across related plans and policies, including the Non-Communicable Disease Strategic Plan, the National Council for Senior Citizens White Paper, Mental Health Strategic Plan, Primary Care Renewal, Palliative Care Policy, and development of a LTC policy. Nothwithstanding these possibilities for integrating dementia-related priorities into existing plans and policies, the STRiDE Jamaica team’s research also suggested that a specific, evidence-based, tailored approach to a national standalone plan must be encouraged. This type of plan is more likely to gain approval and funding, particularly if it can be clearly demonstrated how a government can stand to benefit from its implementation. In addition to local discourse aimed at implementing dementia-related policy, regional conversations are paramount and strategic. The STRiDE Jamaica team’s research suggested that it may be most strategic to develop and finance such a stand-alone plan at the regional level, for example through the Caribbean Community (CARICOM).
Putting dementia on the policy table: Implications & Opportunities
While Jamaica does not yet have a national dementia policy as per its commitment to the GAPD, the Mental Health Unit at the Ministry of Health and Wellness (MOHW) included dementia in its most recent strategic plan. Dementia specific issues included public education and how to detect dementia and improve training of health workers in the early recognition and treatment of dementia. Furthermore, the STRiDE team initiated a GDO Oversight Committee which included participation of MOHW and PAHO representatives. Its action items align with all of the WHO Global action plan action areas, however it is unclear whether these are practical or applicable in the current context of the dementia care system, or whether they will receive dedicated funding. The strategic plan also acknowledges concerns around current gaps in mental health specialist posts and staffing in the public sector which presents an urgent need to update administrative structures to attract and retain its healthcare workers and specialists. This is a major policy undertaking which falls far beyond the scope of the Mental Health Unit, but one which is sure to benefit multiple sectoral programmes and public health needs.
A formal LTC policy or strategy is especially crucial, because even though care homes may seem like a logical option to help mitigate many of the consequences of dementia care and informal care in general, the average cost of a private nursing home is almost 3 times that of the monthly minimum wage, or over 90% of the average household income. Even when families can afford it, they are skeptical because over 80% of private facilities in Jamaica are unregulated, lack the infrastructure and the capacity to effectively care for dementia patients. Increased government regulation via multisectoral, funded policy presents an economic opportunity for growth, or even boom of the LTC sector in Jamaica. With more suitable and safe long-term care market options, Jamaicans who can afford it will likely opt for in-home nursing care or placing their loved ones in a facility so they can remain in the job market. Those who might not be able to afford it might turn to relatives living abroad to send remittances to cover care costs- which is already a key characteristic of the local dementia care landscape, but unsustainable.
Our research on policy making processes has revealed several factors which affect policy decisions and impede quick action, such as the need for legislation to faciliate more dementia inclusive services (e.g. in banking and financing services). This type of legislation will help families navigate the issue of reduced capacity in dementia, or guide financial institutions in protecting clients living with dementia. The current absence of such legislation can seriously hinder the potential of any policy.
What about stigma? The call for public education and awareness
“I think people deal with people like this much better than when I was growing up.” (STRiDE Jamaica Research Participant, unpaid family caregiver)
Stigma is indeed a major barrier for people with dementia and for their families. While many research participants shared that community reactions to the disease have improved in past decades, misunderstanding, fear or discomfort remain and can lead to social isolation or mistreatment of persons living with dementia.
STRiDE Jamaica’s contributions to dementia awareness
STRiDE Jamaica has engaged in over 90 educational events between 2018 and 2022, including information booths at ministry and university events, talks at churches, media appearances, and presentations at policy meetings and professional and community organisations. STRiDE Jamaica Lead Dr Ishtar Govia has also provided free virtual dementia care management consultations to over 70 Jamaican families since 2020, with many of them being repeat clients.
Still, caregivers, health and social care workers and members of the general population overwhelmingly called for increased public education and awareness to help mitigate the risks associated with stigma. Specifically, participants called for formal dementia-specific training for nurses, care home workers and health and social practitioners. Others requested that dementia sensitisation begin in schools so knowledge and awareness can be cultivated with young people. Some suggested public-private partnerships to raise awareness and funding for dementia education and support for caregivers. Research with informal caregivers revealed a particularly pressing need for post-diagnostic supports in the forms of carer support groups, caregiver relief and clearer signposting to and provision of trustworthy sources of information and advice.
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Putting the data to work
Jamaica is extremely fortunate to be a participating country in the STRiDE Dementia Project, which was the first multi-country and multi-sectoral project of its kind, aimed at practical, real-world outcomes. Policy briefs with recommendations drawn from robust research conducted over the past four years will be published in the coming months, along with several academic articles and an online platform of evidence-based interventions to support persons living with dementia and their loved ones in low and middle-income countries. However, Jamaica is still in need of routine systematic data collection on dementia in the public and private sector to better grasp the current scale of dementia, which can help qualify the country for further dementia-related international funding. The addition of anti-dementia medication to the JADEP programme can be a helpful data capture tool as it registers rates of usage. Another opportunity, as put forward by the STRiDE Jamaica team in 2019, is the disaggregation of mental health clinic data to specify dementia diagnosis with an attention to differential diagnosis, and as potentially possible by the implementation of the WHO’s mhGAP Dementia Module. As the Health Systems Strengthening Programme partnership between the Ministry of Health and Wellness and the InterAmerican Development Bank progresses, this might prove an easy win.
Conclusion and call to action
The STRiDE Jamaica research team welcomes you, our valued stakeholder, to be part of future engagement activities and other ground-breaking programs of research. We also welcome you to raise the issue of dementia with your team, and share this information widely. Ask about this issue in your community and encourage your office or family to help raise awareness during World Alzheimer’s Month in September. Change may not be possible overnight, but it moves faster when we work together.
References
[i] Alzheimer’s Research, UK
[ii] Health care costs for dementia found greater than for any other disease (NIH, 2015)
[iii] Mapping Long-Term Care in Jamaica: Addressing an Ageing Population (Govia et al, 2021)
[iv] Alzheimer’s Disease International World Alzheimer Report (2019)
[v] The Experiences of Caregivers of Persons Living with Dementia in Jamaica during COVID-19 (Stubbs et al, 2021)