Mrs C and her family, current experience | Jamaica

23 Feb 2022

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About five years ago Mrs. C started to become forgetful. Now, 75 years old, Mrs. C hardly ever leaves her room in her daughter’s house where she was moved when it became clear that she could no longer look after herself. The daughter and her granddaughter help her with dressing, eating, washing and going to the bathroom. The family has to make sure that food is not too chunky as Mrs. C has difficulty swallowing. It is difficult for the daughter’s family to go away together for the day as someone always needs to be around to look after her. The constant care needs in addition to her own family responsibilities also pose a strain on Mrs. C’s daughter has her own health issues. Mrs. C’s other children visit during holidays but find it difficult as she cannot always remember who they are.

Mrs Carol will likely visit her General Practitioner (GP) as primary care providers are usually the first point of contact within Jamaica. At this stage of her illness, as evidenced by difficulty swallowing, there is a high possibility that Mrs Carol would have already visited her GP, but either did not receive a diagnosis, received a misdiagnosis or received a provisional diagnosis of dementia and was referred to a psychologist or psychiatrist to assist in providing care.

Based on the type of dementia, Mrs Carol may be prescribed medication, which is very costly in Jamaica and must be paid out of pocket (ranging from JMD9,244.88 to JMD35,653.60 or USD68 to USD264, as of October 2020). As such, dementia-related treatment may strain the financial resources of the family as Mrs Carol’s daughter is also dealing with her health challenges. Professional support, at a cost, may be provided by a psychologist, psychiatrist, mental health professional with possible knowledge in dementia care, nurse or paid carer (untrained in dementia care).

Changes have already occurred in the family arrangement, with Mrs Carol now living with her daughter – who on average will spend 7-8 hours maintaining the house and caring for her mother – and will continue to occur. As a result of the advanced stage of Mrs Carol’s condition and the need for support with activities of daily living (ADLs), the responsibilities may become too great for Mrs Carol’s daughter in the context of being primarily responsible for her mother, her daughter and her health challenges. As such, she may be inclined to place her mother in a palliative care facility. However, there is only one government-operated palliative care facility in Jamaica which many believe only caters to persons coping with cancer. The other two palliative facilities are privately operated.

Should there be no available accommodation in the government-operated palliative care facility, Mrs Carol’s daughter may need to hire a live-in paid carer to assist with managing Mrs Carol’s symptoms, care needs and to allow Mrs Carol’s daughter to leave the home confidently knowing that her mother will be taken care of.

However, the most common and likely option is for Mrs Carol’s daughter to hire and utilise a live-in domestic worker to assist with home maintenance and basic care needs of her mother, which was primarily carried out by Mrs Carol’s daughter and granddaughter. These include: cooking, eating, getting dressed and preparing her food. All options are costly and not covered by public or private health insurance. To fund these options, Mrs Carol’s daughter will likely ask her siblings to contribute to the cost associated with the care options outlined above. The contributions will be financial and facilitated through remittances. With a favourable change in the family arrangement, Mrs Carol’s daughter can now refocus on her health and redirect the time spent on her mother to her daughter.

Mrs Carol’s daughter is likely supported by a network of close family and friends from who she would seek advice. However, Mrs Carol’s daughter may lack persons within her network with similar experiences caring for persons with dementia, and as such, she will likely feel isolated and unsupported as they may be unable to relate. Nonetheless, her network may assist in searching for support available in Jamaica to support Mrs Carol’s current care situation. These resources garnered will likely come from local organisations such as churches. Within Jamaica, there is a costed dementia day only provided by the University Hospital of the West Indies (UHWI) located in Kingston, Jamaica; further, the support provided is medically-based. Additionally, free dementia consultations may be provided through STRiDE Jamaica. Unfortunately, these resources are not widely known or publicised. In addition to the above challenges, stigma due to the lack of awareness surrounding dementia will further exacerbate dementia treatment and care barriers to meeting Mrs Carol’s care needs and negatively impact the care experience for both her and her daughter.