Mrs B and her family, current experience | Jamaica

23 Feb 2022

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Mrs. B is in her 70s and lives in mid-size town. When her son got married, she moved in with her son and his wife. For the last few years, she helped the family by looking after the grandchildren and doing housework and cooking while her children were working in the business they own. About two years ago, Mrs. B’s family became worried about her behaviour and memory. Now Mrs. B mostly stays at home. She does not go out unless someone of the family accompanies her. Mrs. B also stopped cooking, which she always enjoyed. Her daughter-in-law reminds her to take medication she needs for other health issues and helps with dressing. Mrs. B does not like being left alone in the house. Mrs. B’s daughter-in-law is worried about her hygiene, but having to look after the business, taking over the cooking and shopping for the family as well as making sure that Mrs. B is safe and well during the day takes a lot of her energy and so she postpones thinking about this aspect. Once a week Mrs. B’s son takes his mother to [church].

Mrs Beverley’s location in an urban area will likely offer her more opportunities to receive a dementia-related diagnosis. However, she will likely seek assistance from the General Practitioner (GP) who is currently treating her other health challenges. Though there is a possibility that Mrs Beverley will receive either no diagnosis or misdiagnosis, given the location and increased awareness of mental health within urban areas, Mrs Beverley may be referred to a psychiatrist, who will most likely aim to provide a diagnosis. If Mrs Beverley receives a diagnosis, professional support will be provided by the family doctor and or the psychiatrist, particularly if she is prescribed dementia-related medication. However, given the low rate of Jamaicans insured (less than 20%) and Mrs Beverley’s son and daughter-in-law being self- employed, it is likely that these additional medical expenses will be paid out-of- pocket and will further strain the family financially.

Additionally, the Caribbean Community for Retired Persons (CCRP) currently boasts a membership of approximately 11,000 persons 50 years and older, and have been identified as a key source of information for age-related issues. Should Mrs Beverley’s family reach out to CCRP for her dementia-related symptoms, the organisation will likely recommend them to STRiDE Jamaica. Through this referral, the family will likely access free memory care consultations that provide guidance and support to carers of persons with dementia by empowering them with strategies in dementia care and management as well as providing culturally appropriate resources. Despite this, STRiDE Jamaica – better known among urban areas- is not well-known and is limited in its current capacity to meet the demands of persons desiring care consultations. As such, many persons are likely not able to benefit from this support.

Furthermore, changes in the family arrangement are inevitable. The family is likely to seek a paid carer, possibly not trained in dementia care and management, or a practical nurse. Sourcing these resources will be facilitated through word-of-mouth, along with perusing the newspaper classifieds. The paid carer will assist with managing Mrs Beverley’s symptoms and overall care. The assistance will afford Mrs Beverley’s son and daughter (primary unpaid carers) the time and mental space needed to refocus on their business and children. However, Mrs Beverley’s daughter-in-law will still spend at least three times more time caring for her mother- in-law than Mrs Beverley’s son as women are likely to assume the caring role within the family (CaPRI, 2018). Alternatively, paid care may come from a domestic worker who is untrained in dementia care management. Based on the family’s preference, the domestic worker will likely assist with household chores such as cleaning, cooking and helping out with childcare and or care of Mrs Beverley. Again, these options come at additional expenses that the family may be unable to shoulder.

Embedded in a collectivist, community-based culture in the rural settings, other options include having a trusted family member; selected by the immediate family and Mrs Beverley, provide support and care to the household. This person is likely to migrate from a rural community as relatives living within urban settings are likely employed full-time and unable to provide care on a full-time basis. The trusted family member is likely to be compensated at a similar rate as the domestic worker. Given the lack of dementia knowledge and training, Mrs Beverley may be subject to physical abuse by the informal paid carer in the absence of her son and daughter-in-law in cases where she may exhibit perceivably defiant behaviour.

Additionally, though it may be suggested to the family by her GP to retrofit the home or admit Mrs Beverley to a residential care facility, this will incur additional expenses that the family is unable to afford. Though admission to a residential facility can reduce the emotional challenges and the time spent caring for Mrs Beverley, this change will decrease the time the family spends with Mrs Beverley and can potentially weaken their relationship and, as such, is very unlikely. Further, culturally and religiously, the family may feel obligated to care for their loved ones on their own; admitting Mrs Beverley to a residential home may signal a lack of adoration and a sign of abandonment. Also, to note, there is a costed dementia day at the University Hospital of the West Indies (UHWI) for the entire country; however, these resources are not widely known or publicised.

Mrs Beverley’s son and daughter-in-law will likely turn to Mrs Beverley’s GP, live-in carers, church leaders and members, a network of friends and co-workers for advice and support. Though there is still the presence of stigma, due to the family’s location, there will be increased accessibility to professional help.