Mrs A and her family, current experience | Jamaica

23 Feb 2022

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Mrs. A is in her 70s and lives with her husband in a small village in a rural area. Mrs A’s daughter and her family live nearby. Over the last year her family has become increasingly worried about Mrs. A, as she keeps losing things and puts items into odd places. A friend has told the daughter that Mrs. A had been wondering in the village and seemed a bit lost. The daughter is worried about what people may think or say about and how they may react to her mother. Mrs. A used to have a very neat house and looked after her appearance. She also helped her daughter with the children. Over the last few months Mrs. A seems to be no longer interested in these things. Mother and daughter used to have a good relationship, but recently there have been a number or arguments. The daughter is thinking of taking Mrs. A to the community health centre, but she knows that her mother does not like to go there.

Mrs Audrey’s unwillingness to visit the community health centre may prompt her daughter to reach out to Mrs Audrey’s General Practitioner (GP) located at the community health centre or family doctor working on the day of visit/contact. These healthcare professionals are likely from the same community and would be the preferred choice due to familiarity and trust developed over the years. This outreach may be done secretly due to the strained relationship between Mrs Audrey and her daughter, along with her overall unwillingness to explore her symptoms. In this regard, the GP, who is likely not trained in dementia diagnosis, care or management, would make a house visit to assess Mrs Audrey’s condition under the disguise of a regular doctor’s visit. The GP’s lack of training may result in either no diagnosis, a misdiagnosis, or being told that her symptoms were a normal part of ageing. As a result, Mrs Audrey’s dementia-related symptoms will be left untreated, with her most likely supports being her husband, GP, and daughter. To note, given the resource constraints of public healthcare settings in Jamaica, home visits, though possible, will be infrequent and dependent on the community health centre’s resources including available doctors and/or nurses and the severity of Mrs Audrey’s condition.

Given the family’s fear of stigma, it is unlikely that general community assistance, which is common in rural communities, will be sought. However, should assistance be sought, it will likely be neighbours surveying Mrs Audrey to ensure her safety. For example, should she be wandering, a neighbour will alert either the family member or another community member to return Mrs Audrey to the home.

Addressing Mrs Audrey’s condition will undoubtedly result in changes to the family arrangement. Though Mrs Audrey will remain in the home with her husband, significant support will come from her daughter, who may on average spend 4-6 hours per day (CaPRI, 2018) caring for her mother in addition to caring for herself and her children. Mrs Audrey’s husband will likely provide companionship and moral support. However, changes in Mrs Audrey’s behaviour and memory decline may cause friction between her and her husband, forcing them to change their living arrangement. For example, Mrs Audrey’s husband may opt to sleep elsewhere in the house. Support from Mrs Audrey’s daughter will include arranging her doctor’s visits, maintaining the home, grooming and keeping her mother mentally and physically active. This arrangement is consistent with the global and the local landscape, in that traditional gender roles reflect females being caregivers. Additionally, Mrs Audrey’s husband may be ill-equipped to manage her symptoms due to his lack of dementia awareness or declining physical ability. Additionally, the daughter’s constant travelling may become a financial burden, despite living nearby, and will take time away from her immediate family. Extended family presence is common within rural communities, as such; there is a possibility that a close family member may be entrusted with Mrs Audrey’s care. This family member is likely to identify as female, is unemployed or informally employed and have experience caring for older relatives. The choice of the family member(s) will be decided by Mrs Audrey’s daughter and husband, who will be the primary family unpaid carers. Keeping caregiving within the family will also help avoid stigma, which is reasonable, considering the lack of awareness of dementia in rural communities. Additionally, compensation is likely to be below minimum wage, as this is customary given the nature of the role and location within a rural community where job opportunities are less compared to urban communities. The daughter is likely to cover the cost of the carer as she is currently in the workforce. However, this is likely to result in rejiggering of her current household budget, and thus becoming a financial burden. As a result, the informal caregiver is likely to have delayed payments.

Alternatively, the daughter may relocate Mrs Audrey to her home if Mrs Audrey’s husband cannot care for her. Unfortunately, Mrs Audrey’s daughter may become overburdened emotionally, financially and mentally as she attempts to meet the needs of her children and her mother. Furthermore, family members may need to share living quarters to accommodate Mrs Audrey which may lead to tension in the home.

Support and advice for Mrs Audrey’s daughter would likely come from their social network, based on observations the social network has made regarding Mrs Audrey, such as behaviour changes. This social network will likely include close friends, family members, trusted co-workers, and community group members. However, the daughter is likely to become withdrawn, which will lead to a reduced social network. Out of feelings of shame, she will likely speak about her mother’s condition to only a trusted few within her network. Recommendations for free and accessible support from this network will likely include community groups (e.g. churches), the GP or the community health centre. Additionally, Community Health Aides (CHA), located in each parish and often have a relationship with families in rural communities, may also be a source of support. Specifically, CHAs, may become aware of Mrs Audrey’s condition through referral from the local community health centre. Their support will come in the form of home visits to Mrs Audrey to educate her and the family on healthy lifestyle choices, however, due to lack of dementia training among HCPs, in general, education is likely not dementia specific.