Mrs A and her family, current experience - Jamaica

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.

Mrs B and her family, current experience - Jamaica

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.

Mrs C and her family, current experience - Jamaica

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.

Mr D and his family, current experience - Jamaica

Mr. D lives by himself in a mid-size town since his wife passed away last year. His children have moved to the bigger city to work and can only visit once a month. Over the last few months Mr. D has found it more difficult to look after the house and himself. His son noticed that his father does not seem himself and is worried about him and what people may think if they see his father.

Having noticed his father’s declining ability to take care of himself and his household, Mr Donovan’s son is likely to take his father to the clinic (around 5 miles away from Mr Donovan’s residence) within Mr Donovan’s community for a GP to assess the nature of his health decline. The GP is likely to monitor Mr Donovan for some time given the early stages of his illness and will remain his primary source of professional medical support. Mr Donovan will likely have several missed appointments as he may forget, and his son may be unable to travel from the city to the rural community where his father resides due to time constraints. It will also be challenging for Mr Donovan to travel the distance on his own, given his current health condition, as this would involve waiting at the “bus stop” or a “taxi-stand” for a privately operated public passenger vehicle (PPV), such as a car or bus as the government-operated transportation system is not provided outside of the capital city, Kingston and surrounding urban areas. Should Mr Donovan’s symptoms worsen due to lack of appropriate interventions, he will likely be referred by his GP to a psychologist or psychiatrist. Though psychologists are located throughout Jamaica, the majority are within the Kingston and St Andrew region, a predominantly urban region with the highest population density. As a result, Mr Donovan will likely need to travel with his son to meet these professionals.

Mr Donovan’s son’s concern for his father’s welfare may encourage him to consider relocating his father to his home to take care of him. However, depending on the living arrangement in the city, Mr Donovan’s son may need to retrofit his home or move to another location to accommodate his father’s care needs. Despite this well-intentioned aspiration, Mr Donovan may be unwilling to move from the community in which he was born and raised. As a result, his son is likely to hire a live-in domestic worker to care for Mr Donovan. The domestic worker will help in activities of daily living, ensuring that Mr Donovan makes his doctor appointments and maintain the home. Additionally, the family will enlist the support of trusted neighbours within the community to keep an eye on Mr Donovan in the community. Mr Donovan’s son would have exchanged numbers with the identified persons.

Mr Donovan’s son will also receive support from his girlfriend, who will make regular trips to visit Mr Donovan. During these visits, Mr Donovan’s son’s girlfriend, will receive updates from the domestic worker, observe Mr Donovan, assist with household chores, ensure that necessities such as food in the house are sufficient, and assess any household needs. However, due to work obligations, these trips may be inconsistent. Additionally, given the gendered norms in Jamaican society, there is a possibility that the primary unpaid care role will heavily fall on Mr Donovan’s girlfriend, with her spending three times (244 minutes) the amount of time on care than Mrs D’s son (90 minutes) (CaPRI, 2018) on each visit, while Mr Donovan’s son provides financially.

Alternatively, Mr Donovan’s son may consider placing his father in a residential home depending on the progression and severity of symptoms. Nursing homes, though costly, will be able to provide 24-hour care to persons who are unable to live independently. In addition to the cost barrier, this option will be met with resistance from Mr Donovan and community members, who may criticize his son by viewing the decision as neglect and a lack of care. As a result, the family may hire either another domestic worker, family friend or a practical nurse who can rotate shifts to facilitate 24-hour care. These care options will be financed out-of-pocket and will likely be unsustainable.

The lack of knowledge surrounding dementia and the associated fear of stigma may reduce the avenues that Mr Donovan’s son has to seek advice and support. When neighbours inquire about Mr Donovan’s health concerns, Mr Donovan’s son and girlfriend will refrain from saying dementia, and instead say “he is just not well, but will be better soon”. As such, his network will be limited to his close family members, including his siblings, girlfriend, friends who he trusts and the GP.

Mr E and his family, current experience - Jamaica

Mr. E has left his family many years ago to work in a big city. While he visited his family once a year, his children have become increasingly estranged and he has lost contact with them after his wife passed away five years ago. He lives on his own in a small flat. Mr. E finds it difficult to find his way to the shops and back, has difficulty remembering appointments and often forgets about eating.

Though the first point of contact, regardless of location, is typically the General Practitioner (GP), Mr Errol may have direct access to a psychologist or psychiatrist without needing a referral from a general practitioner. However, culturally, men are less likely to seek medical help until their medical condition becomes unbearable. Further, if he is unaware of the possible nature of his challenges, the visits to his GP will likely be general check-ups. Through these check-ups, if the GP notices any changes in Mr Errol’s cognitive skills, he will recommend a cognitive assessment to provide a provisional diagnosis. A referral may be made to a psychologist or psychiatrist who will instruct Mr Errol to do diagnostic tests to rule out alternative explanations of symptoms and identify an accurate diagnosis.

Mr Errol is unlikely to follow up on the referrals to conduct these tests if left up to him. However, Mr Errol is likely to have a romantic partner who visits frequently and may encourage him to follow up on the referred tests; unfortunately, her efforts will be met with much resistance. His GP will be Mr Errol’s primary professional support. The GP, having observed Mr Errol’s cognitive decline, may contact Mr Errol’s listed emergency contact. Mr Errol’s deceased wife is likely to still be listed as his emergency contact. At this point, the GP may request to update this information, in which the contact information of his current romantic partner will be provided. Mr Errol, however, may ask the GP to refrain from contacting anyone out of feelings of embarrassment and will likely deny any changes in cognition.

Being estranged from his children and the loss of his wife, Mr Errol’s support will come from his romantic partner, along with trusted friends, co-workers or his extended family members. His extended family members, having observed Mr Errol’s cognitive decline, may, on their own, attempt to contact his children to encourage them to attend to their father’s needs. Unfortunately, due to limited contact, the children’s numbers and addresses may have changed. To note, though estranged from his children, under the Maintenance Act (2005), his children are obligated to look after Mr Errol. Specifically, Part V, section 10.1, states that “every person who is not a minor has an obligation, to the extent that the person is capable of doing so, to maintain the person’s parents and grandparents who need such maintenance by reason of age, physical or mental infirmity or disability.” Failure to do so can result in criminal charges; however, this law is not enforced. In fact, Jamaica’s public hospitals are faced with challenges of family members neglecting their loved ones, further indicating that the Act is not enforced. Though abandoning Mr Errol into a public facility is an unlikely scenario given Mr Errol’s mild symptoms, it may become a reality as the disease progresses. Additionally, living wills and power of attorney that can buffer this reality does not apply to persons with cognitive deficiencies in Jamaica. As such, if there is no reconciliation or favourable response from Mr Errol’s children, Mr Errol is not left with many options to handle his affairs on his behalf.

His main source of advice and support will be his GP and romantic partner. The lack of awareness surrounding dementia may result in Mr Errol facing stigma by persons whom he interacts with while engaging in everyday activities. Furthermore, the lack of family support may make Mr Errol vulnerable to financial fraud from persons in his network or even his children, given their strained relationship.

Mrs Gloria and her family, current experience - Jamaica

Mrs Gloria is a 65-year-old retired teacher living within the rural area of St Thomas, Jamaica and seen as a role model in her community. She is currently the primary caregiver of her 15-year-old granddaughter, whose mother has been working in the United States of America for the last 10 years. In the last two years, Mrs Gloria’s 15-year-old granddaughter realises that she has gotten increasingly forgetful and has neglected duties such as cooking, cleaning, collecting her pension cheque from the post office and remittances from the Western Union sent from her daughter. At 15, Mrs Gloria’s granddaughter has now taken over these duties due to her grandmother’s challenges. The community members, who all know Mrs Gloria, have noticed the change in her behaviour and have seen her wandering at nights. Mrs Gloria also notices her decline in memory, but insists it is just “old age.”

Mrs Gloria, a stalwart in her community and who more than likely has taught many of its members, would likely continue to trivialise and attribute her symptoms to “old age”. She will continue to avoid seeking professional help due to feelings of embarrassment, pride and fear of being thought of differently (stigmatised) by those who admire her. Her feelings of embarrassment and guilt may also arise due to Mrs Gloria’s heavy reliance on her 15-year-old granddaughter.

Despite the minimisation of her symptoms, Mrs Gloria is likely to still have regular check-ups at her General Practitioner (family doctor, GP). These check-ups would be minimally subsidised by the NI Health Gold, which is a national health plan for pensioners under the National Insurance Scheme (NIS) which retired teachers have access to. Her doctor may notice changes in her behaviour and recommend that s/he administer a cognitive test.

It is customary that GPs with a longstanding relationship with their patients, especially in rural settings, will retain the client instead of referring them to a neurologist or psychiatrist. However, there is the possibility that the GP will seek guidance from a colleague in psychiatry or neurology in considering the course of treatment. The GP may also consider Mrs Gloria’s financial situation and instead prescribe non-pharmacological treatment, including dietary changes, the use of herbal treatment, and support Mrs Gloria’s family providing her with herbs such as ginseng, guinea hen weed, coconut oil, peppermint, etc. In addition, even if the GP would like to refer Mrs Gloria, she will not follow up on the referral out of fear of being diagnosed with dementia and what others may think. Regardless, though Mrs Gloria has health insurance, the coverage from public health insurance is significantly lower than private insurance, and as such, she may encounter difficulties financing such services. Due to these factors, professional medical support will be provided by Mrs Gloria’s family doctor.

There are two main possibilities for changes in the family arrangement for Mrs Gloria. Firstly, should Mrs Gloria’s symptoms worsen, her teenage granddaughter will become her primary caregiver, spending a minimum of 4 hours per day providing unpaid care (CaPRI, 2018). Balancing the care for her grandmother and attending school may become overwhelming for the granddaughter and will likely negatively impact her school engagement. Due to a likely decline in Mr G’s granddaughter’s educational performance and the possible shame experienced at school and within the community, she may opt to stop attending school, without consulting with anyone, to focus on Mrs Gloria – spending on average 7 to 8 hours caring for her grandmother. This decision will also be communicated to Mrs Gloria’s daughter, who though not in support, is left with no choice but to continue sending remittances to support her family from a distance. Important to note, though the granddaughter is under 18 years of age, within Jamaica, students under 18 can use their student identification card to collect remittances up to USD 500 or its equivalent.

The second change in living arrangement includes Mrs Gloria’s daughter, who lives in the USA and is unable to return to Jamaica due to her immigration status, arranging for a trusted family member to move into the home to assist in caring for Mrs Gloria to allow her daughter to continue her studies. This trusted family member will more than likely be a female who is unemployed/informally employed and has experience caring for older persons.

Due to the lack of information and understanding of Mrs Gloria’s condition, the family will likely lean on their immediate family and social network for support, especially the church. Specifically, Mrs Gloria’s granddaughter, who is still unaware of the nature of Mrs Gloria’s symptoms, will continue speaking with her mother via telephone and video call but may develop resentment towards her for not being physically present, particularly during these times. The granddaughter may also turn to her closest friends to distract her from her responsibilities. Mrs Gloria’s daughter, residing overseas, will likely be concerned for her daughter’s and mother’s wellbeing. Furthermore, she will likely feel guilty and frustrated that she cannot be there for her family.

Mrs Gloria’s social network, who are likely to be retired as well, will offer support to the granddaughter by way of taking turns monitoring Mrs Gloria when the granddaughter has to leave to collect Mrs Gloria’s pension, remittances, pay the utility bills and do grocery shopping. Other forms of care and social support may be provided by the church through home visits and meditative prayer, led by the pastor and elders of the church. However, the church may counteract the messaging from the GP, as the church members may see dementia as a normal part of ageing, “a curse”, “retribution for past actions”, or something to be overcome through spiritual healing without medical or scientific-based treatment/intervention.

Unfortunately, and despite support from some community members, the family will still experience stigma from other members of the community. Some community members will withdraw from Mrs Gloria out of fear that her condition is contagious. The main support will continue to be provided by the family doctor and the social network of family and friends. As her symptoms progress, care will continue to be provided within the home by her granddaughter and trusted family member.

Mr Frank and his family, current experience - Jamaica

Mr Frank and his wife are returning residents from the United Kingdom living between the parishes of St. Elizabeth and St Andrew in Jamaica. They operate a few residential rental properties located in both parishes where they collect rent monthly. They share three adult sons living in the parish of St Andrew, where job opportunities were more available. Recently, Mr Frank began forgetting routine activities such as collecting rent, driving routes, the time of day and is displaying unpredictable behaviours. As such, one of his sons decided to move in with his father to keep an eye on him. One night, Mr Frank’s son heard the front door open at 3:00 am and saw his father heading out, informing his son that he was on his way to work. Out of concern for his father, his son recommended that he sees a health professional. Mr Frank, described as stubborn, refuses to go and became aggressive with his son when he threatened to take away the car keys.

Mr Frank’s reluctance to visit the doctor and comply with the suggested changes put forth by his son will make it very difficult for his symptoms to be adequately addressed. Mr Frank’s wife and sons are likely to contact Mr Frank’s general practitioner, without him knowing, about these challenges and to seek advice. Mr Frank’s doctor will offer to contact Mr Frank on their behalf; however, Mr Frank will likely become upset with his family going behind his back and speaking about his condition. The family may then enlist the closest family member or friend of Mr Frank, someone he has listened to in the past, to encourage him to visit the doctor. Mr Frank, also noticing a decline in his functionality, will likely be in denial and will do as much as possible to avoid revealing his condition to his social network and other family members. Within Jamaica, men generally display poor help-seeking behaviour due to being socialised to think that they are “strong enough” to overcome health or general adversities and seeking help may be a sign of weakness, particularly health challenges without a clear physical origin.

The changes in the family arrangement and responsibilities include Mr Frank’s wife and children taking control of collecting rental income and managing the properties; however, this will be met with much resistance from Mr Frank. Additionally, given the safety concerns, the family may offer to drive Mr Frank to his desired destinations. However, this is likely to be met with much resistance, and as such, the family will likely hide the car keys. Unfortunately, Mr Frank is likely to locate these keys and possibly get into a motor vehicle accident. At this point, the authorities will then rule him to be a danger to himself and others. This decision will be supported by collateral information from his family. The family may also resign Mr Frank to one residence, more likely the home in St Andrew (predominantly urban), where the resources to support Mr Frank is accessible.

Realising the consequences of his condition going untreated, such as getting in an accident and realising that his tenants were taking advantage of his forgetfulness, Mr Frank may eventually agree to see a psychiatrist as referred by his general practitioner. The family, who is from the higher socio-economic strata, will be able to afford these doctor visits, follow-up on diagnostic tests and receive treatment, if applicable. Financing these services will come from Mr Frank and his wife’s pension from the United Kingdom (the exchange rate for GBP is about GBP 190.00 to JMD 1.00 as of October 2020) and their rental income. In the absence of any government support, the family will more than likely pay for the services out of pocket (OOP). As they have not worked in Jamaica, they would not be eligible for the National Insurance Scheme (NIS) pension. Additionally, the desire to address Mr Frank’s conditions and the burden of care, the family’s willingness to seek support/assistance will increase.

Despite receiving psychopharmacological treatment, the family may still require support in managing and caring for Mr Frank, especially if unpredictable behaviours like wandering persist and his symptoms worsen. As such, they will likely hire rotating live-in caregivers or nurses (at least two) to assist in activities of daily living, providing 24-hour care – an option typically affordable for the highest SES – with his wife spending on average 4 -5 hours daily on his care. These caregivers and nurses will be sourced through word-of-mouth – the main method of referrals. There is also a possibility that the family may hear from a friend who has interacted with STRiDE about the free memory care consultations they provide or from the Caribbean Community for Retired Persons (CCRP). Through these consultations, the family will be provided with advice on dementia care and management and directed to the most appropriate resources to support their care experience and increase their dementia awareness. The primary unpaid carer will remain his wife with support from paid carers and his three sons. His sons will likely take over the family business while their mother focuses on Mr Frank.