Mrs B and her family, current experience | Kenya

Mrs B and her family, current experience | Kenya

16 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].

Staying at her son’s place has helped Mrs. Bahati get the basic support she needs since the daughter in law, being the primary care giver (unpaid), is able to attend to her basic needs like personal hygiene, feeding and emotional needs. As Mrs Bahati lives in a fairly urban area, she’s first likely to be taken by the son, who observes new behaviour, and feels the need to help the father to seek medical attention at a public local health centre. Here, she’ll be assessed by a clinician (nurse or a clinical officer) who is not likely to provide a diagnosis but rather inform the carer that Mrs. Bahati is just getting old and does not need treatment. This is because most healthcare providers in Kenya do not have adequate knowledge on dementia detection, care and support or even if they do, their attitude towards care has not changed and therefore do not consider it a condition that requires medical attention. Once Mrs Bahati gets home, her condition is likely to worsen, for example she may forget the location of the bathroom or her grandchildren’s names. At later stages, after the family realizes that Mrs. Bahati’s condition is getting worse, they would possibly seek advice from a different health facility and/or based on community advice such as the Mrs Bahati might have been demon possessed or cursed, seek the services of a faith healer to be prayed for since they regularly attend church.

Since the church is in a fairly urban area, the people might be aware of the condition (not as dementia but some normal issues in old age) and will try to give comfort, emotional support and even financial support. It is also possible for the friends in the church and at home to give advice on how to deal with the condition or even which specialist is available, is nearest to them and is cheapest. Whilst going to church on a weekly basis really helps Mrs Bahati to tap into spirituality which might help in personal coping with the condition, it is also possible that the family thinks that Mrs Bahati is cursed and might be seeking pardon from the curse through a faith healer. Some of the church members and neighbours may also avoid talking and interacting with Mrs Bahati or even the son because they would not want to be associated with a someone with the condition for fear of them (church members, neighbors) being discriminated against as well.

Depending on the progress of Mrs. Bahati and further advice from friends on available herbal medicine that has worked for them, the family would in a cyclical pattern combine spiritual healing, herbal medication and conventional treatment from a health centre. Mrs Bahati might also be taken back to another clinician who may then refer her to a higher level of care (psychiatric nurse or a general physician), still with (for psychiatric assessment) or without a provisional diagnosis. On arrival at the higher level of care, the medical doctor would make a diagnosis of senile dementia and refer Mrs Bahati to a psychiatric nurse for symptomatic management. It is only at a rare instance and depending on the socioeconomic status will the family seek the services of a specialist (psychiatrist) in a private hospital who may then refer Mrs Bahati to a neurologist for actual diagnosis. However, Mrs Bahati’s family might decide not to go to the specialists because seeing a private specialist in Kenya is very expensive (at least Kshs 4,000 without medication) and the son’s business (likely small scale) may not be generating enough income for such services. The family might also not take Mrs Bahati to the hospital because they might assume it’s not a condition to warrant medical attention as consistently informed by clinicians and community members. Another reason for not seeking services would be that, since Mrs Bahati’s condition seems to be getting worse , and the family might assume that the community would see her and think that she is bewitched or that she has the ‘most dangerous disease that can never be treated’ and so the family tries to keep Mrs Bahati from the public eye. It is even possible that Mrs Bahati refuses to be taken to hospital and does not see the need to try to get well because she i convinced it is part of getting old or is in denial. Nevertheless, if she decides to visit a specialist, she would seek the services from either a public county referral hospital or a national hospital where the services are likely to be paid out of pocket. With this visit, she is likely to have another carer to accompany her to the hospital (the son or a close family friend) taking her because the daughter in law will remain at home to look after her children and do other house chores.

In as much as living with dementia is difficult; caring for a person with dementia also takes its toll on the carers especially the primary carer (daughter in law). The husband could offer support (emotional) as well as financial support for the wife during the time she cares for her mother in law. The family is less likely to get a paid carer because it gets quite expensive for such services in Kenya, especially because Mrs Bahati will require help in almost all aspects of her living if not all. If they were to get a paid carer, the care would be quite basic and combined with household chores (termed as domestic workers and paid about Kshs. 10,000) because most paid carers have not been trained to care for people with dementia. It is also difficult to get a paid carer since most of them are not willing to take up the role of caring for a person with dementia. However, it is very likely the daughter in law, being the primary caregiver, would stay with Mrs Bahati for as long as Mrs Bahati is sick because it is believed that it’s the duty of the family (often the daughter if a parent is unwell) to care for a person with dementia.

Being a Christian family and depending on their commitment to a church group, the family would request a close female member from church who is aware of Mrs Bahati’s condition and is comfortable with the role, to take over the care of Mrs Bahati for a while in case the daughter in law is involved with other activities outside home. However, this would be a last resort if an immediate female family member is unavailable to take care of Mrs Bahati. This in turn will allow the primary care giver (daughter in law) some time off the care. Apart from a physical carer for Mrs Bahati, the family also receives social and emotional support in the process from ‘community carers’ from religious groups or places of worship  thus contributing to the family’s mental wellbeing.

Most county referrals covering a population of about 1million individuals have 1 to 2 psychiatric nurses if the county has a mental health clinic, with only one psychiatrist (visiting the hospital at least once a week) in less than 50% of the counties in Kenya.