Mrs A and her family, current experience - Kenya

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 Ambetsa lives in a small rural village with her husband while her daughter and the family live nearby. She started losing things and putting things in odd places causing much worry to the family about her state of mind. But after her daughter found her roaming in the village seeming lost, she began thinking about taking her mother to the community health centre though the mother does not like to go there. It may take a while before she actually takes her mother to the community health centre (public) because the family will need some finances. At the health center, consultation is free, one just needs 10 Kshs (approximately 0.1 $) to buy a file for recording purposes. However, she may be required to buy the prescribed medications if unavailable at the hospital (this is the often case) which is an added expense. Transport expenses are likely to be high due to poor infrastructure in the rural villages of Kenya while at the health centre, services are likely to be paid out of pocket e.g. card expenses to document personal details and next appointment date and drugs which may be unavailable at the centre. This is likely to take even longer if the daughter is the sole provider for her own family and her parents as well because she will take longer to secure the health care finances. It’s also possible that the family may never take Mrs Ambetsa to the health center because of inadequate finances for out of pocket expenses. While the daughter may be the primary carer at home for her mother, the husband to Mrs Ambetsa could be the one accompanying her to the health centre in case the daughter is involved in other activities elsewhere. However, this happens on rare occasions as the primary carer prioritizes the mother’s health as a child’s obligation, spiritual fulfilment and to avoid neglect or shame from the community. In rural Kenya, some roles are exclusively assumed to be of the female gender (the setting is more patriarchal than urban settings) such as care giving role regardless of their gender and health status. At the health centre, Mrs Ambetsa is likely to get a clinician (a nurse or a clinical officer) who is highly likely not to provide a diagnosis and might send Mrs Ambetsa home with a reason that it’s just a ‘normal’ part of aging. On the contrary, due to fear of stigma, the daughter may also decide not to take her mother to the health center because of how people will react to her mother’s condition. Therefore, limiting access to health care services.

Considering that the relationship between the mother and daughter is not at its best (due to constant arguments), Mrs Ambetsa will likely not get the best of care from the daughter, therefore posing a threat to Mrs Ambetsa’s quality of life and her health outcome eventually in terms of the care she receives. It is also possible the arguments between them come up because Mrs Ambetsa feels stigmatized because she feels treated like a baby because the daughter may assume the mother is ‘turning into a baby’. Although there may be need for another carer, Mrs Ambetsa’s family is not likely a get a paid carer since getting one is quite expensive especially in the village and might strain the family’s income greatly. Even if they were to get a carer, it would just be a casual domestic worker from around the village without proper knowledge on dementia care and support. Getting a carer (outside family) would also be unlikely due to fear of being judged because it’s considered the family’s duty to care for a loved one living with dementia. Moreover, Mrs Ambetsa’s seemingly aggressive behaviour is likely to make it harder for a paid carer to agree to care for her. Since the daughter has another family to tend to, she’s likely to care for her mother during the better part (eight-ten hours a day) of the day leaving Mrs Ambetsa alone in the evenings when the daughter goes back to her home. If the grandchildren are not schooling (below five years), they would be left playing and the mother would request the oldest child to come to the grandparent’s house if they have a problem. The daughter is expected to have prepared food for the children before going to take care of her mother.  The daughter is likely to care for her mother on a daily basis, at the same time taking care of her household so that the husband does not feel abandoned or the carer does not face stigma from the community for not performing her duty as a wife (giving care to the husband). However, this might be a source of conflict because the husband is likely to feel as though the wife is going back to her home and abandoning him. Although getting a paid carer is a possible solution, the family may not afford it.

In the event that the family is not able to take Mrs Ambetsa to hospital due to high costs, they would consult friends and neighbours on how best to help Mrs Ambetsa. The friends might advice Mrs Ambetsa’s family to consider traditional healers who are likely to be very accessible and available in the rural setting. The services of faith healers might also be sought because in the rural setting, most people (including Mrs Ambetsa’s family) are likely to believe that persons living with dementia are cursed or bewitched. As much as there are friends, neighbours who may be giving advice and emotional support, there are those who may not want to associate with Mrs Ambetsa or her family (husband or daughter). In future, even when Mrs Ambetsa’s condition gets worse, the family is still less likely to seek medical attention because they would believe it’s just aging maybe because they lack knowledge on dementia or they might still be scared of being stigmatized or deny that Mrs Ambetsa has dementia.

Mrs B and her family, current experience - Kenya

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.

Mrs C and her family, current experience - Kenya

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 Chalo moved in with the daughter when it became clear that she could no longer look after herself since she started being forgetful. Her daughter and granddaughter help her with the activities of daily living hence are likely to be the unpaid primary carers (24 hour supervision).  Mrs Chalo seems to be at the advanced stages of dementia because she has issues swallowing food, washing and even going to the bathroom. Before the condition got worse to the current state, it is possible that they may have tried seeking almost all sorts of help in terms of treatment before resorting to home care treatment. They may have sought medical attention from a public health centre around their home where the clinician (clinical officer or nurse) may have assessed and treated her physical symptoms and sent them home with a diagnosis of senile dementia. This visit is likely to have been paid out of pocket. Based on the advice from friends and neighbours to try traditional medicine, as an option for treatment of dementia, Mrs Chalo ‘s family may have tried herbal medicine as well as even going to church (faith healers) to seek pardon for the curse that the family might have assumed is the cause of dementia.

It is also likely that treatment was never sought because the family may have been in denial of Mrs Chalo’s condition (e.g. a person with dementia is waiting to die), or they lacked knowledge on dementia and /or were afraid of being stigmatized (public stigma) by the community they live in. Friends of the family and neighbours are likely to pay home visits and give advice to the family as a way of showing support (mostly emotional) to the family especially the carers. However, some friends and neighbours could be a source of stigma for both Mrs Chalo and her carers and may not want to associate with the family (associative stigma).

The constant care needs of Mrs Chalo pose a strain on the daughter who also has issues with her health. It is also assumed that the daughter is not working due to the care that her mother needs and her health issues too. The siblings are therefore likely to support her financially. In some cases, the support may not be consistent especially if there is family tension or if the siblings are not satisfied with the type of care their mother is receiving. This would ultimately cause a further strain on her finances and even her mental wellbeing therefore affecting how well she cares for her mother.

If the siblings are uncomfortable with this arrangement, the other children of Mrs Chalo could take the mother and stay with her for a while instead of coming to visit only. This will allow Mrs Chalo’s daughter some time off to take care of the mother and also time to look after her health, possibly have checkups. This will save the family a great deal of money that would otherwise be spent on a carer. Nevertheless, having another sibling to take care of the mother has its disadvantages. For instance, the mother may take a long time to readjust with the new environment and learning a new schedule of activities which may come with challenges later. Considering that this is a new role for another sibling and carers in Kenya are not trained to perform the role, the sibling may also experience carer burden that is expected when caring for a person at advanced stages of dementia. If the family was to arrange for a carer to stay with her, it would mean that the children (Mrs Chalo’s) will have to contribute the finances needed to pay a carer which is likely to further strain the daughter’s expenses since she also has her personal health to look after. It is also possible that one of the siblings sends remittances (if she/he stays out of the country) and this may contribute to financing the health care for their mother.

Mr D and his family, current experience - Kenya

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.

Mr. Dimba has been living alone since the wife passed but over the past few months, he has found it more difficult to look after himself and the house as well. During the monthly visits that his children pay him, one of the sons noticed that the father is not himself. As a first step, he may have called his siblings to tell them about the father’s current status and express his concerns over the same. From there, they may recommend that the son (unpaid carer) stay at home to help the father with his activities of daily living for a couple of days before he goes back to the city as they organize for a carer who is likely to be male since male Africans prefer fellow males to care for them especially with the personal care activities like bathing and dressing. This may take longer than expected because finding a male carer willing to take up care giving is quite difficult because males consider care giving a ‘feminine’ job. In turn, if the son overstays at home, he may lose his job back in the city. If there is no close male family member willing to care for Mr. Dimba, then they are likely to get a paid male carer for Mr. Dimba. This is a possible solution because Mr. Dimba’s children work in the city and assuming they earn decent incomes, they may be able to afford a paid carer for Mr. Dimba.

Soon after, during the monthly visits to Mr. Dimba, one of the children may take their father to a public health centre in the town. However, this may be a challenge at the facility especially if one of the visiting sons is not cognizant of the daily issues affecting the father and the clinician may not be able to have a clear picture of the situation to assess progress. Being a peri-urban town, it’s likely Mr. Dimba will be assessed by a general physician or a psychiatric nurse (if any) who may be on duty. Now, since most healthcare professionals lack the basic knowledge on dementia diagnosis and support, they may not give a diagnosis but instead prescribe medication for physical symptoms, if any. The health care services are likely to be paid out of pocket. With time, the family may start to limit Mr. Dimba’s movements out of the house because they are worried people will see the father with the ‘most dangerous disease in the community’. In an attempt to better the condition of their father, they may invite traditional healers to treat Mr. Dimba with traditional medicine as well as faith healers from church to pray for him in case they think that Mr. Dimba has been cursed or bewitched and this may further strain the family’s finances because these services require payment as well except those that involve spiritual care from faith healers. Once follow up is done by these healers and no progress has been made, they may refer Mr. Dimba to a specialist in the nearest city where they are likely to get one while they continue receiving prayers. If the family can afford services of a specialist (psychiatrist), they may take Mr. Dimba to stay with one of his children in the city during the treatment period when he is seeing specialist, who is likely to be a public health provider in a government hospital. The children can contribute the money to see the specialist though this can get quite costly since most mental health conditions are not publicly insured.  Some private insurance companies also charge extra fees for mental health conditions.

Mr E and his family, current experience - Kenya

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.

Mr. Etende left to work in the city but since his wife passed on, he has become estranged to his children and now has problems with memory. Mr. Etende lives alone and since he has issues remembering appointments, it is possible that he might have stopped going to work and may eventually get fired. It is likely that Mr. Etende consumes alcohol because he has lost contact with family may resort to drinking alcohol to reduce boredom and to bond with his friends. If the latter (losing his job) happens it may lead him to abusing more alcohol thus worsening his condition. In the process of losing his way back from the shop, one of his neighbours may notice that something is wrong and may try to contact his extended family if there are any around the city. If Mr. Etende is in good terms with the relatives, they may come to his aid otherwise he is likely to find it difficult to deal with dementia not least because he is not in a good relationship with his family. Once they make contact with him, his relatives may contact the immediate family in the village to establish a relationship, then in the process take Mr Etende to a nearby public health centre to find out what is going on with him. Here, the services are likely to be paid out of pocket to obtain the card to record the next appointment and for medications. That is likely to be all Mr. Etende gets in terms of treatment from the health centre. Later on, the family may turn to friends and neighbours for advice on where to take Mr. Etende for the best and cheapest treatment. The friends and neighbours may also help to raise funds through well-wishers to take Mr. Etende to a higher level of care. While it is not a guarantee that he will be assisted because many individuals may assume he wasted his money on substance use, some may just assist because of close association with the family members or because of their spiritual belief on selfless giving without expecting a reward from the person.

With worsening of symptoms, the family may now decide to take him to either a private clinic or a national referral hospital where he is likely to be diagnosed due to availability of more experienced and knowledgeable medical staff (neurologists, psychiatrists, psychologists and psychiatric nurses). Here, Mr. Etende may be admitted for days if not weeks as the specialists treat him for possible alcohol attributed dementia. Assuming he had an active National Hospital Insurance Fund (NHIF), this would pay up to a certain amount depending on the hospital then he pays the balance through OoP. A male family carer (unpaid) is likely to be the one helping Mr. Etende at the hospital with activities like bathing and feeding (12 hours a day) him till Mr. Etende feels better. In Kenya, there is a shortage of health care workers with no nurse aids to help out with these activities and therefore relatives are called upon to help out. Eventually, the bills are likely to be paid out of pocket. In case the family did not take him to hospital, either due to denial, financial constraints or lack of knowledge on dementia, Mr. Etende’s condition could get worse prompting them to take him back to the village where the children would be expected to care for their father. However, if the children still go to school, a paid carer would be the highly likely solution and the family would organize for a male paid carer for him if they can afford or if Mr Etende’s siblings can support. In case Mr. Etende’s siblings in the city default to give financial support due to family conflicts that may arise, the children may find it difficult caring for their father if they are financially unstable. Mr. Etende is likely to experience stigma more in the village than in the city since people in the village lack knowledge on dementia as a condition and may say that Mr. Etende was brought home and is ‘waiting to die’.