I recently undertook my Master's Degree field work component in Kenya. As part of the research, I interviewed carers supporting people with dementia to learn more about their experiences.
Kenya is an East African country with an estimated population of 47 million people mostly living in rural areas. Statistics from 2010 showed that the overall prevalence of dementia in African adults over the age of 50 was estimated to be about 2.4% - that is 2.76 million people living with dementia on the continent and about 2.10 million of them living in Sub–Saharan Africa (George-Carey, 2012). The World Health Organisation has indicated that Africa has the fastest growth rate of older population in the world (WHO, 2017). There is therefore a clear need for governments and policymakers in Africa to remain vigilant and be aware of the needs of the growing older population.
The Kenyan healthcare system is under developed in comparison to the UK healthcare system with few health care providers for neurological diseases such as dementia. Most health care facilities in Kenya are below international standards with limited resources, equipment and capabilities. Kenya is a developing country and there is still a lot of work to be done if the public, government and professionals are to understand dementia and look for possible interventions for those that require support.
Dementia is unknown in many parts of Kenya and there is indeed limited information on dementia in most parts of Africa. This does not mean that there are no cases of dementia. Many people, including health practitioners, do not know what signs to look for. Many people assume that dementia is a normal part of ageing and they would usually just support the family member without seeking external help and medical interventions.
Because of the lack of awareness and understanding of dementia, there are no terms in the local languages to describe dementia. There is lack of proper diagnosis with some people reporting cases of misdiagnosis. Some were misdiagnosed with depression, Parkinson’s disease, diabetes, high blood pressure or a combination of other diseases or informed that it is an old age illness. Others spoke of being sent on a ‘wild goose chase’ from one hospital to another with different doctors diagnosing different illnesses and offering different treatments. One carer despairingly reported that this left her feeling helpless and hopeless because the people who should have been helping and advising her were so misinformed and lacking in knowledge about the disease. In Kenya, there is no free universal healthcare and most carers had sought very expensive private consultations and treatments. Many had sold off assets to fund the person with dementia’s care. The resulting drain on family resources is a major challenge that can push carers into poverty and destitution.
Stigma was reported to be experienced by all the families that I interviewed. This is linked to the lack of awareness. Stigma was not only from the members of the public, but largely from other relatives who did not understand the situations. Due to lack of understanding, many carers were accused of witchcraft, especially if the person with dementia was a husband, the wife was then seen as a witch. This was very difficult for the families because as a result they were cut off from the family, received no support and suffered in silence. They then mostly relied on the wider community, churches and other well-wishers for support. One interviewee described how on numerous occasions, she contemplated double suicide for her and her husband who had a diagnosis of dementia. Others saw dementia as a curse from God and assumed the family or the person with dementia deserved to be punished for their wrongdoings and this presented a very difficult situation for the carers. Some carers believed these assumptions and decided that the dementia was their ‘cross to bear’. Dementia is also stigmatised in the same way that mental illness is stigmatised in Kenya and some people link it to insanity and advised the families to seek help from mental institutions.
Another major challenge is the lack of government support. There is no legislation, policies or service provision. Dementia is not on the government agenda and most carers felt that the government was unaware of the issue. There are no statistics or data on the people with dementia and this lack of information makes it difficult for the carers to lobby the government and raise awareness.
Hope for Kenya
Alzheimer’s Dementia Organisation of Kenya (ADOK) is a carers’ led organisation that was founded in 2016. The organisation is still young, but the main aim is to provide dementia training to carers, impart coping skills and offer counselling services. The members also support each other financially, emotionally, spiritually and practically through home visits and raising funds for funerals. They have an online platform where they share information that might be helpful to others. They meet once a month and share their experiences and seek support for any challenges they are going through. They try and have a guest speaker that can increase their knowledge of dementia and answer any questions they have. I was fortunate to attend the January 2018 meeting and share my research finding. The members of the group are extremely resilient and resourceful within their own dementia journeys.
The group is raising awareness of dementia through media outlets and providing information to members of the public and other professionals. They are also using social media and other platforms such as churches, medical settings and funerals, if appropriate, to raise awareness. Funerals are an especially powerful platform because thousands of Kenyans attend them and get to hear about the person who has passed away and the illness they had. It is not always possible to raise awareness at funerals but when it has been done, it has been well-received, and many have reported back that it was the first time they had heard of dementia or Alzheimer’s.
ADOK members are currently working on advocating for the inclusion of dementia care in key government health strategies and lobbying the government to take an interest in their cause. They are aware that data is needed, and the organisation has started collecting information from families and holding strategic meetings with health minister to advance their objectives. It all sounds very hopeful and they are very committed to getting government officials involved.
More research is needed to understand how widespread dementia in Kenya is and to investigate person-centred and culturally appropriate interventions.