In informal chat groups of family caregivers, one repeated concern regarding the 2019 census was why the approach to matters health and disability was so narrow. There was very little consideration for health conditions like stroke, asphasia, cerebral palsy, autism, dementia, mental health, etc. The closest that one could possibly get to linking with say mental health was the vague question on the lines of “Have you or anyone in your family had a problem with forgetting things recently?” Parents of children with cerebral palsy expressed great disappointment that their children who have special needs are not to be a priority for the country. I for one had to insist that my mother’s stroke induced aphasia be captured. Thankfully the census official was willing to find a place to capture it by fire by force! Well I hope he did, I didn’t see what he keyed in and if he clicked save after doing so. Granted, confidentiality, data security and privacy were a big concern in this census. So much so that many Kenyans who have already registered for huduma number and who entrust their IDs or ID numbers with strangers in almost every building in many towns were not willing to give out their ID numbers to “mtu wa census”. With such a high level of mistrust, many might not be willing to share about health conditions. That said, there must have been a way to capture more than albinism, memory loss and inability to walk in the census.
The issue isn’t just an emotive one to get dear ones identified and recognised by the national government. It is about a comprehensive approach to national and county government planning on matters health. Research in Canada a couple of years ago found that family caregivers provide up to 75% of care services, which equates to about $24–$31 billion in unpaid work annually. In Europe, European Pillar of Social Rights (2017) makes explicit the commitment to family caregivers, including their rights to flexible working and access to care services. Long-term care as a whole is a key policy priority in Europe and importantly, informal care is recognised as not cost-free either to individuals or to the state. In the USA for example one research study established that the value of care provided for Alzheimer’s or other dementias was $217.7 billion in 2014. The total value of family caregiving in the USA was estimated to be as high as $470 billion in 2013. In 6 years it must have grown significantly.
Research in countries that pay some attention to family caregiving shows that family caregivers receive little training on how to deliver complicated care, are not treated fully by health and other systems as partners in their loved one’s care and are not proactively encouraged to maintain their own health. As a result family caregivers are at increased risk for health, emotional, financial and work-related problems. The impact of caregiving employees on the employer and the workplace is quite significant in terms of drop in performance, lost productivity, increased lateness, higher absenteeism and presenteesim i.e. present but distracted and fatigued, cost of errors, higher medical costs amongst others. The government being the largest employer in Kenya ought to play a more proactive role in ensuring solid comprehensive data on this neglected yet increasingly important aspect of healthcare is collected and applied in informing proper planning, legislation, support and workplace mitigation programs.
There is a dearth of information about family caregiving in Kenya and the census was a golden opportunity missed. For now, perhaps the best we can do is to extrapolate the numbers of family caregivers from the 2014 demographic and health survey. But that will not suffice to comprehensively address the issue. When preparing for the next Kenya National Bureau of Statistics would do well to include elements of psycho-socio-economic aspects of family caregiving. So perhaps, just maybe ……hopefully!