Within Low and Middle Income Countries (LMICs), Sub-Saharan African countries have the fastest growing rates of older people (Alzheimer’s Disease International, 2017). In Kenya, the population of people aged 60 years and older was 4.3% in 2017. It is expected to reach 10.6% in 2050 (United Nations, 2017). There are currently no official figures for the number of people living with dementia, but it is estimated that there could be over 86,000 people living with dementia in Kenya, more than quadrupling to 361,000 by 2050 (GBD 2019 Dementia Forecasting Collaborators, 2022).
In Kenya, dementia is seen as a “European disease”. As such, many people living with the condition in Kenya do not seek a diagnosis or support. In instances where people do seek a diagnosis, they are met by overstretched healthcare systems in addition to poor knowledge or communication. As a result, people living with dementia and carers facing these systems can begin to feel lost and disillusioned
Within the community, symptoms associated with dementia tend to be minimised and just seen as a normal part of ageing. When symptoms are recognised, the terminologies used (e.g., Thing’ai’/Thinking high1) can perpetuate negative myths and misperceptions about dementia.
All these factors contribute to stigma at individual, community and societal levels within Kenya. Interviews with people with dementia and their carers reveal many instances of public stigma, discrimination, and negative stereotypes.
1A term associated with people who go off to the city to earn money but return to a rural setting in retirement and become socially isolated.
It is clear that there is a profound effect of stigma on the lives of people living with dementia and their carers within Kenya. However, it is important to recognise that those living with stigma and discrimination have solutions – they only need to be asked. Our consultation with people living with dementia and their carers in Kenya found they recognize that raising awareness was pivotal to addressing stigma, and this had to occur by creating a dialogue within communities.
Developing the intervention together with people living with dementia, care partners and members of the local community
To develop an anti-stigma intervention in rural Kenya, we began by working together with the community, in particular people living with dementia and their care partners, to understand perspectives, resources and goals for reducing stigma. This first involved negotiating entry to the community with the local leader. We then held a series of focus group discussions and interviews with people living with dementia, care partners, healthcare workers and members of the general public.
These discussions helped us to understand existing knowledge, attitudes and behaviours towards people living with dementia and carers; experiences of stigma and discrimination; local language around dementia; current practices to promote social inclusion and ideas about how to reduce stigma and empower people living with dementia and their carers.
We formulated the intervention and delivery approach based on these dialogues. Our intervention was further informed by existing evidence-based approaches to reduce stigma (for example, integrating social contact) and local expertise about delivering community interventions. For example, we used a ‘train the trainer’ approach together with community health workers which allowed us to increase local involvement in delivering the intervention.
We developed virtual ‘social contact’ videos where people living with dementia and their care partners from the community shared personal stories of dementia, their experiences of stigma and how they confront it. We sought further feedback on practical details around format, delivery, numbers to refine the intervention.
Overview of Kenya anti-stigma intervention components
Within the pilot study we measured attitudes towards dementia before and one-month after the intervention was delivered to the general public. This was complemented by qualitative interviews.
Amongst the general public who participated in the pilot study, the findings highlighted improved knowledge and attitudes towards people living with dementia and their carers.
Click graph to view full version
These findings were supported by qualitative feedback, demonstrating that intervention was successful in improving knowledge and moving away from stigmatising beliefs:
What struck me most about dementia is that it’s a disease. Over time we believed it wasn’t a disease. [Initially] We thought people had been bewitched or were simply foolish.
I learnt [from the intervention] that, I can trust this person to help me [in certain activities]. For instance, when preparing food, he could help me sort out bad maize, peas, from the good ones
We used to think that people living with dementia are facing consequences for their evil deeds but now I know that it's not their wish.
After the training, I learnt that I need to know from him what he would prefer to eat. So now life is not as hard as it was before. It’s now easier to care and support him.
Alzheimer’s Disease International. (2017). Dementia in sub-Saharan Africa: Challenges and opportunities.
GBD 2019 Dementia Forecasting Collaborators. (2022). Estimation of the global prevalence of dementia in 2019 and forecasted prevalence in 2050: An analysis for the Global Burden of Disease Study 2019. The Lancet. Public Health, 7(2), e105. https://doi.org/10.1016/S2468-2667(21)00249-8
United Nations. (2017). World Population Ageing 2017—Highlights (ST/ESA/SER.A/397). Department of Economic and Social Affairs Population Division.
