An international partnership approach to developing dementia awareness strategies and research

Alzheimer’s disease is the most common cause of dementia. Dementia describes a group of related symptoms that affect memory, language, thinking and the ability to carry out daily activities. Current estimates suggest that 55 million people are living with dementia globally, and by 2050 this number will triple to about 153 million. The prevalence and incidence of dementia will continue to increase and low, and middle-income countries (LMIC) are expected to realize the greatest increases.

The WHO and Alzheimer’s Disease International have called on all countries to make dementia a public health priority. One of the priority areas of action that need to be addressed is raising awareness. Some high-income countries have progressed in their efforts to make dementia a public health priority and invest in dementia research. This is not the case for the majority of LMICs where awareness and understanding of dementia remains low which can lead to stigma, social isolation and a gap in timely diagnosis. Kenya is one such country where the number of people living with dementia will rise sharply (from 86,815 in 2019 to 361,042 in 2050) (Global Burden of Diseases 2019 Dementia Forecasting collaborators, 2022), yet dementia has yet to be recognised in health and social care policies. The impact of dementia on families in Kenya coupled with the low levels of understanding about the condition are described in a recent publication.

Dr Purity Mwendwa, a Marie Sklodowska Curie Actions (MSCA) Dorothy fellow, is conducting a research project known as  ENGAGE: (dEvelopiNG A neiGhbourhood model for dEmentia). Her project is hosted at Trinity College Dublin and University of Greenwich in the UK. ENGAGE aims to improve awareness and understanding of dementia in Kenya and ultimately develop a way in which network of friends, neighbours and the community can better support people with dementia and those who care for them to stay connected and actively engaged with their communities.

According to the WHO and Alzheimer’s Disease International “Awareness-raising campaigns should be relevant to the context and audience. They should be accurate, effective and informative and should be developed in consultation with people with dementia, their families and other stakeholders, including civil society.” The planning stages of ENGAGE have entailed building relationships with communities in Meru County in Kenya, where the project is based, and forming a local advisory team. The advisory team comprises 10 community members who have received training on dementia. With support from the ENGAGE team, the advisory team is developing awareness-raising messages that can be printed on T-shirts and other promotional materials. Their active involvement in this process ensures that messages have a local relevance and are potentially impactful.

In order to ensure that these messages are positive and not stigmatising, Purity has been collaborating with Dementia Associates (people with a lived experience of dementia). The Dementia Associates are based at the University of Salford in the UK. Dementia Associates have provided feedback on the messages developed by the advisory team in Kenya, and this has helped to refine and improve these messages. Purity will be presenting this work at the International Dementia conference 2024 in September in Sydney, Australia. You can find a video presentation of her upcoming talk at the following link: Concurrent Streams | International Dementia Conference.