Raising awareness on dementia

Azlan Othman

World Alzheimer’s Month is a campaign by Alzheimer’s Disease International (ADI) every September to raise awareness and challenge the stigma that surrounds dementia.

This year sees the 9th World Alzheimer’s Month since the campaign was launched in 2012, while World Alzheimer’s Day is on September 21 each year.

Due to the prevalence of vascular dementia in Brunei, Demensia Brunei (dB) commemorates World Dementia Month (WDM) in September with the theme ‘Let’s Talk About Dementia’.

As the world continues to adapt to the coronavirus pandemic, ADI hosted an Advocacy Response Masterclass for Alzheimer’s and dementia member associations and federations around the world on August 19.

Representing dB at the global Masterclass were its Honorary Advisor Datin Jacqueline Wong, President Dr Teo Shyh Poh as well as Dementia Care Skills Trainer and Champion from Dementia Friends Brunei Maizatul Omar.

The focus of this session was on what non-governmental organisations (NGOs) and society can do “to ensure that Alzheimer’s disease and dementia remain a government and healthcare priority through and beyond this very uncertain time”.

The session focussed on five key takeaways where these parties can make a difference – the key actions to ensure that national, regional and local governments are committed to dementia as a part of their COVID-19 responses.

The Masterclass was hosted by ADI’s Deputy CEO and Director of Policy, Communications and Publications Chris Lynch. It focussed on data, non-communicable disease (NCD), mental health, age-based discrimination and the rights of older people during COVID-19.

Highlighting on the aspect of data, Datin Jacqueline stressed on the importance of capturing key dementia-related data during this period especially mortality and diagnosis data particularly what is available now; what is missing; how to approach the Ministry of Health, World Health Organization (WHO) Country Office or relevant research universities.

She said it is important to understand how people living with dementia have been impacted by this pandemic and its effect on diagnosis rates. In terms of NCDs, the Masterclass touched on how to engage with the NCD advocacy contacts and activity in the country and region in response to COVID-19.

The honorary advisor said people with NCDs, like dementia, are being affected and many of those that have contracted and/or been treated for the virus are at risk of new or exacerbated NCD conditions.

On mental health, COVID-19 responses globally have included distancing measures and isolation for vulnerable groups and disruption to support services, including for people with dementia, whether in the community or in care homes.

She said the session focussed on how to engage and support mental health advocacy activity in our country and region to ensure the right resources are prioritised to support people through the crisis and inevitably beyond.

On age-based discrimination and the rights of older people during COVID-19, Datin Jacqueline said age is the biggest risk factor for both dementia and COVID-19.

She said that the older population has been affected by social distancing and isolation based on the scarcity of resources and lack of transparency around triage

decision making. It was highlighted that it is vital that research and clinical trials continue during this period and that disruption is minimised.

“We will need to identify ways in which we can engage with our research community in their efforts to mitigate against disruption in all areas of research, from drug development to diagnosis, from basic science to care,” she said.

The event featured a knowledgeable and multidisciplinary panel of speakers that included Co-founder and Deputy CEO of United for Global Mental Health Sarah Klein; Chair of the Geneva NGO Committee on Ageing Silvia Perel Levin; Policy Manager of NCD Alliance Lucinda Westerman; and Research and Policy Project Lead at ADI Wendy Weidner. Datin Jacqueline said that the ADI Masterclass was an excellent tool for sharpening advocacy activity around five important areas.

“It was an extremely practical and insightful discussion. Now, more than ever we need to talk about dementia.”