As most countries in the Commonwealth are ageing and the population needs long-term care, dementia should be made a global health priority.
But how to do it and what measures to put in place depend on the respective governments, which have to deal with their unique set of circumstances, culture, ageing demographics and political system.
“In the last 50 years, the demography of all the Commonwealth countries has changed massively, reflecting global trends.
“Fertility rates have fallen, life expectancy has improved and populations have grown considerably in size.
“Many of these countries, especially the poorer ones, do not have proper resources to treat dementia,” said Commonwealth Association for the Ageing chief executive officer Klaus Zimmerman.
In Uganda, fertility rates are just under six children per woman, compared to Singapore, which falls on the other extreme with only 1.23 children per woman.
All the other Commonwealth countries fall somewhere in between.
The 10 fastest ageing countries in this group include Brunei, Antigua, Mauritius, Sri Lanka, Singapore, Fiji and all the Caribbean island states.
The slowest ageing countries are in sub-Saharan Africa, while Pakistan is the only country where children will make up the largest segment of the population until 2090.
“It is questionable whether health systems, even in high income countries, are ‘fit for purpose’ in their capacity to respond to the demands placed on services by a high and increasing prevalence of frailty and co-morbidity in the older population.
“In Australian nursing homes, a high percentage of the residents suffer from some form of dementia and are often bedridden.
“In the past, they stay in these homes for five years, but now, they are there for about 10 years, so we need to change the infrastructure to cater for the growing needs,” said Zimmerman.
He was one of the six panellists who spoke at the Meet the Experts session at the Alzheimer’s Disease International 21st Asia Pacific Regional Conference held in Kuala Lumpur on Aug 16-18, 2019.
Getting the right information
Aged care has moved at a snail’s pace around the world because most national health policies focus on non-communicable diseases.
Hence, getting people interested in dementia is a challenge.
“It should be everyone’s business. We need the right tools, but we also need to come together as a network,” commented panellist and World Health Organization (WHO) Mental Health and Substance Abuse Programme technical lead Martin Vandendyck.
Despite being a small nation with less than 500,000 inhabitants, Malta is one of the few countries that has a national dementia strategy.
“We were the first in 1968 to put in place legislative measures to safeguard our older persons and future generations.
“For example, the government has developed a 24/7 free phone service whereby any citizen can call and be provided with all the professional help and assistance they require,” said Malta’s Office of the Junior Minister for Persons with Disability and Active Ageing chief of staff Sean Mangion.
According to Alzheimer’s Disease International chairman Glenn Rees, there is always a debate about whether dementia should fit into aged care or mental health, or be a free-standing plan.
“My priority would be having it as a free-standing plan because dementia will get squashed by the elephants (mental health and aged care) otherwise, so it has to be visible.
“There are some fundamental issues for countries when it comes to dementia and where it fits because there are many non-communicable diseases that come first.
“Secondly, how do you stop hospitals from using the most expensive resource, which might not be appropriate for people with dementia?
“What do you do when there is no community structure? How do you take these patients from hospitals and transition them back home?
“That should be a number one policy issue for a country like Malaysia,” he opined.
Rees also pointed out that when people get diagnosed with dementia, they are not told where to go for information and support, which is a problem all over the world, irrespective of high- or low-income countries.
He said, “In Australia, if you’re lucky, the general practitioner tells you. If not, you’re left to find your way.
“Over time, you have to increase awareness, get the message out, train and build capacity across the medical and care profession.
“Engage the community using dementia-friendly approaches.
“Governments should also provide legal protection to enable people with dementia to access services. For example, if they shoplift, don’t treat them like a criminal.”
Reach out to the young
While older people are more empathetic towards dementia patients, the younger generation may not understand what the fuss is all about, thinking it is an ailment that affects the old.
Dementia is a loss of thinking, remembering and reasoning skills, and is more common as people grow older (up to half of all people age 85 or older may have some form of dementia), but it is not a normal part of ageing.
For Melissa Chan, her journey started when her father was diagnosed with young onset dementia.
She was 14 years old and was with him as he fought the condition, while the family struggled to redefine normalcy, until he passed away in 2014.
Putting her experience together, the enterprising young woman founded Project We Forgot in 2015 – a community that provides locally relevant support, knowledge and access to services for caregivers of persons with dementia.
“The project was started to humanise the condition and it brings together young people from different backgrounds to build a community.
“The power of digital is the way young people can come together and have that voice.
“We are very impatient; we want to see change, more access to care and increase in quality of care.
“As a young caregiver, dementia either pushes you to grow as an advocate or break you,” said the youngest panellist.
A person in his 20s would digest the information very differently from someone older, so different tactics are needed to keep the young engaged.
Chan, who is currently the head of community and outreach at Homage, an on-demand homecare platform, said, “The easiest way is online. Understand what kind of things we are interested in.”
Adding his thoughts on the subject was Emmy award-winning producer and A+E Networks Asia production director Chris Humphrey.
“Young people cannot relate to the elderly, let alone elderly sick people.
“So to get any attention from anybody through whatever channel, we can’t just put out messages. We’ve got to create some awareness.
“We must cater for different age groups because no one case fits all. We must be clever about how to get people to watch something that is relevant to them.
“It’s a dark subject, but there are a lot of ways we can work on it to send out subtle messages.
“We don’t need the hardcore medical details, but say ‘Hey, dementia is out there, it’s not going anywhere, what can we do to embrace it?’” he said.
Humphrey suggested starting in schools, making a video and making it super user-friendly.
“Make dementia on par with diabetes in terms of people’s awareness.
“People are scared or negative when they don’t understand something that is not black and white.
“Get rid of that fear and try to expose them by changing the approach without over-simplifying things,” he said.