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Highlights from ADI2015: The local and international action against dementia

Glenn Rees AO, Chair Elect of Alzheimer’s Disease International started off today’s proceeding by congratulating Australia on the collaborative partnerships that exist between Australian government departments, advocacy groups and consumers who all work towards a common goal of helping those living with dementia.

Today attendees were asked about what dementia meant to them and here are their responses.

 

The Australian government action against dementia

Mr Rees welcomed Senator the Hon. Mitch Fifield (pictured) the Australia Government Assistant Minister for Social Services to officially open day two of the conference. Senator Fifield outlined the major reforms the Australian government has put in place, speaking about the current commitment of the government to invest $200 million into dementia research over 5 years, which includes a $50 million National Dementia Research Institute (NDRI). The NDRI is currently being established and will be focused on translating research into practice – more about this initiative can be found here.

When outlining the priority research areas set by the National Health and Medical Research Council (NHMRC) Senator Fifield said, “Priorities for dementia research in Australia are now being informed by people with dementia”.

Senator Fifield highlighted dementia risk reduction strategies, quality care and developing disease modifying therapies – more on these priorities can be found here. You can read Senator Fifield’s full speech here.   

International action against dementia

A highlight of today, was a keynote address by Harry Johns, the President and CEO of the USA Alzheimer’s Association who welcomed the global effort working towards the common goal of a world without dementia. He reiterated the commitment of the World Dementia Council to find an effective treatment or disease modifying therapy by 2025. However, along with this he focused on the need to expand work within low and middle income countries, where he told attendees that 71% of people worldwide will be living with dementia in 2050.

Mr Johns is committed to working to improve care practices for people living with dementia, as well focusing on dementia risk reduction and intervention methods to be able to achieve the best global impact on reducing numbers of people with dementia in the future and convincing governments to do more.

Marc Wortman, the Executive Director of Alzheimer’s Disease International spoke about their current strategic plans now and into the future, telling attendees:

“Dementia is a societal problem and we need to provide care today while we look for the cure tomorrow,” said Mr Wortman.

He reminded attendees that the current global cost of dementia is US $600 billion or 1% of global GDP and every four seconds a new case of dementia is diagnosed. So how do we reduce this number? Mr Wortman explained that Alzheimer's Disease International is advocating for all countries to set up national dementia plans and public health approaches to fighting dementia and welcomes the work of local Alzheimer’s advocacy to achieve this. Visit the Alzheimer's Australia Your Brain Matters website to see what Australia is doing in this area

Mr Wortman also said to keep an eye out for two reports being released later this year by Alzheimer’s Disease International updating on the number of people living with dementia around the globe, as well as the global cost of dementia. Along with this he also said there would be a special report released specifically focusing on women and dementia.

The latest on Dementia Friendly Communities

Kate Swaffer, a dementia advocate who is living well with Younger Onset Dementia spoke about her work in developing and consulting on dementia friendly community projects around Australia and globally.

“Dementia friendly means including US! And nothing about us should be without us,” Ms Swaffer said.

She said a dementia friendly community is about respect, equality, accessibility, autonomy, inclusion and supporting our disabilities.

Ms Swaffer was heavily involved in implementing a dementia friendly community in a coastal NSW town of Kiama and she told us the key steps to developing this initiative was to establish a local advisory committee of people living with dementia, along with making sure the initiative supported local organisations and businesses to become dementia friendly.

“Without these initiative our communities will never be considered dementia friendly”

Ms Swaffer finished by quoting Martin Luther King Jnr who once said

“Our lives begin to end the day we become silent about things that matter.”

Helga Rohra, also a dementia advocate who is living well with Younger Onset Dementia gave a fabulous heartfelt presentation saying:

“I am still valuable, I am me! – I don’t want to be a victim of dementia I want to be the VICTOR!” said Ms Rohra.

She also explained that dementia friendly should simply be about inclusion saying:

“Each of you are enablers to make us live well with dementia – include us as much as possible”

In line with this, Danielle Greenwood from Arcare Aged Care spoke about the importance of relationship centred care along with person centred care explaining to attendees:

“Relationship centred care is simply about knowing the person and meeting their needs.”

Ms Greenwoods presentation outlined the importance of consumer directed care and training staff to create relationships with individual residents.

She explained to attendees that after implementing this initiative there was a significant reduction in injuries, falls, and other illnesses among residents, she also said the facility has had a 100% reduction in complaints and a 44% increase in compliments.

Dr Allen Power, Associate Professor of Medicine from the University of Rochester, USA spoke about enhancing well-being of people with dementia by focusing on wellness, avoiding using stigma and fear to advance the cause and creating a shift from being not just being ‘dementia friendly’ but also being ‘dementia inclusive’ quoting colleague Dr Richard Taylor who has said:

“I believe as people progress with dementia their humanity increases.”

Dr Power finished by saying:

“We can start working on well-being now”

Summary

Once again, attendees had the option to attend multiple presentations on a variety of topics including supporting and enabling people living with dementia, awareness and stigma, community support and consumer education and training.

Danielle White, a dementia educator and advisor for Alzheimer’s Australia NSW spoke about dementia awareness in indigenous communities telling attendees about the NSW initiative known as ‘Dementia and our Mob’

She showed attendees a great video clip which asked people living in indigenous communities what is the one memory you would never forget? Here is what they had to say:

 

 

 

Another day of amazing presentations and it was great to see the discussion being led by people with dementia and their carers focusing on important issues which impact on them now but also thinking about the future.

I’ll finish with a quote from Ms Rohra’s presentation who said:

“See the faces of dementia, see the individual – it is time to make a difference.”

Sources: 

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