I was invited by Adelina Comas Herra to attend the Modelling Dementia Conference at the Lincoln Centre in London.

The conference was a final showcase of the work of the MODEM Project.

Their team of researchers is led by the London School of Economics and Political Science, in partnership with the Universities of Newcastle, Southampton and Sussex and the International Longevity Centre UK.

The project combines the expertise of researchers in simulation modelling, social gerontology, health and social care economics, clinical evaluations, qualitative methods and knowledge exchange.

“As the UK population continues to age, the number of people with dementia will grow considerably over the coming decades.

Continuing with today’s treatment, care and support arrangements is widely seen as unsustainable and unaffordable.

A major challenge is how to provide high-quality treatment and support to these individuals at a cost seen as affordable.”

I arrived early and had time to catch up with Adelina and others.

Amongst others, I also met Margaret Dangoor who was involved in the Reference Group for the project and she has invited me to join the Reference Group for a new Project starting in the new year.

I was shown into the hall where a seat had been reserved at the front.

After the usual welcome and housekeeping speakers looked at the cost of Dementia

Multi-morbidity

at how interventions may help with dementia treatment/care and at what cost.

a view to the situation in 2040, they looked at:

Present cost of Care and Support.

Future cost of Care and Support.

and Adelina talked about the existing care pathway

The day ended with a panel session including Matthew Norton, Chris Roberts. and Margaret Dangoor

Having said my goodbyes, I got a taxi to St Pancras to wait for my train home.

All in all an informative day, no loud music and I was made to feel very welcome.

Recently, I travelled to Nottingham for a Trent Dementia event supported by DEEP UK and Innovations in Dementia CIC.

I arrived at the Railway Station early to meet Julie Hayden who was travelling to the event from the Halifax area.

Unsurprisingly, her train was delayed but we made our connection to Nottingham ok.

Once in Nottingham, we took a Taxi to the Racecourse, where a couple of Trent Dementia members directed us to where the meeting was taking place.

The room was full by the time we arrived, with Professionals, representatives from Charities, People living with Dementia and the Care Partners.

DEEP UK had arrived the day before, had done an audit of the venue and on the morning of the event had put up additional signs, directing us all to the Hall, side Rooms and Toilets.

The event as well as showcasing the great work that Trent dementia does it was also to encourage DEEP groups to form in the Trent Area.

Members of Trent Dementia and DEEP UK including myself spoke during the morning.

The board of Trustees of Trent Dementia were there

as were Rachel Niblock and Wendy Mitchell

Shelagh Robinson

and George Rook from DEEP UK

I took my turning about the importance of including our care partners and family.

In the afternoon, there were side sessions about various issues around Dementia.

I took part in one about Friends and Family with Wendy Mitchell and a lady called Rae.

The details of the other events are lost in the fog of Dementia but I am sure they were very informative for those attending.

The traffic was bad in Nottingham so we had to leave about 15 minutes before the end, joined by Wendy Mitchell and Damian Murphy on our travels home.

Once we arrived at Sheffield Station we said goodbye to Wendy and Damian and I waited on the platform for Julie’s first train taking her back to Halifax via a change at Wakefield  arrived and I then made my way home by taxi.

All in all a good day, hopefully the start of something in Trent to further the work of Trent dementia.

The Alzheimer’s Society 3 Nations Dementia Working Group (3NDWG) is a group of people diagnosed with dementia who want to make a difference whilst we still can by:

• Improving the lives of those with dementia
• Improving the lives of those who support and care for people with dementia
• Helping the work of professionals and policy makers working in this and related areas

The group now has a website.

You can read about the groups Aims, Ambitions and Achievements here.

Membership of the 3NDWG is open to all people with a diagnosis of dementia (or a re-diagnosis of mild cognitive impairment following a dementia diagnosis) living in England, Northern Ireland or Wales.

You can apply here.

Recently,Congress is attended by professionals involved in Dementia Care and services wishing to be informed about and share good practice and innovation.

Importantly, it is also attended by people living with Dementia and those that care for a loved one.

It is an important opportunity for information to flow from both sides of Dementia, from the professional experience to the lived experience, an opportunity to learn and grow better understanding.

Members of DEEP UK did an audit of the venue and placed additional signs to guide us around the building, although I was confused by the sign on the Accessible Toilet as it had a Men’s Toilet and Women’s Toilet sign on the door, so I went in looking for a door for the Men’s Toilet, such is like with Dementia.

There were a lot of informative stands and on the whole the Plenary and Side Sessions were very good.

Some of the 3 Nations dementia Work Group, Steering Group attended and we all spent time on the stand

The one downside was a video played at one of the Plenary Sessions which was too loud.

Myself and others sat with our fingers in our ears and made the rest of the day more challenging than it might have been.

I have Hyperacusis, meaning I have issues with loud noises which can be cognitively challenging.

The highlight was a side session titled “I want to die”.

A seldom discussed topic, for many reasons. People talk about a good life with Dementia, well surely we should be able to choose how we have a good death with Dementia but that is a subject for another time.

On the whole though it was and excellent 3 days and thanks must go to Richard Hawker and his team.

Resources

Official Programme

George Rook’s “Congressional Blog”

Media Release

Thursday 28/29 November 2018

Dementia Australia and Dementia Alliance International to globally champion rights of people living with dementia. Dementia Australia has formalised its relationship with Dementia Alliance International and today signed a new memorandum of understanding (MOU).

Dementia Australia CEO, Maree McCabe said the MOU recognises both organisations are aligned in their purpose to promote awareness and understanding of dementia and to advocate for the autonomy, independence and human rights of people living with dementia.

“We share a commitment and vision for a world where people living with dementia are valued, included and receive the care and support they choose,” Ms McCabe said.

Dementia Alliance International Chair, CEO and Co-founder, Kate Swaffer said the organisations would advocate together to expand the awareness and understanding of dementia across the aged care, disability and health care sectors in Australia and on the world stage.

“Together we will liaise on global dementia policy issues, to ensure our policies and programs are aligned to the WHO Global Dementia Action Plan” Ms Swaffer said.

Dementia Alliance International is the peak organisation with membership exclusively for people with a medically confirmed diagnosis of any type of dementia from all around the world.

“As the global voice of dementia, Dementia Alliance International provides a platform for the many people living with dementia who are capable of representing themselves, or speaking up for those who are no longer able to,” Ms Swaffer said.

“We have members in 48 countries, and self-advocacy is becoming a strong focus, where we work with members of Alzheimer’s Disease International, such as Dementia Australia, to empower others to have a voice.”

Worldwide it is estimated there are 50 million people living with dementia. This number will almost double every 20 years, reaching 131.5 million in 2050.

“According to Alzheimer’s Disease International research, someone in the world develops dementia every three seconds,” Ms Swaffer said.

Dementia Australia is the national peak body and charity for people of all ages, living with all forms of dementia, their families and carers. Dementia Alliance International is the global peak body representing people with dementia.

“Dementia Australia is the first national dementia association to partner with us, and DAI is very proud to be more formally working with them,”Ms Swaffer said.

“It is a natural fit for the two peak bodies to work together to promote awareness and understanding of dementia,” Ms McCabe said.

For further information visit the Dementia Australia website at www.dementia.org.au or Dementia Alliance International at https://www.infodai.org.

Dementia Australia is the national peak body and charity for people, of all ages, living with all forms of dementia, their families and care partners. It provides advocacy, support services, education and information. An estimated 436,000 people have dementia in Australia. This number is projected to reach almost 1.1 million by 2058. Dementia Australia’s services are supported by the Australian Government. www.dementia.org.au

Dementia Alliance International(DAI) is a collaboration of individuals diagnosed with dementia providing a unified voice of strength, advocacy, and support in the fight for individual autonomy for people with dementia. The aim is to bring the community composed of those with dementia together as one strong voice to urge the government, private sector, and medical professionals to listen to our concerns and take action to address this urgent global crisis. It is our firm belief that working together, we will identify concrete action for implementation with the international community, and in the process, ensure our human rights are being fully met. DAI is a registered charity in the USA, and the global voice of dementia. https://www.infodai.org

Dementia is a Global and National Health Priority Area

Media contacts: Louise Handran louise.handran@dementia.org.au +61 490 128 304 / Kate Swaffer chair@infodai.org

When talking or writing about dementia please refer to Dementia Language Guidelines.

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