Tag Archives: Copyright 2015

DAI A Meeting Of The Minds, with International speaker Nicole Batsch

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Wednesday December 9 (USA/UK)

Thursday December 10 (AU/NZ)

“Dementia Friendly Communities Defined – Key Components for a Successful Start”

About our event:¬†In England where there are over 60 towns and cities that are working towards becoming Dementia Friendly Communities, a large scale expert and public consensus process took place from 2014-2015 to define the common elements of what being “dementia-friendly” means. This process culminated in the publishing of the British Standard Code of Practice for the Recognition of Dementia-Friendly Communities in England developed by the British Standards Institute and the Alzheimer’s Society with funding from the Department of Health and launched in July 2015.¬† The aim was that this code of practice would help to support existing communities and to inspire new communities. It provides recommendations on:

  • Who needs to be involved in setting up a dementia-friendly community
  • Aims and goals that should be central to all dementia-friendly communities
  • Areas to focus on and the processes needed for your dementia-friendly community to operate successfully
  • The positive changes for people with dementia that we would expect to see from a dementia-friendly community

About our Speaker: ¬†Nicole Batsch has over 18 years experience in developing and supporting¬†ageing and dementia care¬† programmes¬†across the US and globally.¬†¬†She is currently obtaining her PhD from King’s College London and is a¬†consultant with Alzheimer’s Disease International. ¬†In this role, she co-authored the World Alzheimer’s Report 2012: ¬†Overcoming the stigma of dementia which included a global survey of stigmatising experiences of¬†people with dementia and family¬†caregivers and serves as an¬†adviser to the¬†World Health Organisation on¬†a family caregiver education programme. ¬†In this session, Nicole will be discussing her involvement with the British Standards Institute and the¬†Alzheimer’s Society¬†in developing the British Standard Code of Practice for the Recognition of Dementia Friendly Communities in England.

Date: Wednesday December 9 / Thursday December 10, 2015

Speaker: Nicole Batsch, PhD candidate from Kings College, UK

Register here…

Wednesday December 9 Start Time (USA/CA/UK/EU):

  • 12.00 p.m. Pacific Time (San Francisco);
  • 1.00 p.m. Mountain Time (Denver);
  • 2.00 pm Central Time (Chicago)
  • 3.00 p.m. Eastern Time (Washington DC);
  • 10.00 a.m. in Honolulu, Hawaii;
  • 8.00 p.m. in the UK, London;
  • 9.00 p.m. in Paris and Budapest.

Thursday December 10 Start time (Australia/NZ/Japan/Indonesia):

  • 6.00 a.m. in Brisbane;
  • 7.00 a.m. Sydney, Canberra, Melbourne, Hobart;
  • 4.00 a.m. in Perth;
  • 6.30 a.m. in Adelaide¬†;
  • 9.00 a.m. in Auckland, New Zealand;
  • 3.00 a.m. in Indonesia;
  • 5.00 a.m. in Tokyo, Japan

The WEBINAR¬†will run for 1.5 hours.¬†To find out the start time in your city,¬†click here…

Register here…

Note: Attending our events supports everyone connected to dementia, whether the person diagnosed, our care partners, or the professionals and research community who work to suppport us and improve our lives.

We have needed to start to charge a fee for those who are working in the sector. You will be able to claim the cost of the tickets as a tax deduction. The fee for this service supports your education, and also supports our work which directly supports people with dementia.

Certificates of Attendance are available for professionals and students.¬†If you need a certificate of attendance, please email us at¬†[email protected]

People with dementia, and their care partners, are usually no longer in paid employment, and therefore tickets remain FREE. 

Donations are always appreciated.

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  • $US 100.00¬†covers the approximate monthly cost of the MailChimp subscription
  • $US 300.00¬†covers the approximte cost of three months of website management fees
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WHO First Ministerial Conference on Dementia

Source: WHO
Source: WHO

It was significant and pleasing for our members that we were represented at this very important¬†¬†World Health Organisation Ministerial Conference ¬†on Dementia. ¬†DAI Co-chair Kate Swaffer gave a key note speech on Day 2, and two DAI members Hilary Oxford from the UK, also a member of the World Dementia Council, and Michael Ellenbogen from the USA were part of a panel ‘The People’s Perspectives’ at the end of Day 1. Watch Kate’s speech here:

Alzheimer’s Disease International also¬†reported on the event, and below is¬†the transcript of the speech; you can download the power point presentation¬†¬†WHO_17 March 2015_ppt¬†here.

Speaker notes: Day 2 Plenary Presentation

(Kate Swaffer, 8 minutes)

Slide 1: Distinguished guests, Ministers, ladies and gentlemen.

Thank you for the invitation to speak today; it is an honour and privilege to represent the members of Dementia Alliance International, and the global community of over 47 million people living with a diagnosis of dementia. It is important that people with dementia, in the same way as people with any other disabilities, are included as equal partners in the conversations about them. This is our basic human right.

Slide 2: In collaboration with Alzheimer’s Disease International, Dementia Alliance International has become the peak body for people with dementia globally, also working together with the Dementia Working Groups around the world. We also advocated for the World Dementia Council to invite at least one person with dementia onto the Council, and we are thrilled Hilary Doxford from the UK is a member. We welcome and appreciate this significant appointment.

I believe the People’s Perspectives session yesterday in many ways set the scene for people with dementia, because our lived experience is as important as finding a cure, and although I won’t share very much of my personal story, I have been a family carer for a number of family and friends with dementia, now deceased and am also a care recipient of services for people with dementia due to my own diagnosis. To say I have a very vested interest in dementia is perhaps an understatement!

We applaud the World Health Organisation for holding this conference, and the work of the World Dementia Council as well as ADI and everyone in attendance. Like you, we implore governments to invest more money into research, as that will save in the future, but we would hope that there is a more balanced focus in research, and not only the one after the golden egg, which is a cure. That focus excludes and denies the 47 million people currently diagnosed with dementia of better services, treatment and care.

Slide 3: The discussions yesterday were illuminating and of great interest to people with dementia, although it was interesting to note that rehabilitation and living well with dementia were not mentioned.

ADI have a charter ‚ÄúI can live well with dementia‚Äô ‚Äď for this to have any traction, people with dementia believe we must all include this goal in our work.

Slide 4: As someone suggested yesterday, we all may have many issues important to bring to this meeting, but three of topics of significant importance to people with dementia are;

  1. That we have human right to a more ethical pathway of care
  1. Being treated with the same human rights as everyone else, under the Disability Discrimination Acts and UN Convention on the Rights of Persons with Disabilities
  1. That research does not only focus on a cure, but on our pre and post-diagnostic care, and on pre and post vention including rehabilitation.

When I was diagnosed with dementia at the age of 49, I was told to get my end of life affairs in order, to give up work, to get acquainted with aged care, and to go home for the time I had left. I term this Prescribed Disengagement, but chose to ignore it and with support from the disability sector, engaged in authentic brain injury rehabilitation and other non-pharmacological and positive psychosocial interventions for dementia, including advocacy.

If I had been treated after a stroke, there are ethical and rehabilitative national and international guidelines; this needs to happen for dementia and thanks to ICHOM being led by Alastair Burns, this is in progress and I hope that rehabilitation becomes part of the guidelines.

It may not be a cure, but it will ensure we have a better quality of life, and I believe, research will ultimately emerge to prove it can slow the progression of dementia. If it only keeps people with dementia out of residential care for 12 months longer than we experience now, it will save governments billions of dollars. Many established mechanisms for development and assessment of clinical interventions have not been adapted to population ageing or to dementia. The time for this is now.

New, sustainable models of care that balance the role of family and government, and that overcome gender inequities, are urgently needed. Advances in information and communications technology, assistive devices, medical diagnostics, and interventions also offer much promise and it is promising that the World Dementia Council has this as part of their focus.

I have worked hard on re-empowering other people with dementia to reclaim their pre diagnosis lives, and on policy and research for dementia, on dementia friendly community initiatives in Australia, and have a particular focus on a more ethical post diagnostic pathway or model of care.

Yes I want a cure, but more importantly, I want a better quality of life for the more than 47 million people currently diagnosed with dementia, where best practice is the not norm, but still the exception. In rich western countries, this is especially unacceptable.

People with dementia also need to be at the heart of the conversations about them. We may not be able to march in front of our respective Parliament houses, but we are marching online in large numbers for inclusion, research, better care, and against discrimination and stigma. This is our human right.

We do not yet know whether people are living longer and healthier lives or are simply experiencing extended periods of morbidity.

Alzheimer’s societies and associations around the world, and people with dementia need to use the UN Convention on the Rights of Persons with Disabilities to benefit people living with dementia. ADI in their 2012 report quite rightly highlighted this out.

It is our human right not only to person centred care, and ethical care plans, which currently we are not often offered until we need palliation ‚Äď if then, in some countries – but to a system and world that stops discriminating against us. The current system of care is unpalatable and unethical, and we deserve much more.

Thank you. (Kate Swaffer)

The full notes are also available to print here WHO Ministerial Conference on Dementia_17 March 2015_Kate Swaffer

We thank Dr Shibley Rahman who supported us in finding the recording of the presentation; he also published¬†a blog about it here…

Copyright © 2015

Presenting at conferences: a few guidelines

ADI Breakfast mtg group_ADI2012The theme of this blog has developed after a request on Facebook about how to become a speaker at conferences such as the joint Alzheimer’s Australia and ¬†Alzheimer’s Disease International conference 2015. The image is of a group of us at ADI2012 in London.

The process is moderately complicated, although we are actively working each year with them to make it more dementia friendly, and for this years conference, people with dementia were able to send a word document of their abstract, rather than having to navigate the very complicated online abstract process. Curiously, this year, I was one of the reviewers of the abstracts, and found that process far easier than sending my abstracts via their system, which of course I will feed back to them!

So, you might ask… what is an Abstract for a conference?

What is an abstract?

An abstract is a brief overview, not an evaluative summary of a longer piece of writing or presentation. Different kinds of abstracts contain different information. Social science and scientific abstracts contain a statement of the research problem or purpose, a statement¬†about current approaches and a gap in the literature (for theses, but not always journal articles), a statement of the method and methodology and a summary of the findings and the conclusions. Humanities abstracts contain a description of the problem, a statement of current approaches and the gap in the literature (for theses and exegeses, but not always journal articles), the main position or ‘argument’ and an overview of the contents.

The abstract style for conferences that attract people with dementia  is a summary of about 300 words, of what the oral presentation will offer to the audience. It is not a scientific abstract, requiring methodology or research of any kind, but a precise of the topic we want to present on, in line with the conference themes, which you can see here for this years ADI conference.

How to write an abstract

  • Abstracts are usually written after the longer paper is completed, but it is often useful to start putting the elements together earlier on. This is because the abstract can help you to ‘map’ the overall presentation¬†and check that the key steps in the story line hold together.
  • The first step in abstract writing is to re-read the longer presentation, perhaps highlighting¬†the relevant information.
  • Next write a sentence or two, or a short paragraph ¬†for each of the key¬†ideas you want to discuss in your presentation.
  • Check that each sentence or short paragraph¬†summarises the key points¬†and does not leave anything important out.
  • Then put the sentences together and work towards a unified abstract in which the elements flow naturally from one to the other. Pay particular attention to key words and transitions to ensure the ideas flow from sentence to sentence.
  • The last step is to edit the abstract and to check that it fits within the word limit.

Cut off date for abstract submissions

There is always a cut off date for the acceptance of abstracts, so be sure to find out what that is, and mark it on your calendar. It takes me much longer than it used to to write anything, so ensure you allow enough time too be able to submit on time.

The waiting game

So, once you have submitted an abstract, either via their online submission process or by email you then have to indulge in the waiting game to see if it is accepted. That means you cannot make any plans to travel or register, unless you want to go to the conference regardless of if you present.

Personally, I find attending conferences is helpful to increase my knowledge, too network with others, l and to make friends. They also, often, frustrate me as I come away thinking that researchers and service providers still have so far to go!!!!!

Next steps

If you abstract is accepted, you will be advised by the conference organisers by email, and can then make your plans too attend. This involves registering for the event, which is best done at the Early Bird Registration Rate, so keep an eye on that date which can be found on the conference registration page.

Many event organisers also have a special reduced rate for a person with dementia, and their support person.

Writing your presentation

Personally, I find writing my presentations is helped enormously by choosing the topic I want to present on conforms with the themes on one of the headings of the event. A lived experience talk is easier as it is just that, a discussion of your lived experience. A presentation I had accepted for ADI2015 is on stigma and language, based on some work I did at university last year, which means it must have the key elements of that research paper in it.

I usually make some initial decisions about how many points to cover, based on the amount of time a presentation will be. Advice I have often been given, is 100 words maximum for each minute of a presentation, and one power point slide per minute. I usually follow this, and so far, it has worked well.

At the University of SA, I learnt from an Indigenous lecturer about the mud map way of writing, and once I have written out my full presentation, I select the key sentence from each paragraph, which is often the first or last line, or key theme, put them together, than work with editing it and ensuring it flows well from there.

Sometimes, I start with power point slides, add the key points I want to cover, and then start writing to each slide. Everyone has their own way of working.

Glenn Rees, the previous CEO of Alzheimer’s Australia, who is now Chair-elect of ADI’s advice to me was if I have more than THREE KEY MESSAGES my audience will be less likely to remember any of them, and so I try and stick to discussing three main topics or issues with each presentation.

Funding your attendance at conferences

Most people with dementia and their families are financially challenged, due to the financial impact of the disease, the numerous invasive tests needed for diagnosis, and regular follow up, and for younger people, due to not being able to remain employed. This means funding a trip to a conference can be prohibitive, especially when you also have to find registration to attend, meals, air fares, travel insurance, passports and other costs of travel.

Dementia Alliance International (DAI) raised funds through members efforts for a number of members to attend ADI Puerto Rico in 2014. This year,  DAI has received a small amount of funding from ADI to support a small number of people to attend.

We do have a formal process for applying for a Bursary, which we will promote for the ADI2016 conference, IF we have funds available for that again next year.

In the mean time, I personally can highly recommend that speaking at conferences is a positive intervention for dementia, and suggest if you are interested, then start to make your self know to local service providers in your local area that you are available to speak to their staff, and start practicing.  This is a cost efficient way to become good at it as well! In my home town, because I do not drive anymore, most organisations provide me with taxi vouchers, as I am educating their staff for free, so it works for us both.

We, the people living with dementia, are the experts through the lived experience, and if we don’t tell people without dementia what it is really like, how will they ever be informed enough to improve our¬†care.

Editor: Kate Swaffer Copyright 2015