Category Archives: disAbility rights

Psychologist Denise Craig presents “The Dementia Enablement Guide”

Last week we had the privilege and pleasure of a supporter of DAI, and friend of our members, senior psychologist Denise Craig from Cairns in Queensland. To introduce the presentation, Denise said:

When my mother was diagnosed with Alzheimer’s and Vascular dementia at the age of 65, dementia became my working life’s vocation. I was fortunate enough to achieve a position where I could assist people diagnosed with dementia, and those providing care and support, both through face to face assistance and also ‘bigger picture’ systemic strategies.

In 2012 as a private undertaking I established a Facebook page. Via posts and private messages I have had the opportunity to hear from many people with rich and diverse stories to tell. Through social media I noticed a pattern of criticism of health professionals, namely that there is little help after diagnosis.

People diagnosed with dementia, care partners, family & friends, can find it hard to come to terms with a dementia diagnosis. Bearing in mind that no two people will have identical experiences, generally speaking dementia is an illness for which support is imperative.

Support includes both early intervention & ongoing assistance to adjust to changes, develop coping strategies, maintain maximal independence & improve quality of life. Holistic assistance which encourages people to live to their personal potential is the cornerstone of good care. By adopting an enabling approach focused on preferred occupation & meaningful activity, independence & well-being, people diagnosed with dementia & their significant others have an opportunity to live to their post-diagnosis potential.

Twelve months ago whilst meeting Kate Swaffer in Melbourne, we shared a robust conversation about rehabilitative/enablement opportunities. I committed to the construction of a ‘Dementia Enablement Guide’ to assist GPs to discuss options which consumers might find helpful.

Through my role within the Qld Statewide Dementia Clinical Network I established a multidisciplinary group which completed this project. A group of people living with dementia, care partners, clinicians and academics reviewed the document and provided valuable feedback. The tool is being trialled in Cairns and Kiama, NSW (as a part of their DFC project), and a consumer version is nearing completion.

The Dementia Enablement Guide is freely available via Qld Health’s website at https://www.health.qld.gov.au/cairns_hinterland/docs/gp-dementia-enablement-guide.pdf

You can also download Denise’s power point slides here Denise Craig presents The Dementia Enablement Guide to DAI

Press Release: Kate Swaffer joins WDC

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Date: February 25, 2016, Immediate release

DAI Chair, Kate Swaffer becomes a member of the World Dementia Council

Dementia Alliance International (DAI) Chair Kate Swaffer from Australia has today officially become a member of the World Dementia Council, the second person with dementia to join this council. This is an important and significant appointment for DAI, and for people with dementia globally.  She joins another DAI member, who is also Vice Chair of the European Dementia Working Group, Hilary Doxford from the UK.

In light of our work towards full access for people with dementia to the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which is a global tool for achieving social change, this second appointment is particularly significant. Article 19 of the Convention is the right to live independently and to be included in the community.  DAI successfully advocated for many months to have at least one person with dementia on this Council, and it is very encouraging today to announce this second appointment.

DAI is the global voice of people with dementia, and seeks to represent the more than 47.5 million people currently diagnosed with dementia, and every new person diagnosed every 3.2 seconds, and this appointment shows progress towards fuller inclusion in those things that are about  us. Whilst our membership is  not yet represented in all countries, we do now have members in a growing number of non English speaking countries, and as membership grows, so will our collective voice.

 “Nothing about us, without us”

Susan Suchan on living with dementia

This week we ar sharing the first of our video series of our members speaking out about living with dementia, about how they feel, and how others can better support them. Special thanks to Susan Suchan for sharing this with us. You can read more of her story here.

Wishing you all a happy and safe festive season

 

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The Board of Dementia Alliance International wishes our members and supporters a happy and safe festive season, and we very much look forward to seeing you online or in person somewhere in 2016.

It is the festive season for many, and we take this opportunity to wish you all a wonderful time with your families and friends, and hope you stay safe.

It is worth remembering, it is not always a joyous time for everyone, so be kind and gentle on yourselves, and with each other.

Living with dementia: new perspectives

Our blog today also follows the email we sent inviting you to attend the Webinar, A Meeting of The Minds – Living with dementia: new perspectives –  with Dr Al Power in January 2016.

You can register for it here…

Happy 2nd Birthday

Two weeks before the event with Dr Power, we will celebrate our 2nd birthday with an online global celebration, and you will receive an Zoom meeting link early in the New Year.

Keep the date free: Wednesday January 13 / Thursday January 14, 2016 (USA/AU)

It will be a fun and exciting time, and we have much to celebrate. Perhaps the best thing to celebrate is the fact we are growing from strength to strength, with membership, and a louder global voice.

There were (perhaps still are) many doubters that people with dementia could set up and run their own group, including providing FREE membership and FREE services top others with dementia, all done with very little funding. Be proud . We certainly are.

Wear a hat, make a cake, do what ever you feel will make it fun for you.

If you live in the same town or area as other members, get together on the day, and join in as a group. Join forces with other DAI members in person. Have fun, and keep making a difference to not only you down life, but to the lives of others.

Our new Board of Directors

We will introduce our new Board of Directors early in the new year, and look forward to a very exciting year for people with dementia globally as we move towards a world where there really is “Nothing about us, without us.”

Please note:

There will be no Board meeting or Members Open meeting in January 2016, but instead a shared  celebration and an opportunity to meet the new Board members. All formal meetings like this will resume in February.

Best wishes from the 2015 outgoing and 2016 incoming Board members of Dementia Alliance International.

Chair and Editor: Kate Swaffer

Celebrating International Day of Persons with disAbilities

 

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It is the International Day of Persons with DisAbilities, and it is wonderful as the Chair of Dementia Alliance International to have won a National disAbility award in Australia in this space, as your representative. You can read about that and watch a video of it here, and see a picture of all the winners if you re interested.

For the first time (as far as I have been able to discover), it is the very first time that dementia and disAbility have been fully in the same space, and with the work and advocacy many have been doing locally and globally, some for many years, to ensure that people with dementia are eventually recognised under the United Nations Conventions of the Rights of Persons with DisAbilities CRPD), this is a significant award for all people with dementia.

The theme for the International Day of People with DisAbility 2015

Inclusion matters: access and empowerment for people of all abilities.
The  Sub-themes for IDPD 2015 are:
  • Making cities inclusive and accessible for all
  • Improving disability data and statistics
  • Including persons with invisible disabilities in society and development

Alzheimer’s Scotland have a Charter of Rights, and have done some work in this space, but globally, people with dementia have been left out from recognition under the CRPD. This is, in the opinion of many of us, a breach of human rights, and it is outrageous and an oversight we have not had advocacy organisations more actively working towards our recognition as people with disAbilities.

We fit easily into the category of their sub theme this year, as persons with invisible disabilities, and recognition under the CRPD will change the sector due to the fact there is legislation, already in existence, that gives us some level of protection against things like physical or chemical restraint, and institutional abuse.

For a bit more information about the day, the UN says: “The annual observance of the International Day of Disabled Persons was proclaimed in 1992, by the United Nations General Assembly resolution 47/3.

The observance of the Day aims to promote an understanding of disability issues and mobilize support for the dignity, rights and well-being of persons with disabilities. It also seeks to increase awareness of gains to be derived from the integration of persons with disabilities in every aspect of political, social, economic and cultural life.”

Editor: Kate Swaffer