DAI attends mhGAP Forum 2017

Last week as Chair and CEO of DAI, Kate Swaffer was invited to attend the mhGAP Forum (mh = mental health) in Geneva. This involved some pre meetings and planning, and then two full days at the WHO attending plenary sessions, and attending topical side sessions.

Although we felt there was a priority to attend the Quality Rights side session, as DAI has been involved in that work, Kate was invited to present at the side session discussing the Global Action Plan on Dementia: A Public Health Response. The following is her speech:

Implementing the Global Dementia Action Plan into policy

“Thank you for this invitation to speak today, representing members of Dementia Alliance International, all people formally diagnosed with dementia now representing members from 44 countries. Thank you also to Drs Saxena and Dua and their team at the WHO for their work on the mhGAP App launched earlier today, and for the Global action Plan on A Public Health Response to Dementia, adopted earlier this year at the World Health Assembly.

I’d like to commence by saying the symptoms of dementia must be seen and supported the same way as people with any acquired cognitive disAbilities, and that by doing this, we will all then come to understand “there is a systemic and gross underestimation of the capacity of all people diagnosed with deMEntia, even in the later stages of the disease.”

Late stage management of dementia is still prevalent, and continuing this will have a significant cost, not only to the well being and Quality of Life of people with dementia and our families, but also on our economy.

  • In spite of often receiving earlier diagnoses, we are still being Prescribed Disengagement®, i.e. being told to go home and die via aged care, as if there is ‘nothing that can be done’
  • We are not provided with rehabilitation or other re-abling post diagnostic support
  • We are not being provided with the same disAbility assessment and support as every other person with an acquired disAbility receives
  • These points are all relevant to national dementia plans

By harnessing the UN CRPD and other Conventions in policy and national dementia strategies, we will:

  • Significantly improve the quality of life of persons with dementia and our families and care partners
  • Increase independence
  • Reduce the economic cost of dementia to individuals, families and governments
  • Ensure dementia inclusive and accessible communities

The CRPD is relevant to persons with dementia and there can be little doubt that persons with dementia are addressed by the definition of disAbility in the Convention, and are therefore intended beneficiaries.

The WHO Global Disability Action Plan 2014-2021 is fully based on CRPD Principles and Articles, and it also has good indicators for assessing progress. Hence this also means CRPD must be reflected in regional and national dementia plans and strategies.

The WHO Global Action Plan: A Public Health Response to Dementia set the stage in May 2017. Governments, in partnership with civil society, people with dementia, their families must start now by preparing national dementia plans in their own countries, which incudes a human rights approach to dementia. As I understand it, the only truly accountable parts of the Global Action Plan are the 7 cross cutting principles.

Community Based Rehabilitation (CBR) needs to be considered when implementing this Action Plan into policy. CBR is an important part of human rights, and of dementia friendly communities. The aim of communitybased rehabilitation is to help people with disAbilities, by:

  • Establishing communitybasedprograms for social integration, equalization of opportunities, and physical therapy rehabilitationprograms for people with any type of disAbility
  • This is important in the context of the GDAP and in the development of national policies.

For our communities to be supporting people with dementia, based on human rights, a  new pathway of support is needed. It is also part of being a dementia friendly society, as without adequate health care and disability support, it won’t matter how many dementia friends programmes a country has, there will be very little tangible difference to our lives.

We need a new pathway of psycho social and disAbility support to live with, not only die from dementia, which is not based on deficits, and does more than assess ADL’s and medication.

  • Timely Diagnosis
  • Focus on well being/QoL
  • Acquired Brain Injury rehabilitation post Dx, that includes Speech pathology, Neuroplasticity, Occupational Therapy, Neurophysiotherapist.
  • disAbility assessment and support , immediately post diagnosis
  • Grief and Loss counselling, not just information about BPSD.
  • Peer to peer support groups for oeople with dementia, our care partners and families, and especially our children
  • Support to maintain pre dx lifestyle
  • Support to continue working if YOD (and is a personal choice)
  • Support to continue usual activities, socialising, sport, recreation, community engagement, etc
  • Inclusive and accessible communities (not just dementia friendly)

It is also imperative we focus on risk reduction strategies – e.g. life style changes (as we do for other chronic diseases).

DAI’s Next Steps:

  • Working with countries and civil society to ensure human rights and implementation of CRPD, SGD’s and CBR
  • Supporting Alzheimer’s societies in developing HR policies & plans
  • Continuing to submit parallel reports to the UN and the WHO
  • Promote human rights approach to dementia at all conferences and events
  • Raising our concerns about human rights of persons with dementia in WHO Disability Policy, CBR and regional and national dementia strategies
  • Working with disability organisations, e.g. IDA and IDDC

DAI is open to suggestions, advice, and above all support from all organisations and groupings of or for people with dementia. Some of our recommendations include:

  • Engaging with the United Nations Committee on the Convention on the Rights of Persons with Disabilities (CRPD), including through policy making processes
  • Seeking to develop productive relationships with the global network of National Human Rights and Disability Rights Institutions, e.g. the International Disability Alliance
  • Preparing and disseminating widely information, and developing policy on the UNCRPD and the rights of persons with dementia
  • Encouraging and supporting national and regional groups and organisations to participate in the examinations by the United Nations Committee on the Rights of Persons with Disabilities and other Conventions.

Finally, I have some questions for countries and civil society to consider:

  1. To what extent are your dementia policies based on human rights?
  2. How closely do you work with other disAbility organisations in your country or region?
  3. Do you know how they have used CRPD?
  4. Will you join them to ensure that people with dementia are included?
  5. How are we going to measure 75% of countries have implemented the GDAP by 2025?

Thank you.”

Kate Swaffer
Chair, CEO & Co-founder
Dementia Aliance International

Thank you John Sandblom

Representing DAI in Italy recently, co-founder and Treasurer John Sandblom from the USA gave a brilliant speech on World Alzheimer’s Day in Milan, supported to attend this event with his wife Cindy, by Alzheimer’s Italia. We believe he is the second person diagnosed with dementia to have presented publicly in Italy, and thank one of our pioneer advocates and a DAI Board member, James McKillop for leading the way there, as he presented in Italy in 2004.

DAI Webinar: “Peer support groups and assistive technology: An Italian perspective”

Please register for our next DAI online “A Meeting Of The Minds” Webinar, “Peer support groups and assistive technology: An Italian perspective”.

  • October 25, 2017: 3:30 PM Chicago (CDT) USA
  • October 26, 2017: 7:30 AM Sydney (AEST) Australia

This event is being hosted by Dementia Alliance International (DAI) and is available online as a Webinar. Although it it set in a number of time zones, it is only ONE event.

About the hosts:  Cristian Leorin is Co-Founder and President of Novilunio Onlus; Eloisa Stella is Co-Founder of of Novilunio Onlus. They are both passionate about empoweing and hearing the voices of people with dementia, and Eloisa has been a very active supporter for DAI, including providing many Italian translaions of our materials.

About the Webinar:  In this webinar, Eloisa Stella and Cristian Leorin, co-founders of Novilunio, will provide an overview of how dementia is experienced and perceived in Italy and their efforts to promote a culture of positive change in their country. Founded in 2014, Novilunio is a non-profit organization that offers online and offline resources and activities inspired by a humanistic approach to living with dementia.

The speakers will introduce Novilunio’s new network of online peer support groups for care partners of people with different types of dementia. A network of online groups specifically dedicated to individuals living with dementia – the first of its kind in Italy – is also slated to be launched in 2018 inspired by the good practices of DAI’s peer support groups.

The second part of the webinar will be focused on Novilunio’s approach to assistive technologies, which combines “calm technology” principles with person-centered and human rights-based approaches to supporting people with acquired disabilities within the context of the next generation of connected devices. Such methodology is currently been studied within the EU-funded project REMIND, carried out by a Consortium of 12 European partners, including Novilunio, and 3 universities from Colombia, Argentina, and South Korea.

Following DAI co-founder and Treasurer John Sandbloms’ recent visit to Italy as a keynote speaker to present in Milan, this will be an interesting follow up to DAI’s presence in Italy. We will publish a blog about John’s visit next week, followed by a blog on the great work of our members in Canada th week after.

DAI involved in study to strengthen responses to dementia in developing countries

New £7.7 million study to strengthen responses to dementia in developing countries

Dementia Alliance International is pleased to be involved with this new study, announced yesterday. Read the Press release  below:

The London School of Economics and Political Science (LSE) is to lead a £7.7 million project to build research capacity and provide much-needed evidence on dementia care in seven low- and middle-income countries. This work will support the development of national policies for dementia in the face of rapidly growing global numbers of people with the condition.

Funding has been awarded by the Research Council UK (RCUK) through its Global Research Challenges Fund, which aims to ensure that UK research takes a leading role in addressing challenges faced by developing countries. The research is led by the Personal Social Services Research Unit (PSSRU) at LSE, in partnership with the Universities of Sussex and Cape Town, Alzheimer’s Disease International and Dementia Alliance International. The project – called STRiDE (Strengthening responses to dementia in developing countries) – will help to improve dementia care, treatment and support in seven countries, including India, Indonesia, Kenya, Mexico and South Africa. It will do so by strengthening capacity in those countries to develop and sustain effective care and support for people with dementia and their families.

The project will examine current practice, both at a national level and for individual families, both to help people living with dementia to live well, and to ensure that family and other carers do not face excessive costs that could impoverish them or compromise their own health. A core activity will be to understand the impacts of dementia in various cultural, social and economic contexts in order to support development, financing, planning, implementation and evaluation of National Dementia Plans.

Professor Martin Knapp, Director of PSSRU at LSE, said: “Dementia affects more people in low- and middle-income countries than it does in the UK or other high-income countries, yet few countries are prepared for the challenges of the growing number of people with dementia. Our project is ambitious, but it is urgently needed. We aim to provide research-based support to enable low- and middle-income countries to provide truly effective support for people with dementia as well as the wider community.”

Kate Swaffer, Chair and CEO of Dementia Alliance International, said: “The STRiDE project will build capacity for research for dementia in low- and middle-income countries (LMICs). It will also generate new research evidence on the economic case for investing in better dementia care, and support the development of national dementia plans across a range of countries. Following the recent adoption of the WHO Global Action Plan for Dementia, this is imperative, as national strategies and better investment in research and care is needed in all countries, but this is especially so in the LMICs.”

Paola Barbarino, CEO of Alzheimer’s Disease International, said: “The STRiDE project will give a deeper insight into each nation’s economic challenges related to public health and dementia. This will better prepare us for the negotiating challenges ahead.”

Dame Minouche Shafik, LSE Director, said: ““The number of people living with dementia is growing, creating a challenge with which many countries in the developing world are ill-equipped to cope. This funding will enable researchers and Alzheimer’s organisations to collaborate in order to understand what is working, and what isn’t, in order to improve dementia care where it is most needed”.

STRiDE will run for 51 months from October 2017. Further detail is available on the project website (add link).

For more information contact the project leads, Professor Martin Knapp or Adelina Comas-Herrera, at [email protected]

Jess Winterstein, LSE Media Relations Office, 020 7107 5025, [email protected]

Notes for editors:

For more on the Research Council UK’s Global Challenges Research Fund, see: http://www.rcuk.ac.uk/funding/gcrf/

SUSAN SUCHAN WINS 2017 RICHARD TAYLOR MEMORIAL ADVOCATES AWARD

Today on World Alzheimer’s Day 2017 we announce Susan Suchan as the recipient of the prestigious DAI Richard Taylor Memorial Advocates Award. Congratulations Susan.

From Oklahoma in the U.S.A, Susan Suchan is a loyal, fun loving and tireless DAI member and has been a very active member of many other advocacy and support groups around the world. She has ensured through her own actions and dedication to all people with dementia, which not only speaks to us in the same way Richard’s incredible legacy lives on, but also her own very impressive and gracious personal and advocacy legacy lives on.

Congratulations and thank you Susan, for being the generous, loving and truly inspirational woman that you are, and special thanks to your family for their support of you and your work (and therefore the work of all advocates).

 

Watch Susan finding out she is the recipient of the award for 2017 in an introduction by DAI Chair, and a conversation with DAI board member, Brian Le Blanc:

Susan thoroughly deserves the 2017 Richard Taylor Memorial Award for her service to DAI, and although Richard was one of eight DAI co-founders, she have devoted herself tirelessly to carrying on the work and advocacy for all people with dementia, in spite of her changing health. Susan is a role model to the millions of people already diagnosed with dementia, and one that most of all, we are all honored to call a friend.

DAI is very proud of Susan, and thanks her for her tireless work, patience, humour and support of our members. She are extremely deserving of the 2017 Richard Taylor Memorial Advocates Award. Congratulations from us all.

Here are some quotes from DAI members on why Susan deserves this award, as told to us by either by those who nominated her, or those who know her well and have seen her shining example of advocacy:

“Susan is a beautiful lady with a grateful heart, and represents dementia positively rather than as a “death sentence”. She sees it as a new journey worth every bit of fighting to live and to use her strengths, rather than focus on what she can no longer do. She struggles daily without giving up, or into others claims. Like Richard Taylor, she is not afraid to tell it as it is. Richard always said ‘stand up and speak out’, and Susan continues to do that, with grace and love. She is grateful for anyone’s help, recommendations and actions, and always speaks and acts with love.”

“Susan Suchan is a role model to all people with dementia, she herself living with a form of dementia that includes Primary Progressive Aphasia, which has impacted her ability to communicate easily. In spite of this, she continues to speak out tirelessly, and has worked with a documentary team to tell her story, to ensure her legacy also lives on. Her quest to improve the world for others also diagnosed with dementia is remarkable, and is aligned with the values the late Richard Taylor, and also inspires so many DAI members.”

“In spite of the very real negatives of dementia, Susan has chosen to see the experience as a gift and an opportunity. Susan has chosen to accept it with grace, and through your wisdom and love, has given herself to the world, working for others, and with an acceptance of dementia and all it brings. Because of dementia, we have all had a chance to meet one of the true heroes of dementia.”

Susan Suchan is my vicarious living brilliantly beyond dementia advocate example – A ‘CAN DO’ focus in a failing body but a victorious inclusive spirit, exudes hope, joy and fight for those doing it OK and those for who it is tough – touched by dementia with all its tentacles of influence worldwide. Always looking outward, upward and around to include everyone. A true champion and worthy recipient of the Richard Taylor Memorial Advocates Award.”

Dear Susan, We may not have met in the flesh, but we are kindred spirits. Devoting our lives, to help those who will follow in our footsteps. I have read some of the wonderful things you have done, and I am lost for words in admiration. If ever there was, a worthy recipient of this prestigious award, then it is you. Keep up the good work.” 

“CONGRATULATIONS sweet Susan! You SO deserve this award, we are all SO proud of you . You were one of the first people I met in person 6weeks after my diagnosis of FTD. I will never ever forget your kindness, friendship, laughter & support . You were & still are like a beacon of hope to all of us living with dementia . YOU are truly an inspiration to many & loved by so many . Thank you also to your precious family who have supported & allowed us to ” share ” you! You Rock xxxxx” 

You can tune into her documentary updates here… 

“Can You Hear Me Now?” by Carole Mullikan

We are honoured to have an article written by dementia advocate and pioneer, Carole Mullikan. Thank you Carole, for sharing your story, and for living so well since her diagnosis in 1995, by role modelling to us all by focusing on what she can still do, and that for many of us, it is possible.

Can You Hear Me Now?

“Not so long ago a man in spectacles paced everywhere testing his phone in a Verizon commercial.

“Can you hear me now? Can you hear me now? Can you hear me now?”

As a first-year teacher, that was a question I often asked myself when in front of a noisy bunch of teenagers. Over time, I learned how to quiet and focus teenagers in a classroom. Yet sometimes I still needed to ask the very back row,

“Can you hear me now?”

When I began making luncheon presentations in ballrooms at state teachers’ conferences, the question arose again. Sometimes microphones are forgotten. Sometimes they malfunction, necessitating greater lung power. Other times they must be tested and adjusted.

“Can you hear me now?”

At one national conference, the microphone was working just fine, but as I took the podium, I glanced up, seeing the massive, multi-layered crystal chandelier above. Good grief! I thought to myself, what could I possibly have to say that was worthy of such splendor? But being a seasoned speaker, I persisted.

These days, I no longer speak in classrooms or at conferences. Most often I speak to just one or a few individuals. That should seem easy, but having been diagnosed with dementia, “Can you hear me now?” is still an issue. The stigma attached to dementia causes others to listen through a perceptual filter telling them the person with dementia is often confused. What he says may be wrong. She may not have her facts straight. He might be dwelling in the past or experiencing delusions. What a person with dementia says cannot be trusted. Even when I am certain of my facts and speak with authority, I question that they can hear me through the diagnosis of dementia. Too often I fall silent.

Hear me now, please!

Being automatically deprived of my credibility hurts!

Copyright: Carole Mullikan 2017

More about Carole Mulliken: Carole is a DAI member and a member on our recently reinstated DAI Action Group, about to commence moderating a Discussion forum currenty being set up for members. She is also a founding board member of the Dementia Advocacy and Support Network International (DASNI), which was the first international online support group for people of dementia. Unlike DAI, membership was not exclusive to people with dementia.

With a diagnosis of multi infarct dementia, obviously now well over twenty years ago, Carole regards dementia advocacy as a second, unpaid career and herself a veteran of the dementia wars. She lives near Saint Louis, MO, and those of us at DAI salute her for being one of the shining lights who led the way for the rest of us.

Carole worked as an educator, a school counselor, a suicide crisis interventionist, an adjunct professor of composition, an educational consultant for a division of the U.S. Department of Education, and a freelance writer. She wrote and published a monthly online newsletter for an animal shelter and maintained its website. She has published freelance feature articles for print publications and for several websites.  Lisa Genova, Ph.D., author of Still Alice, recognizes DASNI and Carole Mulliken by name as contributing to her own understanding of the lived experience of dementia.

And Then I Looked Up Dementia – Women Speak Out

We are pleased to be part of the launch of this video, highlighting the impact of dementia on women, discussing the higher incidence of women people diagnosed with it, and the higher numbers of woman who become care partners to someone livign with it. Thanks to Amy Little and GAADA for pulling this project together in time for World Alzheimer’s Month 2017.

“Dementia is a global women’s health, social care and rights issue that can no longer be ignored.

And Then I Looked Up Dementia brings together women living with dementia, the actress Carey Mulligan, iNGO women’s specialists, dementia experts, government representatives and others to speak out for women affected by dementia everywhere.

Dementia is listed by the World Health Organisation in the top ten causes of death for women worldwide and is recognised as a global health priority. Around the world, more women than men live with dementia and face gender-specific barriers to living well with the disease.

Globally, women provide the majority of both unpaid and formal care to people living with dementia. People living with dementia can face stigma and even abuse due to their condition, for older women, age and gender-discrimination can compound this treatment. Take action to get it right for every woman living with or affected by dementia around the world.” GADAA, 2017

To find out more visit https://www.gadaalliance.org/women

World Alzheimer’s Month 2017

As most people who follow this blog will know it is now World Alzheimer’s Month 2017 #WAM2017. Each September we make our efforts more focused than usual on raising awareness and supporting people with dementia and their families, and many organisations are hosting activities that you can get involved with.

Many of DAI’s members would prefer it was called World Dementia Month, as for those who do not have Alzheimer’s Disease, it can feel exclusive rather than inclusive of everyone with a diagnosis of dementia.

World Alzheimer’s Month was launched by ADI in September 2012. The decision to introduce the full month, to contain the existing World Alzheimer’s Day which is September 21, was made to enable national and local Alzheimer associations worldwide to extend the reach of their awareness programmes over a longer period of time.

For the last three years, DAI published a blog for every day of the month, but decided not to this year, as some people felt overwhelmd from receiving too many emails. Instead we are more focused behind the scenes on working towards intiatives that will last longer than a month, including human rights activities and fundraising so that we can continue to do our work.

Currently, our work is at the global, national and grass roots level, and where possible, and we aim to support local groups of people with dementia and their families who are workign in their local communities. At the grass roots level, our online peer-to-oeer support groups, cafes and “A Meeting Of The Minds” Webinars continue to be well attended.

As mentioned in last weeks blog, we are co-hosting our first live event which is also being run as an online Webinar.  Register here for “Voices of Dementia”. We only have a few spaces left if you wish to attend in person.

UN Special Rapporteur: The Right to Health


Earlier this year the UN Special Rapporteur on the Right to Health, Mr. Dainius Pūras, from Lithuania presented his visionary report on mental health to countries at the Human Rights Council (report available in several languages here). We congratulate them on this very important work.

The report provides an important framework and road map for mental health that responds to people’s needs, respects their rights and ensures that the dignity of every person is respected.

Dementia is listed under mental health at the WHO, but it is pleasing to note that due to the advocacy of DAI and Autism International at the Mental Health GAP forum last year, dementia is now formally recognised there as a condition causing those of us digosed with it as having cognitive disabilities, rather than it being a mental illness, intellectual disability or psychosocial disability.

In the Introduction of this report, it states:

1. Mental health and emotional well-being are priority areas of focus for the Special Rapporteur (see A/HRC/29/33). In each thematic report, he has attempted to bring mental health into focus as a human rights and development priority in the context of early childhood development (see A/70/213), adolescence (see A/HRC/32/32) and the Sustainable Development Goals (see A/71/304).

2. In the present report, the Special Rapporteur expands on this issue and provides a basic introduction to some of the core challenges and opportunities for advancing the realization of the right to mental health of everyone. In the light of the scope and complexity of the issue and of the evolving human rights framework and evidence base, in his report the Special Rapporteur seeks to make a contribution to the important discussions under way as mental health emerges from the shadows as a global health priority.

3. The present report is the result of extensive consultations among a wide range of stakeholders, including representatives of the disability community, users and former users of mental health services, civil society representatives, mental health practitioners, including representatives of the psychiatric community and the World Health Organization (WHO), academic experts, members of United Nations human rights mechanisms and representatives of Member States

The World Health Organization is committed to responding to the report’s call for Member States to seek technical assistance from the WHO QualityRights initiative in order to promote access to good quality mental health and related services and respect for the rights of persons with psychosocial, intellectual and cognitive disabilities.

Human Rights Consultant for DAI and ADI, Professor Peter Mittler and DAI Chair and CEO Kate Swaffer have been actively involved in the WHO QualityRights work, and DAI continues to seek your feedback.

If any DAI members wish to become part of a small working group to provide feedback on this project, or need more information, please email us as soon as possible please.

Register for the DAI #WAM2017 event: “Voices of dementia”

Whilst DAI has held a number of workshops as part of the Alzheimer’s Disease International or Regional conferences, including in Melbourne, Budapest, New Zealand and Japan, we have not yet held our own DAI conference, seminar or event where people can attend in person.

This year, we’ve worked hard to achieve hosting a DAI event, but also have been lucky to be supported by BlueCare: Live life your way to enable us to co-host our first event during World Alzheimer’s Month with the Dementia Awareness Advocacy Team in Brisbane, to be held on September 20, 2017.

We will also hold this as an online webinar at the same time, so that others can join us, and this event will replace our usual “A Meeting Of The Minds” Webinar in September. It will therefore be in two times zones, on September 19 & 20, 2017, but is still only one event.

Let’s hope this becomes and annual event, working together with local or national Dementia Advisory or Working Groups or Teams of people with  dementia and their families, towards ensuring a better world and a stronger voice for all people impacted by dementia.

You can register here…

 

We apologise to those who live in a time zone where for you to attend it will be extremely inconvenient, but we do hope to record the sessions so they will be avialable to watch afterwards on our YouTube channel.

 

 

 

Of, By, and For People with Dementia

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