Category Archives: P2P Support Groups

Media Release: DAI to suspend some free services

Dear friends and colleagues,

The DAI Board met at a special board meeting on March 25/26, 2022 as we saw the need for a thorough internal review of our services.  This was brought about by the identified strained resources we have, to support the current operations.

We certainly appreciate the unusual world we are living in at the moment and DAI, like many other Not For Profit and Charitable organisations are competing for volunteers and funding to remain viable and sustainable.

We assure you that the DAI Mission and Values were at the forefront of our thinking; and we value the volunteers and supporters around the world who continue to support us; thank you.

This media release is to advise you that following the review, the Board has made the very difficult, but necessary decision to reduce the current services provided by DAI until further review. Our hope, is that we can build up our volunteer base once again and continue to provide amazing resources to ensure “Nothing about us, without us.”

The priority of the special board meeting was to discuss the following two options about the services, sustainability, and future of DAI.

OPTION 1:

  • Wind up the affairs of DAI, and
  • Cancel charity status and disperse funds.

OPTION 2:

  • Revert to peer-to-peer support groups only,
  • Drop all other work, including e-newsletters, webinars, cafe le brain, and brain health hub meetings,
  • Replace newsletters with more activity on social media, and
  • Stop or scale back blog posts.

Following this meeting, the board has unanimously made the following decisions.

Effective immediately, DAI will continue to provide the following services:

  1. Free membership for people living with any type of dementia.
  2. Weekly Peer-to-peer support groups for DAI members (no cost to members).
  3. Provide member and data base communications via regular blogs on the website, rather than through e-news using MailChimp.
  4. Retain its charitable 501c3 status in the USA to allow for donations to continue.
  5. Retain its registered accountant to perform the annual financial reporting and required IRS related paperwork.
  6. Retain the award-winning DAI YouTube channel.
  7. Retain the DAI website, which is currently being updated.
  8. Retain the DAI branded Facebook, LinkedIn, and Twitter social media pages.
  9. Finally, the Environmental Design Special Interest Group (ED-SiG) will continue to be led by Emily Ong, from Singapore

Effective immediately, DAI is suspending the following services until further notice:

  1. Monthly “Meeting Of the Minds” Webinars.
  2. Monthly Cafe Le Brain.
  3. Twice monthly Brain Health Hub Zoom Meetings.
  4. Annual World Rocks Against Dementia (WRAD) event.

We looked at a number of ways to work ‘smarter’ so we can continue to provide the same level of communications, but in a different way and came up with these options.

To reduce costs, DAI will cease the monthly newsletter and other mailings, which will be replaced entirely by blogs on the DAI website to communicate to everyone, including members. We hope increased activity on DAI social media will help fill any potential communication gaps.

Please note therefore, that all future official e-news and other communications will be through the website as a blog, which will mean you need to subscribe to them to receive our news and other communications.

The global human rights work we currently do will continue, although DAI will need to fund an external partner or expert for this work to continue. Kate Swaffer will continue in her role as interim human rights advisor until the AGM in June 2022, while the board decides on its long-term future direction. DAI will also retain its ECOSOC status at the United Nations, and Observer status with the International Disability Alliance.

Detailed below is a brief explanation of why DAI has been forced to face these changes, due primarily to the following set of unique and difficult challenges.

  1. DAI members who all live with dementia are often willing to volunteer, but also have significant time constraints as they are also tackle tackling the daily challenges of living with dementia.
  2. Significant demand on volunteers around the world.
  3. DAI has been asked and had the opportunity many times over the last 8 years to support researchers, individuals, and organisations with their grant applications; we are working on being appropriately included in the work and funded in the projects.

Since mid 2015, DAI has depended on strategic partners and donations to fund its operations; before that, board members self funded it.

We are very grateful that in mid 2015, ADI became DAI’s first strategic partner. In November 2018, Dementia Australia became a major donor; the following year, DA became our second strategic partner.

It takes time to build up strategic partners and donors to remain sustainable in our current format, and to have paid staff and financial resources that can be used to hire additional staff to support our organisation.

Unfortunately, the lack of adequate funding has always been a major issue limiting available technologies, marketing materials and staffing.

The board sincerely hopes that these changes are temporary, and that some of our services will be reactivated in the future.

DAI continues to be an amazing, life-giving organisation that provides a steppingstone for people more newly diagnosed with dementia to ‘get back to living’, which is truly powerful work, and we will continue to do this.

We thank you in anticipation of your support us as we streamline our operations to ensure our core activity continues, which is to ensure peer to peer member support is always sustainable.

Finally, we will send another email later this week, with a more detailed explanation of why these changes have had to be made at this time.

“Nothing about us, without us.”

Yours sincerely,

Cheryl and Alister

Cheryl Day/Alister Robertson
Acting Chair/Chair (on leave)
On behalf of the Board of Directors
Dementia Alliance International

International Mentoring Day

Today is International Mentoring Day 2022, a day amongst many other Observance days in January, the first month of the Gregorian calendar, New Year Day, Global Family Day, World Braille Day, World Day of War Orphans.

It is also a time to #ThankYourMentor.

The purpose of International Mentoring Day is to foster global understanding and to support the mentoring movement worldwide.

DAI celebrates and thanks all mentors today, whilst also honoring the legacy of Muhammad Ali. Since 2017, this day has been observed during National Mentoring Month. It takes place on the birthday of boxing legend and global humanitarian Muhammad Ali, which would have been his would have been his 75th birthday.

It is a day of international conversations globally, on social media where photos, videos and messages of powerful mentoring stories are shared. Muhammad Ali’s legacy is the inspiration for the day, specifically his six core principles of:

  1. Confidence,
  2. Conviction,
  3. Dedication,
  4. Respect,
  5. Giving, and
  6. Spirituality.

Many people might not be aware that mentoring is a crucial part of advocacy development for both the senior advocate (mentor) and novice advocate (mentee).

The mentoring relationships help to guide and shape novice advocates, and help to strengthen the mentor’s confidence and become more reflective of their journey.

Confidence is one key aspect that many people with dementia need to regain after the diagnosis, when most people diagnosed are only advised to get their end of life affairs in order.

The stigma and the assumption of incapacity causes people with dementia to self-doubt about themselves because they have been repeatedly told, “You cannot do this” and is also partly responsible for self-stigma.

It is, therefore, not surprising to find novice advocates feeling positive when they first step up to speak for themselves as advocates; the joy of once again being listened to. To have the opportunity to say something and have your voice heard, to be seen, and acknowledged for their existence again.

However, to come to this stage, people with dementia need to see and meet with others with dementia who have stepped up as advocates. To hear from senior (not necessarily older in age) or pioneer advocates about what motivated them to become advocates, as well as their advocacy experiences, including what has been successful, and what has failed.

To stand in front of a group and advocate for what you believe in demands conviction. And for a highly stigmatized and heavily discriminated condition like dementia, it helps to have like-minded people who can be there to support and encourage each other. The unshaken belief that it is the right thing to do toughens the spirit of an advocate.

In DAI, we are very proud of our pioneers and senior mentors like James McKillop, Christine Bryden, Kate Swaffer, Agnes Houston, Amy Shives, Helga Rohra, Dr Jennifer Bute, Howard Gordon, Christine Thelker, and others such as the late Dr Richard Taylor, Dena Dotson and Peter Ashleigh. There are so many others who continue to stay strong despite barriers encountered in their journey as advocates, and it is simply not possible to name them all.

Last but not least is the mentoring relationship taught to ‘new’ advocates that is critical, the need to pass the baton from experienced advocates who become mentors to those who are new to advocacy, and to stand by and guide them.

Every advocate needs a mentor to guide and keep them on track, and to advise them of the history of advocacy, especially so that they don’t repeat past mistakes, or attempts in advocacy that were  ineffective.

Likewise, every mentor needs to pass down the values and keep the spirit of conviction burning bright in their mentees.

The DAI peer to peer support groups have provided these opportunities for people living with dementia for over eight years, and whilst they provide support and friendship, they also support mentors and mentees to start, and to continue to advocate locally, nationally or globally.

Thanks to the ongoing mentoring from the Alumni board members, two of our board members can step up to take on the leadership role from Alister Robertson, who is on a two month Leave of Absence from the Board and Chair role due to personal family health issue.

The board and members of DAI thank Emily Ong and Cheryl Day for stepping up to take on the role of acting co-chairs for two months.

We send a big Thank You to all of our Mentors, past and current.

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Celebrating talent courage and strength

Members of the DAI Peer to Peer Support group in Singapore meeting on World Alzheimer’s Day 2021

This video is part of a poetry project by members of the DAI Peer to Peer Support group in Singapore. They meet weekly, to share ideas and strategies to live more positilvely with dementia, and to work together on projects like this, to celebrate their talents, courage and strength. This project stemmed from a discussion th members had on their experiences of stigma and how much they want to be treated as normal people and they can still do many things.

The Hai Ou Project by the DAI P2P Support group in Singapore

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With more than 55 million people living with dementia, and the Coronavirus pandemic causing everyone to operate in a virtual world, our work has never been more important.

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Membership of, and services provided by Dementia Alliance International is FREE, and open to anyone with a diagnosis of any type of dementia.

Join DAI here: www.joindai.org

Read our newsletters or regular blogs, by subscribing here: www.dementiaallianceinternational.org

About DAI: Dementia Alliance International (DAI is a non-profit group of people with dementia from around the world seeking to represent, support, and educate others living with the disease that it is possible to live more positively than advised with dementia. It is an organization that promotes a unified voice of strength, advocacy and support in the fight for individual autonomy, improved quality of life, and for the human and legal rights of all with dementia and their families.

Seven years of DAI advocacy by Amy Shives

On January 1, 2021, DAI turned 7! We were delighted to host a virtual cafe to celebrate our 7th birthday, and had a number of planned and impromptu speakers. Amy Shives, one of our co-founding members, spoke about our seven years, from her perspective as a co founder and long time dementia-advocate.

We are thrilled to share it today, as part of our Dementia Awareness Month series of (almost daily) blogs, to continue to highlight the voices of poeople with dementia, as well as DAI’s critical role in local, national and global advocacy.

In this video, she talks about the value of the DAI Peer to Peer suport groups, and how important these groups have been in normalising the experience of dementia. Any also says, that she believes being with others living with dementia has  saved her life.

Thank you Amy!

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