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Media release 2: DAI rationale for service changes

DAI e-News April 2022
Detailed explanation of service changes

Dear colleagues and friends,

Further to our recent announcement of the changes in DAI, we wish to share the following more detailed explanation of why it became necessary to suspend so many of the DAI member services as well provide some history for context. Looking back has been essential to moving forward.

Most reading this will know that Dementia Alliance International (DAI) was founded on 1 January 2014 by eight people diagnosed with dementia, all with a dream to provide support for other people living with dementia, and to advocate for others with dementia to live more positively, for better services and support, and for our rights.

The eight founding members hailed from three countries with a collective dream for an international organization being a group ‘of, by and for’ people with dementia.

Exemplifying the nothing about us without us philosophy as the founders had all recognized that people with dementia did not truly have a voice having had it taken away by the stigma and discrimination of dementia. Their dream was to advocate for the autonomy and rights of all people living with dementia.

People with dementia have a human right to self-determination and full inclusion in society (not to be isolated, discriminated against, or segregated from society).

Peer to peer support for people with dementia

The founders learned there was no organization with this shared belief among thousands of organizations whose leadership and missions were all about research for a cure or supporting the carer and that those organizations rarely included persons living with dementia in their governing ranks or in their mission statements. It’s as if people with dementia didn’t exist, except when used as fund raising tools.

Even support groups for persons living with dementia required the participation of a family member or care partner and the conversation was dominated by the one without dementia. We knew persons living with dementia needed and deserved a safe and private place to participate in peer-to-peer support.

We knew this methodology was valid as Alcoholics Anonymous had already proven it works. Many had already been meeting online to support each other and it is that camaraderie and self-determination and the growth of a collective global advocacy that gave birth to Dementia Alliance International, an organization founded and led only by and for persons living with dementia across the globe.

For many years, people with dementia had been promised funding for a global group, as far back as the late 1990’s, when Christine Bryden and others founded the Dementia Advocacy Support Network International (DASNI). The late Dr. Richard Taylor had also been promised the same thing many times but as it was never forthcoming, hence the founders of DAI decided to set it up, as well as fund it and run it themselves.

DAI has always had to fight hard for anyone to support us, and then, it has never been more than piece-meal funding. Typically, just enough to set boundaries on our advocacy.

The Board and many of our members believe the best work that DAI has done is to provide peer to peer support, which in turn has empowered more newly diagnosed people to get back to living.

DAI was using Zoom long before the COVID pandemic; it started the first online peer to peer support group for people with dementia in the world, which continues today, and DAI still hosts the only living alone peer to peer support groups that we know of, in the world.

DAI’s global support for, and advocacy and representation of people living with dementia has been significant and ground-breaking, and we know we have much to be proud of.

Our members continue to report that our peer-to-peer support groups are an amazing, life-giving steppingstone for people more newly diagnosed with dementia to ‘get back to living’. This is truly powerful work, that even in times of covid, no other organisations yet do.

However, it appears to DAI that many people without dementia do not fully support our organisation. We base these assumptions on the actions and attitudes of others, and because so few people or organisations support DAI, promote DAI, partner with DAI, or donate to DAI.

In fact, pre covid, when zoom webinars being hosted by other organisations were rare, DAI tried a few times to add a small registration fee to their monthly webinars to help with financial sustainability.

Shockingly, a great many people in paid employment, including staff members of dementia charities, falsely registered as DAI members, to avoid the fee.

The other truth that DAI has had to face, especially members of DAI who are not active advocates with their national charities, is they are still fighting for Article 19 of the CRPD.

Inclusion is too often still missing, and it continues to be ‘about us, without us’.

For these and a numer of other reasons as outlined below, DAI had no choice but to reassess its future direction and services.

International dementia advocacy requires significant leadership, statesmanship and organizational skills as well as public speaking skills and knowledge of not only of the lived experience of dementia, but of policy, human rights and so on. Just being diagnosed with dementia, doesn’t provide these skills and thus there is a limited pool of talent to draw on. DAI has found it difficult to retain people in our membership with a passion for advocacy, who have the required skills and are willing to serve DAI, as they are often approached by the charities, researchers, and other organisations to get involved with their work.

This leaves DAI ‘dry’ and returning to square one repeatedly having to find and train new members to do the work. Even when DAI is actively working with others, it is mostly without renumeration to, or recognition of DAI or its membership.

DAI has faced some unique and difficult challenges 

Firstly, all DAI members live with dementia, and whilst they are often willing to volunteer, they also have significant time and financial constraints as they tackle the daily challenges of living with dementia, and the lack of post diagnostic support. Beyond that, DAI has faced many other significant difficulties.

  1. Other charities, organisations, researchers, start-ups, and individuals are constantly inviting DAI members to work with their organisations, which then means DAI has had difficulty retaining members to support their own organisation.
  2. Furthermore, other organisations usually have significantly more funding than DAI, and are therefore able to provide paid staff to support their volunteer self-advocates, making it even more difficult for DAI to retain active members.
  3. DAI has increasingly been asked over the last 8+ years to support researchers, individuals, and organisations with their grant applications, to promote their projects and surveys, but then not appropriately included in the work.
    • DAI is very rarely funded in the projects,
    • DAI is rarely included in the activities or focus groups projects, and instead of working with DAI, researchers go to the national dementia charities and their dementia working or advisory groups.
    • DAI is rarely referred to as an organisation for people with dementia, in the research outcomes, yet
    • DAI is expected to promote the surveys and other project activities.
  4. Since mid 2015, DAI has been thrilled to have the support and funding of strategic partners and other donations to fund its operations.
    • 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
    • Both partners currently provide $20,000 USD per year
    • DAI receives very few other donations.
  5. Clearly however, this means we have insufficient strategic partners and donors to remain sustainable in our current format, let alone have access to financial resources that can be used to hire paid staff to support our organisation.
  6. The lack of adequate funding has always been a major issue limiting available technologies, marketing materials and staffing.
    • Therefore DAI has had no choice but to modify its structure and services.
  7. We have been well supported by our non-member volunteers, but it is becoming increasingly difficult to find volunteer staff who have the time, or that don’t have an unconscious biases impacting their ability to work within the ‘nothing about us, without us’ philosophy, or hidden personal agendas which we do not fit with DAI’s vision or mission.
  8. Inclusion of DAI members by individuals and other organisations continues to be tokenistic at best.
  9. Recognition of the disabilities caused by dementia and adequate reasonable adjustments and disability support are not provided making it difficult or impossible for persons living with dementia to participate fully or equally.
  10. Finally, whilst others appear publicly to support DAI, most do not want a truly autonomous voice in this very crowded space, notably, when we differ to the goals of other organisations.

Working with DAI in the future

Moving forward, DAI will fulfil any current commitments made to research projects or other projects and organisations. It will also continue to work with the WHO and UN, as it has over the last many years.

However, it will need to limit its involvement with individuals and other organisations in the future.

It is obvious that people with dementia continue to be the only people in the dementia sector who are not paid for their labour and expertise, and where others who get to meet our members, then want them to work with and promote their organisations, but with little or no reciprocity to DAI.

Therefore, DAI will soon release a policy for how individuals, start-ups, researchers, and all others will be able work with our organisation and our members, so that it is fair and equitable for everyone.

Although this has partially been outlined in the documents, Value to a sponsor partner or donor and Opportunities for researchers, partners sponsors and associates, both updated in 2018, it is apparent they are unclear.

Thank you

The board sincerely hopes this rationalization and suspension of four services is temporary, and that some will be reactivated in the future, and we thank you for supporting us as we streamline our operations to ensure our core activity, which is peer to peer member support is sustainable.

DAI’s incredible work and willingness to support and work with others, without reciprocity has been a major contributor to the need to make these very difficult decisions. Hence, we really hope that moving forward, the many organisations and individuals DAI has so actively promoted and supported for the last eight+ years, will consider reciprocating and partnering with us in the future.

“Nothing about us, without us.”

Cheryl Day
Acting Chair
On behalf of the Board of Directors
Dementia Alliance International (DAI)

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Reminder: 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, not through e-news using MailChimp.
  4. Retain its charitable 501c3 status in the USA to allow for donations to continue.
  5. Retain its CPA 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

DAI Human Rights Advocacy

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, while the board decides on its long-term future direction. DAI will continue to work with the WHO and UN, will retain its ECOSOC status at the United Nations, and its Observer status with the International Disability Alliance.

DAI is suspending the following services until further notice:

  1. Monthly “Meeting Of the Minds” Webinars
  2. Monthly virtual Cafe Le Brain
  3. Twice monthly Brain Health Hub Zoom Meetings
  4. The annual WRAD event

Furthermore, to reduce costs, DAI will cease the monthly newsletter and other mailings, and blogs on the DAI website will be used to communicate to members instead. We hope the increased activity on our social media pages will fill any potential communication gaps.

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

Note: we sometimes use voice recognition software for correspondence​ and newsletters; ​​hence there may be some grammatical errors or spelling mistakes, for which we thank you for your understanding.

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

The importance of Rehabilitation for all people with dementia

Watch our  webinar, The importance of Rehabilitation for all people with dementia,  now!

In September 2021, DAI hosted a series of four “Meeting Of The Minds” Webinars, specifically focused on rehabilitation for dementia. This was done as people with dementia have been campaigning for the full suite of rehabilitative interventions after diangosis for decades. At last, we appear to be seeing small actions towards actually achieving this basic human right, and what is deemed equal access to Universal Health Coverage.

The webinar was the final panel session of that series, with panellists Professor Lee-Fay Low, PhD, Sydney University, Dr Alexandra Rauche, from the World Health Organisation, Ms Emily Ong DAI member from Singapore, Ms Lynette Rogers, DAI member from Victoria, who lives in residential aged care, and DAI co founder Kate Swaffer who has been campagining for rehabilitation for dementia, and also for dementia to be managed as a condition causing disabilities for over a decade.

Rehabilitation helps individuals maintain and optimize independence. Historically, people with dementia have received little or no rehabilitation and the focus has been on care to replace lost function. It is now critical that health and social care professionals, service planners, policy makers, and academics embrace dementia rehabilitation.

There is a compelling case for rehabilitation for people with dementia, including the views of people with dementia and the research evidence. For each area of function, the research evidence and relevant theory is clear, and needs to be followed by practical information on clinical assessment, and delivery of therapies.

You can view the other Rehabilitation and Dementia webinars on our award winning YouTube channel here.

Since you’re here… … we’re asking viewers like you to support our members, by donating to our organization.

There are now more than 55 million people living with dementia, AND DAI is the global voice of people with dementia.

As the Coronavirus pandemic has caused everyone to operate in a virtual world, our work has never been more important.

Donate to or Partner with DAI today

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

If you are diagnosed with dementia you can join DAI here. 
Read our newsletters or regular blogs, by subscribing here

About DAI: Dementia Alliance International (DAI is a non-profit 501c3 charity of, by and for people with any type of medically confirmed dementia from around the world. We seek to represent, support, and educate others that living more positively with the condition is possible.

Stigma, by Rose Ong

Stigma, a poem by Rose Ong, an advocate living with Vascular Dementia in Canada, and founder of the weekly DAI Canadian P2P Social Support Group. Thank you Rose, for keeping this topic on the agenda.

Stigma

We had carried on a bright and cordial conversation
The kind of informal banter between new friends
Just learning about those little details of our lives that
Make us each quirky and interesting at the same time.

As we rose to return to our own sanctuary of solitude
I happen to mention that I had ‘dementia’ in order to explain
Why I no longer could drive and why I had used a walker
To get to her house, just two blocks from mine, here in Newmarket.

The shock that registered on her face was remarkably as if
I had slapped her; her jaw dropped, her eyes filled with extreme pity,
As she stammered, “…but you can talk so well,
I never would have known… I always thought that dementia…”

I stood there and smiled as she stumbled over words of caution
And surprize, mixed together in the dreaded cocktail I call STIGMA.
Having learned to accept graciously, with patience and humility
I prepared what I would say in response to HER ‘overwhelming’ confusion.

STIGMA – I faced it often when I first became unconcerned about
The world’s perception of my condition – and began to speak openly
And honestly about how it affected my memory and anxiety levels;
The simplest tasks; counting money; following a recipe; meeting new people.

Why did I bring it up? Wouldn’t it be easier to not say anything at all?
Yes, but imagine, for a moment, having a dog who DAILY bit you in the leg and
Deeply wounded you physically and emotionally, but you merely covered
It up, never spoke of it, and denied its existence to anyone noticing your limp.

Why would a sane person do that day after day?  

Instead, I chose to uncover the depths of this crippling disease and all its
Emotional handicaps and physical disruptions and discuss it openly
With anyone who would listen. Surprized? You shouldn’t be, you should
Listen, really listen, from your heart because I’m going to change the world.

Just imagine, if every person with any type of dementia began speaking up
About their limitations without fear, from the earliest onset of the disease, Doctors would have to take notice; governments would have to find solutions
And we could eradicate STIGMA in one generation.

Are YOU ready to change the world?

Written by Rose Ong, November 11, 2021

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Research article on Lifespace by Dr Jacki Liddle

How big is your lifespace? How might it reflect and affect health, wellbeing and participation.

By Dr Jacki Liddle, University of Queensland

Many things may affect your ability to move from place to place – and be actively involved in your community, nation and the world! We have certainly seen this over the last 2 years. There is a body of research that focuses on monitoring people’s mobility in their community, the reasons for constrictions and the outcomes related to this.

What is lifespace?

Coming out of 1970s gerontology (the study of ageing), lifespace is a concept that describes the geographic area in which we live and conduct our activities. Originally this was conceptualised as circles, surrounding a person, extending from their bedroom, into other rooms, then outside, into the community and further afield. Since then it has been converted to scores, questionnaires and maps. Basically, it measures how often you leave home (or a room), how far you go, and your patterns of travel. People might be asked to recall, keep diaries, or more recently, carry a phone or GPS device.

(From Liddle et al 2016, showing a participant’s lifespace as a heatmap from GPS information. Please note the location has been changed)

What does lifespace reflect?

Being able to be mobile in your community relies on a number of things working well.

At the person level, your body functioning affects mobility –

  • being able to perceive and interact with your environment,
  • being able to mobilise and coordinate your body parts (without too much pain),
  • and being able to plan, and organise travel,
  • feel motivated and have energy
  • and respond to things as you move

– all affect mobility (along with many more things). But there is more to it than that.

Your community mobility is strongly affected by your environment – this includes things like a home where you can access outside, suitable walking paths (terrain, surfaces, handrails), accessible transportation, weather and conditions (temperature, storms, pollution levels). Environments also can support mobility through signage, appropriate lighting levels and supports for finding your way, places for resting out of the weather, and an overall feeling of being safe. Beyond the physical environment – mobility is shaped by the social environment and infrastructure – social supports, funding for services and transport, and suitable meaningful destinations. People also often need a reason to be mobile – why you are going, what you are doing, who you are with.

So a restriction in lifespace may reflect a change or mismatch between the person and their environment. It may be temporary (like having a broken leg, having a lockdown, or experiencing extreme weather), or it may be more permanent. Changes to body functioning, may require rehabilitation, changes to the environment and supports or both. Changes to usual patterns of community mobility (e.g. retiring from driving) may need specific supports and adjustment to protect lifespace.

What is the impact of restricted lifespace?

Everyone has their own preferred patterns of lifespace – so there is not one optimal amount. However, large population-based studies have indicated that maintaining lifespace (or recovering it after a constriction) may have an impact on future health, cognition, wellbeing and participation, as well as access to essential services, like healthcare. We do need to understand a lot more things about lifespace – but it does seem to both both reflect and affect health and wellbeing. For this reason, it might be helpful to keep track of your lifespace, and anything that might be a barrier to you maintaining it.

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References*

Baker, P. S., Bodner, E. V., & Allman, R. M. (2003). Measuring life‐space mobility in community‐dwelling older adults. Journal of the American Geriatrics Society51(11), 1610-1614.

De Silva, N. A., Gregory, M. A., Venkateshan, S. S., Verschoor, C. P., & Kuspinar, A. (2019). Examining the association between life-space mobility and cognitive function in older adults: a systematic review. Journal of aging research2019.

James, B. D., Boyle, P. A., Buchman, A. S., Barnes, L. L., & Bennett, D. A. (2011). Life space and risk of Alzheimer disease, mild cognitive impairment, and cognitive decline in old age. The American Journal of Geriatric Psychiatry, 19(11), 961–969.  https://doi.org/10.1097/JGP.0b013e318211c219.

Liddle, J., Ireland, D., McBride, S. J., Brauer, S. G., Hall, L. M., Ding, H., … & Chenery, H. J. (2014). Measuring the lifespace of people with Parkinson’s disease using smartphones: proof of principle. JMIR mHealth and uHealth2(1), e2799. https://mhealth.jmir.org/2014/1/e13

Liddle, Jacki; Ireland, David; Harrison, Fleur; Gustafsson, Louise; Brauer, Sandy; Lamont, Robyn; Scott, Theresa; Pachana, Nancy; Sachdev, Perminder; Brodaty, Henry. Measuring the importance of getting out and about. Australian Journal of Dementia Care. 2016; 5(5):54-56.

Liddle, J., Ireland, D., Krysinska, K., Harrison, F., Lamont, R., Karunanithi, M., … & Brodaty, H. (2021). Lifespace metrics of older adults with mild cognitive impairment and dementia recorded via geolocation data. Australasian Journal on Ageing.

* if you would like to access the references, please contact the author here.