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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- Inclusion of DAI members by individuals and other organisations continues to be tokenistic at best.
- 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.
- 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.
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.”