The term “dementia-friendly” is widely used in aged care and community programs, suggesting a commitment to supporting people with dementia. Yet, these initiatives often fail to deliver meaningful inclusion, serving more as fundraising tools than empowering platforms.
Kate Swaffer, a PhD candidate, author, and global dementia advocate who shared her insights on Episodes 29 and 30 of the With All Due Respect podcast, argues that “dementia-friendly” programs exclude people with dementia from paid roles and perpetuate stigma.
Speaking to podcast hosts Maurie Voisey-Barlin and Michael Page, Swaffer’s critique of this dynamic, highlights the need for those working in the realms of aged care and dementia advocacy to rethink these initiatives, drawing contrasts with the inclusive employment practices of LGBTIQA+ organisations.
Beneath the “dementia-friendly” veneer
Swaffer’s critique of “dementia-friendly” initiatives cuts to the core: they were “developed by charities, dementia charities… an idea by people without dementia.”
Originating from marketing strategies for fundraising, these programs rarely reflect the needs of those they claim to serve. Swaffer asserts, “If it was really friendly, every single dementia-friendly initiative would have people with dementia employed in it, wouldn’t they?”
Instead, she notes, “We are only used in them as the tick box”, pointing to a tokenistic approach that sidelines people with dementia from meaningful participation.
In Australia, where approximately 500,000 people live with dementia – a figure projected to double by 2058 without medical breakthroughs – employment opportunities for those with lived experience are scarce. A 2019 Australian Institute of Health and Welfare report highlighted that dementia care relies heavily on 1.6 million unpaid carers, with no significant data on paid roles for people with dementia in advocacy or initiatives.
This gap undermines the “dementia-friendly” promise, as organisations secure funding by claiming to represent people with dementia without involving them in paid, decision-making capacities.
Lessons from LGBTIQA+ inclusion
Swaffer’s analogy is striking: “Let’s go for the Aboriginal friendly one, and the only people that were involved in that that work were whiteys… Imagine that. There’d be lots of outrage about it, wouldn’t there?”
She extends this to LGBTIQA+ initiatives, noting that a program run solely by heterosexuals would be unacceptable. This comparison exposes the double standard in dementia care, where exclusion is normalised.
By contrast, LGBTIQA+ organisations in Australia demonstrate robust inclusion. A 2021 Transgender Victoria report found that 78% of staff in major LGBTIQA+ advocacy organisations identified as part of the community, with many in leadership roles. ACON’s 2022 annual report noted that over 80% of its paid staff and board members were LGBTIQA+, ensuring decisions reflect lived experiences.
Meanwhile, dementia organisations lag behind. A 2023 Dementia Alliance International report estimated that globally, fewer than 5% of dementia advocacy organisations employ people with dementia in paid roles, compared to over 70% of LGBTIQA+ organisations employing community members.
The toll of tokenism
The “dementia-friendly” label can exacerbate stigma, as Swaffer explains: “If you want to be involved as a person with dementia, what if you haven’t told your family and friends, you’ve got dementia? Well, then you have to out yourself. So that’s not very friendly.”
This forced disclosure is problematic, given that one in five Australians mistakenly believe dementia is a normal part of ageing, according to a 2020 Dementia Australia survey. Such misconceptions further marginalise those diagnosed.
The lack of paid employment opportunities also disempowers people with dementia, denying them agency and economic participation. Swaffer’s 2013 challenge to Alzheimer’s Australia (now Dementia Australia) remains relevant: “I said to Glenn [Rees, then CEO], but you can’t have a programme or an initiative where you’re not employing people with dementia.”
Yet, change has been slow. While some organisations, like Dementia Australia, include people with dementia in advisory groups, these roles are often voluntary, not paid positions with decision-making power, reinforcing Swaffer’s critique of tokenism.
Employment barriers: perceptions vs. potential
The exclusion of people with dementia from paid roles in “dementia-friendly” initiatives often stems from misconceptions about their capabilities. While it is certainly true that cognitive impairments, such as memory loss or difficulty with complex tasks, dementia varies in progression and impact for every individual.
For example, early-stage dementia may only mildly affect certain cognitive functions, while strengths in emotional intelligence, lived experience, and communication remain intact.
A 2021 study in Dementia: The International Journal of Social Research and Practice found that 62% of people with early-stage dementia reported being capable of meaningful work with appropriate accommodations, yet stigma and blanket assumptions about cognitive decline lead to their exclusion.
Despite these barriers, people with dementia can excel in roles tailored to their abilities, particularly in advocacy, education, and advisory capacities within aged care and dementia organisations.
For instance, they can contribute as peer educators, sharing lived experiences to train staff or inform policy, as seen in Dementia Alliance International’s peer-to-peer support groups. Flexible roles, such as part-time advisory positions or community outreach, can leverage their insights while accommodating needs like memory aids or adjusted schedules.
Swaffer’s own journey – pursuing a PhD 17 years post-diagnosis – demonstrates that with support, such as university disability accommodations, people with dementia can remain active contributors.
Early-stage or young-onset dementia diagnoses, which affect around 28,000 Australians, often leave individuals with years of capacity for meaningful work, particularly in roles that value their unique perspective over complex cognitive demands.
Building authentic inclusion
To create truly inclusive dementia care, aged care providers and dementia organisations must move beyond the superficial “dementia-friendly” label and adopt practices that empower people with dementia.
Employing people with dementia in paid, decision-making roles within advocacy and care programs is a critical step. This mirrors the inclusion seen in LGBTIQA+ organisations, where lived-experience voices shape policy and practice, aligning with person-centred care and the UN Convention on the Rights of Persons with Disabilities (CRPD).
Such employment validates the capabilities of people with dementia and ensures their perspectives drive meaningful change.
Redefining the “dementia-friendly” label as inclusive communities is essential. Swaffer argues, “It needs to just be inclusive communities. Why are we labelling people with dementia?” By focusing on universal accessibility – similar to accommodations for wheelchairs or prams – organisations can integrate people with dementia without forcing disclosure, reducing stigma and fostering belonging.
Moving beyond tokenism requires genuine partnership, ensuring diverse, paid advisory groups reflect the 55 million people living with dementia globally, rather than using them as “money procurement tokens.”
Finally, funding must shift from marketing-driven campaigns to community-based rehabilitation, such as speech or occupational therapy, to support independence and quality of life. These steps dismantle the exclusionary facade of “dementia-friendly” initiatives, creating environments where people with dementia are valued contributors.
A rallying cry for change
Swaffer’s critique lays bare the reality: “They’re not friendly at all, in my opinion. They’re exclusive of people with dementia.” Aged care professionals and dementia organisations must confront this facade, learning from the inclusive employment models of LGBTIQA+ communities.
By hiring people with dementia in paid roles, redefining inclusion, and prioritising rehabilitation, the sector can align with human rights standards and empower those it serves.
Anotherlexcellent article that confronts the real issues in dementia care.
How do you know there are not people with early dementia on advisory or management groups? Who with Mild Cognitive Impairment orearly Dementia are going to self-identify to be ‘sought out’ to be ‘representative’ of those with Dementia in decision making? Those capable people are being ‘normal’ capable people already in paid or unpaid positions, if they even have a diagnosis.
I understand and fully support the notion of those the decisions are being ‘made about’ are part of the process and have invaluable input. However. being the ‘token’ or ‘representative’ person with a disability or indigenous person or, in this case. person with dementia on a committee or in paid, employment by service bodies is not the universal design approach.
Ensureing there is the invitation, welcoming and encouraging messaging around participation may be an initial first step in opening the door to participation for some not willing to disclose. I might be that person really wanting to contribute but not disclose.
So true
When society is already ageist and experienced people are often deamed unemployable because they have reached their late 40s or 50s I don’t think this concept is realistic.
This is a fantastic article. Everyone in Australia should read this article and listen to the podcast. You are an inspirational leader, gently articulating what we all want to say. Thank you Kate.
Associate Professor Jane Mears