Human rights for aged care residents confined due to their diagnosis of dementia: An open letter and call to action for residential aged care providers.

There is growing concern in human rights practice and scholarship about the confinement of people living with dementia in care homes (Steele et al, 2020).

This concern is shared by many practitioners working in the aged care sector and extends beyond discussions on the legitimacy of restrictive practices, such as environmental and chemical restraint. Advocates of a Human Rights Act or Charter (in Australia) call for the rights of people with dementia in aged care to be considered and the practice of confining or detaining people based on a diagnosis of cognitive impairment to end.
In May 2024 twelve co-founders launched Open the Doors 2030, an innovative, exciting and inclusive global community of practice and human rights movement which merges revolution with resource.  Since then, the movement has rapidly attracted nearly 700 members in more than 25 countries, hosted nine global meetings and three action learning ‘Keys to the Doors’ sessions.
The OTD2030 approach has been highlighted in publications (HelloCare 2024) and at conferences, its founders appeared in interviews and podcasts.  OTD2030s own website hosts a suite of global resources which inform innovation and best practice in an open sharing of ideas and experiences (www.openthedoors.au)
Presenters and supporters of OTD2030 have included Professor David Sheard, Judy Cornish, Wendy Hall, Angela Fairhurst, Susie Singer-Carter & Rick Mountcastle, Dan Cohen, Mary Fridley, Dr Allen Power, Dr Rodney Jilek, Vicki De Klerk (daughter of Naomi Feil) all thought-leaders from the dementia support field and Dr Nigel Paine on organisational learning. Keys to the Doors meetings have covered topics including language, sexuality and the concept of a living death.

We urge your organisation to be innovative, authentic and caring. To be innovative means to take decisions and lead from the front, not wait for legislation and public pressure to force transformation. To be authentic requires the same attention to the inclusivity and rights of people with dementia as other groups. To be caring necessitates treating people with dementia in need of support with respect and understanding, not herding them together based on a diagnosis and locking them away from the rest of the community due to fear.

Many have advocated for a Human Rights Act in Australia. A human rights-based approach to dementia recognizes that people with dementia have the same human rights as anyone else, and that their rights should be respected. This approach can help address the discrimination and stigma that people with dementia often face.
The curious question for the Board, Executive or stakeholders of every organisation involved in dementia support at any level should therefore be:

How does advocacy of a human rights approach reconcile with practising outdated and unnecessary approaches such as confining and detaining people in ‘Memory Support Units’ based on their diagnosis of dementia?

The opportunity exists to model values-driven care and lead the industry by proactively endorsing the OTD2030 approach. It can do this by advocating for the rights of residents with dementia to be included in a Human Rights Act.
To do so each organisation must first commit to working towards a model of care that negates the distress which leads to what is stigmatised and erroneously labelled ‘changed behaviour.’
Co-founders of OTD2030 have lived experience of successfully opening the doors to so-called ‘Memory Support Units’ and implementing models based on worldwide best practice (e.g. Page et al 2019).  This has led to both improved quality of life for residents and the quality of work of teams that provide the support.  It has built a learning culture, enhanced employee value proposition and significantly aided retention of teams.
OTD2030 is a non-commercial movement which is available to advise and support necessary change management in order for providers to confidently set a committed aim to have no locked units by 2030.  In doing so it actively supports the inclusion of people with dementia within the broader care home community, and the community around it.
Pre-requisites to this would include development of a model of dementia care which does not see ‘changed behaviour’ as an inherent result of cognitive impairment, and instead due to an emotional distress response which can be ameliorated or averted by implementation of best practice dementia support.
The term ‘changed behaviour’ is misleading and unhelpful, and the phrase ‘person-centred care’ has in David Sheard’s words, been hijacked and rendered meaningless. There cannot be person-centred anything when people are locked in merely because they have different needs.
OTD2030 acknowledges many leadership challenges with change in residential aged care, hence its realistic target to have no locked units by 2030. Setting a roadmap to create a care model enabling dementia support without locked doors would be strategically beneficial as well as the right thing to do for your organisation.
OTD2030 continues to attract thought-leaders and pioneers in this space and in March 2025 Community Home Australia, Canberra hosts OTD2030 member Dr Allen Power for a two-day leadership Masterclass and an action learning workshop which takes place with residents with dementia in the sessions.  This is one of many opportunities to partner and collaborate with OTD2030 and other likeminded dementia support pioneers.

OUR CALL TO ACTION IS:

We respectfully request the Board, Executive or/and key stakeholders in every organisation’s leadership team urgently considers the wholly achievable goal of creating inclusive, dementia-enabling homes with no exclusion or locked areas as a strategic priority for 2025-2030.
We suggest Human Rights Day, December 10th as an ideal opportunity to socialise and market this commitment and the start of this journey.
OTD2030 offers free access to resources, a global community of practice and a proactive and progressive learning culture. We sincerely hope your leaders see the opportunity to join a movement that is leading this conversation globally.

 "We respectfully request the Board, Executive or/and key stakeholders in every organisation’s leadership team urgently considers the wholly achievable goal of creating inclusive, dementia-enabling  homes with no exclusion or locked areas as a strategic plan priority for 2025-2030." 

With love & kindness,

Michael Page

on behalf of the Co-founder of Open the Doors 2030.

References

HelloCare article available at:  https://hellocare.com.au/open-the-doors-2030-the-bold-global-movement-redefining-dementia-care/  Accessed 28/10/2024
Page M, Daniel K, Newman P.  Opening the doors on a new standard of care. Australian Journal of Dementia Care.  2019, Vol 8 Issue 5.
Steele L, Carr R, Swaffer K, Phillipson L, Fleming R. Human Rights and the Confinement of People Living with Dementia in Care Homes. Health Hum Rights. 2020 Jun;22(1):7-19. PMID: 32669785; PMCID: PMC7348416.

One Response

  1. I have sent a version of this open letter to my organisation, Uniting Communities, SA. I await their response which I will publish with their permission. We encourage everyone to ask the curious question in their organisation and share their response.

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