Dementia, legally, domestically and internationally, is a disability. There’s no escaping that simple fact.
Increasingly, I have become very worried about the bastardisation of rights for marketing purposes, losing sight of the real essence of what rights are (or indeed their jurisprudence basis, which is admittedly only a small part of debate).
Dementia friendly communities, although ill articulated (there are over a hundred different types of dementia, and the relationship between the community and the State has not progressed much with the evolution of the concept), are necessary but insufficient as a meaningful contribution globally. They are perfect for branding purposes of charity, including their ambassadors, but the level of discussion needs to be substantially more sophisticated.
The concept of dementia friends and dementia friendly communities was important because it seemed to mark a fundamental shift from a focus on meeting the physical and health needs of the person with dementia to an approach that recognises the need to support the person to achieve the best quality of life possible. But I believe this was fundamentally to misunderstand one crucial aspect: that mental and physical health are a crucial part of wellbeing. Put another way, you are unlikely to be able to participate in community and civic life if you are too depressed or immobile to go out.
There are two very different underlying objectives of dementia friendly communities which have as their end goal a better life for people with dementia. First, the objective of reducing stigma and understanding of dementia by greater awareness and meaningful engagement for persons with dementia of all ages – that is the lived experience approach. There is, unfortunately, a tendency for a ‘celebrity’ approach to the ‘lived experiences’, rather than collating the experiences, views or opinions, or back stories, of people with dementia even if at first they don’t appear ‘particularly sexy’ (or marketable). Second, the objective of empowering people with dementia in their own communities by recognising their rights and capabilities so that they feel respected empowered to take decisions about their lives – the rights approach.
However, I feel that the approach provided by the United Nations CRPD (Convention on rights for people with dementia) is entirely relevant here too. The CRPD sets the stage for a confrontation with the assumption that a disability may unduly justify coercive measures in the form of coercive detention or as use of force. We saw this in care homes where people with dementia were being physically handcuffed to their chairs to prevent them from going anywhere. It is now incredible to believe that this was deemed possible, although it became institutionally acceptable for people to use the chemical cosh of antipsychotics inappropriately, sometimes, to have the same effect.
The CRPD instead requires that the individual’s self-determination and integrity remain paramount. Under the CRPD, member states have committed itself to raising awareness about persons with disabilities and respect for their rights. The initial failure of the World Dementia Council to have many people living with dementia was a spectacular example of offending this. Generally, persons with disabilities encounter prejudices that can affect whether they can obtain a job or make them feel that they are being discriminated against. The CRPD, rather, emphasises that persons with disabilities have equal rights to participate in political and public life, that is, to take an active part in the governance of Denmark. Even now, the World Dementia Council represents the views and needs of people without dementia already with power and influence, and vested interests, rather than the needs of people living with dementia or care partners globally.
Secondly, the right to live independently and to be included in society are protected by the CRPD. The Convention therefore obliges states to make efforts so that all persons with disabilities can choose their place of residence and not be compelled to live in institutions or institution-like accommodations. The UK and other countries, including low and middle-income countries, have been slow to join up approaches in health and housing, essential for dementia policy. This is going beyond the approach of the celebrity-driven dementia friendly community.
Thirdly, the CRPD furthermore requires that persons with disabilities should have equal access to health care. This I believe is incredibly important, yet many general practitioners and other specialists work in clinics that are not accessible to persons with disabilities, thus preventing persons with certain disabilities from being able to use their local doctor. The same applies to pharmacies and other places that are important for access to healthcare.
The BRIDGE CRPD-SDG was devised to respond to increasing demands for trainings on the implementation of the CRPD and inclusive development, and how these link to achieving Agenda 2030 and the SDGs. It is a coordinated training investment, drawing from the resources and experiences of the IDA and IDDC networks and their members. I feel BRIDGE CRPD-SDG is now essential for dementia to move forward in a strong geopolitical context, away from domestic power games of people gaming the system domestically.
Discrimination of persons with disabilities is widespread – BRIDGE CRPD-SDG training results from common observations that despite great achievements to raise awareness about the rights of persons with disabilities through global advocacy, inclusive societies are still far from the reality experienced by persons with disabilities. Advocating for ‘all human rights for all persons with disabilities’ is urgent yet also complex. The CRPD sets high standards and obligations to ensure the effective realisation of all human rights (i.e. covering all sectors and dimensions of life) for all persons with disabilities (acknowledging diversity of gender, age, culture, impairments, ethnic origin, etc.).
Building a critical mass of skilled DPO advocates representing the diversity of constituencies in all regions requires coordinated efforts. The scope of work requires coordination of efforts drawing from different sources of expertise (e.g. in-depth understanding of the CRPD and its enforcement, inclusive facilitation skills, inclusive policies and governance). It requires drawing from the resources of diverse constituencies.
BRIDGE CRPD-SDG provides an important analysis.
- Mitigating against a disconnect between human rights and inclusive development, including the need to address concurrently CRPD provisions and policy reform (including through inclusive development and the SDGs) to avoid a disconnect between human rights standards, and the mechanics required to translate them into local realities.
- Inclusion of all persons with disabilities needs to be addressed. As it stands today, however, there are many problems with accessibility: persons who use a wheelchair can still not use public buses because the drivers or others are not permitted to run the ramp out to the wheelchair. Public websites are not always accessible to persons with disabilities. Many polling stations are not accessible, entailing that persons with disabilities are unable to vote at their local polling stations. The list could be much longer. People with dementia are not given the tools to perform the best they can, for example using memory aids or adequate housing or signage.
Dementia Alliance International and BRIDGE-SDG
I believe that Dementia Alliance International could foster a powerful synergistic strategic alliance with BRIDGE-SDG, and this could be a powerful key for member states to access rights.
BRIDGE CRPD-SDG strives to enact the general principles of the CRPD throughout its training objectives, content, and teaching methods:
• By, for and with persons with disabilities. Advocates are needed with the skills required to participate and influence decisions that affect their lives, in line with the motto of the disability movement “nothing about us without all of us” and the objective of full and effective participation. This is indeed the motto of the Dementia Alliance International (see below). The CRPD is based on the recognition that persons with disabilities have the right to self-determination and autonomy, even when they have difficulty understanding complex issues or have difficulty expressing their views. This is going beyond mere tokenistic empowerment and engagement, or an illusion of involvement.
• Ensuring and promoting diversity – Attention is paid to ensure the optimum representation of the diversity of the disability movement among participants, including gender balance, and representation of people with different types of impairments.
• Participatory methods – BRIDGE CRPD-SDG is based on mobilisation of participants’ knowledge, and is very practical and participatory. It places emphasis on inclusiveness and strives to ensure inclusive facilitation for all groups and participants. Each participant is selected in relation to their experience, knowledge and active contribution to the promotion of rights of persons with disabilities, and they are expected to actively contribute to the content of the training. This is going way beyond selecting people who can market the shared values of domestic organisation with powerful vested interests.
Dementia Alliance International is a registered non-profit organisation whose membership is exclusively for people with a medically confirmed diagnosis of any type of a dementia from all around the world . Members seek to represent, support, and educate others living with the disease, and the wider dementia community. Members comprise an organisation that strives to provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.