Person-centred and rights-based care approaches

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Since 2022 A collaborative effort between the WHO and the WHO Collaborating Centre for Mental Health, Disability and Human Rights (WHO-CC) at the IMH has been underway to produce a report to highlight good practice in human rights in dementia.

The report will show a wide range of countries and services, where good practice has been successfully implemented, across different contexts and legal and policy frameworks. This is to enable countries to develop and scale up person-centred and rights-based community dementia services protecting people’s human rights such as right to legal capacity, non-coercion, participation and inclusion. These examples will illustrate how person-centred and rights-based practice can be achieved, inspiring policymakers, healthcare providers, and societies.

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In 2021, the World Health Organization launched the ‘Guidance on community mental health services: promoting person-centred and rights-based approaches’, which described different types of community mental health services worldwide that promote and protect legal capacity, implement policies of non-coercive practices, promote the participation of persons with lived experience in the design and delivery of services, enable and maintain inclusion within the community, and adopt person-centred and recovery-based care. During the production of the guidance, the WHO were asked by many stakeholders to complete a similar document for dementia services around the globe. A significant challenge to meeting these needs and supporting everyone affected by dementia is that there is a lack of community dementia services worldwide. People with dementia are entitled to human rights not only as all humans are, but they are also explicitly recognized as rights holders under the UN Convention on the Rights of Persons with Disabilities (CRPD).

The WHO strongly advocates for community services around the world to develop and implement person-centred and rights-based care that uphold and reinforce the CRPD rights and principles throughout the care and support. Key elements of rights-based practices that comply with the CRPD include respect for legal capacity, non-coercive practices, participation, community inclusion, and recovery-oriented approaches to care. Since 2022 A collaborative effort between the WHO and the WHO Collaborating Centre for Mental Health, Disability and Human Rights (WHO-CC) at the IMH has been underway to produce a report to highlight good practice in human rights in dementia.

Drawing on the methods used by the WHO to create their previous guidance has enabled us to identify a wide and diverse range of community dementia services across geographical, cultural, and economic contexts. The methodology includes seven phases (see Figure 1): literature and internet searches, e-consultations with networks, online surveys, and interview follow-ups. We established the ‘Dementia International Advisory Network for Human Rights’ (DIAN) including  international organisations, and working groups of people with dementia.

The DIAN came together every three-to-four months to provide advice and feedback for stages completed and communicate via email and online as and when required.

Currently the full report is in draft form and the plan is to publish it on the WHO-CC section of the IMH Website by December 2026 with case summaries also available via the WHO website for the Global Dementia Observatory and a range of academic papers.

Based on Harden et al., (2024) Developing Good Practice Guidance for Community Dementia Services: Person-centred and Rights based Care Approaches. WAPR BULLETIN, 53, p1-10.