Rights based approach to dementia

How does Alzheimer Scotland develop its policy priorities?

1. Lived experience at the heart of all our decisions

The experiences and views of our members, including those from the Scottish Dementia Working Group, National Dementia Carers Action Network and our local networks of people with dementia, and carers, play an integral part in setting our policy priorities and informing the development of our policy reports. Not only does their collective shared experience set our priority areas for campaigning, but their voice is also vital in the engagement and delivery of these policies into practice.

It was through working with people with dementia, their families and carers, Alzheimer Scotland developed the 5 Pillars Model of Post Diagnostic Support, the 8 Pillars Model of Community Support and the Advanced Dementia Practice Model. These are all evidence-based reports that outline practice models which when implemented and coordinated together can deliver the transformation in dementia support that our members have indicated is so vital to their quality of life. Alzheimer Scotland is currently campaigning, with our members, to ensure that this coordinated approach to the delivery of dementia support, is implemented fully at a local level, across all of Scotland to ensure nobody faces dementia alone.

Alzheimer Scotland’s report on Understanding stress and distress in dementia underpins the practice models outlined above.

2. Rights-based approach

In all of Alzheimer Scotland’s approaches we use a rights-based approach to make sure that people who will be affected by decisions around policy, strategy, services, support or legislation have the opportunity to be involved from the beginning. We do this by applying the PANEL principles to to make sure people's rights are being upheld. These are: 

• Participation - Everyone has the right to participate in decisions which affect them. Participation must be active, free, meaningful and give attention to issues of accessibility, including access to information in a form and a language which can be understood. 
• Accountability - Requires effective monitoring of human rights standards as well as effective remedies for human rights breaches 
• Non-discrimination and equality - A human rights based approach means that all forms of discrimination in the realisation of rights must be prohibited, prevented and eliminated. 
• Empowerment - Individuals and communities should understand their rights and should be fully supported to participate in the development of policy and practices which affect their lives. 
• Legality - A human rights based approach requires the recognition of rights as legally enforceable entitlements and is linked in to national and international human rights law.

Alzheimer Scotland also ensures that the Charter of Rights is at the centre of all campaigning activities. The 2009 Charter of Rights reflects the standards already set by the United Nations and other international instruments by recognising: 

• The need to promote and protect the human rights of all persons with disabilities, including those who require more intensive support
• That persons with disabilities must be guaranteed the fullest possible realisation of their human rights including an opportunity to participate in and contribute to society, and where necessary, with the highest attainable standard of care
• That discrimination against any person on the basis of disability is a violation of the inherent dignity and worth of the human person. Download the Charter of Rights