Human Rights are inalienable to each and every person. They cannot be given to us. But they can be obstructed or restricted by a number of factors, some unintentional. As part of World Alzheimer’s Month, Owen Miller, Policy Officer at Alzheimer Scotland explores how rights can be applied in practice to improve the lives of people with dementia and carers.
Every day we exercise our Human Rights in a number of ways, so much so that we take them for granted. Our communication, our choices and our actions are human rights playing out in practice. They are fundamental to who we are as individuals and allow us to play active roles in the societies in which we live, take part in activities we enjoy and go about our lives in a way which is meaningful to us.
But too often people with dementia find their rights restricted by the stigma which often surrounds their condition. Assumptions are made about a person’s capacity to make decisions. Risk-aversion becomes standard practice. Attention turns to what a person cannot do rather than what they can. These often come about as a result of circumstances in which well-meaning attempts are made to protect the person from harm or do what is perceived to be in a person’s best interests. However, it is often the case that doing so fundamentally fails to respect the person as someone with unique experiences, interests and abilities, who can still actively and meaningfully engage with their community.
The PANEL (Participation, Accountability, Non-Discrimination, Empowerment and Legality) principles provide a strong framework for ensuring that a rights-based approach is taken in in practice. This can be applied in a range of contexts and settings from the way an individual is treated as the result of stigma up to the highest level of decision making on health and social care services.
Alzheimer Scotland’s public policy work is grounded in a rights-based approach at both a national and local level. A fundamental part of this which involves ensuring that the views and experience of people with dementia, their families and carers, underpin our own internal policy development, e.g. our 8 Pillars Model of Community Support, Advanced Dementia Practice Model and also to our new developing AHP policy called “Connecting People, Connecting Support” which will be ready in the next few months.
Externally, the Scottish Dementia Working Group (SDWG) and the National Dementia Carers Action Network (NDCAN) are well established national groups which have led the way in showing how involvement can work. Both groups meet with Scottish Ministers and civil servants to discuss issues which matter to them and have been involved in the development and implementation of Scotland’s dementia strategies. They have also informed national training programmes such as the Promoting Excellence Framework and worked with academic institutions to share their experiences with nursing and Allied Health Professional students to raise awareness of future generations of practitioners.
More recently local groups are now coming together, looking to shape their local communities in a number of different ways, including, through engaging with local decision makers within Integrated Joint Boards, but also with local businesses and organisations to make them more Dementia Friendly and by working with local schools to raise awareness of dementia amongst younger people.
People with dementia and their carers have time and again shown us their commitment to working and supporting policy, strategy and their communities, to ensure that their experiences drives improvements.
There exists a common perception that Human Rights are abstract concepts which exist only in the domain of legal professionals and policy makers, with no bearing on real life. This is demonstrably untrue – we need everyone working across health, social care, housing and within communities whether in the statutory, third and independent sectors to support involvement and engagement in a meaningful way. When given the opportunity, people with dementia and their carers are more than able and willing to exercise their Human Rights in meaningful and affirming way.
Thank you for taking the time to reading my blog, all comments or opinions are welcome.
This blog is an amended version of a blog which was initially written for the Scottish Council for Voluntary Organisations’ (SCVO) #RightApproach campaign. It can be viewed here.
Policy Officer, Alzheimer Scotland
Owen works in Alzheimer Scotland within the Policy Team and has previously worked within the Focus on Dementia improvement programme on a seconded basis. His role focuses on stakeholder engagement at a national level, including developments in policy, strategy and legislation by the Scottish Parliament and Scottish Government, helping to ensure that they are shaped by the experience and voices of people, their families and carers.