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.
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 meaningful way.
Alzheimer Scotland’s public policy work is grounded in a rights-based approach at both a national and local level
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. Often this comes 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 their 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 involves making sure that the views and experiences of people with dementia, their families and carers, underpin our own internal policy development; for example, our 8 Pillars Model of Community Support and Advanced Dementia Practice Model.
Externally, the Scottish Dementia Working Group and the National Dementia Carers Action Network 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 have come together to shape their communities. They have been engaging decision makers within Integrated Joint Boards, helping local businesses and organisations to become more Dementia friendly, and 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, in order to ensure that their experiences drives improvements.
There is 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 across 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 affirming and meaningful way.