Why our Human Rights Act Matters...to people living with dementia

Sandra Coulter is the CEO of Silverline Memories, a charity she founded in 2013 to provide “places to go and things to do” for people living with Dementia but which has developed to also include Advocacy, Advice & Information and Wellbeing Support Services.  Sandra sits on a number of groups including the VSCE Ageing Well Subgroup and the Newcastle Mental Health and Dementia working partnership.  She has published academic articles about Institutional Ageism and is currently undertaking a Master’s degree with Newcastle Business School.  She lives in Newcastle upon Tyne with her husband and three teenaged children.

Please note, this is a guest blog and views expressed in this blog do not necessarily reflect the views of BIHR.

It is often assumed that people with Dementia lack the capacity to make decisions for themselves but this very often not the case, particularly during the early stages following a diagnosis.  Many people living with a dementia causing condition live independently and continue in paid employment for several years after diagnosis, and even those who cannot should still be involved in decisions that impact them. 

People with Dementia, their Carers and their families, have the right to be recognised for who they are, to make choices about their lives including taking risks, and to contribute to society. They have the right to continue with day to day and family life, without discrimination or unfair cost, to be accepted and included within their communities and not live in isolation or loneliness.  A Dementia diagnosis should not define a person, nor should anyone be ashamed of it.  Unfortunately, these rights are not always upheld and if a person with Dementia, or someone who cares for them, is unaware of the Human Rights Act and why it is important to them, they may accept things that are unjust and unfair.

As an example: people requiring care are often forced into residential housing because of a lack of provision of home care and this can lead to a number of rights being infringed upon including the right to a family life, the right to access the community, and most significantly can lead result in deprivation of liberty orders that may not always be necessary.  Decisions are made based on what is convenient for those caring for the individual, rather than what the individual or their close family would choose to happen. Often people feel a sense of injustice, that the decisions are just “not right” on an instinctive level, but without knowledge about our Human Rights it can feel that there is no mechanism through which to object or raise concerns.   

The Human Rights Act give us the tools to ensure that the voices of people with Dementia are heard, that a diagnosis is not conflated with a lack of capacity, and that no decision is made about a person, without that person.