The training that was given to practitioners and navigators working in Bristol’s Dementia Wellbeing Service, provided by the British Institute of Human Rights has been hugely beneficial. It has greatly influenced how we reduce stigma and work alongside people living in Bristol with dementia, who may or may not have mental capacity to make their own informed decisions about their care needs and other aspects of their life.

We have learnt that the principles of the Mental Capacity Act uphold the main values of the Human Rights Act. For example, the principle of autonomy, this informs the right to respect private and family life and the right to liberty. These are respected under the framework of Deprivation of Liberty Safeguards. The right to a fair trial and the right not to be discriminated against are core principles of the Mental Capacity Act.

As practitioners and navigators working with people throughout all stages of their dementia it is common for us to hear assumptions made by other professionals and members of the public suggesting that a person lacks mental capacity. This is based merely upon the fact that they have a diagnosis of dementia.  We have also heard statements which accompany this such as; “because they lack capacity, we can now make a decision about them going into care because that is what is required in their best interest”. Where this assumption does the most damage is during the process of our communication and when we are intervening in their life.

With BIHR support we have really reflected upon our own values and how as a multi-disciplinary service we might have different views about what decisions may be required in a person’s best interest, but this is not always what a person with dementia may choose or may have once wanted for themselves. Therefore we need to forget our agenda and remember our duty to assess a person’s mental capacity properly and then base all best interest decisions upon a checklist of criteria. Furthermore where the person is found to have mental capacity, their right to make an unwise decision should be respected. 

As a human rights lead within the dementia service, I've been able to offer support and guidance to my colleagues so they are able to feel confident about defending the rights of people with dementia. We promote their dignity and wellbeing, and reduce harm where we think people are being unduly restricted, stigmatised or left in a situation which is inhumane.  Specific examples include:

  • Working to improve the experience of people living in care homes, by offering education about least restrictive care planning
  • Advocating on behalf of a person with dementia who was living in a poor environment so that she could be assessed and provided with a much-needed package of care from her local authority
  • Working with a married couple to keep them together and respecting their right to privacy and family life
  • Supporting someone with dementia to maintain their employment by reducing stigma in their workplace
  • Using human rights to work with carers, encouraging them to consider the issues around the person with a diagnosis and their right to not have their diagnosis disclosed without their consent.

Within the last two years, the Dementia Wellbeing Service has now gained a better understanding of wellbeing and advanced planning. Positive risk taking is embedded in our documentation so that, as a service, we are reducing stigma, respecting privacy and working within the law. The whole organisation has developed skills and an increased pool of knowledge is demonstrated throughout discussions in team meetings, supervision, strategic planning. This is also reflected in our documentation e.g. risk assessments and wellbeing plans which we are innovatively developing.  

Lisa Clevely is Senior Dementia Practitioner at the Bristol Dementia Wellbeing Service.