22 February 2017 | by Peter Kinderman
The FREDA principles are a useful mnemonic, reminding us of our obligations to support fairness, respect, equity, dignity and autonomy.
On Valentines’ Day this year, the BBC chose to feature a couple living with Down’s syndrome as their ‘human interest’ story.
I don't think anyone doubts the struggles that this couple have faced, and will face, or underestimates their need for support. But this story illustrates well how a focus on wellbeing as a guiding principle – concentrating on those issues that make life worth living – changes how we think about care.
We need to understand and address the biological aspects of conditions such as Down’s syndrome, but there is much more to a human (and humane) response than merely an understanding of chromosomal abnormalities.
A focus on wellbeing spans all the range of those things that matter to our life satisfaction, our physical health, but also on having meaningful and purposeful activities, and on our relationships.
The BBC, by choosing to feature this couple, rather wonderfully illustrated how what matters in our lives is a much richer and fuller concept than is sometimes assumed.
I was reminded of this story as I attended the launch of our report Psychological Dimensions of Dementia: Putting the person at the centre of care at the Welsh Assembly Senedd in Cardiff on Thursday.
Just as the BBC chose to emphasise the importance of a full and rich, meaningful, life for people living with Down’s syndrome, Psychological Dimensions of Dementia shines a light on how psychology (and psychologists) can help to promote wellbeing and increase the likelihood of people with dementia living full lives in their local communities.
Care for people living with dementia also necessarily involves daily consideration of human rights. When we are at risk if we travel on their own, we may need people to restrict our freedom of movement in our own best interests. If our memory and judgment are poor, we may make choices – in what we wear, what we say, how we behave – that could threaten our dignity.
And, when other people necessarily make decisions for us, in our best interests it is vital that our fundamental human rights are protected, and are always at the forefront of care.
The FREDA principles are a useful mnemonic, reminding us of our obligations to support Fairness, Respect, Equity, Dignity and Autonomy.
In our work as psychologists in the fundamental human rights of people living with dementia, we recognise the importance of addressing the fairness of our decisions; are they lawful, necessary, proportionate, have we taken necessary proactive steps prior to an issue becoming a crisis, are we pursuing the least restrictive alternative, are we actively and consciously balancing rights and risks?
Are we treating people fairly, with due process and according to both statute law and natural justice? Are we treating people equally and equitably (which might not necessarily be the same thing)? Are we maintaining and defending the dignity of each individual, ensuring that that are accorded the respect they deserve and the law demands?
And are we doing all we can, within the limits of each person’s circumstances, to maintain their autonomy; supporting them as necessary, to make decisions themselves wherever possible?
And, informed by more recent research (perhaps demanding FRIEDA rather than FREDA), what are we doing to ensure that a person’s identity – sense of personhood and individuality – is maintained as they live with the cognitive impact of dementia?
All these considerations are essentially psychological, and are essential in medical care. But they are also political – speaking to the roles of commissioning, funding and monitoring services, the training, regulation and conditions of employment of staff, the legislative framework within which we work, and indeed of the culture and ethos of the Nation.
Hence our welcome presence in Senedd on Thursday.