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“Treat me like a person, because that is what I still am”

Overcoming the stigma of dementia

To avoid stigmatising people living with dementia, it’s important to achieve a balance between safety and autonomy, according to the Sodexo Institute for Quality of Life – our in-house think tank. Autonomy is described as a behaviour that’s managed by an individual, consistent with their values and interests.

In its report, Treat me like a person, because that is what I still am, the Institute explores what quality of life and the progress of an individual mean to people living with dementia, their relatives and carers. It comes at a time when figures for dementia continue to rise. Currently, about 47 million people are living with dementia worldwide. Nearly 60% are from low and middle income countries. The total number of people living with dementia is projected to reach 75 million by 2030 and 132 million by 2050.

The report is the result of a round-table ‘dialogue’ with experts from the healthcare sector and academic disciplines such as health and ageing, neurology, psychiatry and bio-behavioural sciences, as well as from business and the NGO sector. The meeting, organised by the Institute in partnership with Planetree, took place in Washington D.C. in May 2016.

Understanding quality of life

As set out in the report, the Institute points to autonomy being intrinsically linked to a person’s sense of identity. It’s about being able to make progress as an agent with free will, while being responsible for their actions. Even when autonomy is limited by cognitive or physical impairment, it’s important to allow individuals to satisfy the need for independence.

Higher levels of autonomy have been linked to more creative learning and engagement, more energy and vitality, lower stress, better relationships and, therefore, an improved quality of life.

The report also considers the language we use and whether it fits with a modern view on care, how technology is being used to manage risk and how dementia is being studied.

 It concludes that by thinking about autonomy, we can get a better understanding of what dementia is like for all involved. This comes through continuous listening and engagement rather than from opinions formed out of context. Finding the delicate balance between safety and autonomy – managing risks while promoting engagement in meaningful activity – is essential.

 

 

Institute for quality of life

September 18, 2018

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