CRFR associate researcher, Jane Robertson, reflects on how research is helping to change ideas about quality of life for people with dementia
Quality-of-life and dementia. Are these mutually exclusive terms? Certainly, loss and dread are commonly associated with dementia if we rely purely on media images of the condition. Losing the person as they succumb to a debilitating and dreadful disease is a view frequently portrayed when dementia is represented in newspaper and television reports. Indeed, there is much that is frightening and distressing about dementia, particularly as the condition develops and a person becomes progressively disorientated and communication becomes increasingly challenging.
However, a sustained emphasis on ‘losing the person’ to a disease that eats away at their personhood negates the potential for people with dementia to continue to enjoy life. Significantly, it also makes it harder for people with dementia to be valued by others as having a meaningful life, if that life is continually represented in a one-dimensional and negative manner.
In the academic world, quality-of-life for people with dementia has traditionally relied upon observation and asking other people about what the person is experiencing (proxy reporting). Frequently, this perspective confirms a fairly poor picture of life with dementia.
On the other hand, when the person is asked directly about their life, which has been the case in more recent research, more positive interpretations can be found. Their quality-of-life is not all bad. Like most people, it has its good and its bad aspects. This different perspective is often countered with the assumption that, if a person with dementia reports their quality-of-life in positive terms, this is due to a lack of awareness as a result of their condition. This stance therefore undermines the capacity, firstly, for people with dementia to reflect accurately upon their lives and, secondly, for people with dementia to be able to enjoy aspects of their life like anyone else.
Significantly, in-depth qualitative studies have demonstrated that people with dementia can reflect meaningfully on their lives even when they have significant cognitive impairment. Research has reported the potential for quality-of-life to be good if a person is valued by other people and if they are supported to continue to make a meaningful contribution in family and community life.
Conversely, quality-of-life is often reported to be poor when the person believes they no longer have any social standing, particularly if they believe that others view them as being diminished in relation to their self and social identity. The importance, therefore, of presenting a more balanced perspective on life with dementia cannot be understated: if quality-of-life is closely associated with how others perceive and respond to a person, then understanding the positive aspects of life with dementia, as well as the challenges, is vital to ensure a society that treats people with dementia as having worth and value. Being able to find meaning within and from life are inseparable.
Dr Jane Robertson is a researcher at the University of Stirling with an interest in ageing, dementia and quality-of-life. She is an associate researcher with the Centre for Research on Families and Relationships. Read more about her research examining narrative perspectives on quality-of-life among people with dementia here: http://dem.sagepub.com/content/early/2013/03/15/1471301213479357