Post by Kate Swaffer, Consultant, Alzheimer’s Australia and Consumer Advocate. She is also the author of the “Creating life with words: Inspiration, love and truth” blog.
As the incidence of dementia rises globally, the rate and scale has forced governments to make it a health priority, and from a consumer’s perspective, it is therefore very timely to reconsider the language being used to represent people with dementia and its impact on stigma. In my research during 2014, I have considered the exclusion of people in research and the stigma in the stigma literature, and if the presence of this stigma and lack of people with dementia in the studies about dementia impacts on the value of the research or prevents the timely translation of good research into better practice. I think it does and believe researchers and the sector including governments need to start doing research into this group, as well as change the language they are using about us, in the same way they respectfully did that for the Indigenous and disabled communities.
There is a significant body of evidence to draw upon and the literature appears to show more positive attitudes. However, this may be a socially acceptable veneer covering up the embedded and unconscious negative attitudes that drive human behaviour, expressed as stigma and discrimination. I believe there is a sense of what Martin Luther King described as “the degenerating sense of “nobodiness” amongst many disabled people, especially those who are struggling with mental, terminal or chronic illness, old age and dementia.”
Changing the language used about us and including us in everything that affects or is about us will go some way towards reducing the issues such as stigma and discrimination.
It is imperative we aspire to change views of and about people with dementia and begin to include them in the research and conversations about them. People with dementia are raising their voices all around the world, as they want to be part of the conversations and research, and until they are included fully, the stigma and feelings of shame we experience will continue.
Language is a powerful tool (Sabat 2001; Parker 2001; Hoffert 2006; Anonymous 2010) and our words do reflect our thoughts and feelings, and can show respect or disrespect. The words we use not only strongly influence how others treat or view people with dementia, perhaps more importantly they can also impact how they view themselves and how they relate to others, which can negatively impact their ability to be empowered. It has the potential to promote and empower, enable and increase self-esteem, and encourage one’s ability to self-help, or it can demean, devalue, disrespect and offend those we refer to. People can live well with dementia, and the language used about them needs to be normal, inclusive, jargon-free, non-elitist, clear, straight-forward, non-judgmental, and which centres on the person not the disease, social care system or language trends that come and go.
The current language used in the literature, the media and in the community creates the wrong descriptions and prescriptions of persons living with the symptoms of dementia, and creates and supports broader stigmas and misconceptions of what living with dementia is really like. It also destroys the value of the expression of the lived experience, adding to the disbelief and stigma. Hughes, Louw & Sabat (2006) state; “Language creates the particularly human kind of rapport, of being together, that we are in a conversation together.” Therefore, it is imperative we use inclusive non offensive language that supports the whole person positively, rather than negative demeaning language that stigmatizes and separates us.
In conclusion, there are a range of issues important to understand and the critical part missing in research about those diagnosed with dementia, and the organizations supporting them is the authentic voice of people with dementia, which is negatively impacted by the language being used about them.
You can view Alzheimer’s Australia full language guidelines 2014 here.
Kate also spoke to us about the positive impacts of dementia-friendly communities on people living with dementia and their carers here. She will be presenting on “Younger Onset Dementia: Reclaiming my Life” at the upcoming 6th Annual National Dementia Congress 2015. Kate will also be co-facilitating a pre-conference workshop with Maxine Thompson on “Diagnosed with Dementia: What Next”.