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User-led research looks into ‘invisibility of dementia’ with published paper
14th May 2024
A new research paper co-authored by the NHS Research Scotland Neuroprogressive and Dementia Network (NRS NDN) has been published, reflecting on user-led research around the invisibility of dementia
The paper, entitled Is the Invisibility of Dementia a Super-Power or a Curse? looks into ‘Public Understanding of Dementia as an Invisible Disability’ and the varying impacts on those with the condition.
It was published in the International Journal of Environmental Research and Public Health last month, with the user-led project being one of several funded by Innovations in Dementia - a not-for-profit Community Interest Company (CIC).
NRS NDN believes that more work is now needed to highlight how user-led research “can provide new, relevant knowledge that is of benefit to the scientific and wider community, as well as empowerment for those with lived experience.”
The research centred on, and was co-produced by, the SUNshiners group, comprising 11 people in the early stages of dementia with varying individual experiences of disclosing diagnoses to others.
The group found that, despite growing awareness around ‘invisible disabilities’ – significant conditions that are not immediately apparent – there is very limited research into the pros and cons of the invisibility of dementia.
The paper states: “The group’s research topic arose from discussions about their everyday experiences, in particular the experience of people being surprised or disbelieving of their diagnosis. The positive and negative experiences of disclosure led to the question of whether the invisibility of dementia is helpful or not. Some of our members found the invisibility of their condition a relief, whilst others felt it led to disbelief or misunderstanding.”
Derived from those discussions, the SUNshiners group chose to look at whether the general public felt that the invisibility of dementia was positive or negative.
Supported by NRS NDN Lead Dr Rosalie Ashworth, the group designed and developed a short survey to explore what the public knew about dementia and what they thought about its invisibility.
A mixture of open and closed-ended questions was used to gain meaningful data. A total of 347 people completed the survey (315 online and 32 paper-based), which was then co-analysed.
The paper’s findings suggest:
- That the majority of the public felt that the invisibility of dementia was negative
- That knowing someone had dementia when first meeting them would be beneficial
- That people living with dementia should maintain the right to vote
- That people living with dementia do not automatically require a consistent, regular carer
Fundamentally, it was concluded that “the findings support the disclosure of dementia diagnosis” but that “more action is needed to tackle stigmatised views” including more education to “support a positive disclosure experience”.
Furthermore, it was stated that, while it appears “the public understanding of dementia is improving and that there is a wish to be able to provide appropriate support,” the SUNshiners group “do not feel confident that the stigma has reduced enough to feel comfortable.”
The paper added: “More research is needed into whether people living with dementia would prefer to be visible and to what extent (i.e., automatic sunflower lanyards or a more dementia-specific symbol?), as well as research into supporting co-production groups through the loss and change of group members as well as within themselves.
“Finally, the SUNshiners project and its experience of co-production provide an important example of how user-led research can contribute to the scientific community.”
Members of the SUNshiners reflected positively on the experience, with one commenting: “It was important to get involved in a research project for a few reasons, 1, to have a voice and 2, to prove to people that we can still do things. Just because we have a dementia doesn’t mean we are unable to get involved. Our brains still work to a degree just in a different way. I have enjoyed being part of the project and working as part of a team.”
