In September and October 2022 I had the great honour of hosting focus group discussions with people who have been impacted by dementia in different ways. I hosted three focus groups as part of my ongoing PhD study: one with people with less personal familiarity with dementia, one with people who care or have cared for people with dementia, and one with people with dementia.<\/p>\n\n\n
Lively and interesting discussions were had in all focus groups and I am writing this blog to share with you all some of what we discussed!<\/p>\n\n\n\n
Throughout the different focus groups there were some common themes and these will now be discussed.<\/p>\n\n\n\n
Different preferences for accessing information<\/strong><\/p>\n\n\n\n Accessing information in the media was very individual with some people preferring social media, others TV news and others preferring to get their information about dementia through peers and involvement in research.<\/p>\n\n\n\n “my wife has been diagnosed with Alzheimer\u2019s only in the last two and a half to three years, I tend to find that the information I take hold of more so is from personal information from people that I\u2019m meeting\u201d<\/em><\/p>\nGerry<\/cite><\/blockquote>\n\n\n\n Lack of trust in the media<\/strong><\/p>\n\n\n\n There was a general lack of trust in the media as stories and research is often sensationalised or \u2018clickbait\u2019 with catchy headlines not representing the content of a news item.<\/p>\n\n\n\n \u201cit\u2019s so easy to get confident sounding but rubbish information if you\u2019re not careful”<\/em><\/p>\nHenry<\/cite><\/blockquote>\n\n\n\n Positives of social media<\/strong><\/p>\n\n\n\n Some discussions were had about the usefulness of social media for finding a community and for learning more about dementia.<\/p>\n\n\n\n “I love Twitter, I know it can be a nightmare, but I think… if you\u2019re careful about who you follow, and you follow trusted sources, it’s taught me so much, I\u2019ve found out so much about dementia that expands my experience”<\/em><\/p>\nViolet<\/cite><\/blockquote>\n\n\n\n Filtering information and the importance of hearing from those with lived experience<\/strong><\/p>\n\n\n\n Also that information and news has to be filtered, not only for relevance, but especially if you are trying to stay away from certain themes of reporting. The importance of finding those who had a positive outlook as well as presenting a real lived experience of dementia was often discussed, such as those present in activism and blogging like Wendy Mitchell<\/a>, Gail Gregory<\/a>, Keith Oliver<\/a> and George Rook<\/a>.<\/p>\n\n\n\n “I was choosing what I read because I didn’t want to read all the negative stuff because I was just trying to get into my head at the time what was happening and then I found people that were positive, who were saying there\u2019s a beginning, a middle and an end and people like Wendy Mitchell”<\/em><\/p>\nMichelle<\/cite><\/blockquote>\n\n\n\n The ‘S’ word<\/strong><\/p>\n\n\n\n There was also a common point of contention around terminology used in media reporting on dementia \u2013 the dreaded \u2018S’ word: sufferers. In the focus groups we discussed how infuriating it is that \u2018suffering with dementia\u2019 and \u2018dementia sufferers\u2019 is still used widely despite complaints from those affected by dementia writing in to news outlets about how detrimental and stigmatising it is to use \u2018sufferers\u2019 to generalise all people living with a dementia.<\/p>\n\n\n\n \u201cthey will go through periods of suffering, but generally speaking, we are not sufferers, we’re just people who happen to be living with dementia\u201d<\/em><\/p>\nJulie<\/cite><\/blockquote>\n\n\n\n While some people are indeed struggling with dementia, there are lots of people who are still living full and happy lives, and we should not marginalise either group. The DEEP website have a great guideline for language about dementia, which can be accessed below or by clicking here<\/a>.<\/p>\n\n\n\n\n
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