What does the word ‘dementia’ mean to three different groups of people?
In the last four months I have conducted again the same survey that I ran online in November 2022 – What do you understand by the word Dementia? – with 200 respondents: I want to find out if specific groups of people would reveal the same confusion in knowledge and understanding of the word ‘dementia’ as the original 200 people.
The questionnaire is a mix of 11 questions and statements. In the analysis they are referred to with a Q for question. Some of the answers required are multiple-choice: yes/no/I don’t know. Others are choice of terms (‘dementia’ or Alzheimer’s) or phrases (e.g. the word ‘dementia is offensive / convenient / out of date with modern knowledge of the brain) and so on. Analyses of the responses suggest that nobody had difficulty understanding the questions.
The 11 questions were designed with hidden consistency. For example, question 1 asks if ‘dementia is a disease of the brain’, and question 2 asks if ‘Alzheimer’s is a disease of the brain. Clarity of knowledge and understanding is revealed if there is consistency in the answers, that is Q 1 should have a NO answer and Q 2 a YES answer, because dementia is not a disease but Alzheimer’s is.
The two additional groups of respondents are: 7 people who work in a Dementia Café (December 2022) and 54 sixth form students (February 2023).
Taken together the results to the survey reveal wide-spread confusion, with just small differences here and there. For example:
- Responses to Q1 (dementia is a disease of the brain) and Q2 (Alzheimer’s is a disease of the brain): three discrete groups of people surveyed separately gave practically the same responses, suggesting an almost unanimous knowledge and understanding that dementia is a discrete disease and Alzheimer’s is also a discrete disease; the percentage of respondents that said YES to Q1 is as follows: online respondents 99%, Dementia Café 100%, sixth form students 96%. For Q2 online respondents 97%, Dementia Café 100, sixth form students 88%.
This of course is wrong knowledge and wrong understanding. Alzheimer’s is a disease of the brain which presents symptoms that the professional world calls ‘dementia’. Dementia is not a disease. Dementia is a syndrome. A syndrome is a set of symptoms which can suggest any number of different diseases of the brain.
- Responses to Q7 (The word dementia is an umbrella term which describes symptoms and behaviours that may be common to these diseases of the brain) underlines this incorrect knowledge already gleaned from responses to Q1 and Q2: 89% of online respondents think that dementia is an umbrella term of common symptoms, 86% of Dementia Café staff. But dementia cannot be a disease in its own right and, at the same time, an umbrella term for several symptoms of more than on brain disease.
Here appears one inter group difference: 53% of the students agree that dementia is an umbrella term – many fewer that the other two groups; and many more of the students don’t know the answer to this question: 30% students said ‘I don’t know’, 14% of Dementia Café staff and 9% of online respondents said ‘I don’t know’.
One very important and unexpected aspect of the overall results is the number of ‘I do not know’ strewn across the questionnaire, after the almost unanimous answers to questions one and two.
It is an important aspect because it reveals that the information put out by professional bodies is not clear or precise enough for people to make informed opinions or to attain correct knowledge about health issues that permeate our modern life.
A few examples of confusion and uncertainty can be interpreted in the responses by:
- 26% of the students (that’s over ¼ of the cohort of student respondents) as to whether the word ‘dementia’ describes the Alzheimer’s disease as well as dementia (Q3);
- large numbers in all three groups do not know (Q6) if the word ‘dementia’ accurately describes diseases of the brain (mentioned in questions four and five): 36% online, 43% Dementia Café and 52% of the students;
- 31% of online respondents and 43% of students are unable to say – they ‘do not know’ – whether in their opinion the word dementia should be dropped from our vocabulary in this context – in answer to Q9 (We should stop using the word dementia when talking about these diseases of the brain.
Question 9 is a key question to my survey. All previous questions are leading to this one. Of great interest are the numbers that said YES, we should: 19% of the online group, 43% of the Dementia Café and 13% of the students. Why did the Dementia Café staff outnumber the other two groups by a very large margin? By + 24% over the online group and by 30% over the students?
A speculative guess is that they received some training in order to qualify as a Dementia Café whilst the other groups may be drawing on information derived from the press and other sources such as friends and family.
These are interesting results. I am conducting fine grain analyses which I will report in my next post.