Is the Invisibility of Dementia a Super-Power or a Curse? A Reflection on the SUNshiners' Questionnaire into the Public Understanding of Dementia as an Invisible Disability: A User-Led Research Project.

The SUNshiners group includes people in the early stages of dementia with an interest in dementia activism and research. The group found that despite the growing awareness of invisible disabilities, there is very limited research into the pros and cons of the invisibility of dementia. Our paper explores the SUNshiners research which stemmed from varied individual experiences of disclosing diagnoses. The group designed and developed a short survey to explore what the public knew about dementia and what they thought about the invisibility of dementia. A mixture of open- and closed-ended questions were 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 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; and that people living with dementia do not automatically require a consistent, regular carer. Common themes from the open-ended answers included capacity, severity of dementia, and access to support. The findings support the disclosure of dementia diagnosis; however, more action is needed to tackle stigmatised views, particularly as the SUNshiners felt that people do not have enough dementia education to support a positive disclosure experience. They shared their experiences of the group and the project's benefits, but also the losses they have faced. Our paper aims to be as accessible as possible.

Validity of self-reported dietary intake at school meals by American Indian children: the Pathways Study.

OBJECTIVE: To examine the validity of a modified diet record-assisted 24-hour recall in third-grade (8 to 10 years old) American Indian children. DESIGN: The children were trained to record their food intake using diet records, and then they recalled their 24-hour food intakes, using the diet records as memory prompts, during interviews by trained staff using the Minnesota Nutrition Data System (NDS; version 2.6, 1993, Food database version 8A, Nutrient database version 23; Nutrition Coordinating Center, University of Minnesota, Minneapolis). The modified method added training in portion size estimation. Direct observation of the children's intakes during school meals was used to validate the accuracy of their self-reported recalls. SUBJECTS: Eighty third-grade children recruited from schools from four of the American Indian Nations participating in the Pathways Study. Statistical analyses performed Pearson correlations were used for nutrient level data. A mixed regression model (PROC MIXED), with no other fixed effects and site as a random effect, was used to test the null hypothesis that the difference between recalled and observed intakes was zero (H(o): beta(o)=0). Food intake data were obtained from the Nutrition Data System Record Reports. RESULTS: There were no significant differences between recalled and observed energy intakes for the school meals combined or for either meal individually. Percentages of energy intake from fat, protein, and carbohydrate from recalls were not significantly different from those observed for the combined school meals. Pearson correlations for energy and energy-providing nutrients ranged from 0.52 to 0.86 for both meals, from 0.55 to 0.86 for school lunch, and from 0.61 to 0.86 for school breakfast. Agreement between recalled and observed food items was 75%. Children recalled 57% of food quantities within +/-10% of observed quantities. CONCLUSIONS: At the group level, American Indian children were able to accurately report the macronutrient proportions of their total energy intake, and their reporting of total energy intake (+13% of criterion) compares favorably with that of other ethnic groups of children of similar age. They were able to accurately recall the majority of foods that they were independently observed consuming during school meals.