Medical decision-making capacity (MDC) is known to decline in individuals with Alzheimer's disease (AD). The vignette method uses hypothetical information as a prerequisite for measuring the capacity to make well-informed decisions to clinical trials. Our aim was to investigate if adapted vignettes can help individuals with mild AD to assimilate information, make decisions and express them in an understandable way, compared to corresponding decisions based on linguistically more demanding vignettes, as measured by the Swedish Linguistic Instrument for Medical Decision-making (LIMD). Two vignettes from LIMD were altered linguistically with the aim to facilitate understanding for individuals with AD. An experimental within-subject design was used to study the influence on MDC of readability (original/adapted vignettes) and content (two different clinical trials). We included 24 patients with mild AD in this prospective study, which read all four vignettes along with a few other tests. This allowed us to investigate the association between MDC and cognitive function. Adapted vignettes did not yield significant differences regarding MDC as compared with original vignettes using a two-way repeated measures analysis of variance. A difference was found between the two clinical trials where LIMD score was significantly higher for Kidney disease than hypertension vignettes. Our results indicate that adapted vignettes may not improve MDC for individuals with mild AD. MDC was affected by which clinical trial the vignettes regarded, which implies that other factors affecting MDC need to be investigated, like length of text and vocabulary used.
Social participation in out-of-home activities is important for people living with dementia, yet little is known about such participation. The aim of this study was to explore and compare out-of-home participation among people living with dementia in four countries by assessing different types of places of participation visited or no longer visited. A cross-sectional design was used to gather self-reported experiences concerning out-of-home participation among people with mild stage dementia living in Canada ( n = 29), Sweden ( n = 35), Switzerland ( n = 35) and the UK ( n = 64). Interviews were conducted using the Participation in ACTivities and places OUTside the Home for older adults (ACT-OUT) instrument. Participants still visited 16 ( Median) places out of a possible total of 24, and they had abandoned 5 ( Median) places. Neighbourhood was the place most participants still visited, whereas 50% of them had stopped going to a Sports facility, with no significant differences between country samples regarding how many participants had abandoned that place (Fisher’s exact test, p > 0.01). There were significant differences between country samples in the frequency of present participation and abandonment of the Hospital, Dentist’s office, Cemetery, Garden, and Forest (Fisher’s exact test, all p < 0.01). Although the participants still visited a variety of places, they had stopped going to places previously visited, which indicates reductions in participation, posing an inherent risk to well-being. The similarities and differences across samples from the four countries suggest that healthcare services and access to public transport may contribute to the complex interactional process of out-of-home participation for people living with dementia. The findings highlight the need for initiatives targeting specific types of places to support continued participation in society, especially places at a higher risk of abandonment such as places for recreation and physical activity.
There is limited empirical knowledge about how older adults living with dementia enact their social citizenship through out-of-home participation. This study aimed: (a) to investigate out-of-home participation among older adults with and without dementia in four countries and (b) to compare aspects of stability or change in out-of-home participation. Using a cross-sectional design, older adults with mild-to-moderate dementia and without dementia, aged 55 years and over, were interviewed using the Participation in ACTivities and Places OUTside the Home questionnaire in Canada ( n = 58), Sweden ( n = 69), Switzerland ( n = 70), and the United Kingdom ( n = 128). Data were analyzed using descriptive statistics and a two-way analysis of variance. After adjustment for age, diagnosis of dementia and country of residence had significant effects on total out-of-home participation ( p < .01). The results contribute to policies and development of programs to facilitate social citizenship by targeting specific activities and places.
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