People Living with a Dementia Diagnosis with No Eldercare at all:Who Are They?

Dementia is a non-curable disease that progressively affects people’s ability to handle their everyday life. Still, previous Swedish research found that many people living with dementia (PlwD) do not use any eldercare. In this study, we investigated the association between not using eldercare services and key social background factors: years with dementia, hospital care, and country of birth for PlwD. We identified all people aged 65+ diagnosed with dementia between January 2006 and March 2015 (n = 43,372) using secondary data analysis of information taken from multiple Swedish nationwide registers. Results showed that not using eldercare was more common among younger age groups and men. The likelihood of having no eldercare was three times higher for those cohabiting; notably, almost a fifth of the PlwD who had the diagnosis for four years or more did not have eldercare at all. Finally, people born outside Europe used eldercare less than persons born in Sweden. Since the public dementia policy in Sweden is basically geared toward PlwD in a later stage and primarily in residential care, there has been almost no policy development around the needs and rights of PlwD in their homes. This study provides a ground for reconsidering dementia policy regardless of the ethnic and cultural backgrounds of PlwD.</p

Patterns of long-term care utilization during the last five years of life among Swedish older adults with and without dementia

AimsThe aims of this study were to compare the patterns of long-term care (LTC) use (no care, homecare, residential care) among people with and without dementia aged 70+ in Sweden during their last five years of life and its association with sociodemographic factors (age, gender, education, cohabitation status) and time with a dementia diagnosis.MethodsThis retrospective cohort study included all people who died in November 2019 aged 70 years and older (n = 6294) derived from several national registers. A multinomial logistic regression was conducted to identify which sociodemographic factors predicted the patterns of LTC use.ResultsResults showed that the time with a dementia diagnosis and cohabitation status were important predictors that influence the patterns of LTC use during the last five years of life. Nearly three-quarters of people living with dementia (PlwD) used residential care during the last five years of life. PlwD were more likely to reside in residential care close to death. Women who lived alone, with or without dementia, used residential care to a higher degree compared to married or cohabiting women.ConclusionsAmong people without a dementia diagnosis, as well as those who were newly diagnosed, it was common to have no LTC at all, or use LTC only for a brief period close to death. During the last five years of life, PlwD and those living alone more often entered LTC early and used residential care for a longer time compared to people without dementia and people living alone, respectively

A list of tools is NOT enough! Professionals’ advice on how to implement a Core Outcome Set in practice

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Cutting Brussels sprouts: Collaboration involving persons with dementia

How people with dementia collaborate with other people is an area in need of more research and conceptualizations. Collaboration introduces a number of new possibilities and demands concerning cognitive and linguistic abilities and it is suggested that a theoretical framework that emphasize that cognitive resources are not exclusively individual, but are part of cognitive and communicative context. In this article focus is on joint activities and their collaborative organization is analyzed using an example involving persons with dementia working together with staff preparing a meal. The analysis shows that persons with dementia are able to collaborate in fairly advanced activities if they are supported in such a way that they can make use of the cognitive and linguistic resources of others, in particular cognitive functions having to do with planning and execution of actions. The organization of artifacts like kitchen tools can function as an external memory support. The results support a theoretical framework that help to understand what people can do together rather than focus on individual abilities. The results also indicate that is possible to learn how to organize collaboration involving persons with dementia by understanding how other persons abilities as well as artifacts can be used as external resources for support of cognitive and linguistic abilities.