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

Abstract

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.