LAUSR

Objective To explore how community-living people with perceived cognitive impairment or dementia and their next-of-kin perceive functioning and disability in major life domains. Methods Individual interviews guided by the World Health Organization Disability Assessment Schedule (WHODAS 2.0) were conducted with 26 people with perceived cognitive impairment or dementia (age range 38–87 years) and 26 next-of-kin. Qualitative content analysis- and International Classification of Functioning, Disability, and Health (ICF) linking methods were used to analyse the transcripts. The perceived degree of disability in daily functioning was calculated and compared between people with perceived cognitive impairment or dementia and next-of-kin, using a Mann–Whitney U test. Results A total of 38 of 47 (81%) established ICF categories corresponding to WHODAS items and 38 additional International Classification of Functioning, Disability, and Health (ICF) categories describing participants perceived cognitive and physical impairments, activity limitations and participation restrictions in interaction with the environmental factors were confirmed from the transcripts. The perceived disability of people with perceived cognitive impairment or dementia was scored higher by next-of-kin (48%) than by people with perceived cognitive impairment or dementia (16%, p < 0.0001). Conclusion Interviews provided a comprehensive picture of participants’ perceived activity limitations and participation restrictions in the life domains cognition, mobility, self-care, getting along, life activities, and participation. For a better understanding of the impact of cognitive impairment on people’s daily lives, inclusion of the perspective of the next-of-kin and the factors that hinder or facilitate daily living in the community setting is necessary. LAY ABSTRACT Dementia is one of the leading causes of disability in Sweden, and most of the people with dementia and those with perceived cognitive impairment, i.e. persons not diagnosed with dementia, live at home. A comprehensive understanding of their needs is required in order to develop dementia care in the community. The aim of this study was to explore what kind of difficulties community-living people with perceived cognitive impairment or dementia and their next-of-kin perceive in their daily lives. Twenty-six people with perceived cognitive impairment or dementia and their next-of-kin were interviewed in their homes, and the perceived degree of difficulties was compared between the 2 groups. The interviews provided a broad picture of how people with perceived cognitive impairment or dementia and next-of-kin perceive difficulties in their daily lives. The next-of-kin perceived the difficulties as greater than did the persons with dementia. For a better understanding of the impact of dementia on people’s daily lives, inclusion of the perspective of the next-of-kin and the factors that hinder or facilitate daily living in the community setting are necessary.