Carers’ recognition of concurrent visual impairment in dementia

Background 40–60% of people with dementia live with visual impairment. Those with mild-moderate dementia reliably report reduced vision-related quality of life across several visual domains with associated effects on vision-related social functioning. Despite the marked impact on concurrent dementia and visual impairment, no studies have investigated whether the impact of visual impairment on the lived experiences of people with dementia is recognised by their carers. Objective The present study investigated whether: (1) problems related to vision and vision-related quality of life reported by people with dementia are recognised and acknowledged by their carers and (2) whether currently validated vision-related quality of life measures for mild-moderate dementia are appropriate as proxy measures of vision-related quality of life in this group. Methods The 25-item National Eye Institute Visual Function Questionnaire (NEI VFQ-25) and the Visual Activities Questionnaire (VAQ) were completed by 48 participants with mild-moderate dementia and 48 carers. Participants with dementia completed the questionnaires based on their own experiences and carers completed them by proxy (i.e., on behalf of the person with dementia for whom they cared). Results There was good agreement between people with dementia and their carers on both measures overall and on the majority of subscales, with no significant differences between carer and dementia reports. Conclusions This provides further support that people with mild-moderate dementia can accurately report their visual experiences, and that carers could provide a valid proxy of the existence and impact of visual impairment on people living with dementia.<p></p>