Out of sight, out of mind: a qualitative study of visual impairment and dementia from three perspectives

Background: Dementia and visual impairment are among the most common medical conditions in later life. Almost nothing is known about the experiences and needs of older adults with both conditions. Method: In this qualitative study using in-depth individual interviews, multiple perspectives were sought through a case-study approach. Fifty-two interviews were conducted: 17 with older adults with visual impairment and dementia, 17 with family caregivers, and 18 with care professionals. Results: Impaired memory and a lack of visual cues created profound disorientation and distress, which could be manifested in disruptive behavior. Visual hallucinations compounded older adults' disorientation, and caregivers were uncertain about how to manage them. Visual impairments reduced the ability of older adults to perform certain activities safely, while dementia impaired their ability to assess the risks accurately. Concerns about safety prompted family members to limit their relatives' activities even in early stages of dementia. Low-vision services perceived themselves to be ill equipped to manage dementia-related needs, while visual needs were accorded a low priority by dementia services. A lack of joint working by the two services led to an overcautious approach. Conclusions: The research identified considerable unmet needs and opportunities to improve care. The provision of clear verbal communication and optimized visual inputs is likely to reduce disorientation, distress and agitated behavior, while one-to-one contact is needed to overcome feelings of isolation. Family caregivers require additional respite services and advice on managing hallucinations. Increased sharing of information and skills between mental health and low-vision professionals would help maximize older adults' independence.