Patient and caregiver perspectives on a tool to identify undiagnosed dementia: A qualitative study

Abstract

BACKGROUND Early detection of dementia may improve patient care and quality of life, yet as many as half of patients are undiagnosed. Electronic health record (EHR) data could potentially be used to help to identify patients at risk of having undiagnosed dementia who could be targeted for outreach and assessment, but acceptability to patients and caregivers is unknown. METHOD We conducted five focus groups at Kaiser Permanente Washington, an integrated healthcare system in Washington State, to explore feelings about timing of dementia diagnosis, use of EHR-33 based tools to predict risk of undiagnosed dementia, and communication about risk. Two team members analyzed transcripts using inductive thematic coding. RESULTS Participant groups included: patients with dementia or mild cognitive impairment, patients with neither diagnosis, and caregivers. People who were non-white or Hispanic were oversampled. Forty patients and caregivers (63% women; 59% non-white/Hispanic) participated in focus 39 groups. Participants supported early diagnosis, describing benefits such as time to adjust to the disease, plan, involve caregivers, and identify resources. They also acknowledged the possible psychosocial toll of receiving the diagnosis. Participants also supported use of an EHR-based tool, but some worried about accuracy and privacy. Participants emphasized that information about dementia risk should be communicated thoughtfully by a trusted provider and should include advice about prognosis, treatment options and other resources. CONCLUSION Overall, patients and caregivers supported using EHR-based tools to help identify patients at risk of having undiagnosed dementia. Such tools must be implemented carefully to address concerns and ensure patients and caregivers are adequately supported.

People with HIV and healthcare workers views on screening for cognitive impairment in people with HIV: A qualitative study

“…Similar findings have been reported in other qualitative studies evaluating undiagnosed CI and dementia in the general population, and studies regarding other ageing‐related morbidities such as frailty among PWH [13]. Palazzo et al [12] found that older adults broadly support an early diagnosis of CI, perceiving the benefits to include time to adjust and plan for the future and to identify resources to assist in clinical management. Additionally, in their qualitative work, participants emphasized the need for thoughtful communication and that a conversation on CI should include advice on prognosis, treatment and resources if CI or dementia were diagnosed.…”

“…Palazzo et al [12] found that older adults broadly support an early diagnosis of CI, perceiving the benefits to include time to adjust and plan for the future and to identify resources to assist in clinical management. Additionally, in their qualitative work, participants emphasized the need for thoughtful communication and that a conversation on CI should include advice on prognosis, treatment and resources if CI or dementia were diagnosed.…”

“…Studies in the general population suggest that people want to know early if they have CI [12]; however, there are no data on preferences for PWH and the views of healthcare workers on this. While other studies report that PWH are concerned about CI [5,13], their preferences regarding screening are unknown.…”