Patient and caregiver perspectives on a tool to increase recognition of undiagnosed dementia: a qualitative study

Abstract

Background Early detection of dementia may improve patient care and quality of life, yet up to half of people with dementia are undiagnosed. Electronic health record (EHR) data could be used to help identify individuals at risk of having undiagnosed dementia for outreach and assessment, but acceptability to people with dementia and caregivers is unknown. Methods We conducted five focus groups at Kaiser Permanente Washington (KPWA), an integrated healthcare system in Washington State, to explore people’s feelings about timing of dementia diagnosis, use of EHR-based tools to predict risk of undiagnosed dementia, and communication about risk. We recruited people enrolled in KPWA who had dementia or mild cognitive impairment, people enrolled in KPWA who had neither diagnosis, and caregivers (i.e., loved ones of people with dementia who assist with various tasks of daily life). People who were non-white or Hispanic were oversampled. Two team members analyzed transcripts using thematic coding. Results Forty people (63% women; 59% non-white or Hispanic) participated in the focus groups. Themes that arose included: perceived pros and cons of early dementia diagnosis; questions and concerns about a potential tool to assess risk of undiagnosed dementia; and preferences related to patient-provider conversations disclosing that a person was at high risk to have undiagnosed dementia. 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 supported use of an EHR-based tool, but some people worried about accuracy and privacy. Participants emphasized that information about risk of undiagnosed dementia should be communicated thoughtfully by a trusted provider and that the conversation should include advice about prognosis, treatment options and other resources when a new dementia diagnosis was made. Conclusion People with dementia or mild cognitive impairment, people with neither diagnosis, and caregivers of people with dementia supported using EHR-based tools to help identify individuals at risk of having undiagnosed dementia. Such tools must be implemented carefully to address concerns and ensure that people living with dementia and their caregivers are adequately supported.

Older Adults’ Perspectives on Screening for Cognitive Impairment Following Critical Illness: Pre-Implementation Qualitative Study

“…This finding is similar to what has been reported in prior qualitative work evaluating undiagnosed cognitive impairment and dementia in the general population and those with medical comorbidities. Palazzo et al ( 30 ) found that older adults generally support an early diagnosis of cognitive impairment, describing benefits including time to adjust and plan for the future, involve caregivers or family in their care, and identify resources. In their qualitative work, participants emphasized the importance of thoughtful communication by a trusted provider and that a conversation about undiagnosed cognitive impairment should include advice about prognosis, treatment, and resources if cognitive impairment or dementia was diagnosed.…”

A framework for addressing Alzheimer's disease: Without a frame, the work has no aim

“…Application of algorithms in electronic health records may potentially identify cognitive decline earlier for those at risk and in need of longitudinal assessment, 28 and such an approach may be acceptable to many patients and caregivers. 29 The second node in the healthcare system patient flow category is timely and accurate diagnosis. The theme for this node is improved timeliness and accuracy of AD diagnosis, and the example metric concept is the proportion of diagnoses made in early AD with appropriate biomarker components.…”

“…The ability to detect cognitive decline at earlier stages may necessitate changes to incorporate regular use of brief cognitive assessments by primary care personnel (physicians, nurse practitioners), in other settings (pharmacy, ophthalmology), and/or through community outreach programs. Application of algorithms in electronic health records may potentially identify cognitive decline earlier for those at risk and in need of longitudinal assessment, 28 and such an approach may be acceptable to many patients and caregivers 29 …”

“At least we finally found out what it was”: Dementia diagnosis in minoritized populations

“…Underdiagnosis of dementia is common across groups 4,5 though certain minoritized populations are more likely to experience missed and/or delayed dementia diagnoses 6–9 . A dementia diagnosis may benefit care partners, as it facilitates a better understanding of the PLWD, more timely identification of reversible conditions, earlier consideration of medications and nonpharmacological interventions, validation of patient/family concerns, and planning current and future care 10–13 …”

“…[6][7][8][9] A dementia diagnosis may benefit care partners, as it facilitates a better understanding of the PLWD, more timely identification of reversible conditions, earlier consideration of medications and nonpharmacological interventions, validation of patient/family concerns, and planning current and future care. [10][11][12][13] Given underdiagnosis and the growing diversity of PLWD, research into barriers and facilitators of dementia diagnoses in minoritized populations is urgent. Prior research found that minoritized groups face individual, provider, and systemic barriers to receiving diagnosis and care for many reasons, including normalization of memory loss as part of aging, stigma surrounding mental illness, clinical visit time constraints, distrust of healthcare providers, and racism/discrimination.…”