AbstractDementia is a progressive irreversible neurocognitive disease that affects millions worldwide with an expected increase in persons effected the next decade. There is currently no cure for dementia, however a timely diagnosis may allow those who live with dementia or care for those who live with dementia time to seek support, gain community and medical resources, and increase the quality of life for the person with dementia (PWD) as well as their caregivers. Existing studies demonstrate multiple barriers that exist to seeking and obtaining a dementia diagnosis. The objective of this study is to identify the barriers to obtaining a dementia diagnosis from the perspective of the caregiver.
Methods: A qualitative phenomenology study conducted through semi-structured interviews of caregivers to PWD sourced through snowball sampling and support groups.
Results: Eight common barriers to obtaining a dementia diagnosis were identified: Denial by the PWD (85.6%), normalization of symptoms (42.9%), issues accessing medical care (42.8%), denial by extended family (25.8%), dementia symptoms masked by other medical issues (28.5%), fear of PWD’s reactions (28.5%), lack of confidence in the medical diagnosis (28.5%), and being unaware of changes in the PWD (14.3%).
Conclusion: Despite the small number of participants, most of the participants (71.4%) stated that an earlier diagnosis would have benefited them or the PWD to some degree. Additional studies are needed to target the highest yielding barriers in order to implement multifaceted interventions aimed at reducing such barriers to facilitate more timely diagnoses.
