Martins-Caulfield Josh, Mehdipanah Roshanak, Briceño Emily M, Chang Wen, Heeringa Steven G, Gonzales Xavier F, Levine Deborah A, Langa Kenneth M, Zahuranec Darin B, Garcia Nelda, Morgenstern Lewis B
Department of Neurology, University of Michigan Medical School, Ann Arbor, MI, USA.
Department of Health Behavior and Health Education, University of Michigan School of Public Health, Ann Arbor, MI, USA.
J Gen Intern Med. 2025 Jan 14. doi: 10.1007/s11606-024-09333-1.
Previous reports suggest patient and caregiver lack of awareness of dementia. Little is known about how this varies by ethnicity and how informal (family) caregiver burden is associated with knowing a dementia diagnosis.
To investigate whether participants with probable dementia were aware of a diagnosis provided by a physician and how this differed among Mexican American and non-Hispanic White participants; whether having a primary care physician was associated with dementia diagnosis unawareness; and the association of dementia diagnosis unawareness with caregiver burden.
This was a population-based cohort study in Nueces County, Texas. Participants who scored less than 20 on the Montreal Cognitive Assessment (MoCA) were classified as having probable dementia. Diagnosis unawareness was defined as participants with probable dementia who had not been told that diagnosis by a healthcare provider. Logistic regression models examined the association of ethnicity and dementia diagnosis unawareness. A negative binomial regression was used to assess the association of dementia diagnosis unawareness and caregiver burden.
Eighty-one percent of eligible participants were not aware of a dementia diagnosis. Mexican American participants (MAP) were more likely to be unaware of a diagnosis (85%, 95% CI 81-89%) than non-Hispanic white participants (NHWP) (68%, 95% CI 58-75%). Only 6.6% of the participants with probable dementia had no primary care provider, with no observed association between diagnosis unawareness and lack of primary care. Diagnosis unawareness was not associated with caregiver burden (IRR = 0.93, 95% CI 0.77-1.14) but was associated with lower MoCA score (IRR = 0.98, 95% CI 0.96-1.00) and greater physical impairment (IRR = 1.06, 95% CI 1.03-1.10).
Dementia diagnosis unawareness was very high in this community. MAPs are more likely to be unaware of a diagnosis than NHWPs. Lack of access to primary care and caregiver burden were not associated with dementia diagnosis unawareness.
Study registered at clinicaltrials.gov NCT03403257.
既往报告显示患者及照料者对痴呆症缺乏认知。关于这种情况如何因种族而异，以及非正式（家庭）照料者负担与知晓痴呆症诊断之间的关系，目前所知甚少。
调查可能患有痴呆症的参与者是否知晓医生给出的诊断，以及墨西哥裔美国人和非西班牙裔白人参与者之间的差异；拥有初级保健医生是否与不知晓痴呆症诊断有关；以及不知晓痴呆症诊断与照料者负担之间的关联。
这是一项在得克萨斯州努埃塞斯县开展的基于人群的队列研究。蒙特利尔认知评估（MoCA）得分低于20分的参与者被归类为可能患有痴呆症。不知晓诊断被定义为患有可能痴呆症但未被医疗保健提供者告知该诊断的参与者。逻辑回归模型检验了种族与不知晓痴呆症诊断之间的关联。负二项回归用于评估不知晓痴呆症诊断与照料者负担之间的关联。
81%的符合条件的参与者不知晓痴呆症诊断。墨西哥裔美国参与者（MAP）比非西班牙裔白人参与者（NHWP）更有可能不知晓诊断（85%，95%可信区间81 - 89%）（68%，95%可信区间58 - 75%）。只有6.6%的可能患有痴呆症的参与者没有初级保健提供者，未观察到不知晓诊断与缺乏初级保健之间的关联。不知晓诊断与照料者负担无关（发病率比[IRR] = 0.93，95%可信区间0.77 - 1.14），但与较低的MoCA得分（IRR = 0.98，95%可信区间0.96 - 1.00）和更严重的身体损伤（IRR = 1.06，95%可信区间1.03 - 1.10）有关。
该社区中不知晓痴呆症诊断的情况非常普遍。墨西哥裔美国人比非西班牙裔白人更有可能不知晓诊断。无法获得初级保健和照料者负担与不知晓痴呆症诊断无关。
该研究已在clinicaltrials.gov上注册，注册号为NCT03403257。
