Personal and Family Perspectives Regarding Neurodegenerative Disorder Risk

It remains unclear how awareness-of and planning-for eventual neurodegenerative disorder (NDD) diagnosis and care is influenced by age, gender, and culture across worldwide societies.

100 participants from eight countries were surveyed targeting 1) opinions about how knowledge of being at risk for an NDD might impact quality-of-life, and 2) how knowing the NDD risk of a parent might impact the participant.

Participants showed strong agreement in their feelings and interest in knowing the NDD risk for both their parents and themselves, but age, gender, and country differences were observed. Openness to assessment of NDD risk for oneself was influenced by age, interest in investigating NDD mitigation strategies were greater in women, willingness to pay out-of-pocket to establish NDD risk differed across countries, and wanting to know a parent's NDD risk was subdued in Germany and Japan. Despite potential anxiety associated with NDD risk disclosure, benefits toward future planning were the primary driver in participants interested in knowing the risk of NDD in themselves or their parents.

Societal communication strategies aimed at public health NDD informational and screening initiatives should be sensitive toward considering population characteristics of age, gender, and country of residence. Younger adults and especially women should be targeted with educational messaging about managing NDD risk.