Table 3.

The communication of the risk for dementia to cognitively healthy persons.

1	Investigate risk perception and understanding, i.e. educational attainment, intellectual abilities, personality traits (optimism versus pessimism), cognitive bias, mood, expectations, personal situation, preferences, values, risk-taking attitudes, numerical literacy including ability to understand numerical values and probability, preference for numerical format of risk figures, and initial beliefs about risk level including prior real-life experiences.S40
2	Ask why's and what's, i.e. why the person wants to know their risk of dementia, what the person's disease narratives and expectations are, and probe what they know about the pathophysiology and natural history of neurodegenerative diseases and their risk factors. Weigh the potential benefit and harm of disclosing the risk to the individual, the family, and the potential future caregiver, including the potential impact on employment and insurance, and expectations about the process of risk assessment and its actionability. Explore any reason for not wanting to know their dementia risk and take a shared decision on whether or not to continue with risk disclosure.
3	Fill gaps of knowledge with tailored information about the concept of risk, disease risk factors, and neurodegenerative diseases before deciding whether or not to continue the risk communication process.
4	Use plain language, i.e. present focused, well-structured, and logically sequenced information, and reduce or eliminate clinical and statistical jargon.
5	Avoid use of qualitative risk descriptors, e.g. “a high risk”, or “many people”.
6	Present precise risk information, such as frequencies “65 out of 100 individuals like you” or percentages, e.g. “65% of individuals similar to you”. When delivering this information, make sure to use estimates from large and representative cohorts where the key variables of age, gender, education, socio-economic status, and ethnicity are taken into account.
7	Use familiar risk factors to benchmark dementia risk factors, e.g. “the risk for dementia associated with having both amyloid and tau in the brain versus having none is of magnitude similar to the risk of death for lung cancer of smokers versus non-smokers”.
8	Use mixed framing, as order and framing affect risk perception. E.g.: “35 out of 100 individuals like you will develop dementia in 3 years' time [negative framing] and 65 out of 100 individuals like you will not develop dementia in 3 years' time [positive framing]”.
9	Use visual representation of risks, such as bar charts or icon arrays in addition to numerical risks (www.iconarray.com). E.g. use panel A when discussing the 10-year Alzheimer's dementia risk for a 75-year-old woman with neither amyloidosis nor neurodegeneration. The 2 blue and 98 black stick figures denote a risk of 2%.23
	AB
10	Use an incremental risk format for interventions, e.g. by displaying the risk with and without intervention in the same icon array. E.g. use panels A and B when discussing the 10-year Alzheimer's dementia risk for a 75-year-old woman with amyloidosis and neurodegeneration. The 2 blue stick figures denote the baseline risk (2%), the 19 red ones the incremental risk associated with amyloidosis and neurodegeneration, amounting to a global risk of 21%.23
11	Draw attention to the risk time interval, e.g. “this graph displays the risk in the next 5 years and this other the risk over your entire lifetime”
12	Present absolute risks instead of relative, e.g. “50% of people with one copy of the ε4 variant of APOE allele will develop dementia in their lifetime compared to 20% for people with no ε4”.
13	Communicate APOE and amyloid risks with the same format as for lifestyle risks, e.g. emphasize that APOE-ε4 and amyloid are neither necessary nor sufficient to develop cognitive impairment and dementia.
14	Consider post-communication psychological support. E.g. persons homozygotes for the ε4 allele of APOE, whose lifetime risk of developing Alzheimer's dementia is remarkably high.S41

References cited in the table can be found in the Supplementary material.

Adapted from Visser et al. (2021).²⁴