Alzheimer Europe calls for urgent action to disclose dementia risk in an open, honest, empathetic and compassionate way

In a new position statement, and following engagement with its national members and the European Dementia Carers Working Group (EDCWG), Alzheimer Europe calls for open, honest, empathetic and compassionate disclosure of dementia risk in both research and clinical practice.

Alzheimer’s disease (AD) research has recently shifted its focus towards the development of diagnostic tools for earlier detection and risk prediction of dementia. There has also been increased attention on strategies to keep the brain healthy and reduce modifiable risk factors contributing to the disease's onset and progression. This shift would allow dementia researchers to recruit more suitable participants for clinical trials testing new AD treatments that would hopefully benefit more than just those in the latest stages of the disease.

Within this context, people with no known cognitive problems or in the early stage of AD (i.e. Mild Cognitive Impairment (MCI) due to AD), could have their risk of developing cognitive problems or progressing to AD dementia predicted and estimated as part of the research study in which they participate. These risk assessment tools could be ultimately implemented in clinical practice, where people could be tested for their risk of developing dementia.

Alzheimer Europe notes that although dementia risk prediction is happening in research and may be happening in clinical practice in the near future, very little focus has been on the disclosure of such risk. To address this lack of focus on risk disclosure, Alzheimer Europe developed general and specific recommendations, developed in collaboration with Alzheimer Europe’s national members and the EDCWG. They are grouped as follows:

  • General recommendations when disclosing risk for cognitive impairment to cognitively healthy people, or disclosing risk for AD dementia to people with MCI due to AD.
  • Specific recommendations when disclosing risk for cognitive impairment to cognitively healthy people.
  • Specific recommendations when disclosing the risk for AD dementia to people with a diagnosis of MCI due to AD.

The recommendations are aimed at both clinicians and researchers, as the risk disclosure may happen during someone’s participation in research or as part of a person’s proactive search for their risk status in a clinical practice. Recommendations include:

  • Clinicians should be transparent about the capacity of current therapies and interventions have to create beneficial change and about their limitations. When recommending the adoption of healthy lifestyle choices, clinicians should clarify that the healthiest of lifestyles cannot, unfortunately, guarantee that someone will not experience cognitive impairment or AD dementia.
  • Clinicians should also be transparent about the uncertainty of the clinical progression toward cognitive impairment or AD dementia. Risk prediction for cognitive impairment or AD dementia does not bring certainty or information about the likely course or progression of the disease
  • Clinicians, researchers or counsellors should guide and inform the person on positive actions they can take upon receipt of results, such as positive lifestyle changes, support groups they can join and clinical trials from which they might benefit. Regular appointments should be offered to both monitor the person’s clinical progression and support the person.
  • Clinicians should consider the personal utility that risk prediction for cognitive impairment may have for the individual. Some people may want to use this information to participate in a dementia prevention clinical trial, and/or to prepare themselves and their families for a possible future with AD.
  • Clinicians should also consider personal factors such as age, employment status and their views about available drugs to prevent the development of AD. These factors may contribute to the impact that risk prediction will have on a person’s personal and working life, and how they plan to approach life such as accelerating travel plans, taking on new challenges, or devoting more time to voluntary work
  • If different factors such as time constraints make it unrealistic for clinicians to manage the disclosure process, then other professionals like counsellors should be involved in this process.