Table 1 An overview of guidelines and recommendations on disclosure processes and genetic and non-genetic predictive testing
Guidelines/ Recommendations on | Countries | |||||
|---|---|---|---|---|---|---|
The US | Canada | Germany | ||||
Type | Content | Type | Content | Type | Content | |
Disclosure of Dementia Diagnosis | Recommendations | How to disclose a diagnosis of dementia Disclosing to the tested person and to the family member Information on support, disease, treatment, care Counseling as a multi-professional task | Recommendations [Guidelines] | Disclosing to the tested person and to the family member Information on support, disease, treatment, care Diagnosis and management is the responsibility of primary health care | Guidelines | Information on support, disease, treatment, care Attention to the changing needs of the tested person and family caregivers Counseling as a multi-professional task |
Disclosure of MCI Diagnosis | Guidelines | No specific information Importance of counseling (tested individuals and family) on lack of proven dietary or pharmacologic means, uncertainty of diagnosis, long-term planning | Recommendations [Guidelines] | No specific information Importance of counseling (tested individuals) on life planning and healthy lifestyle | Guidelines & Recommendations | No specific information Counseling with family members Input by Stakeholders Conf. to improve guidelines [Counseling should be multidisciplinary] |
Use of Biomarkers/Predictive Tests – Risk Assessment | Guidelines | Not recommended for clinical diagnosis Individuals with MCI should be monitored If person with MCI asks for risk assessment, physician can direct families and the person to research centers Physician should inform the individuals on scientific limits of tests | Recommendations [Guidelines] | Not recommended for clinical diagnosis Individuals with MCI should be monitored | Guidelines | Not recommended for clinical diagnosis If person with MCI asks for risk assessment, physician can direct families and the person to research centers Physician should inform the individuals on scientific limits of tests, possibilities and treatment options Handling of biomarkers is left to physicians |
Predictive Testing (Genetic) | Guidelines & Recommendations | Not recommended for asymptomatic individuals Disclosing APOE: respect for privacy and confidentiality Recommended for persons with family history & early onset symptoms Disclosing to symptomatic individuals with a family member | Recommendations [Guidelines] | Not recommended for asymptomatic individuals, but they can be directed to advocacy organizations For asymptomatic individuals with family history cognitive assessment & regular follow-up should be indicated (Physician should direct the individuals to a genetic clinic) | Guidelines & Recommendations | Not recommended for asymptomatic individuals & with subjective cognitive decline Recommended for asymptomatic individuals with family history & early onset symptoms (Counseling required) APOE is not recommended for late onset AD |