Subjective cognitive decline (SCD) designates a self-reported cognitive decline despite preserved cognitive abilities. This study aims to explore, in older adults with SCD, the association between intensity of self-reported cognitive complaint and psychological factors including Young's early maladaptive schemas (EMSs) (i.e. enduring cognitive structures giving rise to beliefs about oneself and the world), as well as depression and anxiety.

Seventy-six subjects (69.22 years ± 6.1) with intact cognitive functioning were recruited through an advertisement offering free participation in an intervention on SCD. After undergoing a neuropsychological examination (including global cognition (MMSE) and episodic memory (FCSRT)) and a semi-structured interview to assess depressive symptoms (MADRS), they completed a set of online self-reported questionnaires on SCD (McNair questionnaire), Young's EMSs (YSQ-short form), depression (HADS-D), and anxiety (HADS-A and trait-STAI-Y).

The McNair score did not correlate with the neuropsychological scores. Instead, it was highly (r > 0.400; p < 0.005) correlated with trait anxiety and three EMSs belonging to the “Impaired autonomy and performance” domain: Dependence/incompetence, Failure to achieve and Vulnerability to harm or illness. Our final regression model comprising depression, anxiety, and these three EMSs as predictors (while controlling for age, gender, and objective cognition) accounted for 38.5% of the observed variance in SCD intensity.

The level of cognitive complaint is significantly associated with Young's EMSs in the category of “Impaired autonomy and performance”. We assume that SCD may primarily be driven by profound long-term inner beliefs about oneself that do not specifically refer to self-perceived memory abilities.

Young Onset Dementia (YOD), defined by first symptoms of cognitive or behavioral decline occurring before the age of 65 years, is relatively rare compared to dementia of later onset, but it is associated with diagnostic difficulty and heavy burden on affected individuals and their informal carers. Existing health and social care structures rarely meet the needs of YOD patients. Internet-based interventions are a novel format of delivering health-related education, counseling, and support to this vulnerable yet underserved group.

The RHAPSODY (Research to Assess Policies and Strategies for Dementia in the Young) project is a European initiative to improve care for people with YOD by providing an internet-based information and skill-building program for family carers. The e-learning program focuses on managing problem behaviors, dealing with role change, obtaining support, and looking after oneself. It will be evaluated in a pilot study in three countries using a randomized unblinded design with a wait-list control group. Participants will be informal carers of people with dementia in Alzheimer's disease or behavioral-variant Frontotemporal degeneration with an onset before the age of 65 years. The primary outcome will be caregiving self-efficacy after 6 weeks of program use. As secondary outcomes, caregivers’ stress and burden, carer health-related quality of life, caring-related knowledge, patient problem behaviors, and user satisfaction will be assessed. Program utilization will be monitored and a health-economic evaluation will also be performed.

The RHAPSODY project will add to the evidence on the potential and limitations of a conveniently accessible, user-friendly, and comprehensive internet-based intervention as an alternative for traditional forms of counseling and support in healthcare, aiming to optimize care and support for people with YOD and their informal caregivers.