But he has no memory loss: Exploring characteristics, functioning & care perspectives in vascular cognitive impairment.

The general aim of this thesis was to provide building blocks for best care practices for people with VCI. In part I, we explored symptoms and functioning and their relationship with CSVD in a geriatric memory clinic population, the Amsterdam Aging Cohort. In chapter 2, we investigated the associations between three symptoms, slowing in walking, thinking and mood (decreased gait speed, decreased processing speed and increased apathy symptoms) and CSVD (white matter hyperintensities (WMH), lacunes and microbleeds). We found that slowing in walking, thinking and mood were associated with each other and with CSVD, especially WMH. We concluded that slowing might be a geriatric syndrome of concurring symptoms that is associated with disruption of the brain’s white-matter networks due to CSVD. In chapter 3, we elaborated on this by studying the associations between WMH and domains of functioning in a holistic approach using multiple linear regression and network analysis. We found that severe WMH is associated with cognitive speed, apathy symptoms, physical functioning, and daily functioning, as expected. However, within a multivariate network, symptoms are more strongly associated with each other than with WMH. This warrants a holistic and symptom-based approach in care and post-diagnostic support. In part II, we used several methods to explore different perspectives on targeted care for people with VCI. In chapter 4, we interviewed people with VCI and their informal caregivers. We found that some of their care needs were similar to general needs of people with cognitive impairment, such as the need to be valued and caregiver role conflicts. Other care needs, such as information need, (lack of) concerns about the future and the need for a decisive professional, were affected by the amount of knowledge people had about VCI and by the symptoms of VCI, such as apathy and having “no memory loss”. The lack of memoryloss was a potential barrier to care utilization, as we noticed “Alzheimerization” (equating dementia to memory loss and Alzheimer’s disease) in the way they talked about their diagnosis. Therefore, tailored information and guided-decision making was recommended for people with VCI and informal caregivers. In chapter 5, we used a focus group design to explore perspectives of healthcare professionals on post-diagnostic care for people with VCI. Professionals highlighted that knowledge and awareness of VCI was a pre-requisite for adequate care in the post-diagnostic phase. Moreover, they highlighted that pre-diagnostic knowledge and awareness was as important for timely detection and diagnosis. Furthermore, they advised a combination of more specific care, recommendations for handling symptoms and needs of informal caregivers, and more integrated care, increasing collaboration and communication between different settings, professionals, and care pathways. Based on these findings, we recommended more education about VCI for all parties involved and for the general public. Furthermore, we advised specific attention for specific symptoms and further integration of stroke and dementia care pathways. In chapter 6, we combined our findings and existing literature into specific recommendations for care for people with VCI. We tested these recommendations with an expert panel in a modified Delphi procedure. This resulted in a list of recommendations across the patient journey, including recommendations on recognition and management of specific symptoms, awareness of care opportunities, collaboration between care pathways and the importance of timely care. Alongside the broad agreement of the panel, some questions were raised about the specificity and feasibility of the statements. Still, we concluded that the expert-agreed statements can provide guidance in striving towards optimal care for people with VCI