Care in a “no man's land”: perspectives of healthcare professionals on post-diagnostic care for people with vascular cognitive impairment and their caregivers – a focus group study.

Abstract

Introduction: Care for people with vascular cognitive impairment (VCI), like vascular dementia or post-stroke cognitive impairment, is provided by various healthcare professionals. People with VCI present in different settings like (acute) neurology, rehabilitation and dementia care, all with their own guidelines and workflow. We explored experiences and perspectives of healthcare professionals on care provision, organization and collaboration regarding care for people with VCI. Methods: We performed a qualitative focus group study in regions across the Netherlands. Focus groups were divided in three types: (i) primary care, (ii) secondary care and (iii) mixed focus groups with healthcare professionals from both settings. We included forty healthcare professionals across seven focus groups, including medical specialists, elderly care physicians, general practitioners, nurses, paramedics and case managers in dementia care. Inclusion ended when we reached thematic saturation, meaning new data did not provide additional (sub-)themes. Focus groups were audiotaped and transcribed verbatim. Transcripts were iteratively coded, recoded, analyzed and grouped into themes according to the inductive thematic analysis method by Braun & Clarke. Results: Three themes were identified. An overarching theme was “Knowledge and awareness of VCI.” Participants stated that the general public as well as healthcare professionals had insufficient knowledge of VCI. They agreed that awareness of the condition was a prerequisite for adequate care for people with VCI. The second theme was “Specific care.” Participants noted a lack of differentiation in current VCI care, while specific recommendations are needed for typical symptoms and fluctuations in functioning. Participants also highlighted the need to unburden informal caregivers, who struggle with symptoms like apathy or uncertainty of the disease course, described by one participant as a “no man's land”. The third theme was “Integrated care.” Current care for VCI was perceived as highly fragmented: various professionals provided a specific part, but a central lead or coordinator was often lacking. Participants proposed an integrated and transmural VCI-network. Discussion: More specific and integrated care is needed to accommodate people with VCI and informal caregivers, combining expertise from dementia and rehabilitation settings. Knowledge and awareness of VCI should be improved by providing (psycho-)education to professionals and the public.