Background and Aims

Vascular cognitive impairment (VCI) is a devastating condition that is both a risk factor for and a sequelae of stroke. The experiences of people with VCI and their caregivers across the continuum of care are not well defined. In collaboration with People with Lived Experience (PWLE), a VCI journey map was created to capture the lived experiences and critical needs from symptom onset to diagnosis, to management and living with VCI.

Methods

Data and inputs were sought using several qualitative approaches, including: an environmental scan, with a structured literature review of research on people’s experiences with VCI, review of existing journey maps, focus groups and consultations with PWLE and caregivers to PWLE with VCI. Qualitative theme analysis and validation with PWLE and health professionals were conducted.

Results

Distinct themes and stages of a VCI journey emerged. Stages began with symptom onset, through diagnosis, management, and living with VCI. Themes included symptoms, emotions and mental health, and navigating care. Unique elements were identified and plotted along the Map such as: ongoing adaptation to changing needs, grieving losses and changes and lack of age-appropriate services and information.

Conclusions

There are knowledge gaps related to the patient and caregiver experience of VCI; however, our Journey Map indicates that PWLE and caregivers identify distinct needs throughout the VCI journey. The Journey Map can inform and provide support and facilitate self-management and system navigation for PWLE and caregivers and foster person-centered care among healthcare professionals.

Further investigation of PWLE/caregiver needs, and strategies to support identified needs is needed.