Online counselling for family carers of people with young onset dementia: The RHAPSODY-Plus pilot study

Abstract

Objective Compared to late life dementia, Young Onset Dementia (YOD) has its own distinct challenges, including a lack of specialised and age-appropriate support services. Carers of people with YOD experience higher levels of psychological and physical symptoms, and lower quality of life. This study (RHAPSODY-Plus) assessed the acceptability and feasibility of combining RHAPSODY (Research to Assess Policies and Strategies for Dementia in the Young; a web-based information and skill-building programme for carers of people with YOD) with individually tailored support sessions with health professionals (a social worker and a clinical psychologist) provided via online videoconferencing. Methods Participants (n = 20) were informal carers aged over 18 years, who were caring for a person with YOD (either Alzheimer's disease or frontotemporal dementia type). Participants used the RHAPSODY programme for 4 weeks, then attended 2 support sessions. Participants and the health professionals then attended individual feedback sessions. Feedback was collected via open-ended and Likert-style questions. Results The majority of carers rated the RHAPSODY-Plus programme as good to very good, demonstrating a high level of acceptability. Positive feedback about the programme included being able to receive personal advice additionally to the information provided in RHAPSODY. The healthcare professionals also thought the programme was acceptable and beneficial for access to support. Some limitations in the feasibility of videoconferencing included network and technical issues and the loss of non-verbal communication. Conclusions This online pilot study had a high level of acceptability, demonstrating the potential of an individualised multi-modal intervention for carers of people with YOD which offers opportunities to overcome geographical and service access barriers.

Rehabilitation Services for Young-Onset Dementia: Examples from High- and Low–Middle-Income Countries

“…Telehealth involves the use of communications technology (e.g., videocalls) to provide healthcare at a distance [ 100 ] and is increasingly utilised for diagnostic and rehabilitation services in YOD [ 101 , 102 , 103 , 104 , 105 , 106 ]. Telehealth assists in overcoming barriers of geographical distance, an absence of local specialised services (a frequent limitation given the low prevalence of YOD), and travel arrangements to attend frequent clinical appointments (e.g., carers having to take time off).…”