Age-sensitive services for people affected by Young Onset Dementia (YOD): What is the way forward?

Title: A systematic review of age-appropriate services for people diagnosed with Young Onset Dementia (YOD) Background: Literature agrees that post-diagnostic services for people living with Young Onset Dementia (YOD) (diagnosis at age <65) need to be age-appropriate, but there is insufficient evidence of ‘what works’ to inform service design and delivery.Aim: To provide an evidence base of age-appropriate post-diagnostic services and to review the perceived effectiveness of current interventions. Methods: The study had three elements: a preliminary scoping of the evidence on the post diagnosis experience of people with YOD, discussions with Patient and Public Involvement (PPI) contributors living with YOD (n=13) and their caregivers (n=20) in two study sites, and a systematic review of the effectiveness of services for this group. PPI contributors participated in each stage of the review process to ensure that search terms were relevant. Results: Included articles (n=20) discussed 195 study participants (individuals diagnosed with YOD [n=94], caregivers [n=91], and service providers [n=10]. Age-appropriate interventions were perceived as effective if they provided a sense of normalcy, purpose and belonging, facilitated social connectedness, accommodated changing care needs along the disease trajectory and offered continuity. Age-appropriateness included supported employment, supervised volunteering, and assistance with legal and financial issues pertaining to early/medical retirement. However, service continuity was compromised by short-term project-based commissioning and ad-hoc service delivery. Discussion and conclusions: Despite a cumulative narrative around the need for age-appropriate services we found only minimal evidence of dementia care research for individuals diagnosed with YOD. Yet, the costs of YOD are estimated to be double that of caring for people with late onset dementia. There is a need for further research that addresses the costs-of-living with YOD, legal and financial support needs, employment issues and the development of standardised measures for service outcomes.