A model for direct support of people with rare dementias, their families and practitioners

Abstract

AbstractRare Dementia Support (RDS) is a UK‐based collaborative service led by the UCL Dementia Research Centre, which aims to empower, guide and inform people living with a rare dementia diagnosis and those who care about them. RDS covers familial Alzheimer’s disease (FAD), frontotemporal dementia (FTD), familial frontotemporal dementia (fFTD), posterior cortical atrophy (PCA), primary progressive aphasia (PPA), Lewy body dementia (LBD) and young‐onset Alzheimer’s disease (YOAD). Following self‐referrals and clinical referrals from memory services and specialist neurology clinics across the UK, we provide one‐to‐one support and facilitate regular opportunities for members to meet each other and the team, through large and small support groups, themed programmes and regional support groups.We will describe the practices of the one‐to‐one Direct Support Team, which provides free information, advice and support from pre‐diagnosis navigation through to post‐bereavement support. This specialist emotional and practical support encompasses compassionate listening; solution focussed outcomes (to complement the diagnosis, treatment and monitoring); helping people to understand and adapt to their condition; empowering people to use their strengths to live fulfilled lives; designing strategies and interventions to manage complex situations (including issues of safeguarding, deprivation of liberty, etc); legal rights and financial support; and supporting transitions into later stages and end of life.We will also relate the practices of direct support to the broader principles of RDS as a whole (see Figure 1), including the implications of never discharging anyone from our service, and balancing person‐centred and disease‐specific approaches (the importance of knowing which disease each person has, and what person the disease has).An evaluation of the service will be presented, including characterisation of the current 4797 members, plus data from individual support consultations in 2022 (N = 1449) relating outcomes to personal (social connectedness, wellbeing, knowledge of condition and services), disease (diagnosis, severity) and service (support usage, intensity of discussion) factors.We will conclude by discussing existing examples of and new opportunities for partnership working – with local, national and international charities, clinical services, academic institutions and funding organisations – to improve access to specialist support for those with atypical, inherited and young onset dementias.