Project Aim(s): This project aimed to utilize data from the Irish Register and the national ALS service to generate a framework for care for Irish ALS patients based on their clinical phenotype, rate of progression and long term prognosis. The objective was to design, estimate the costs, and measure the benefits of a multifaceted care programme that incorporates the key clinical and prognostic elements of ALS.
Beaumont Hospital Dublin
(i) Using existing data, to characterize the impact of ALS stage, cognitive and behavioural effects in ALS on caregiver burden, and to ascertain the unmet psychological and psychosocial needs of caregivers.
(ii) To provide new data focussing on subjective and objective aspects of caregiver burden that can inform psychologically tailored interventions that enable self-management of carer burden.
Project Aim(s): This project aims to develop and evaluate group-based psychological interventions for caregivers of patients with ALS, where the objective is to reduce anxiety, low mood, and caregiver burden. The overall purpose of this study is to evaluate the effectiveness and efficacy of psychological interventions with this group; to inform best practice regarding the identification and management of caregiver burden in ALS; and to create a formal psychological intervention tailored specifically to the needs and wants of ALS caregivers.