Exploring the lived experiences and care challenges of formal paid caregivers for people with intellectual disability and dementia.

A greater number of people with intellectual disability are living into older age and are at increased risk of developing conditions such as dementia. Caring for a person with dementia presents several challenges for formal caregivers due to the progressive nature of the disease. An interpretive phenomenological analysis was used to understand the lived experiences of a purposive sample of formal caregivers in caring for people with intellectual disability and dementia. Discussions from 14 individual interviews generated data were analysed. Four key super-ordinate themes emerged which were: (1) recognising early indicators and diagnosis, (2) post diagnostic support, (3) coping with change and (4) need for future development. Themes reflected the experiences, barriers to dementia diagnosis and provide a valuable insight into the challenges faced by formal caregivers in providing aged care services.

Evaluation of a novel, multicomponent anxiety management programme for people with intellectual disability: protocol for a mixed-methods, quasi-experimental feasibility study.

INTRODUCTION: Studies have shown some benefits to single approaches to psychological therapies for the treatment of anxiety in people with intellectual disability such as modified cognitive-behavioural therapy and mindfulness. To our knowledge, no studies have used a multicomponent approach for the individual treatment of anxiety-related disorders in this population group. A co-production group of clinical experts and people with intellectual disability has created a novel multicomponent anxiety management programme (MCAMP-ID). The aims of this study are to investigate (1) the feasibility of this approach in reducing anxiety for people with a mild/moderate intellectual disability, (2) the feasibility of outcome measures and (3) the feasibility of completing a future randomised controlled trial of this programme. The data from this feasibility study will be used to inform trial design and to complete power calculation. METHODS AND ANALYSIS: Sixty people with intellectual disability will be invited to participate in the study across four intellectual disability services within one mental health trust in Northwest England. The specialist services will deliver either treatment as usual (TAU) or the novel intervention (MCAMP-ID). MCAMP-ID comprises of 10 individual sessions delivered by a member of the clinical team once a week for between 10 and 12 weeks. TAU will be based on standard treatment currently delivered to meet the person's specific needs. The outcomes of the study will be feasibility of recruitment, attrition, adherence to the programme and suitability of outcome measures. A mixed-methods approach will be used to assess outcomes. ETHICS AND DISSEMINATION: The study received approval from the Research Ethics Committee and Health Research Authority (23/EM/0044) through the Integrated Research Application System (IRAS ID: 315557) in March 2023. Participants will provide informed consent before taking part. Study findings will be presented at conferences and published within a peer-reviewed journal. TRIAL REGISTRATION NUMBER: ISRCTN16062949.