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Introduction: The Promoting Activity, Independence and Stability in Early Dementia (PrAISED) is delivering an exercise programme for people with dementia. The Lincolnshire partnership National Health Service (NHS) foundation Trust successfully delivered PrAISED through a video-calling platform during the Coronavirus Disease 2019 (COVID-19) pandemic. Methods: This qualitative case-study aimed to identify participants that video delivery worked for, to highlight its benefits and its challenges. Interviews were conducted between May and August 2020 with five participants with dementia and their caregivers (n = 10), as well as five therapists from the Lincolnshire partnership NHS foundation Trust. The interviews were analysed through thematic analysis. Results: Video delivery worked best when participants had a supporting caregiver and when therapists showed enthusiasm and had an established rapport with the client. Benefits included time efficiency of sessions, enhancing participants’ motivation, caregivers’ dementia awareness, and therapists’ creativity. Limitations included users’ poor IT skills and resources. Discussion: The COVID-19 pandemic required innovative ways of delivering rehabilitation. This study supports that people with dementia can use tele-rehabilitation, but success is reliant on having a caregiver and an enthusiastic and known therapist.
All stakeholders involved in co-research with people with intellectual disability can benefit, providing there is adequate infrastructure to accommodate and empower the co-researchers. Many current intellectual disability research projects still lack systematic involvement of PPI members.
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Older patients account for around 20% of the population in secure forensic psychiatric services in the UK. However, little qualitative research has investigated the experience of ageing in secure settings. This study aimed to gather the individual views of a sample of patients over 50 years old in the UK at different levels of security. Fifteen participants were selected and underwent one-on-one qualitative interviews. The interviews were analysed through thematic analysis, which generated seven themes: Self-agency, activities, social life, practical matters, recovery, physical health and service improvement. Study findings highlighted the complexity of ageing in secure settings. Despite the positive feedback reported in aspects such as physical health care, education opportunities, staff and support of religious practices, participants experienced added barriers to recovery, caused by social isolation/withdrawal and activities/treatment that did not respond to their complex age-related needs, generating poor motivation to engage. Our findings call for the development/implementation of programmes tailored to the unique needs of older patients. This process requires an active involvement of the primary stakeholders and further patientcentred research.
BackgroundPeople with dementia progressively lose cognitive and functional abilities. Interventions promoting exercise and activity may slow decline. We developed a novel intervention to promote activity and independence and prevent falls in people with mild cognitive impairment (MCI) or early dementia. We successfully undertook a feasibility randomised controlled trial (RCT) to refine the intervention and research delivery. We are now delivering a multi-centred RCT to evaluate its clinical and cost-effectiveness.MethodsWe will recruit 368 people with MCI or early dementia (Montreal Cognitive Assessment score 13–25) and a family member or carer from memory assessment clinics, other community health or social care venues or an online register (the National Institute for Health Research Join Dementia Research). Participants will be randomised to an individually tailored activity and exercise programme delivered using motivational theory to promote adherence and continued engagement, with up to 50 supervised sessions over one year, or a brief falls prevention assessment (control). The intervention will be delivered in participants’ homes by trained physiotherapists, occupational therapists and therapy assistants. We will measure disabilities in activities of daily living, physical activity, balance, cognition, mood, quality of life, falls, carer strain and healthcare and social care use. We will use a mixed methods approach to conduct a process evaluation to assess staff training and delivery of the intervention, and to identify individual- and context-level mechanisms affecting intervention engagement and activity maintenance. We will undertake a health economic evaluation to determine if the intervention is cost-effective.DiscussionWe describe the protocol for a multi-centre RCT that will evaluate the clinical and cost-effectiveness of a therapy programme designed to promote activity and independence amongst people living with dementia.Trial registrationISRCTN, ISRCTN15320670. Registered on 4 September 2018.
In dissemination materials no personal identifiable data of the participants were used. Each participant was assigned an anonymised study identity code, and this was used in all research documents and outputs. Access to participants' data is restricted to the research team, the sponsor's designee and relevant regulatory authorities. Anonymised research documents are available upon request from:
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