A GP’s computer screen flashes a decision-support alert during a consultation with a patient showing early memory problems, prompting a structured conversation about dementia and next steps. This programme addresses a persistent gap: people with dementia and their families receive inadequate support at every stage, from first symptoms to end of life. The consequences include poor quality of life, unnecessary hospital stays, and costly crisis responses. The research builds a large community cohort of people with dementia and their carers, then nests five intervention studies within it. These test an educational package for GPs (including computer decision support), a trial of medication versus exercise for managing behavioural symptoms, a toolkit for incontinence, a palliative care toolkit, and an evaluation of the Mental Capacity Act 2005. If successful, the programme could change how dementia care is delivered in everyday practice. GPs would have tools to diagnose earlier and manage more effectively at home. Families would receive practical guidance for incontinence and end-of-life care, reducing distress and avoidable admissions. The Mental Capacity Act guidance would help professionals apply the law consistently, protecting vulnerable adults. The cohort itself becomes a resource for future trials, accelerating research in a field where the population is ageing rapidly.
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Aims and objectives To assemble a community cohort of people with dementia and their families, within which intervention studies can be nested. The objectives are to develop and test interventions that improve patient, carer and service outcomes at three major stages of dementia: 1) recognition and first response; 2) management of behavioural and psychological symptoms of dementia (BPSD), and of incontinence; and 3) end of life care. The programme will also evaluate the impact of the Mental Capacity Act 2005, and develop educational interventions to support the use of the Act.Background: Dementia has an enormous impact on the lives of individuals and families, and on health and social services, and this will increase as the population ages. The needs of people with dementia and their carers’ for information and support are inadequately addressed at all key points in the illness trajectory. The consequences are poor quality of life, inappropriate and costly responses to the problems that emerge, prolonged in-patient stays, and further disablement. Research Plans: We will assemble a cohort of people with dementia and their families, recruiting through primary and secondary health care, social services and voluntary organizations, and will nest five projects within it: 1. An educational intervention (including a computer decision support system) for primary care management, psychosocial interventions & shared care of medication will be developed & tested it in an experimental study. 2. A study of the incidence and temporal course of BPSD, and a randomised trial of its optimal management. 3. The development and testing of an evidence-based toolkit to reduce the impact of incontinence. 4. A study of the pathway to death of older people with dementia and the development and testing of interventions that support them and their carers in palliative care. 5. Evaluation of the impact of the Mental Capacity Act 2005, and practice guidance to enhance concordance with the Act.Research Team: We are a multidisciplinary research team, with experience of different methodologies, a track record of collaboration and project completion and an international reputation. This programme builds on our successful earlier work on dementia diagnosis and management in primary care. We have close working relationships with the Dementias and Neurodegenerative diseases research network (DeNDRoN). We can draw on expertise from the NICE/SCIE dementia clinical guidelines development group, the Greater London Local Research Network (GL-LRN) and the National Care Home Research and Development forum.Research Environment: North West London Mental Health Trust will host this programme. The cultural and social diversity of London and surrounding areas will provide opportunities for testing interventions in different population groups and contexts. The Trust has an energetic user forum that will play a role in the design and management of projects.Anticipated outputs, outcomes and impact: The programme will produce the following main deliverables: 1) An educational intervention for general practice, tested in an RCT, combining timely diagnosis and psychosocial support around the period of diagnosis.2) A computer decision support system that includes the above, and also shared care guidelines for medication use, to enhance the quality of primary care practice.3) The outcome of an RCT of medication versus exercise promotion for management of BPSD, an additional management option for a challenging problem 4) A toolkit for management of incontinence in people with dementia living at home, to improve the quality of life of people with dementia and their carers. 5) A toolkit for palliative care in dementia, suitable for use in both community and care home settings, to assist carers to provide optimal end of life care. 6) Practice guidance on the use of the Mental Capacity Act 2005, including its use in adult protection work. 7) Increased research capacity in dementia in th
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