4. University College London: The NIDUS project
Lead Investigator: Dr Claudia Cooper
Institution: University College London
Themes addressed: Independence at home
Amount committed: £1,981,505 over five years
Most people with dementia want to remain living in their own homes for as long as possible. One way that this can be done is through visits by paid home care workers. However, Alzheimer’s Society’s Fix Dementia Care campaign found that that only 2% of people affected by dementia believed home care workers had sufficient dementia training. Nearly half (49%) of them believed that home care workers did not understand the needs of people with dementia. This lack of training often causes breakdowns in these relationships, severely affecting the care of the person with dementia.
Problems with behaviour and communication can often cause family carers of people with dementia a great deal of stress. Increased carer stress and worries about safety often lead to the decision to move the person with dementia into a care home.
Previous research has shown that the most effective care for people with dementia is to take a ‘person-centred’ approach. This includes helping them to make active choices, tailoring the care to the needs of the person and ensuring carers have proper training in communication and coping skills.
Environmental adaptations are also beneficial.
This Centre of Excellence will develop and test person-centred strategies aimed at increasing the time people with dementia can stay at home. This includes training for family and professional carers.
Who is working on the project?
Led by Dr Claudia Cooper at UCL, this project will also work closely with the Universities of Bradford, Reading and Exeter. Each collaborator brings a wealth of expertise including in evidence gathering, the best ways to interview participants, evaluation and getting the findings put into practice.
The project will also recruit two PhD students, one at UCL and one at Bradford. The project also includes international collaborators, with specialists from Canada, the US and Australia adding their expertise.
What will this research address?
The researchers aim to understand how to help both family and professional carers to best care for a person with dementia at home. This includes understanding how to address challenging behaviours that can increase family carer stress and affect relationships. They will also find ways to help home care workers to improve the quality of care that they provide.
What will the researchers do?
Firstly, the researchers will review the existing literature and interview people affected by dementia, carers and home care professionals to build and strengthen the evidence base for their proposed programmes. They will also examine how similar programmes are working, including a project in the United States. This will increase their understanding of how and why people with dementia lose their independence.
They will then use this to produce their two programmes, called NIDUS-family and NIDUS-professional (NIDUS stands for ‘New interventions for Independence in Dementia’). They will co-develop these programmes with family carers and people affected by dementia to ensure that the needs of both groups are being addressed. The professional programme will also include interviews with home care workers and managers and also psychologists, occupational therapists and specialists in social work and social care.
These programmes will then be tested in small pilot studies to make sure that they are acceptable to the people involved and to ensure that they effective.
After they have completed the test trial, the researchers will then go on to test both programmes in a randomised controlled studies, to further test how feasible and acceptable they are. The NIDUS-family study will understand whether the programme is cost-effective and whether it can improve wellbeing and independence for people affected by dementia. The NIDUS-professional trial will test how well the programme can be adopted by care professionals, using this information to inform future studies.
The researchers will ensure that they recruit people for their studies from a wide variety of communities, including rural and urban areas and from different cultural and socioeconomic backgrounds. This will ensure they can take into account the experiences of as many people as possible when developing their programmes.
It can be very hard for research findings to be translated into benefits and changing practice in the ‘real world’. To address this, the team will thoroughly evaluate their processes and use their expertise to increase the likelihood that the programmes will be adopted into everyday care practice.
How will this improve dementia care?
Most people with dementia desire to be able to live in their own homes for as long as possible. To help them to do this, a programme of care that is centred on the person with dementia and that addresses their needs is essential.
This Centre of Excellence will create evidence based programmes to help both family and professional carers to provide high quality care to the person living with dementia. The expertise of the researchers will ensure that they find out how best to get these programmes put into everyday practice.
The programmes that the researchers develop will enable professional carers to receive much-needed training in dementia care and help family carers to reduce stress and improve relationships. Importantly, this thorough, evidence-based approach, which takes into the account the experiences of everyone involved, will enable people with dementia to remain independent at home for longer.