Dementia Support Line
University of Exeter: The IDEAL-2 project
Learn about the background of the IDEAL-2 project, the team behind it, and its aims to understand how to help people to live well with dementia by taking into account the experiences of people with dementia and their carers over a long period of time.
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Background
IDEAL (Improving the experience of Dementia and Enhancing Active Life) is the largest long term study of living well with dementia in the UK. It ran from 2014 to 2024. The programme involved 1570 people with mild-to-moderate dementia and over 1200 carers.
IDEAL aimed to understand what factors influence living well with dementia, and how changes over time affect a person’s ability to live well. The programme set out to produce recommendations and an action plan for health and social care professionals and advice and guidance for people with dementia and those who support them. For this purpose, people with dementia and their carers were initially interviewed between 2014 and 2016, and then again after 12 and 24 months.
Alzheimer’s Society funding allowed the programme to expand for a further 5 years under the IDEAL Centre of Excellence that ran from 2019-2024 (named, IDEAL-2). IDEAL-2 explored the experiences of dementia from the perspective of underrepresented groups, and evaluated the cost and use of dementia services, and identified recommendations for policy and practice.
Who worked on the project?
Led by Professor Linda Clare at the University of Exeter, IDEAL brought together researchers from 10 universities with vast experience and expertise across psychology, social science, ethics, public health, and representation from patient and public involvement groups.
It's vitally important that people with dementia are able to live as well as possible'
- Professor Linda Clare, Alzheimer's Society Centre of Excellence, University of Exeter
What did the researchers do?
The researchers hoped to understand what the key indicators of living well and quality of life are as dementia progresses, and how to evaluate these properly to reflect the experience of people affected by dementia.
They also wanted to learn about the perspectives of people from underrepresented communities, for example those from ethnic minority groups, people in more advanced stages of dementia, and those with undiagnosed dementia.
This helped explore strategies that can be put in place to help people with dementia improve their quality of life. It also showed how changes to policy, health and social care practice, and the provision of services can support these individuals better.
Key findings
IDEAL has produced over 70 academic papers on topics including quality of life, wellbeing, the impact of COVID-19, the impact of caring, and the cost and use of dementia services. Outlined below are some of the key findings from the research:
- Being older, male, and caring for an older person with dementia was associated with greater resilience. Greater resilience was also determined by the level of dependence of the person with dementia.
- A better relationship between carer and person living with dementia contributed to increased carer wellbeing and life satisfaction. This was also associated with a lower risk of carer loneliness.
- People with dementia from minority ethnic groups had poorer quality of life and higher loneliness.
- Carers from minority ethnic groups experienced higher levels of stress, felt isolated and had lower relationship quality with the person with dementia compared to White carers.
- People with dementia over 80 years old and living in more socially deprived areas were more likely to report awareness of their cognitive and functional ability.
- Unpaid care accounted for 75% of total costs of care, with 87% of participants receiving unpaid care equaling up to 36 hours per week.
- Interviews were used to capture carer stress levels at baseline, 12- and 24-months. Stress scores increased over this time period and those with the highest reported level of stress also reported depression, a poor relationship with the person with dementia and a reduced ability to cope.
The annual costs of care for people with dementia were estimated to be:
- £8,609 per person for Parkinson’s dementia
- £4,359 for mixed dementia
- and £3,484 for Alzheimer’s disease dementia
Outputs and resources
A focal point of the study was the co-creation of resources and materials, with people with lived experience of dementia, who were a part of the ALWAYS network. These resources aim to provide information and awareness of dementia and give an insight into people’s experiences of living well following a diagnosis.
The ALWAYS network (Action on Living Well: Asking You) included people with dementia and carers who provided invaluable skills and expertise on the projects, helping researchers to produce resources that were useful and relevant.
Below are some examples of published resources and materials. You can find a full list on the IDEAL website.
- The ‘Living with Dementia Toolkit’ is a resource based on research, and the expert experiences of people with dementia and carers. Its contents aims to give hope from the future, inspire through real-life experiences and offers ideas to ways to engage in meaningful activities.
- The ‘My Life My Goals’ workbook was developed to support people with dementia in setting and reaching goals that are meaningful to them. The resource focuses on cognitive rehabilitation techniques and ideas, stories, strategies and solutions to make everyday activities easier for people with dementia to manage.
- ‘Living with Dementia Maps’ aimed to encourage practitioners, professionals, and commissioners to think more broadly about living with dementia. These prompting questions are provided to empower richer conversations and build a deeper understanding to tailor personalised and care support.
What does this mean for policy and practice?
IDEAL has played a crucial part in generating evidence to make a real difference in the quality of life of people living with dementia at different stages of the condition. Evidence from the IDEAL study has contributed to the field of dementia care research, has been featured in Alzheimer’s Society policy reports, and helped shape future thinking within the National Institute of Health and Care Research (NIHR) Policy Research Unit for Dementia and Neurodegenerative Conditions in Exeter (DeNPRU Exeter).
Details
Lead researcher: Professor Linda Clare
Institution: University of Exeter
Themes addressed: Improving quality of life; care in advanced dementia
Amount committed: £1,999,704 over five years
