Case study: Living well with dementia
As dementia significantly alters the quality of life for those affected, recent government policy has prioritised living well as a goal - not just for people diagnosed with dementia, but also their families or carers.
With an ageing population in the UK and increasing numbers diagnosed each year, ensuring that people with dementia can live well for longer is a challenge for policy makers and care providers - and a priority area for dementia research.
Longitudinal studies - those in which the same people are assessed over a period of time - help to improve our understanding of what it’s like to live with dementia and the impact it has on the person, their families or carers. They also provide vital insights and data needed by governments and care planners to shape policy and practice so that better care can be provided, in turn helping to improve quality of life.
Despite the recent focus on helping people to live well with dementia, there is no clear definition of what this means and a limited understanding of factors that may influence individuals and families to live well with the condition.
A dementia study called IDEAL, supported and part funded by NIHR, set out to change this. It was the first large-scale project of its kind to investigate what factors can be targeted to support people to live well with dementia.
Over several years, the researchers visited more than 1,500 people with dementia - along with their family members and friends - to establish indicators of living well.
The IDEAL study will lead to recommendations about what can be done by individuals and communities, health and social care providers, and policy makers to improve the likelihood of living well with dementia.
Professor Linda Clare, Principal Investigator of the IDEAL programme explains: “People with dementia tell us that social, cultural and environmental factors are important for their quality of life and well-being, but these aspects of people’s experience have rarely been included in large-scale studies.
“IDEAL will provide the first large longitudinal data set exploring the experience of living with dementia over a significant period of time. It will help us to understand what changes and improvements are needed to enable people to live well with dementia.”
When Annie Panton from Maidenhead was diagnosed with dementia in 2013, she was offered the chance to take part in the IDEAL study.
Annie said: “I wanted to take part because dementia and Alzheimer’s have been made to sound horrendous, whereas I believe through interviewing people like me, people would realise they should be looking at it differently. It’s got a nasty reputation.
“This is a way for people with dementia to be encouraged to talk to others and say ‘I haven’t lost my brain completely’ and help understand it better.”
- IDEAL participlant, Annie Panton
Annie’s husband, Roger, said: “Dementia is not the end of the road. There’s a long way to go but research can help by letting people know what causes it and what they can do to live a normal life.”
In this video, Annie and her husband tell their story:
Another NIHR-supported longitudinal study, Cognitive Function and Ageing Study II (CFAS II), set out to assess the generational nature of ageing and dementia - detecting whether there has been any significant change in cognitive function amongst different generations of older people.
Researchers assessed nearly 8,000 participants, aged 65 and over, across a number of years and the compared data to that from its parent study, CFAS I, which took place more than twenty years earlier.
In doing so, CFAS II answers the question: ‘Age for age, has dementia and frailty become more or less common for a given age or sex - across generations?’
The study has contributed valuable insights and evidence around a number of key areas related to ageing and cognitive decline - including incidence, prevalence and risk of dementia; healthy life expectancies; mortality; and frailty.
Key findings from the study are available here.
Making a difference
Chief Investigator of the CFAS II study, Professor Carol Brayne, University of Cambridge said: “We have produced a wealth of useful data and knowledge for society, which holds the potential to improve the health and wellbeing of elderly people within future generations."
Data from CFAS II is now being used by government and care providers - including the NHS, local authorities and Public Health England (PHE) - to plan resources and funding required for the care of ageing populations more effectively.
The study’s findings also led to a National Institute for Health and Care Excellence (NICE) review of mid-life dementia approaches to delay or prevent dementia onset; and to PHE developing policies around dementia risk prevention.
Ultimately the study has provided valuable evidence which is shaping ways of thinking around dementia risk being modifiable and how best to optimise brain health across a person’s life course.
Dementia research stats
- In 2017/18, NIHR supported 327 studies focused on dementias and neurodegeneration
- Through services such as Join Dementia Research, last year NIHR helped over 33,000 people take part in dementia and neurodegeneration studies (2017/18)
- In total, NIHR has supported 197 longitudinal research studies across all health specialties - 22 were specifically related to dementia
- 850,000 people are currently living with dementia in the UK, with numbers set to rise by 1 million by 2025
- 1 in 3 people will develop dementia in their lifetime
- 1 in 6 people over the age of 80 have dementia