Who is involved in YOD-INCLUDED?

YOD-INCLUDED is a collaboration between the Dutch Alzheimer Centres, four research institutions, two patient organisations and three healthcare organisations.

YOD-INCLUDED is funded by ZonMw and the Hersenstichting.

YOD stands for Young Onset Dementia. YOD-INCLUDED is committed to improving care and support for people with young-onset dementia.

Who’s who?

YOD-INCLUDED is led by Prof. Dr Christian Bakker; as the Principal Investigator, he bears ultimate responsibility for the consortium.

The research is divided into three pillars. Prof. Dr Yolande Pijnenburg leads the first two and Prof. Dr Christian Bakker the third.

In addition, various experts are involved in the areas of implementation and data organisation:

• Knowledge Manager Franka Dinnissen (Vilans)
• Data stewards Jeroen Vermazeren and José Donkers (Radboudumc)

Collaborating partners

• Radboudumc Alzheimer Centre, lead applicant
• Alzheimercentrum Amsterdam
• Alzheimer Centrum Limburg
• Erasmus Alzheimer Centre
• Alzheimer Centrum Groningen
• Leiden University of Applied Sciences
• Erasmus University
• Alzheimer Nederland
• FTD Support Group
• Vilans
• Knowledge Centre for Young Onset Dementia
• De Waalboog
• Exercise 3.0
• De Wever

Would you like to read more about the dementia research programme? See zonmw.nl.

Greater understanding and appropriate care are needed

Dementia in young people can be very different from dementia in older people. As a result, young people often do not receive the care that suits their needs. YOD-INCLUDED is working on solutions.

YOD-INCLUDED’s research comprises three projects. These focus on understanding the causes, the progression of the disease, diagnosis, and appropriate support and care for young people with dementia.

More data: YOD-COHORT

Too little is currently known about how early-onset dementia develops and progresses. There is a lack of data; in particular, data covering longer periods are lacking. As a result, much remains unknown: how does the condition begin, how does it progress, and what is the impact on daily life?

To find answers to these questions, YOD-INCLUDED is launching a so-called national cohort in its first project: the JMD study. This means that the consortium will collect data from many people with early-onset dementia (and their loved ones). Data from this cohort will form the basis for further research.

You can read more about the cohort study at yod-included.nl/jongemensenmetdementie/.

Earlier and easier diagnosis: YOD-CLINICAL

Early signs of early-onset dementia are often missed. The symptoms can sometimes resemble burnout, depression or relationship problems. As a result, people do not receive the right help in time, or are initially treated incorrectly. Why is this the case? Are there ways in which we can better recognise early-onset dementia – and rare subtypes in particular – even in the early stages? The second project of YOD-INCLUDED focuses on these questions.

Support that fits: YOD-CARE

Even after diagnosis, young people with dementia and their loved ones do not always find the care that suits them. Many existing services are primarily aimed at older people with dementia, whilst younger people often have different needs. These include support at work, with parenting or in maintaining social contacts. Fortunately, there are now care organisations in the Netherlands that specialise in early-onset dementia. However, the range of services available and the way in which this care is organised varies greatly from region to region.

In the third project, YOD-INCLUDED is therefore investigating how the provision of care can be improved and how the care pathway for young people with dementia can be made to run more smoothly. And how regional networks can be supported in this regard. This includes better referral processes, greater coherence in the provision of care, personalised care and support that is tailored to the lives of young people with dementia and their loved ones.

See also the project information on YOD-INCLUDED at zonmw.nl.

A mix of methods, always with the target group in mind

YOD-INCLUDED conducts research into early-onset dementia across the full spectrum: from fundamental to applied research.

The people directly affected are actively involved in the various stages of the research. (Find out more under ‘Stakeholders’.)

Fundamental research: changes in the brain

In YOD-INCLUDED’s fundamental research, researchers study the brains of young people with dementia. They do this using data from the Dutch Brain Bank. This is because there are young people with dementia who, following their death, donated their brains to the Brain Bank. This organisation also holds MRI brain scans of these individuals, taken shortly after their death, as well as their clinical data. YOD-INCLUDED can compare this data and investigate what happens in the brains of young people with dementia.

Cohort: long-term data collection

To build up a large dataset covering many young people with dementia over a longer period (the JMD study), YOD researchers are in contact with families in which dementia runs in the family. To collect data, they use questionnaires and additional measurements. They also examine living conditions and medical records. From this, researchers hope to identify early signs of dementia in young people.

Applied research:

YOD-INCLUDED is looking for practical ways to recognise dementia in young people earlier and more effectively. It is also testing these methods.

GPs: spotting the signs

For example, among GPs. Researchers are comparing GPs’ records, looking for clues that might lead to an earlier diagnosis. The researchers are also employing new methods, such as automated language analysis and the measurement of eye movements. Through this, they hope to detect subtle changes that are currently often overlooked.

CBR: high-risk behaviour

In addition, YOD-INCLUDED is investigating how to better recognise risky behaviour in young people with dementia, such as dangerous decisions on the road. Together with the CBR, researchers are testing whether a driving simulator can help with this.

Care pathway: what works well for whom?

YOD-INCLUDED is also looking at how to better support young people with dementia. This includes support during diagnosis and throughout the care pathway. What works well for whom, and why? What are the needs? To this end, YOD-INCLUDED is reviewing the literature; researchers are conducting interviews, distributing questionnaires and holding group discussions with young people with dementia and their loved ones. Ultimately, YOD-INCLUDED aims to further develop and test at least one support method (intervention) in collaboration with the target group.

Regional networking & learning

To ensure that the same appropriate care can be provided throughout the Netherlands, YOD-INCLUDED is conducting research into regional networks. The research begins with an overview of existing networks: what activities are already in place? What are the bottlenecks?

YOD-INCLUDED will then select two or three networks: these will receive additional guidance and support as part of an improvement programme. YOD-INCLUDED shares the lessons learnt from this with other regions. This is done through so-called learning communities: networks in which people exchange knowledge and experiences and continue to learn together.

More knowledge and practical resources

YOD-INCLUDED delivers results that genuinely benefit people with dementia.

These include practical resources, useful insights for policymakers and tools to help make better care decisions for young people with dementia. More on this below.

In addition, YOD-INCLUDED naturally publishes scientific articles; such as these publications, which highlight a wide range of approaches to improving care for young people with dementia:

• ‘Assessing social cognition and risk behaviour in patients with early-onset dementia: Study protocol for the YOD-RiSoCo observational prospective cohort study’: kcdementieopjongeleeftijd.nl (public summary) or view the original English publication on europepmc.org.
• ‘Impaired knowledge of social norms in presymptomatic, prodromal and symptomatic frontotemporal dementia’: kcdementieopjongeleeftijd.nl (public summary) or read the original English publication on europepmc.org.
• ‘Needs of people with early-onset dementia and their informal carers, examined by dementia subtype, stage of the disease process and living situation: an exploratory literature review’: LinkedIn.com (public summary) or view the original publication at journals.sagepub.com.

For an overview, see also zonmw.nl.

More data & better brain scans

For the first project (YOD-COHORT), a national cohort has been established (the JMD study). YOD-INCLUDED uses data from this study – such as information on heredity and changes in the brain – for further research and for practical application.

For example, the consortium is working on new tools to aid diagnosis. These include brain scans that provide a clearer picture of changes in the brain, even at an early stage of the disease.

Guidelines and test package

For the second project (YOD-CLINICAL), researchers are working on clear guidelines. These will enable neuropsychologists and doctors at memory clinics throughout the Netherlands to assess and weigh up symptoms in the same way.

In addition, a test package is being developed for doctors. This will include step-by-step plans to help distinguish more effectively between dementia and conditions such as depression or burnout.

YOD-INCLUDED is also developing new methods to measure behavioural changes. These include a driving simulation that can help identify risky behaviour whilst driving. Social cognition is central to this: how a person assesses situations, takes others into account and behaves socially.

Care decision guide

For the third project (YOD-CARE), YOD-INCLUDED is developing, amongst other things, a care decision guide. This helps the care provider to determine, together with the person with dementia (and their loved ones), which care is best suited to that specific situation. This includes support and guidance, as well as personal preferences regarding living arrangements.

Monitor: towards a better range of care services

A care monitor is also being introduced. This will show whether the care provision offered by organisations still aligns well with people’s needs. It will also help care organisations to improve their provision based on what is actually required in practice.

Toolbox for regional collaboration

YOD-INCLUDED is developing a ‘toolbox’ for regional networks: a package full of insights, practical tips and resources to help regions organise their care more effectively. The consortium is creating this based on lessons learnt from research into Dutch regional collaborations in care for young people with dementia.

Together with the target group and professionals

YOD-INCLUDED aims to ensure its research reflects what people with early-onset dementia (and their loved ones) actually consider important, as well as current practice. That is why the consortium has actively involved these target groups from the outset.

Panel of people with lived experience

YOD-INCLUDED has set up a special ‘target group panel’. This panel comprises twelve experts by experience. They contribute ideas on various stages of the research and share their experiences. This target group panel is also committed to supporting the YOD-MOLECULAR consortium.

Exchange

Initially, this took place mainly on the researchers’ initiative. They primarily put questions to (the relatives of) young people with dementia from the panel. Since then, there has been increasing scope for mutual exchange. The panel meets during the consortium days (twice a year, all those involved in the consortium come together). At these meetings, the panel is updated on developments within YOD-INCLUDED; members can then contribute their ideas directly and provide feedback. Between these meetings, researchers can consult panel members if they have specific questions.

Care professionals via KCYOD

In addition, healthcare professionals are also closely involved with YOD-INCLUDED through the Knowledge Centre for Young Onset Dementia (KCDOJL). This knowledge centre represents around forty healthcare organisations specialising in the care of young people with dementia.

Researchers from YOD-INCLUDED regularly present their work to the knowledge centre’s practitioners, for example during meetings or board sessions. In return, they receive valuable advice: what are the practical challenges on the ground, and how can we better align the research with care provision?