We believe in the importance of supporting medical research programmes that can make a real difference to peoples lives and the future of our population. There is a genuine need for additional research into dementia in younger patients under the age of 65 who’s illness is not a cause of Alzheimer’s disease.

Why did we fund this project?

Comments from members of our the Alzeimers Trust Research Network:

‘I think that research into dementia not caused by Alzheimer’s disease needs attention, and so do people who experience especially distressing and challenging symptoms.’

‘This proposal addresses a form of dementia which so far has been inadequately investigated and does so in a way which inspires confidence in future progress.’

‘It’s very important to develop understanding of this under researched form of dementia.’

 

What do we already know?

Frontotemporal dementia is the second most common cause of dementia in people under the age of 65. The most common form of frontotemporal dementia results in predominantly frontal lobe damage and initial changes in personality and behaviour. This is the behavioural variant of frontotemporal dementia. The particular clinical features of this type vary and depend on what parts of the frontal lobes are most affected

Currently there are no disease-modifying treatments for the behavioural variant of frontotemporal dementia, and unlike Alzheimer’s disease there are also no specific symptomatic treatments – as a result people are often given antipsychotic medication.

Fortunately, major scientific advances mean that there is real potential for new treatments to be developed. There are now possible candidates for therapeutic interventions and support for bringing them to trial.

As these treatments progress towards clinical trials we will need non-invasive signals, or ‘markers’ that can be used for early diagnosis to assist correct enrolment of people with this form of dementia on clinical trials. In addition, markers capable of tracking the disease as it progresses will be central to assessing the effectiveness of these treatments at slowing the disease process. Initial investigations using brain imaging and behavioural assessments have shown potential as tools for developing these non-invasive markers – assessing these is a central aspect of this project.

 

What does this project involve?

A characteristic feature of people with the behavioural variant of frontotemporal dementia is brain atrophy (volume loss resulting from the damage and death of neurones) – this atrophy is accompanied by deficits in the main functions and behaviours served by these brain regions. The variability that is such a feature of frontotemporal dementia is also expressed in the pattern of the brain regions involved.

It currently remains uncertain whether patterns of atrophy are best viewed as a feature of all people with the behavioural variant of frontotemporal dementia, or whether distinct patterns and subtypes can be reliably identified.

The overall objective of the project is to investigate brain imaging and behavioural symptoms in a large group of people with the behavioural variant of frontotemporal dementia in order to better understand the nature and different expressions of this complex, variable and devastating disease and to develop non-invasive markers for future clinical trials.

This will involve scanning the brains of people with the behavioural variant of frontotemporal dementia and assessing their symptoms repeatedly as their condition progresses, to understand what areas of the brain are affected and whether different sub-categories of this form of dementia can be made.

 

How will this benefit people with dementia?

Understanding disease progression will be important for investigating how to cluster the behavioural variant of frontotemporal dementia into possible subgroups, but also to develop accurate measurement techniques for assessing the efficacy of any future clinical trials.

Accurately identifying the behavioural, cognitive and functional difficulties that develop in the variable presentations of this form of dementia is a crucial and understudied area. Validated scales of clinical and functional change suitable for use in clinical trials are urgently needed given there are possible treatments and clinical trials on the horizon.

Better understanding regarding the most likely pattern of disease-related changes will help inform and prepare people affected by this form of dementia about prognosis. Improving measures of behavioural and cognitive changes and the impact these changes have on carers will assist informed management and support for the most difficult symptoms and potentially extend length and quality of life at home for both the person with dementia and their carer.