Dementia seeds

Seeds of dementia

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Newcastle University

Providing end of life care for people with dementia with complex needs is often challenging and we need to understand how end of life care is currently delivered to people with dementia and their families. To achieve this we will use a range of methods including telephone and face-to-face interviews as well as observations of current practice.

We will interview professionals about their views and experiences of providing and commissioning end of life care to people with dementia in a range of services and settings. We will ask professionals, people with dementi‌a and family carers to define best practice, and identify factors that influence the extent to which this is actually achieved when providing care.

The aim of this research is to support providers and commissioners to identify and deliver good quality, community-based end of life care in dementia; this will be achieved through four phases.

The SEED programme is funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (RP-PG-0611-20005)

Seeds of Dementia: Misfolded Proteins in Neurodegenerative Disorders

Alzheimer’s disease (AD), Lewy Body Dementia (LBD) and frontotemporal dementia (FTD) are characterized by the accumulation of specific proteins in the brain. The identification of these proteins is necessary to make a definite diagnosis of AD, LBD or FTD but, unfortunately, it can be performed only on post-mortem brain tissue. Recently, a trace amount of these pathological proteins was found in the olfactory mucosa (brain region that detects smell; OM) of individuals with dementia. Since collection of OM is safe and minimally invasive, we will set up a diagnostic test on OM samples which will help discriminate those with AD, LBD and FTD-tau at early stages.


Our aim is to demonstrate that the OM, collected from individuals at early stages of dementia, contains disease-specific pathological proteins that can be used to set up a diagnostic test which will help to discriminate between AD, LBD and FTD-tau.

Study Design:

Olfactory mucosa samples, collected from a well-characterized group of individuals with AD, LBD and FTD-tau, will be analyzed using an ultrasensitive test (RT-QuIC) that can detect the presence of a trace amount of specific pathological proteins, otherwise undetectable using conventional tests. Detection and identification of these proteins will allow us to identify the type of dementia at early stages when symptoms are not specific and might overlap. Results will be correlated with clinical, biochemical, neuropathological and MRI data.

Impact on Diagnosis/Treatment of Parkinson’s Disease:

Olfactory dysfunction is a common symptom in individuals with neurodegenerative disorders, especially those affected by Parkinson’s and Alzheimer’s disease. Such impairment might arise from the accumulation of disease-related proteins in the OM. The identification of these proteins will be of fundamental importance to make the correct diagnosis at early stages of dementia, when symptoms are not specific and conventional diagnostic tests do not provide a clear answer.

Next Steps for Development:

If successful, this project could provide an innovative and strategic diagnostic tool to be used along with conventional tests that is characterized by higher specificity and sensitivity to help physicians identify pathology at early stages. Moreover, it could be used to design specific therapeutic intervention (when available) long before the brain damage occur.