First World FTD Awareness Week
Yesterday marked the beginning of the first World Frontotemporal Degeneration or Dementia (FTD) Awareness Week, which runs 4 – 11 October 2015.
FTD is caused by damage to cells in areas of the brain called the frontal and temporal lobes. The frontal lobes regulate our personality, emotions and behaviour, as well as reasoning, planning and decision-making. The temporal lobes are involved in the understanding and production of language.
FTD is a progressive condition which means symptoms get worse over time. The speed of progression of FTD can vary widely, but often unfolds over years – with some people living with the condition for more than 15 years. As the disease progresses, people may start to show some problems with movement similar to those seen in Parkinson’s or motor neurone disease.
Source: Alzheimer’s Research UK
Professor Martin Rossor, NIHR National Director for Dementia Research, says:
“Frontotemporal dementia (FTD) is very different from Alzheimer’s disease and often goes undiagnosed. FTD and other non Alzheimer dementias are relatively under researched but Join Dementia Research has a number of studies recruiting people with these conditions and so we are asking people to sign up to be connected to relevant studies.”
We take the opportunity of this awareness week to look at some of the studies on Join Dementia Research that are recruiting people with Frontotemporal dementia.
The NIMROD study is looking at the relationship between memory disorders and inflammation of the brain. Using brain imaging methods, the study team hope to enhance early diagnosis of dementia. They will also explore how addressing neuroinflammation may be used to treat and even prevent diseases such as Alzheimer’s as well as to differentiate between different forms of dementia.
The VALID study is evaluating community occupational therapy for people with dementia and their family carers. The study aims to develop strategies to maintain both everyday and interesting, pleasurable activities which can be difficult for people with dementia as well as for those who support them (i.e. family members, friends and neighbours). The study initially involves the participant receiving a visit from a researcher where a questionnaire is conducted about how both the person living with dementia and their carer manage every day activities. They may also talk about general mood and well-being as well as what service provision that they already have.
Participants are then allocated to whether they receive around ten hours of occupational therapy OR carry on receiving any usual care, treatment or services. If people are allocated to take part in the intervention, the study takes place primarily in their home.
The IDEAL study investigates what helps people to live well with dementia. It is the first large-scale project of its kind, and what the researchers find out will be used to guide policy and practice for helping people deal with dementia. NHS staff visit volunteers in their home to talk about dementia, and what can really help make life easier and more fulfilling. Researchers will visit three times, twelve months apart, and talk to both volunteers and family members or friends, and bring questionnaires for completion. Each new visit, they will be interested to learn about what has changed. You can find out more by visiting the IDEAL project online.
The ACTIFCare study aims to increase understanding of the whole range of services used by people that have memory difficulties living at home. The aim is to compare how services are accessed across eight European countries so that recommendations can be made about best practice to ensure the best possible care and help is provided as soon as it is needed. This study is recruiting people with dementia along with an informal carer.
You can find out more about World FTD Awareness Week by visiting The Association for Frontotemporal Degeneration website.
You can see if you are eligible for any of these studies – and others around the nation by logging into your Join Dementia Research account. If you haven’t yet registered with Join Dementia Research, why not sign up today?