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Autumn 2016
Welcome
Welcome to the third installment of the PROTECT Newsletter. For those participants who have not had a chance to look at our previous newsletters, or who would like to have another browse, please feel free to view these online here.
 
Thank you for your feedback from the last newsletter, in relation to your thoughts and feelings about driving and moving house. In time, we will be collating all of this information
and conducting a qualitative analysis. 
 
To give us feedback about this edition of the newsletter, or about the PROTECT Study in general, please TELL US HERE.
Update on the study
One year follow-up: The official media launch date of the PROTECT Study was the 2nd of November, 2015. This means that many participants will now be approaching their "one year follow-up" point, where you will be asked to complete the same questionnaires and cognitive test packages as you did as baseline, as well as two new measures. We will send out reminder emails when it is time to complete these assessments, which may be anytime up to a few weeks following your one year anniversary. To reiterate, you will be asked to do these one year from the time that you first completed the assessments, so if you only just enrolled, you will not be asked to complete them again for some time.
 
NB: It is perfectly acceptable to delay starting any of the assessments. However, once you have started the first part of either of the Cognitive Assessments, we ask you to complete the three parts within one week of each other so please begin these when this is most feasible.
 
Change in consent conditions: We will shortly be updating some consent conditions for the PROTECT Study. When you first registered for the study, we asked you to agree to being contacted about future studies that may be interesting for you. As the study develops we want to make sure we are transparent in how we do this. It is important to us that you are comfortable with how we work.
 
To help us decide if you would be suitable for any new study, we will look at your data (for example, your answers to the questionnaires). This will be done anonymously. Your personal details will never be used to identify you during this process. If you are eligible, an automated email will be sent to you so you can find out more about the study, and then you can make your own decision about whether or not you would like to be involved.
 
You should receive an automated email notifying you about the new consent conditions within the next few weeks. This will ask you to Sign-In and agree to the new conditions to continue in the study.
 
If you have any questions about the new consent please contact our Helpdesk team by telephone on 020 7848 8183 or by email at admin@protectstudy.org.uk.
 
DNA sample kits: We are still in the process of sending out DNA sample kits to participants, so please do not be concerned if you have not yet received yours. As you can imagine, to send out kits to all 20,000+ participants does take time, so please bear with us. If you have received yours but have not yet sent it back, please do so at your earliest convenience. The kits contain a stabilising fluid, so they do not degrade for many months. This means if you are worried that the sample may no longer be viable, it probably will be!
Latest news
Calling all carers...
Holding hands
We would like to introduce to you a study called “Caring for Me and You” (CFMAY). This study is an online therapy programme that is investigating whether online support can help those who provide care for someone with dementia to cope with feelings of stress, anxiety or depression.
 
Carers who provide practical or emotional support to someone with dementia, and are experiencing some stress or low mood are invited to register. Volunteers do not need to be the primary caregiver or live with the person they support. 
 
If you do choose to enrol for CFMAY, the eligibility criteria will ask if you are currently undergoing any psychological treatment. Please note that being a part of PROTECT does not count as psychological treatment, and therefore does not make you ineligible for CFMAY.
 
For more information and to register, please visit the study website at www.caringformeandyou.org.uk  
 
Physical activity to protect against cognitive decline
Women exercising
 
It is widely accepted that engaging in physical activity can protect against cognitive decline in later life, but exercising is easier said than done, in some cases. In a study conducted by Crombie et al. in 2004, the researchers found that participants cited a number of reasons for not exercising, including but not limited to: lack of interest, transport issues, shortness of breath, dislike of going out alone, perceived lack of fitness, embarrassment of joining a group.
 
Future research should adress how to keep people engaged in fun physical activities. Keep your eyes peeled on the PROTECT website for future opportunities related to this! We are in the process of developing a novel exercise intervention study, that will be released in 2017. This is still very much in the pipelines, but is shaping up well and we are very excited to give you more information about this in the near future.
 
Dr. Anne Corbett says, "We know that physical exercise is one of the best ways of reducing your risk of dementia later in life, as well as protecting against other related conditions such as diabetes and heart disease. The real challenge is to provide exercise in a way that people find enjoyable and engaging, and to help them get active and stay active for years to come. We want to explore how this could be done through a fun, interactive online exercise programme. This study is in development so watch this space."
 
The Department of Health have a series of "Physical activity guidelines" that you might find interesting. 
 
 
The Global Council on Brain Health has similar guidelines, but they focuses on ensuring meaningful and enjoyable ways to increase and maintain physical activity, and encourage social participation as well as planning.
 
The role of genetics in dementia
Alzheimer's Society
 
We know that certain factors such as exercise, smoking and blood pressure affect our risk of dementia, and there is also increasing evidence that our genes also play a role. By asking PROTECT participants to provide a DNA sample, we are hoping to investigate what role genetics play in the ageing brain, how they affect how our brain functions and what their influence is on the development of dementia. These genes are still only research questions at this stage.
 
For more information about this, please visit the Alzheimer's Society's website: Alzheimer's Society - Genetics of Dementia.
 
Contact us
Thank you all again for your continued contribution to the PROTECT Study. You are helping to make an important contribution to research. 

As always, please do not hesitate to contact the Helpdesk team if you have any queries or comments. You can do this by using the "Contact Us" page on the website, or by calling or emailing us directly.

T: 020 7848 8183