Meet the helpdesk heroes
Our three charity partners provide an essential service to Join Dementia Research, manning a telephone helpline, to answer any questions about the service and to help people register.
Thousands of people register through the helpdesks every year and often have a variety of different questions about dementia research and dementia in general.
We spoke to Catherine McKeever, Research Information Officer at Alzheimer’s Research UK, and Catherine James, Helpline Supervisor at Alzheimer’s Society to find out more about their roles and the important work that they do on behalf of Join Dementia Research.
Can you tell us a little about your role on the helpdesk and what the role entails?
Catherine McKeever (CM): My role at Alzheimer’s Research UK lies within the Science Communications Team. The majority of my time is spent answering enquiries on our Dementia Research Infoline. On this line, we take calls from people wanting general information about dementia, others who have questions about dementia research and those who would like to find out how to get involved in dementia research studies. Through this service we help to support Join Dementia Research, providing a voice at the end of the phone for people who would like to register this way, or have any questions about the registration process.
Catherine James (CJ): As the Helpline Supervisor for Join Dementia Research at Alzheimer’s Society, I work with a team of volunteers to provide telephone support to people interested to know more about and/or to register with Join Dementia Research. I deal with all the initial enquiries that come through our National Dementia Helpline or via direct referrals from our Dementia Support Workers and Memory Clinics. I also screen all online registrations for people registering with memory problems and arrange for the helpline volunteers to make follow up calls to those whose diagnosis is unclear or where it is deemed further information may enhance their study matches.
What are the most commonly asked questions that callers have for you?
CM: One of the most common things we are asked by the public is how they can get the latest “breakthrough” treatments. We often get these calls following media activity, when a particular headline spikes someone’s interest in finding out more about new developments in the field of dementia research.
CJ: We are often asked ‘What does the research involve?’ Many callers think all research is about drug trials and we are able to explain about the different types of research and reassure people by letting them know that they are not committing themselves to anything and would only agree to take part in a study that feels right for them.
CM: When people’s family members has been affected by dementia, they often ask if there is a genetic test that they can take. The answer to this is that dementia is likely to be caused by a combination of risk factors including our age and lifestyle. Our genetic make-up may also play a part if we carry some risk genes. Genetic tests for risk genes are not available on the NHS as most of the genes discovered so far only have a relatively small effect on risk and people with them still won’t necessarily develop dementia. Equally, people without them can still develop the condition, so such a test would not be useful.
CM: Lots of people who have a connection to dementia also get in contact with us hoping that there is something they can do to help bring us closer to a treatment for dementia, and the answer is yes. Research is happening all across the UK and anyone over 18 can register to take part, so if you know of anyone who would like to take part but is wondering if they can, give them the green light to go ahead and get in touch with us!
What’s your favourite part of your role?
CJ: It’s great to know that we are giving people hope and potentially making a difference in the future. I’ll always remember the lady who said ‘I’m so excited, I feel like I’ve won the lottery’ when told there were potential study matches for her husband. Similarly, when we make follow up calls, seeing the changes in study matches when we’ve updated a person’s details, shows how valuable our input is both for volunteers and researchers.
CM: The feeling that you have really helped someone, either by signing them up to Join Dementia Research (especially those with a diagnosis), or by listening to their story and answering their questions. I really enjoy feeling like I’ve made a difference to someone’s day, either because they previously felt there was nothing they could do and are now thankful there is something they can help with, or if they needed an answer to a question, but didn’t know where to turn.
And what’s the most challenging part?
CM: As we deal with a wide range of enquiries, it is sometimes difficult to pick up the phone not knowing what the enquiry will be about. Especially as we know that there are some people we won’t be able to help directly, and will need to signpost to another service.
CJ: The most challenging part of the role for me has to be managing people’s expectations when they call as the result of a media story that talks about ‘a miracle cure’. It’s very hard to hear the desperation in people’s voices, knowing we have to explain that, whilst there is a lot of positive research taking place, it will be some time before any new drugs are available.
CM: Yes, the newspapers can sometimes get too excited about a new treatment before it has gone through all the stages necessary for it to be made available, and this can be misleading to people who are keenly awaiting positive news about possible treatments.
How did you originally start working in the dementia field and why do you think research is important?
CJ: Through my previous experience working with carers and managing a generic helpline, I came across a lot of people affected by dementia. Hearing first-hand about the massive impact a dementia diagnosis has on people’s lives and being aware of the limited treatments available I was keen to work more directly in this field. When my current role became available it seemed like the perfect opportunity to use my helpline skills in a service that promises to accelerate the pace of dementia research, bringing hope to people and, ultimately, leading to better care, treatment and hopefully one day a cure.
CM: I originally started to work in dementia because I did a degree in Neuroscience and I wanted to find a role where I could both utilise my degree and help people. I was keen to work in a role closely linked with research because of how exciting this growing field is. Research is important because it holds the answer to dementia. Research has already done so much for other fields of medicine, including cancer and HIV, and now I truly believe that it is dementia’s turn.
If you would like to get in touch with any of the charity helpdesks, you can contact them on any of the below telephone numbers:
Alzheimer Scotland: 0808 808 3 000
24 hours per day, 7 days per week (SCOTLAND ONLY)
Alzheimer’s Research UK: 0300 111 5 111
9am to 5pm Monday to Friday (UK WIDE)
Alzheimer’s Society: 0300 222 1122
9am to 8pm Monday to Wednesday, 9am to 5pm Thursday and Friday and 10am to 4pm Saturday and Sunday. (ENGLAND, WALES & NORTHERN IRELAND)