Dementia is in my family. My gran died of Alzheimer’s and my aunt is now going through a similar journey. 

It strips away so much from you that you feel almost useless. 

People say it’s called ‘the long goodbye’ because as she disappears, you’re still having to deal with the fact that they’re still there, there’s still part of your life, but they’re losing their ability to know who you are.

Dementia is a hugely growing problem. It’s the leading cause of death and a cause of death that’s unfortunately increasing.  There probably won’t be anybody that isn’t in some way affected or will be in the future. Although we have some treatments they’re relatively limited at the moment. Research is a way that we can find new treatments, we can find new ways to diagnose the causes of dementia. 

It’s important to find the best ways to care and the best ways to live. 

Join Dementia Research is really a matching service between people who want to find out more about dementia research and take part in studies and researchers and clinical teams who run the studies. Over 60,000 people have taken part in clinical studies of various sorts and they’ve taken part in many important studies that have led to recent advances. 

Research overall we see as a service that every patient should be offered. 

They have a right to know this is mentioned in the NHS Constitution, also the NICE guidelines for dementia advocate that people are routinely told about opportunities to take part in research. 

You don’t have to know a lot about research to be able to talk about it. You just need to have those initial conversations. 

If at the time of diagnosis and there just isn’t enough time or it doesn’t feel right, then we need to make sure we’re creating those opportunities in the coming weeks or months when time might be right and the individuals might be in a better place to actually think about engagement in research.

One of the great things about Join Dementia Research is once you’re signed up to it, you can actually see the studies and you can see what they involve and you can see where they’re taking place.

There are lots of research studies out there that are involving the community and members of the public as well as care homes. 

These range from studies that involve telephone calls, online studies, studies with questionnaires. 

Observational studies, so giving people equipment to see if that’s going to help with their disease progression. 

Sometimes blood tests, sometimes brain scans, and sometimes trying a new therapy or another form of care. And obviously we don’t know if these things will work, that’s why the research is being done, but if they do work, they’ll have been the first people to be able to benefit from those. 

People that have taken part in studies through Join Dementia Research have often greatly benefited. 

For them knowing that there’s research that involves what they are going through, it helps them in a way. 

I think that’s where research comes into its own because it gives people hope and it empowers them. 

If I can do anything to help people know more about it, and to do anything to mitigate the experience of it, then I want to do it. 

Research gave me that hope for a better future, maybe not for me, but for future generations. 

It feels like they’ve found a new community, a new sense of belonging.

And often people, once they’ve taken part in one study they ask ‘are there other studies that I can take part of?’ which shows that they’ve had a kind of positive experience.

Research is the only way we’re ever going to move forward. It’s really important that the people involved in research represent all walks of life, different ethnicities, gender, social backgrounds. 

As the numbers of people who are impacted by it continue to grow, we need those people on board to help us to find new solutions, to undertake new research. 

We have got lots of people signed up to Join Dementia Research, which is great, but we always need more and we certainly need more people who have an actual diagnosis and these are the people that are going to drive forward this research.

I’d like all healthcare professionals who come into contact with people with cognitive impairment and dementia at all stages to remember to tell people about dementia research. 

It doesn’t take long at all, so take a few minutes out, that’s all it takes. 

They just need to mention Join Dementia Research or give them a leaflet, signpost them to the website or to one of the dementia charities – Alzheimer’s Society, Alzheimer’s Research UK or Alzheimer’s Scotland – that can help people sign up to the service. 

The beauty of Join Dementia Research is it’s just introducing somebody to the concept of being involved in research. So let’s give people the information and put the power into their hands.