Category: Research

Health-Related Internet Use by Individuals with Young Onset Dementia – A Qualitative Study

I recently took part in “Health-Related Internet Use by Individuals with Young Onset Dementia – A Qualitative Study” with Ellen Benn, a third year Medical Student, from Nottingham University.

The study looks into how online resources could be used in the future as a service for people with young onset Dementia.

Ellen had written to me previously and I had completed the usual consent form and posted it back to her.

The interview was conducted using FaceTime, but could have been done using Skype, Zoom, BlueJeans, face to face or a simple phone call.

There were a variety of questions about technology, how I use the internet, mobile phone, apps, Alexa, etc.

WE talked about the different apps that I use, including

Microsoft Onenote

Find Friends

Email

Text

Social Media

Banking

Shopping

Notes

Zoom

We talked about how I can transfer the details of an event including travel and accommodation from an email I have been sent by the organisers to Microsoft OneNote on my PC and it automatically transfers it to my phone

We talked about how technology can be an enabler, assuming that the person is already able to use technology or can learn to use technology and that they have the cognitive ability to do so.

All in all I think it took about 30 minutes.

Another example of how simple research can be.



 

Part 6 -The RADAR Alzheimer’s Research Study.

Recently, I went to the Royal Hallamshire Hospital for Part 5 of the RADAR Alzheimer’s Research Study.

It is 6 months since I began this study and this time my daughter Evelyn, who is my research partner was there as well.

When we arrived, we were greeted by Alice, who took us through to one of the rooms and we chatted about how I had been and what I had been doing.

I gave Alice the tablet containers for the last 3 months so that she could check that I had taken the right number of tablets.

Along with checking my blood pressure every evening, this is a requirement of the study.

Sitting and standing blood pressures were followed by the usual blood being taken to check that my bloods were ok before continuing on the study.

The next stage was for Evelyn to go to a seperate room to answer some questionnaires.

Then it was my turn for questionnaires and cognitive testing.

The blood results came back ok, I was given the next 3 months tablets and then we waited for my Neurologist to finish her morning clinic.

My Neurologist was delayed as her clinic had overrun, but I know from working in outpatients that this may happen.

Sometimes a person needs more time than is allocated and my Neurologist is one of those Consultants that will go the extra mile for her patients even though she is under great pressure and lacks funding and support.

When she arrived, she needed to check the blood results my blood pressures and to have a chat about how I was doing.

We talked again about brain donation which I haven’t been able to organise yet as they are reworking the paperwork to incorporate the GDPR regulations, once done it is something I wish to do.

The only way to get a definitive diagnosis is after I have gone and hopefully my brain tissue will help further Dementia research in the future.

That all done, it was time to say goodbye and go to A floor to wait for our taxi.

Another simple example of how easy and safe taking part in research can be.



 

“The Twitter Use of People Living with Dementia” Study – Part 2

Yesterday, Catherine Talbot traveled up from Exeter for the second interview with me for her research study.

It was a sunny but cold day, not bad for her journey and she arrived on time, which isn’t bad going having travelled by train.

I agreed to the interview being recorded and we began.

We started with the obligatory cognitive testing and a couple of questionnaires about daily life.

After a short break, we moved on to the questions Catherine had prepared about how my use of Twitter had changed in the last 6 months, the good and the bad of being on Twitter.

Using Twitter Analytics, we discussed how some months had more tweets than others and I explained that a lot had to do with how busy I was and the challenges of my Dementia.

The last part involved discussing 10 of my tweets and the reasons for them and then we were done.

All in all, it was all done in about an hour, basically a simple conversation, no Frankenstein style testing.

Catherine will return in April for the third and final part of my involvement in her study.

Another example of how simple research can be.

Technology Research

Recently I have done two pieces of research about technology and Dementia.

The first was done using online video to look at a “Dementia Friendly” version of Alexa.

Whilst it is true that you can set reminders with Alexa, I use my phone and memory clock.

It can be the case that after the reminder you forget to do whatever it is, so one suggestion was that Alexa would ask you if you had done the task say 20 minutes later.

Another suggestion was that if say you had a fall at home and couldn’t get to a phone you could get Alexa to dial 999 and there would be a pre-recorded message or a text file that could be sent to the operator containing your contact details, medical conditions and medication.

This research is at an early stage, but will be interesting to see how it progresses.

The second piece of research was while I was at a Dementia Diaries meet up in Birmingham.

Amanda Lazar, Assistant Professor in the College of Information Studies in Human-Computer Interaction and Health Informatics at the University of Maryland USA, was at the meet up to learn more about Dementia Diaries for her research into Technology and Dementia.

Amanda would spend the two days taking part in sessions discussing Dementia Diaries and then doing recorded interviews with us all individually to find out what benefit we all have from doing the diaries and our hopes that it will spread a wider awareness of a life with Dementia.

The research project will not be completed until around September 2019, at which time we will receive a copy of the final research.

As you can see reader, two more examples of how easy it can be for someone to take part in research, not the Frankenstein impression that can come with research.

 

Part 5 -The RADAR Alzheimer’s Research Study.

Recently I was back at the Royal Hallamshire Hospital at the Clinical Research Facility for my 3 month appointment for the RADAR Alzheimer’s research study.

My Daughter Evelyn wasn’t with me today, she will be at the 6 month appointment.

As usual they had provided me with a taxi and I arrived in plenty of time for the appointment.

I had my bloods taken and answered the usual questions about how I had been.

Remember reader if I had any problems taking the Losartan, I am to stop immediately and I have phone numbers I can ring 24/7 for advice.

I had my blood pressure checked and the next 3 months tablets were dispensed.

They booked my taxi home and I went to the main entrance to wait for my lift home.

All in all it took about 30 minutes, another example of how easy it is to take part in research.

The University of Sheffield’s Dementia Futures 2018 Conference

On Tuesday, I went with other members of the South Yorkshire Dementia Research Advisory Group to the Dementia Futures conference at Sheffield Institute of Translational Neuroscience.

SITRAN

The conference, in it’s third year, is a challenge to PhD students at Sheffield University to present their Dementia research in a non-academic way, so that professionals and people living with Dementia can understand their presentations.

It was supported by the Alzheimer’s Society and the Medicine, Dentistry & Health Research Staff Association (MDHRSA).

David Reid and Julie Simpson opened proceedings and kept things going throughout the day, plenty of humour in amongst the housekeeping and keeping things running smoothly during the day.

Sandra Baker, an Alzheimer’s Society Research Network Volunteer also spoke about her role with the society’s research efforts.

There were 13 students involved, 7 gave spoken/visual presentations and the other 6 produced posters about their work.

Some of the presentations and the posters were easier for me to understand than others but that is the way with Dementia reader,  we all have different experiences/challenges and we all didn’t have the same opinions of the presentations.

If you are one of the PhD students reader, take heart, they were all important examples of research and it will be interesting to see their conclusions at the advisory group.

As members of the research advisory group, we were asked to judge both types of presentations and we chose 1 poster and we had a tie for the best vocal/visual presentation.

The day was also an opportunity for me to introduce the new Dementia UK representative for Admiral Nurses to various people from the University, Alzheimer’s Society and others

Charlotte Harris, is developing Dementia UK services across our region and is interested in bringing Admiral Nurses to Sheffield, which would form one part of post-diagnosis support in Sheffield for people diagnosed with Dementia and their carer/family.

All in all it’s was an enjoyable an informative day and the air-conditioning was a blessing on a hot day.