Hear from volunteers helping to research new technology which could enable people with dementia to remain independent for longer.
Go for it – my life has been enriched.
That’s what Barbara Woodward-Carlton has to say to anyone thinking of taking part in dementia research.
She first volunteered after caring for her late mother, who had Alzheimer’s disease.
Barbara was then diagnosed with vascular dementia herself two years ago.
When the opportunity came up to take part in research into new technology to help people living with dementia, Barbara says, ‘I had no hesitation in saying yes.’
Independent for longer
Although technology can’t replace care and support from human beings, it can help people with dementia to remain independent for longer.
It may also help specialists to focus their time on where their expertise and judgement is needed most.
Professor Ramin Nilforooshan at the University of Surrey leads on the Minder study at the UK Dementia Research Institute.
They’re developing a system to monitor people’s wellbeing remotely.
I hope that the work we do will give us ideas to find a combination of devices, technology and a new model of service that could help people have better care at home for a longer period of time.
The Minder system aims to use a personalised range of devices in a person’s home.
Professionals can monitor information from these and provide help if necessary.
Devices can measure blood pressure, temperature, heart rate and weight, or sense movement.
Bed mats monitor night-time sleep, heart rate and breathing, which may identify an infection.
‘For example, sensors on the door could produce an alert if the door opens in the middle of the night,’ says Professor Nilforooshan.
If this is out of character for you, the monitoring team can liaise with a family member or clinician.
Barbara volunteered to help research a therapy app called Gotcha!
This was co-designed by people with dementia as well as game specialists to help improve recall of names in a fun way.
Photos of people who are important to you are added to the app, which you can then practise with.
Successfully naming people gives you access to mini-games.
Aygun Badalova, a Gotcha! researcher at UCL in London, says, ‘We ask participants to think of six to 10 familiar people whose names they forget and wish to remember better.
We suggest practising these names with the tablet for 30 minutes every day over a six-week period.
Taking part in the Gotcha! study appealed to Jane Scarlett because she had problems remembering people’s names at work.
‘I think people would be surprised how technology can help instead of medication,’ she said.
This study has helped me tremendously and I can now put a name to a face. We don’t hear enough about other methods that could help.
‘I would recommend doing any studies that appeal to you. Researchers can only assist us or find answers to this disease with our help.’
Research needs you
Both Minder and Gotcha! researchers are looking for more people to take part, as are other dementia technology studies.
Sharon Boulter, who works on our Join Dementia Research helpdesk, encourages people to get in touch to find out more.
‘Researchers need volunteers with different levels of ability and experience in using technology, to make it more accessible and easier for everyone to use,’ she says.
It may be as simple as giving a voice command or pressing a button.
‘Talk to us if you would like to find out more about what these types of studies involve.
‘Don’t assume you can’t take part – researchers are there to support, and they want people to take part in their studies.’