I was involved in the interview process of the new PHd students at Bradford for their newly formed dementia doctoral centre last summer. Yesterday was my day to meet with the 4 lucky students.
Dr Andrea Capstic had invited me to speak alongside her. These students are so lucky to have won places at one of the 8 new doctoral centres around the country funded by the Alzheimers society. The Alzheimer society saw the need for more students to be attracted into the field of dementia research. After all we have to encourage the next generation of researchers and Bradford already has a world wide reputation for dementia research so it made sense for one to be located here.
So yesterday on a soggy rainy morning, I made my way over to Bradford. It was going to be my last outing before I lock myself in the house to pack ready for moving day. I’ll have 4 clear days before I go for 3 days to Telford for the Dementia Congress next week and then it’ll be moving day 😳😱😁
However, I was looking forward to meeting the students and wouldn’t have missed that opportunity. Part of their course includes having people like me involved. I’ll hopefully be with them every step of the way over the 3 year period.
Andrea and Professor Jan Oyebode met me in reception and we headed upstairs for a much needed cuppa. All the Tutors were in the meeting along with the students.
Courtney in pink is the student I’m probably working with – her study is ‘Optimising transition from home to hospital’
The aim of today is how to talk about how to involve people with dementia and how they should engage people and the challenges they may face doing this.
They started on October 1st and have been having weekly meetings to support them at this early stage in their course.
Today was the turn of Andrea and myself to focus on involvement of people with dementia. Andrea started off by emphasising what they meant by involvement.
We don’t want a tokenistic or patronising approach. ‘Nothing about us without us.’ approach. It was hoped that there would be on going friendships with people as they go through the disease, after all the the theme of doctoral centre is ‘transition’
It’s important to realise we have history before dementia.. They may have to use different methods of engagement with different people and access their experience in a different way.There’s a need to be creative .
Next generation of researchers are being educated by people with dementia and having them as co-researchers and not just as participants.
They have to find the appropriate method of communication through getting to know the individual – I piped up my example of email being fine but I find phone difficult.
Andrea then showed a great slide on ‘Different levels of citizen participation’
On the bottom level of the ladder is the person with dementia asked to take part but not benefiting. An example would be to be Invited to be delegates at a conference but not involving them.
Highest rung is citizen power –person with dementia influencing change.
I then did my bit and spoke about my experience, my involvement and passion for research, what it feels like for me, my passion about language use. I said
“I have dementia but it doesn’t mean that I can’t speak, that I don’t have an opinion, that I don’t have ideas – that I’m not a valued person and here at Bradford, they allow me to feel valued. They include me.”
The students were told there are lots of people with dementia on the panel at Bradford –about 50, all of who Andrea and Sarah know well – Now is the time to start thinking about how you can engage them within your project.
The Service user involvement group has developed over the last 8 years – I can’t remember how I joined – must have just volunteered for something and then never stopped!
Much discussion followed. One of the students commented that she felt it might be difficult to research due to the individuality of the experience. I’d expressed my passion for language but she felt others may not share my passion. Because I didn’t have it written down I couldn’t explain that she’d not understood my point. I’m not a ‘normal’ example of someone with dementia that she may meet. I analyse and assess my experience but it’s important to recognise that others who simply live the experience may still have the same emotional consequence of the use of negative language – must email her.
Self management is not often thought of when ‘services’ are suggested but I’m a great believer in enabling people to help themselves and more self management should be made available for people with dementia as you can do so much to help yourself.
Most people with dementia automatically self manage because services aren’t forthcoming – we should be looking and asking what these types of self management are to help others.
Jan mentioned that the Birmingham service have a care pathway – they ask people diagnosed with dementia ‘would you like to take advantage of xyz group’ and one of them is self management.
The Medical model – mini mental test – is used because it always has always been used but no self management system is forthcoming after it. Typical medical model – I’ll treat you for your eyes and ignore the dementia. This applies to many conditions and not just dementia. If a more holistic approach was taken the patient experience would be far better.
Jan drew meeting to a close – but stressed that they must ask how we capture variability as well as general opinions and thoughts – we’re all individuals but we all have dementia in common.
Another valuable meeting for me as well as the students.