“What’s this week’s episode of the podcast about?” my wife asked me the other night. After a bit of a pause I remembered it was about cognitive decline, “And what is in it?” After a longer pause, I told her I couldn’t for the life of me remember. She laughed, but in truth it wasn’t entirely a joke. We recorded this episode a few weeks ago and the details had evaporated from my mind.
So am I suffering from one of the most distressing symptoms of Parkinson’s - or am I just getting old? Opening the episode, Mark Mardell says “this is the one where we stare fear straight in the face” describing cognitive decline and dementia as something we all dread.
There then follows a lighthearted discussion about memory loss, how Mark and I go upstairs in search of something and come back down having forgotten what it was, how Gillian has stopped saying in lectures “there are three things you must remember” because she can never remember the third, how we all struggle to match a face to a name.
The tone is jokey and we all hope this is just about getting older rather than Parkinson’s but beneath the surface there is deep anxiety. Luckily, we have a great guest in the pub with lots of facts and plenty of practical advice, although Professor Rimona Weil from the UCL Dementia Research Centre starts with quite a bleak statistic.
She says a Scandinavian study has shown that “if you have Parkinson's, you're six times more likely to get dementia.” She says the problem is that, faced with this scary number, both patients and their doctors tend to avoid the subject of cognitive decline:
“There's almost a kind of clinical feeling that ‘Oh, I don't know if I want to bring this up in the clinic appointment, because I'll deal with the movement side of Parkinson's, but there's not much I can do about the dementia.”
But Professor Weil, who combines academic work with a patient-facing role, is having none of such defeatist talk. She tells us there are definitely things we can do - and the main ones are physical exercise and social interaction.
The irrepressible Gillian Lacey-Solymar, who is learning Polish as a way of keeping her mind active, cheers us all up further by getting us to play a brain game she used to give her students. I won’t describe the drawing game here - and congratulations to listeners who can work out what is going on - but reassuringly we all do pretty well. Then again, the game involves knowledge of Roman numerals and we are all of the generation and class that probably learned that VI is 6 at school.
Professor Weil, who is younger than us, takes part and finds the game quite challenging but says it is “a brilliant example of actually engaging and getting people working together” and suggests that, coupled with our regular meetings in the pub, we may have come up with a recipe for staving off cognitive decline.
She gives us a crash course in the difference between Lewy Bodies dementia - the kind suffered by people with Parkinson’s - and Alzheimer’s. People with Alzheimer’s mainly suffer from progressive memory loss whereas Parkinson’s has a different impact on the brain:
“There's two parts of the brain it particularly affects. So one is with organisation and planning. And the other part of the brain is actually the back of the brain, which is where we process visual information. So that will be judging distances, perhaps when driving, or finding you've got lots of things in front of you, and you can't find the thing, even though it's right in front of you.”
That may mean that we would be wise to give up driving as our symptoms worse, but the Professor says the upside is that, compared with people with Alzheimer’s, we do better at retaining our sense of self:
“I really find with people that I see in the clinic that they are still ‘them.’ And I think that is different from Alzheimer's, that people have an awareness, they know what's going on,”she explains. “I think you absolutely retain the person you are even at relatively advanced stages. So I do see that difference.”
But I am somewhat sceptical about the evidence that going to the pub, learning Polish or doing 30 press-ups each morning will slow the decline of my mental processes - as I put it to the professor, “It's quite difficult to work out why hanging out in the pub together would affect what's going on inside my brain.”
She admits that the evidence is quite thin - for example research by the celebrated Dutch neurologist Bas Bloem shows clear signs that exercise can improve the motor symptoms, but only limited evidence of a slight improvement in cognitive outcomes.
But the key here is that much more funding needs to go into research in this area - we are always hearing of big clinical trials for new Parkinson’s drugs aimed at motor symptoms, but virtually never about experiments to determine the role played by diet or exercise on the mental state of “Parkies”. Now, that is changing
Professor Rimona Weil, who we all agree has been a brilliant informative guest, ends with a plea for volunteers for a trial she is running which aims to dig deeper into the links between Parkinson’s and dementia and thereby develop treatments.
She needs people with Parkinson’s, both with and without dementia, and people who don’t have the condition. You can find out more here.
I’m a carer for my husband, who has Parkinson’s dementia, macular degeneration, needs hearing aids and has a year between visits to a Parkinson’s doctor. I’m in my seventies and find it difficult to keep track of his medication when there are unexpected changes. You are talking about a charter for the patient, but how about a charter for the poor overworked Carer’s who are expected to cope 24/7. He was prescribed Rivastigmine for the dementia and this has improved his awareness of his surroundings but it was only by experimentation that I found that timing the tablets to 8am and 6pm made a big difference. He has the characteristic stuttering walk through doorways and frequent falls. During visits to the eye clinic I noticed that they painted the doorframe bright turquoise instead of white and it seems easier for him to walk through. Has anyone considered repainting their house to a better colour for Parkies?