Garry Martin and his wife Kim live on the beautiful Ards Peninsula, in idyllic surroundings – a peaceful life, interrupted occasionally by the mischievous sheep in their field.
Garry, who is 60 years old, works from home as a translator – he’s sharp-witted, funny and very erudite, and the bond between him and Kim is very evident.
However, all is not entirely as it seems, as Garry, who used to be a university lecturer in modern languages and also worked as a medical translator, is waiting on a final diagnosis, which he hopes will explain the symptoms he’s been experiencing for the past few years.
“I first noticed odd things happening with my visual perception – if an everyday item was presented to me in an unusual way, I might not be able to see it,” he says.
“Odd things happen; weird visual distortions. I’ve noticed a decline in myself and I can’t multi-task or talk all day the way I used to be able to.”
The couple have a working diagnosis of Posterior Cortical Atrophy (PCA), a relatively rare form of dementia that damages the back part of the brain. But despite having worked for a year to find an explanation, they are still waiting on an appointment with a neurologist, without which they can’t receive a firm diagnosis.
Garry says they have been relatively lucky in that, at the beginning, their new GP in Portaferry knew a fair bit about dementia, as he had specialised in mental health. Despite Garry’s relatively young age, he performed a Montreal test, a brief 10-minute assessment which is used by healthcare professionals to detect signs of early-stage dementia. This confirmed that there was an issue and Garry was referred for a CT scan, which he received quite quickly.
However, diagnosing the specific subtype of dementia takes an average of 3.5 years in the UK. The diagnostic pathway is notoriously slow due to a combination of clinical complexities and systemic NHS constraints.
An Alzheimer’s Society report during Dementia Action Week back in May found that patients routinely face prolonged delays to diagnosis, as well as stark inequalities in treatment and support, with many patients waiting up to six months for referral to a Memory Clinic.
New research published this week, in time for World Alzheimer’s Month, reveals that families affected by dementia are being forced to put their lives on hold by prolonged waits for a diagnosis.
A UK-wide survey of more than 1,000 carers reveals nearly half of people (45 per cent) waited more than six months for a dementia diagnosis after first seeking help, with devastating consequences for their work, finances and mental wellbeing.
The situation in Northern Ireland is arguably even worse. We face the highest projected increase in dementia prevalence in the UK. Around 25,000 people live with dementia in Northern Ireland, a figure projected to jump to more than 37,000 by 2040. Evidence shows that dementia already costs Northern Ireland £1 billion per year, a figure that is predicted to increase to £2 billion by 2040 without strategic intervention.
Dementia is driving significant avoidable pressure across the health and social care system. In Northern Ireland, research suggests that there are 15,000 additional visits to A&E annually from undiagnosed dementia patients in our hospitals. Across the UK, one in six hospital patients are living with dementia.
The absence of a firm diagnosis means you end up on the internet, scaring yourself half to death
— Garry
Around 60 per cent of people with dementia in Northern Ireland have a formal diagnosis, and without a diagnosis they can’t avail of services, benefits and support to which they are entitled.
These pressures are building, and yet Northern Ireland does not have an up-to-date dementia strategy and urgently needs to invest in systems to improve early diagnosis, diagnostic accuracy and waiting times.
Alzheimer’s Society’s Roadmap for change report recently laid out a list of actions which it believes Stormont needs to address if we are to have any hope of managing the predicted increase in dementia prevalence.
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It is calling for improvements in early and accurate diagnosis, a dementia support worker for every patient, better dementia training for health and social care workers and integrated regional care pathways – or, in other words, an end to the ‘labyrinth’ described by Garry.
Garry says that he and Kim had the advantage of being well educated and able to advocate for themselves.
“Kim used to work in the NHS and knows the lingo, and she doesn’t let anything lie,” says Garry. “I was a medical translator myself for a while. It’s a complex system to navigate and must be very overwhelming for people who aren’t au fait with all that stuff. A lot of people don’t have the capacity or self-confidence to fight their way through. Taking on the medical labyrinth requires a lot of energy.”
While they wait for a diagnosis, the couple keep living their lives as best they can.
“You start this journey by going to the GP and then you’re in the void for months on end. You’re left hanging, and being on the phone so much trying to chase things up makes you feel worse. The absence of a firm diagnosis means you end up on the internet, scaring yourself half to death,” says Garry.
“I’ve noticed a decline in myself. I’m by no means mentally incompetent and, to someone who doesn’t know me, I seem fine – but it’s a case of comparison with the person I used to be.
“At the peak of my career, I was asked to do simultaneous interpreting in French and Spanish for the President of Mexico and President Jacques Chirac, and now I have to really concentrate to remember the steps to make a cup of tea!
“I get confused in the shower. I used to be able to lecture all day and now I can’t multi-task. I have a maximum of about three conversations in me for the day and then I’m exhausted. I struggle in the afternoons. I’m still working, but I have to manage my energy and attention carefully.”
Garry describes dementia as ‘the ultimate invisible illness – initially, at least’ and jokes that his life is going to turn into a Picasso painting as his visual symptoms increase.
He says that unlike cancer treatment, which has seen huge advances in recent decades, there is “no cure, no recovery. You just try to trundle along at your own pace. Of course, if the new drugs that are in development become available on the NHS, that will mean we need to absolutely transform current diagnosis systems.”
In the meantime, Garry and Kim are doing their bit to improve things by taking part in the charity’s Time for Dementia programme. They have agreed to welcome some nursing students into their home to give them a better insight into the impact of dementia through their own lived experience.
Garry views their participation in the project as giving something back to the charity, which has sent a Dementia Adviser to visit them regularly at home, providing advice and support during their long wait.
“Working with Alzheimer’s Society through the Time for Dementia programme has been great. I feel like we’re contributing something valuable by sharing our experience.”
If you are worried about dementia or need advice, contact the Alzheimer’s Society Dementia Support Line 0333 150 3456 or website www.alzheimers.org.uk
For information about the charity’s Northern Ireland programmes and services, including Time for Dementia contact 028 9066 4100.