Living with dementia: 'I didn't have a clue who I was' 

Charlie Drake was driving his car when his mind suddenly went blank — it was the first indication he had dementia.  But with the help of a memory clinic, he has found ways to manage his day-to-day living   

Charlie Drake was driving to visit a lifelong friend who was terminally ill when, all of a sudden, he felt completely lost.

Charlie Drake was driving to visit a lifelong friend who was terminally ill when, all of a sudden, he felt completely lost.

“I didn’t have a clue where I was, who I was, or where I was going to or coming from,” says the now 78-year-old.

“I pulled into the hard shoulder, switched off the engine. I sat there, my eyes closed, a total blank feeling. Then my head started to clear and I thought of the phone, but I couldn’t remember who I wanted to ring, or the number.

“I told myself not to panic, and waited a few more minutes, then I remembered and phoned my wife, Ellen.

“I asked her where I was supposed to be going… she thought I was in a pub. I explained — and all of a sudden everything became crystal clear, and away I went.”

Charlie, who’s based in Derinagree, Co Cork, was diagnosed with dementia in early 2019, one of the 64,000-strong population in Ireland who are living with the condition.

Dementia is an umbrella term for a set of symptoms and behaviours that occur when the brain stops working properly. Dementia is caused by different diseases of the brain that affect the parts of the brain used for learning, memory, and language.

“The most common cause of dementia is Alzheimer’s disease, which is caused by a build-up of two proteins in the brain,” says Prof Seán Kennelly, consultant geriatrician and director of the institute of memory and cognition at Tallaght University Hospital.

He explains that, while short-term memory loss is often an early symptom, some patients can also present with changes to their visual perception of the world around them, or with altered behaviour.

“Many people associate dementia with memory loss — but it’s only one of the symptoms patients can present with. This is why one person’s dementia can be so different to another’s.”

Charlie recalls thinking “this was the end” when he first heard his diagnosis.

“But I kept telling myself it’s not going to beat me,” he adds.

'I kept telling myself it’s not going to beat me,' said Charlie Drake

His doctor referred him to the memory resource room at Mallow Primary Healthcare Centre. It is one of 23 Memory Technology Resource Rooms (MTRR), a free national service providing practical information and advice on assistive technologies, as well as support strategies to help people at different stages of dementia and memory loss.

“I could get up three or four times a night to check if the door was locked. I could put an egg on to boil, and forget to check it and turn off the cooker. 

"I’d meet someone and couldn’t think of their name — even some of my own family,” says Charlie.

At the memory resource room, where he did a six-week brain health course, he learned strategies to overcome these difficulties.

“The first thing is to make sure I don’t have the autopilot on. I’ve learned to say aloud what I’m going to do — ‘I’m going to boil an egg’ and ‘I’m going to come back in four minutes’.

“Keeping prompting myself like this helps a lot. And then there are tricks like ‘1944: close the door’.” 

Charlie recently participated in a soon-to-be-launched documentary about a local ambush in 1921.

He says he’s at his best when active. 

“When I’m actively doing something, I’m perfect. When I relax or get lazy, my mind starts playing tricks.”

Living and working with dementia

Fair City actor Bryan Murray recently revealed he was diagnosed with Alzheimer’s disease three years ago.

“I have it and I am working with it,” he said in a recent interview, adding that Fair City’s producer said she would do anything to support him.

Some 10% of dementia cases are in the under 65s — about 7,000 people in Ireland, says Prof Kennelly. “Some get it in their 40s. That’s rare. It’s more often in the mid- to late-50s.”

Fair City actor Bryan Murray recently revealed he was diagnosed with Alzheimer’s disease

For many — who are still in the workforce — continuing with their career can be a huge concern.

Prof Kennelly is reassuring. “I have people walking through my clinic in many disciplines who continue to work. Some are involved in manual labour, others in the legal and medical professions.”

This, he says, is because dementia doesn’t globally affect cognition — it impacts pockets of cognition.

“People are often really well able to perform a lot of tasks, though there may be certain ones they’re not able to do as well as before.”

He points to people whose roles are deeply ingrained in them over long years in the job. 

“Many of the roles we do in our day-to-day life are almost automatic. What dementia often impacts is our ability to go up a gear or two if something out of the ordinary happens. 

"But we’re usually able to manage day-to-day routines pretty well, especially at the early stages,” he says, adding, however, that this changes as the condition progresses.

The issue of continuing to work is still a complex one though, even early on. 

“It’s all contextual, depending on the individual with dementia, what they work at, and the types of symptoms they have.”

Important considerations include how well the person understands their diagnosis and symptoms, how open they are to engage with their employer around how they’re currently operating at work, and if there are adaptions that can be made to support them to continue delivering that performance level.

“This could include the employer providing access to occupational health assessment and the utilisation of assistive technologies to support the person in day-to-day tasks.”

With September being Alzheimer’s Awareness Month, Alzheimer’s Disease International (ADI) released a startling finding this week: as many as 85% of the over 55 million people living with dementia worldwide may be missing out on post-diagnosis care.

Prof Kennelly points to significant recent investment in memory services here. 

This includes provision of 30 dementia advisors, who provide personalised support to people with dementia, and their families and carers. 

“There has been significant progress, but we need to make it more equitable,” he says.

• If concerned about dementia, call (Freephone) the national helpline: 1800 341 341 (Monday-Friday, 10am-5pm; Saturday 10am-4pm). For more on services in your county, see: www.understandtogether.ie
• Alzheimer Society of Ireland’s ‘young onset dementia’ page has an employment rights section.