‘I have dementia, but it won’t stop me from trying to live life to the full’

Chris Higgins, 62, sits beside his supportive wife Angela in their north Belfast home and says clearly and defiantly: “I have dementia, but I’m still here, and I’m still me.”

The former heavy goods vehicle driver was forced to give up the job he loved along with his bus licence when he recently received his diagnosis which he describes as a “tsunami that just floors you”.

“I was driving my juggernaut one day to Omagh and after the diagnosis the next day my licence was gone. That was hard.”

Angela had noticed a change in his behaviour that alerted her that something was wrong: “He was confused and doing things out of context and I just knew something wasn’t right. He was starting to get upset about being confused as well, so I made sure he saw the doctor.”

”I was prepared for the diagnosis because my father had Alzheimer’s disease and I knew this kind of thing was in the family,” Chris confides. “It was not pleasant to hear but I was more worried about Angela because she takes care of me and I was concerned for her.”

Angela interrupts: “I was sad for Chris because he loved his job and I was disappointed for him that he had to give up his licence and that sense of purpose that his job gave him.”

But what Chris, and his devoted wife, want to convey is that a dementia diagnosis, especially when caught at an early stage as in Chris’s case, does not mean an altogether bleak prognosis. Life is not over, and for many grappling with the early stages of the disease, they can still lead fulfilled lives full of love, connection and the pursuit of hobbies and interests that keep their zest for living intact.

Although Chris does not yet know what form of dementia he has - there are numerous forms from Alzheimer’s to vascular dementia, dementia with lewy bodies, Parkinson’s-related dementia, mixed and frontotemporal, to name the primary forms - he has been prescribed the drug memantine which is used to treat the severe confusion associated with the disease and can improve memory, awareness and the ability to perform daily functions.

”I feel more alert on memantine and when I saw the occupational therapist I actually passed a lot of the memory tests that she had expected me to fail which made me feel really good. I’m nowhere near the stage where I cannot recognise the people who are important to me or enjoy having good conversations with people I meet.

“Just yesterday when I was putting my car through the MOT I was chatting away to another man who knows me and he couldn’t believe it when I told him I had had to give up my job because I have a dementia diagnosis. That made me laugh and feel good, because I’m still pretty lucid.

“I think a lot of people just dismiss people with dementia as invisible, or as irrelevant, as though we don’t have anything to contribute anymore  and that is simply not true. And I suppose I want other people to know that you do not have to allow a dementia diagnosis to make you feel as though the best part of life is gone from you.

“As I said, I am still me, and though I might forget the words for certain things and get confused, for the most part I am doing OK. I still get frustrated when I forget the words for things, but I am still able to communicate as best I can with people who matter to me.”

Chris can still have meaningful relationships with those he loves, enjoys picking up his grandchildren from school, is partial to a non-alcoholic beer and has a pipe dream to keep bees in his back garden (“They are the most important insects on the planet and they generally won’t sting you!” he enthuses and has even joined the Northern Ireland Bee Keeping Institute and dreams of keeping his own hive).

He enjoys Netflix, takes a keen interest in current affairs and is very much a family man, and has been immensely supported by Dementia NI, an organisation set up by and for those living with the condition, to form a community of connectivity that has continued even throughout the isolation and manifold restrictions of lockdown, with weekly Zoom chats allowing people like Chris to engage with others, share their problems and become adept at availing of virtual platforms to combat the loneliness that has blighted the lives of so many since the genesis of the Covid crisis.

The organisation works across the province and outside of lockdown restrictions arranges all kinds of events to bring those living with dementia together, so they can chat, swap stories and advice, and take part in fun activities. Though much of this was curbed by Covid, the weekly Zoom sessions have proved a lifeline for Chris and others like him.

The charity - originally set up by five inspired dementia patients who wanted to build a helpful community network allowing people to understand that life can continue at full throttle for many years after an early diagnosis - also offer online yoga, and in the past have had magic shows, storytelling sessions to help spark and help people share memories and a panoply of other events.

”Dementia NI have been amazing,” adds Chris. “I don’t know how I would have managed without their support and I can’t praise them enough.

“Without them Angela and I would be climbing the walls trying to get in touch with people who could help us.

“The groups where we all meet on Zoom have meant so much to me and I’ve made so many new friends and you start to see that you are not alone, lots of other people are on the same boat, and are not letting dementia beat them, but continuing to live as full lives as they can despite the ways in which their memories and emotions are affected.”
Dementia Empowerment Officer Hazel Haworth says early diagnosis is vital because otherwise those affected by the condition can lose confidence, doubt themselves without knowing why and gradually lose daily life skills as relatives step in to look after them without understanding the condition.

This can lead to dementia patients feeling profoundly disempowered, enfeebled, and isolated. But the mission of Dementia NI is to help those with dementia take back the power and sense of control over their own lives, helping them to better understand their condition and feel emboldened to pursue the lives they wish to lead in defiance of the range of difficulties life presents them with.

Hazel said: “What we do at Dementia NI is that when someone receives a diagnosis we do an ‘In The Same Boat’ consultation, usually face-to-face but at the moment online.

“A lot of people who come along, they think life is over, but then we can put them in touch with other people who have been living with dementia for years and they start to see that life goes on and that you can adapt and find ways to live with this.

“So many people with dementia are still very active and doing all the things they want to do.

“And during lockdown they have learned to use Zoom and other technologies to connect, which is wonderful.

“People like Chris attend the Dementia Empowerment Support Groups, weekly on Zoom, where you can get peer support, so if you’ve had a bad week you can share your problems with others affected by dementia who understand what you are going through. We also work with the NHS and other organisations to try to ensure that those with dementia can access the help they need.

“So many friendships have been developed throughout lockdown, but soon our groups will be up and running again across Northern Ireland, and I think there can be no replacement for face-to-face contact, so we are all looking forward to that resuming.”