'Dementia is thought of as affecting older people... I'm the proof it can strike anyone'
Bangor dental technician Glenn McCabe began to suffer the symptoms of the condition in his 40s. In this National Dementia Week, he tells Stephanie Bell of his determination to create more understanding and tolerance for those living with the symptoms.
Father-of-three Glenn McCabe was only 48 when he first started developing symptoms of dementia. Now 55 years old, Glenn was finally diagnosed with vascular dementia last year, and the full reality of his situation hit home when he was told he could no longer work or drive.
Forced to wind up his successful business as a dental technician, which he had been at the helm of for 30 years in his home town of Bangor, he was faced with an uncertain future and the challenge of having to build a new life.
Glenn is married to Elaine (53) and they have three children Darren (30), Adam (22) and Megan (18), as well as a beautiful 11-month-old granddaughter, Ruby.
He is one of 20,000 people living with dementia in Northern Ireland.
Coming to terms with his diagnosis has been hard for Glenn, but he has found strength assisting the local charity Dementia NI, by helping it set up a new support group in Holywood.
Working with the charity, he hopes to help create dementia-friendly communities to make life easier for people here living with the condition.
Glenn’s life has changed dramatically since his diagnosis a year ago and he has had to find a whole new way of being.
He recalls: “My problems started slowly seven years ago, following complications when vascular surgery, during which I suffered a stroke. I was diagnosed with vascular dementia in April last year, which took away my ability to drive and work.
“The doctor said: ‘You will no longer be able to drive because of the test you failed” — those were the words that changed my life.
“It is a big shock and it’s a terminal disease which mainly affects people over 70.
“They (doctors) are not really prepared for people as young as me being diagnosed, so they don’t really know how it will progress.”
Glenn found it difficult to close his business of 30 years and was worried about how he would support his family.
Having worked all his life, he also had to find new ways to fill his days.
Glenn says: “I decided to follow a path of healthy living and get more involved around the house, as my wife had now taken on the extra job of looking after our baby granddaughter Ruby.
“We have recently got a new puppy, Billy, who has become my daily companion while I keep the house tidy and read my books — something which I am thankful I can still do.”
An occupational therapist told Glenn about Dementia NI and he has joined the new Holywood group and hopes to encourage others to do the same when he shares his story at the official launch of Dementia Friendly Holywood on Thursday.
He says: “Dementia NI has been the best thing to happen to me since my diagnosis. All the members of Dementia NI are people with a diagnosis of dementia. We believe that we have the right to live our lives to the fullest potential with support, and without facing stigma and discrimination on a daily basis.
“The people I have met have been friendly, supportive and very helpful, especially in dealing with the benefit system, which I was overwhelmed by at first. It was comforting to know that I am not alone in this journey. Going to Dementia NI meetings and the activities I can get involved with are something I look forward to.
“I sometimes fear for the future, but I’m learning to take each day at a time. And, with the support of a great family and Dementia NI, I’m managing to do this. We all try to remain positive and often try to have a laugh about my condition when we can.”
Creating awareness of this debilitating disease is vital to Glenn, who has found that many people, including some of his own friends, tend to avoid him because they don’t know what to say.
He says: “Dementia is probably seen as an older person’s disease. When most people picture someone with dementia, they often think of elderly people in nursing homes. But it can happen to anybody.
“I am living proof at 55-years-old,” he points out. “I’ve found it disheartening when people I have known for years turn away when they see me on the street or in shops, as they are not sure how to talk to me with my condition.
“Through Dementia NI the aim is to challenge the stigma and assumptions around dementia. We want to tell others that we are still human. Dementia is not contagious — you can’t catch it from me. I’ve always respected other people and expect the same respect in return. But I also understand that sometimes people just don’t know what to say.”
With an uncertain future ahead, Glenn has found a way to cope every day through new interests and the support of his family.
He still meets up every Thursday night with childhood friends, as he has done for many years.
And he was also delighted recently when a good friend invited him to take part in a pub quiz: “It helped rebuild my confidence and self-esteem, as he still sees me as the person I have always been, rather than just a person with dementia. It’s exciting, as I thought my quizzing days may have been over for good.
“My wife has recently nicknamed me ‘the wanderer’ as I tend to wander around the house, forgetting why I came into rooms. Our light-hearted attitude makes it easier for me to come to terms with my illness.
“I look forward to my daughter’s visits home from university in Edinburgh. I sometimes worry that my condition will progress while she is away or that some day I may not recognise her, so I try to keep in touch regularly over Skype and Facetime.
“Making communities dementia-friendly is so important to somebody like me,” says Glenn.
“At the moment, I am still able to get around quite well to do a bit of shopping and simple things like that. I have gotten used to travelling on the train, which I hadn’t done in many years.
“Now I depend on my wife, son and daughter for lifts, which is a turnaround from the past. My life is totally different and has been a struggle since my diagnosis. However, I have begun to come to terms with my illness and am happy to experience new things like gardening and walking the dog.”
Glenn is realistic about his condition too, and, for now, is focusing on creating a more dementia-friendly ethos here.
He says: “I know as things progress I will need more assistance to help me remain part of society. Two thirds of people living with dementia still live in their own home and I also want to maintain my independence for as long as I can. And it’s people in our communities that can really make a difference in helping me do so.” Belfast-based Radius Housing Association is also working with Dementia NI in a bid to make Holywood more amenable for those with dementia.
Ashleigh Davis, empowerment officer with Dementia NI, says: “When people discover they have dementia they often feel isolated, de-skilled and afraid. Dementia NI assists these people to remain valued citizens who can still play a beneficial part within their communities.
“The new Dementia NI Holywood group is taking the message out into the community to explain what it’s like to live with dementia and to challenge the associated negative assumptions.
“The hope is that others will be more accepting and tolerant of the symptoms, and helpful towards people with the condition.” Tara Collins, programme manager for Dementia NI, adds: “Dementia NI members recognise the benefits of becoming involved in a group. Members support each other through friendship and understanding, and gain satisfaction from knowing that they are making positive changes for others here.”
Glenn adds: “I would ask everyone to help in our efforts to create dementia-friendly communities, so that other people like me living with the disease can be treated with respect, dignity and understanding.
“I am a person at the beginning of a journey, who is trying to make a difference for my future and for others.”
- Dementia Friendly Holywood will launch the initiative with an information open day on Thursday at Holywood Non-Subscribing Church Hall, from 1pm-6pm. For more information on Dementia NI groups in your area, contact Dementia NI, tel: 028 9068 6768, or email firstname.lastname@example.org
What is dementia?
- Dementia is an umbrella term to describe the symptoms that occur when your brain is affected by specific diseases and conditions.
- Dementia can affect anyone, regardless of their age, gender, creed, race, intellectual or social standing.
- Dementia is a feelings-based illness.
- There are more than 100 different types of dementia
Symptoms to look out for
- Memory loss
- Difficulty thinking things through and planning
- Communication problems
- Being confused about time and/or place
- Sight and visual difficulties
- Mood changes or experiencing difficulties controlling emotions