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John McErlane from Toomebridge, first learned of dementia when he received his diagnosis. From dealing with feelings of hopelessness and depression John struggled to understand what was happening to him and began to withdraw. However, John has turned his life around and now strives to live life to the full, regardless of his dementia. John got together with four people also diagnosed and helped establish the charity Dementia NI with the aim to help others also diagnosed.

John highlights the importance of getting involved with Dementia NI at an early stage,

“We wanted to offer peer support to others in similar circumstances, we are the experts living with the condition and feel it important that people living with dementia can raise awareness of what it was like to live with dementia. Before we had no voice but now we go out to speak to others in the hope that society will be more understanding of what we must deal with on a day to day basis. Dementia NI has given me a reason to live.”

John talks about his experiences of living with dementia and the importance of maintaining an active lifestyle after a diagnosis of dementia and takes up the story….

Diagnosed in 2011, John still strives to live life to the full regardless of his dementia. John first learned of dementia when he received his diagnosis. John takes up the story,

“I had never come across dementia and wasn’t aware of it before my diagnosis. I didn’t know how devastating it could be until I received the diagnosis and started to learn more about it. There were things happening to me that I just couldn’t understand. Things that I should have been remembering straight off disappeared, and I was really struggling with things that I knew I shouldn’t have been struggling with. Noise levels, children, these things started to affect me and had never done so before.”

John first noticed changes in himself at the age of 52 but kept things to himself,

“Probably like most other people I was in denial for a long while. I don’t think my workmates saw in any changes, but it was never discussed with them. I kept things to myself at the time as I was very conscious that something was going on. I even kept it from my family. I think the truth is that I was trying to pretend that it just wasn’t happening. I’m sure others realised there were things going on, but no one mentioned anything to me. It was shortly after the breakup of my last marriage, when I think back on it. I think some of the characteristics that lead to the breakup of my marriage were caused by my dementia. It wasn’t just an overnight process, it was very gradual.

I began to feel very useless and started to withdraw, I had never experienced symptoms of depression before, but my confidence just fell away. Dementia can be a very lonely place, and I do get lonely. I think that receiving that news was the start of grieving process for me as well as for my family. I am still grieving, as I feel have lost a lot, I have lost the ability to play the guitar, my spelling, my driving licence, which in turn has affected my independence.

Most of all I have lost my confidence and that has been one of the biggest hits for me, as I was always a confident guy. I was living with feelings of helplessness and despair, I felt guilty for not being able to function properly as I could no longer work. My whole life was upside down and my confidence level was at an all-time low. I wasn’t capable of working, and I felt I had hit rock bottom.”

John decided to use his personal experiences to help others,

“One of the biggest things back then, was dealing with the feeling of hopelessness. I still remember that feeling very vividly and thinking to myself, how do I deal with this? When I was living in that dark place, I came to realise that I couldn’t live my life in this way and I had to do something about it. I could still play an active part in society, and even though some days may be more difficult than others, I was determined not to give up.

I got to understand more about dementia, and made a conscious decision to try to make things easier for other people with a diagnosis coming along behind me. That was one of the reasons for me helping to develop Dementia NI, a local charity set up by five people living with dementia.”

Dementia NI is a unique local charity in Northern Ireland, as it is a membership organisation led by people living with dementia with the support from staff and volunteers.

John continues,

“When I was first diagnosed, there really was nothing to offer people like myself that were in the early stages of dementia, that was the reason why we set this up. To give people like us with an understanding of each other, the opportunity to meet up in groups, to have a social gathering, to raise awareness and make positive changes in the lives of people affected by dementia. I wanted to encourage other people recently diagnosed, to offer them friendship and support from others going through a similar situation and highlight to them that there is still life after a diagnosis.

To this day I hear from Dementia NI members how they have experienced their friends and family slowly drift away. My family have been a lifeline to me and the support of friends can make a massive difference. The loneliness that people with dementia experience is inside and is very hard to explain. You could be sitting in a crowd with a thousand people in it, but the loneliness is still there. It is not a loneliness that you miss people, it is a loneliness that is inside you that never goes away. I find Christmas a very difficult time, there are still a lot of thoughts in my mind about the later stages of dementia and the consequences surrounding that. This is what I mean about the loneliness, when I think about the future.”

John highlights how others can help support people living with dementia this Christmas,

“Someone saying hello from the past can make a huge impact on a person with dementia’s life. I miss the comradeship from the people I knew through my job, I would encourage people to stay in touch with co-workers who may have been diagnosed. Make them feel less lonely, make them feel wanted, people with dementia still need to have a purpose in life. If the public would just take a little bit more time when communicating with people with dementia, life would be so much easier for people like me. I don’t ask for much, all I ask is that people still treat me like a normal person.”

Awareness raising

John and other Dementia NI members regularly give talks during Dementia NI awareness sessions, they challenge the stigma of having a diagnosis, dispelling preconceptions surrounding the condition and educate others about what it is like to live with dementia, in the hope that everyone will become more understanding. Supported by staff and volunteers who give a background on dementia, Dementia NI members raise awareness of dementia and bring these unique sessions to life by adding their real-life experiences of living with dementia. Their aim is to challenge the associated negative assumptions, in the hope that others will be more accepting and tolerant of the symptoms, and helpful towards people living with the condition.

“I felt it important to raise awareness of dementia. The public seemed to have a misconception about dementia and I thought it was time to put that right, hearing about it from people who live with dementia was the best way to do so. Dementia is not contagious, you can’t catch it off another person. It’s a disorder of the brain of which there is no remedy. Whilst there might not be a cure, people can still live active and independent lives with the right understanding from the public.

Since my diagnosis I have also learnt new skills, like public speaking, I can now use tablet technology to send emails and I sit on the board of directors for Dementia NI. As a founding member of Dementia NI, I know I still have an opinion worth listening to.

I think the lack of education about dementia hinders people from living well with the symptoms. The general public probably view people with dementia as all living in care homes, with communication difficulties and unable to have an opinion but that is simply not the case as two thirds of people with dementia still live within the community. People may think that as soon as the words ‘diagnosis of dementia’ are mentioned that a person is incapable of doing anything, but that is simply not true. I still have a valuable part to play, I can still mend fishing nets, I love being on the seas and still travel the world. Things that you learn in a lifetime just don’t go away overnight.

What people need to learn about dementia is how people struggle with it. All my life I was always very organised and now I struggle with the organisational side of things. Trying to express things has become more difficult, my speech becomes stuttered and I just can’t get the words out. It is very frustrating for me.

Dementia is not a physical disability; therefore, outsiders can’t appreciate by looking at me what I must deal with, so I must combat the stigma daily. I’ve had people say to me, ‘Sure there doesn’t seem to be anything wrong with you, you look ok to me,’ and I think to myself, what way do you have to look to have dementia? I listen to other Dementia NI group members experiences and hear how they’ve been told to catch themselves on, that there is nothing wrong with them. That is not easy for people with dementia, their confidence level is zapped already and that zaps them even more, but people on the outside don’t realise that.

If the public could imagine what it would be like just living one day with dementia, then they would understand what it is like to get up in the morning. For me just to wake up and know what day it is, is to know that today is a good day. This may seem very trivial to others, but to me it’s not.”

Whilst to date there might not be a cure for dementia, people can still live active and independent lives with the right the understanding and support from the public. John understands that people lead busy lives, especially in the run up to Christmas yet asks for a little more patience and empathy,

“I understand that the public are getting on with their own lives, and 99% of them probably don’t care about me or what I do, that’s the reality. For the public to take an interest in dementia when it does not affect them directly is very difficult. I don’t ask for much, all I ask is that people still treat me like a normal person. If society would just take a little bit more time when communicating with people with dementia, life would be so much easier for people like me.

Just be aware of people around you this Christmas, just don’t suppose that you understand what is happening to somebody or how they may be feeling, ask the individual how you can help them and don’t just assume. Assist people with dementia to be involved and feel socially included this Christmas. People just take life for granted but dementia can strike anybody, not just at an older age.”

John and Dementia NI members regularly consult on issues, services and support which affect them within their local communities.

“After my diagnosis I soon realised that people with dementia didn’t have a voice and we weren’t being heard. Even though we could speak for ourselves, other people and organisations were doing the talking for us, and making decisions for us that we were still capable of making for ourselves. I could see that there was a great need for people with dementia to be heard. I feel very strongly that we should be involved at every level in our own decision-making process, we should be listened to, taken seriously and appropriate action should be taken on the wants and needs of people living with dementia.”

Seek a diagnosis

John encourages anyone worried about dementia to speak to their GP,

“It may sound strange but when I did get a diagnosis it was a relief, as I finally knew what was causing my symptoms and I could learn how to deal with it. All aspects of my life were changing, and I had to find out what was going on. Whether you choose to accept that you have a form of dementia, it doesn’t matter. Unfortunately, it’s going to happen to you anyway, whether you acknowledge it or not. All you can do is just take life one day at a time and get the relevant support that you require.

By coming to terms with your dementia, you can adjust to life as best you can, and possibly access medication to help manage the symptoms for as long as possible. I believe that acceptance is easier than denial, to live with denial is more soul destroying, that’s a simple fact. I had been there for the first few months to a year, then I did something about it.

I would advise anyone who thinks they may have dementia to do something about it and get it looked at. Take steps to get a diagnosis, one way or the other, it is best to know. You will have peace of mind and understand what is happening to you. You’ll have the opportunity to make your own decisions and plan for your future at an early stage, when it is easier to do so and while symptoms aren’t so bad. There are decisions that you must make, legally and financially, it’s best that you participate in making these decisions.”

John would urge anyone living with dementia to get involved with Dementia NI,

“Dementia NI now have groups throughout Northern Ireland, we need to continue the work that we do here. There are a lot of people who now depend on Dementia NI for support and comradeship, so we need your help this Christmas to keep this going. The support we have from the staff and the friendship that we share amongst the members really helps us. It’s like a big family, the encouragement we get from each other is tremendous. We get a lot of peer support, we make each other feel comfortable, and we can meet to share our stories and fears. I would urge anyone with dementia to please get in contact with us because we do have a lot to offer as an organisation. When I see new people joining the Dementia NI groups, week by week I can see their confidence growing and that gives me a lot of pride. I can sit down and share my thoughts and worries with other people who were living in the same position as myself, and that is a great comfort to me.”

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