Local activist Gina Shaw champions campaign to create a dementia friendly society

The word ‘dementia’ carries a power in itself. The spectre often clouding realities. The image many of us have is not one that could easily be associated with Gina Shaw. She is, however, well aware of common misconceptions and has focussed her time since her own diagnosis on challenging them.

By Paul Tarpey - 19/3/2015

My introduction to Gina involved a woman moshing to her son’s band in a dingy club. Her passion for music only matched by a commitment to political change. She was at anti-Vietnam war marches at the age of 15 and went from wearing CND badges at a very young age to becoming co-chair of Merseyside CND. A position she still proudly holds. She also visited Greenham Common as often as a young family would allow. It was here that music and politics forged a mutually beneficial alliance.

“Music and politics can go hand in hand. At Greenham Common we used to circle the base and sing songs. I think it is a good way of expressing political thoughts and a way of changing peoples’ minds. It has become even more of an ally to me now. If I feel agitated it can soothe me.”

Music and politics seemed perfectly balanced when she took centre stage in a national ad for Dementia Friends. Her rendition of ‘A Little Help From My Friends’ seemed to have requited a long term love of The Beatles and John Lennon in particular. It also provided a genuine sense of humanity as several celebrities were casually overshadowed by Gina’s vocal. She is now a leading campaigner for the organisation that aims to provide people with a clearer idea of the nature of dementia and how they can help. This moment of affirmation seemed a long way away when Gina was pushing her doctors to take her seriously as she first realised things weren’t as they should be.

“I had been going for months to my GP and saying I thought something was wrong. They would do a short test and then tell me not to worry.”

She was eventually told there was a level of vascular dementia but still found people trying to reassure her when what she was demanding was clarity. Her persistence continued until she was referred to a consultant at Mossley Hill and then things moved quickly.

“His glasses went down and he said; ‘you’ve got Alzheimers’. And that’s what I needed. It was like something was lifted from me. Now I knew what was wrong I could start to deal with it.

“They should definitely listen more carefully to people. There was no reason why the whole process couldn’t have started earlier. If you feel something is wrong then you have to keep at it.”

With the diagnosis and the right treatment Gina had been given the means to fight, but a major obstacle needed to be faced as she had to relay the diagnosis to a close knit family.

“Family is at the core of what I am. Especially at the moment because it’s them who have been helping me. I was worried at first whether I could still be a mother to my kids. We have always been supportive of each other and the hardest thing I had to do was tell them. It was very emotional. I have always been strong for them and thought they may not come to me anymore. But they did. Nathan, my son, has become one of my carers. He has been with me on a couple of adventures and has been so good. He is usually a bit scatty but when he is with me he is totally focussed. The important thing though is that I know I have got it and am happy I have the tools to deal with it.”

Gina also faced the challenge of how a life spent caring for others could allow her to become the one in need of care. The changing role in her family had been reflected in her work.

“I was a paediatric Nurse and I loved it. I was really active in every aspect as a rep for Royal College of Nursing and later Unite. When I realised I wasn’t functioning well enough to do my job that was one of the most difficult moments I can ever remember. Nursing is my life. That was the only point I got really down and started to think my life was over. I wasn’t sure I could lift myself out of it.”

She soon found, however, that her natural flair to fight for others could still to be a huge part of life. If the politics were not so clearly defined her belief in equality was needed more than ever.

“There isn’t any equality in the treatment of dementia. There are various places that work with people with dementia and each one works differently. I am under Mossley Hill and the care we get far outweighs what you get at other hospitals. The staff there are second to none but I know we are lucky.

“It is all mainly about money. They are given a set amount of funding and they have to decide how to use it. Other hospitals may put that money into care for cancer. I would not want to be making those decisions but it shouldn’t have to be a choice. Everyone should have the resources they need. For the time being though there is certainly a lot more that can be done. The cure wins the prizes and you don’t get awards for helping people live better but sometimes it is the small steps that really count.”

It was clear that everything that had given her life meaning could remain as strong as ever provided the process was more considered.

“Most people are surprised I can still go out and speak at meetings. I just have to be more meticulous. I need to keep a very strict diary. I may wake up knowing in the back of my mind that I have something to do but I can never remember what day it is. So I have a proper wall planner. At the end of the day I have to cross things out because I won’t be able to remember any of that without that support.”

Her work with Dementia Friends has seen some level of awareness growing but she believes a truly dementia friendly attitude would provide a much more telling change in society.

“It would be fantastic. It wouldn’t just help people with dementia because the idea is to be kind, careful and considerate of each other. If you see someone struggling ask if you can help. A lot of people living with dementia have trouble getting on and off buses or trains. People are found wandering around lost because no one has been there to help them. A dementia friendly society is just people looking after one another. Virgin trains have made all their staff dementia friends and the buses are intending to do the same. But we need everyone to do it. I go to talk to children in schools and they are so lovely and supportive. We need to start with children because they already have that compassion.

“Another thing that can really help is signs to show were you are supposed to go. Colour is important as it can affect your visual perception. For instance if a carpet has a black mat on it you might see that as a gap in the floor. Stairs can be a nightmare because if it is the same colour you may not see where the steps go down. One of our other biggest problems is shops. If they could just slow down it would be great. We are going to campaign for a social queue where you can have a chat and no-one is going to rush you. In Holland they have communities where everything is Dementia friendly. We are way behind that.”

The work of Gina and Dementia Friends has focussed on changing attitudes and perceptions but her past experience in politics has told her that it is those in power who really need to change their way of thinking.

“It needs the political will. In Liverpool the Lord Mayor is very supportive. She and her daughter are Dementia Friends but it is the council we need to get on board and they haven’t made any real inroads.

“We went to the Houses of Parliament and spoke to MPs which might have been a waste of time but I felt quite empowered that we could do that. The biggest thing was they saw that we were very capable people. I think they were shocked at the level we were conversing with them. It would be great to have real political change on a national level but it is all lip service at the moment. We need a lot of real input to help us to help others. We need a change from Government to provide better services for people with dementia because there is going to be a lot more of us.”

As Gina proves political will and a passion to help others need never be dimmed by circumstance.

www.dementiafriends.org.uk

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