Q&A: Anita Goundry, who lives with Alzheimer’s and vascular dementia

What’s changed most since your diagnosis? 

Acceptance and determination. First acceptance – I was relieved to know what was wrong, that I wasn’t going mad and it wasn’t ‘the change’. Then determination for it not to stop me living life to the full. 

I wouldn’t have managed this without Alzheimer’s Society and their support workers. I don’t mind having Alzheimer’s and vascular dementia – it doesn’t define who I am, it is just a part of me.

What would you take to your desert island? 

A survival book, to keep me busy and alive. It would make the time fun rather than frightening. 

I don’t like being on my own but, if I had to be, then I’d want to be busy. I’d eat, have shelter and warmth… and the fire would keep animals away! 

How has Alzheimer’s Society helped you? 

They’ve been helpful in so many ways. If it hadn’t been for them, I still wouldn’t understand my diagnosis. They went into detail about how it could affect me, and what parts were from which condition. 

They’ve provided support for myself and all my loved ones, and we’ve been able to contact them any time for advice. They’ve supported me through depression, and my family though fear – they didn’t know anything about dementia. If it hadn’t been for them, my family would have crumbled. 

You’re given a diagnosis and you’re left, especially with young-onset dementia because it’s all geared towards older people. In County Durham there’s nothing for young-onset dementia. 

3NDWG (the 3 Nations Dementia Working Group) has been brilliant too, and I’m trying to set up a young-onset dementia support group for County Durham, with help from Alzheimer’s Society. 

What song or tune sums up your life so far? 

I Am What I Am, by Gloria Gaynor. It just says everything about my life. It doesn’t matter what life deals me, I will adapt, overcome and survive – big, loud and proud! 

What single thing would improve your quality of life? 

The way medical personnel are trained in dementia. From diagnosis to medical review, the whole ship and shebang. 

Medical students get one day’s training for dementia, but weeks for other things. Dementia has such a big impact, it’s not right. 

For GPs, there really should be better training, as they’re the first point of contact. Especially for young-onset dementia, where it’s often confused with menopause, with depression, anxiety and stress, or put down to ‘women’s problems’. I had to fight for four years for my diagnosis. 

If you could go back in time, where would you go? 

I wouldn’t. I like me and so I wouldn’t go back in case I changed things. I might not be me anymore, or I might not have had my kids. I love my life and my family, I’m proud of my strengths and even my weaknesses. 

What is your most treasured possession? 

Apart from my loved ones, my photo albums. I’ve got pictures from when my grandmother was a child right up to last week. I’ve started adding text to them with names, dates and little things I remember like ‘Uncle George’s tickly ’tache’. 

Even if I can’t remember people’s names, I’ll still be able to enjoy them. I’ve got nearly 100 years of photos to add text to! It’s also a legacy for my kids.