Living with dementia and memory problems

In this section we talk to older people who are experiencing cognitive impairment which they might describe as forgetfulness, memory problems, brain fog or more medical terms like dementia, Alzheimer’s and mild cognitive impairment (MCI).

You can hear people talking about their own experiences of living with memory problems and other symptoms of dementia. We spoke to 29 people across England. We also include extracts from an interview with Sir Terry Pratchett which was carried out by researchers at the University of Oxford in 2010.

See a preview of “Living with dementia and memory problems”

Derek
don’t look back, look forward, because you can’t change what’s gone but you can do something to look forward. Because it’s this “why, why did it, why has it come to me?” I don’t take that all.

Lorraine
Learn what our needs are and how to approach us; that’s what I would say. And please don’t treat any of us like idiots and don’t talk to the carers either [laughs] it’s one of the worst things you can possibly do, address your questions to the carer or the husband, the wife or anybody else, don’t, just don’t. If we can’t answer a question we will turn to the person that’s with us and say; you know, I do it quite often, I have really bad word-finding difficulties and I can’t get the word out and I’ll go, I’ll turn round and go, “What’s the word, it’s like such and such but it begins with S?” you know, and that’s fine as well [laughs], Yeah, but don’t, don’t, don’t suppose that you know how to treat us, we’re individuals.

Maxine
And he said, “well there is some cognitive impairment” and there’s only, there’s, the statistics showed that it was about a 50-50 chance, either that it was just Mild Cognitive Impairment, as I get older or it could be dementia and Alzheimer’s probably and the only way to find out was to have a PET scan.

I’ve found that I’m, I find organising things much harder. So, to me, it’s not about memory on its own, at all. It’s, it’s about how we structure and organise the thoughts and I was really struggling to motivate myself to do anything and, and to and to manage doing anything.

Peter
Keep an open mind, ask all the questions you want to ask and make sure that you’ve listened to and understood the answers, and if you haven’t got the whole information, go back and ask again and don’t be frightened of doing it.

Phil
You’ll wake up the following morning and still be the same person and you just come to, just get on with it day-by-day. It’s the old adage of if you want to eat the elephant you don’t eat it all at once, just eat it in little bits.

Robert
Try and keep busy, get something to do, keep you occupied, and think about, you know, think about things that you used to do; get your family together, if you have got them, and have a good laugh about things that you used to do or that you think was stupid [laughs] yeah, just keep busy. Join a group, walking group or even a group that play some games or the other.

Pat
I think it is good to be happy, you know, and try and get someone else to be happy if they’re sad. It’s, it’s always nice to help someone else, and I’ve been helped by people and it’s, it’s wonderful. Mum and dad taught us that.

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People we spoke to felt that their problems were significant enough to reach out to professional services for help. For some people that meant seeing their GP and being referred to a memory clinic for a formal diagnosis. Others looked for more informal help from ageing groups, memory support or Alzheimer’s Society and similar charities. One person did not want to face their concerns of having memory problems so they did not tell friends or family. Instead, they registered with a dementia research hub in the hope of finding out more about their condition.

This project funded additional interviews for the Carers of people with dementia section which you may also find useful