Real stories

Your questions answered by people affected by dementia

Alzheimer's Society research shows that two in every three people living with dementia report feeling isolated and lonely. This simply has to change.

For Dementia Action Week we invited you to join the conversation by asking questions—any questions—for people affected by dementia taking over our social media. Read on to see how they answered.

Emily answers your questions on her husband's dementia diagnosis

Emily lives in Belfast with her husband, Jim, who was diagnosed with dementia in 2014. They have 2 daughters and 3 grandsons.

Emily is an avid fundraiser and volunteer for Alzheimer's Society. Both she and Jim regularly attend Singing for the Brain sessions and memory cafes. In her spare time, Emily enjoys crafting (even if she says she's not very good!) and reading.

Question 1: Did you know much about dementia before your loved one was diagnosed?

I knew nothing about dementia. When Jim received his diagnosis, we knew it was bad. It was a very steep learning curve. At that stage, Jim was 66. When we heard the word 'dementia', we thought it was a diagnosis for older people.

Question 2: What’s the strangest question you’ve been asked about Jim's diagnosis?

We've never made a secret of Jim's diagnosis. We've always been very upfront with friends and family about it, but the strangest question we get asked by other people is, 'Does Jim still know who you are?' 

Jim does know who we are, but his dementia with Lewy bodies diagnosis affects him in other ways. His initial symptoms were heightened anxiety and depression, and his logical thinking were badly affected.

Question 3: What can the public do to make life easier for people living with dementia? 

Reframe questions. Avoid using 'W questions' like "who?", "what?", "when?" and "where?".

When I ask Jim questions, instead of asking 'Do you remember when we were in Yorkshire?' I'll say, 'When we were in Yorkshire...'. Make a statement - they can add their experience.

Introduce yourself, as they may not recognise you straight away. For example, 'Hello Jim, I'm Johnny, we used to play football together.' Give your name and put yourself into context.

Question 4: What’s the best experience you’ve had since Jim's dementia diagnosis?

Jim's diagnosis has been a gift to me, but made my hands bleed when I opened it. It has made me appreciate the man I married. He supported me through my Master's degree. He supported our daughters, my mother, my sister when she was ill.

The experiences I've had since Jim's diagnosis have made me stop and appreciate everything in my life. Sometimes we're all so busy living we don't stop to think, to reflect. Jim's diagnosis has given me that opportunity.

Question 5: What celebrity would you like to have dinner with?

If I was going to have dinner with anybody, it would be to get one up on Jim! He saw The Beatles in 1963 and still tells people about that, so I would choose Paul McCartney so I could go home and tell him!

Wendy answers your questions on living with dementia

Wendy was diagnosed with dementia in 2014 - this hasn't stopped her from living a full life.

Wendy is the award-winning author behind Somebody I Used To Know. She has two daughters and enjoys spending time outdoors.

How did your friends react when you told them you had dementia?

Some are supportive, others stopped contacting me - probably due to fear of not knowing what to say. When people hear the word ‘dementia’ they think only of the later stages and forget there’s a beginning and a middle with so much living still to be done.

What makes you laugh?

I’ve always been a 'glass half full' person, so can find laughter very easily. I think personality has a lot to do with how you cope with a diagnosis.

My family and I laugh all the time, and Billy the cat is the height of entertainment. I used to be terrified of cats but now I’ve faced my fears (and many people’s biggest fear by facing dementia), so Billy and I are soul mates.

If the UK became truly dementia-friendly, what change would you like to see the most?

If the UK became truly dementia-friendly, there wouldn’t be a need for people like me to stand up and shout on every platform available. People wouldn't need to sell their houses to pay for care. There would be equality and understanding at all levels.

What achievement in life are you most proud of and would want people to know about?

The biggest achievement so far has to be the release of my book, Somebody I Used to Know. I never imagined it would be such a success and help so many people. I’ve received thousands of emails since it was published, all expressing thanks, which has been very humbling.

Dementia has brought me many amazing opportunities - turning a negative into a positive helps me to cope. And this year I’ve been lucky enough that two universities are giving me an Honorary Doctorate - how amazing is that!

John answers your questions about being diagnosed with dementia

John was diagnosed with dementia five years ago, and you might recognise him as one of the stars of our #AskUsAnything video.

You can watch the video and read his story on our blog, or read on for his answers to your questions.

What’s the strangest question you’ve been asked about your dementia diagnosis?

The strangest question I've been asked was a shocker - 'Do you know when you're going to die?' I was speechless. The person who asked was a retired schoolteacher - I wouldn't have wanted to be one of his pupils!

What’s the best experience you’ve had since being diagnosed?

Travelling around the country, talking and educating people about dementia. Meeting people from all walks of life. Taking part in the #AskUsAnything video shoot was brilliant!

What do you want other people to know about living with dementia?

That they're not on their own. There are so many people living in a dark corner, not knowing that there are other people out there who have the same diagnosis.

What’s the most annoying thing about your dementia?

Frustration - I can get very frustrated, especially when things slip my mind. I'm lucky to have Dawn around to help and support me. She runs a care home - if there's anything Dawn doesn't know about dementia, it's not worth knowing!

What are the things that make you feel happiest?

Listening to stories from other people, when they've hit hard times and they've come through it. Hearing them say they've reached the end of the tunnel and found a light.