Your questions answered by people affected by dementia

This Dementia Action Week we invited people affected by dementia to takeover our social media and answer your questions. The theme was #AskUsAnything and this is what they had to say.

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

This 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

Emily lives in Belfast with 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 her 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.

Emily

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.

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.

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

Reframe questions. Avoid using 'W questions' - who? what? when? 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

What’s the best experience you’ve had since Jim's 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.

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

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

Wendy is the award-winning author behind Somebody I Used To Know. She has two daughters, is an Alzheimer's Society Ambassador, and enjoys spending time outdoors.

Wendy

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 end 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

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.

John Kelly

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

The strangest question I've been asked was as 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.

Watch and share our #AskUsAnything video

This Dementia Action Week, help us raise awareness by watching our #AskUsAnything video and sharing it on social media.

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12 comments

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After my lated MRI scan the neurologist wrote' evidence of clusters of[Icannot recall[ but the report went on to suggest that plaques and cognitive decline were to be expected. All sounds a bit inconclusive ,but my daily experience is one of unsteadiness poorr balance shortterm memory loss ,and indicision , also doubts about what tasks I have done in the last moment sometimes forgetting days of the week.

My mother has lucid days when she remembers what happened even the day before, she is more mobile, she is her old self. Not the woman who sit there asking the same thing over and over know very few people and can barely move. Great you'd think, but no. This is the sign she has another water infection and needs antibiotics. This brings back the other woman, but if she doesn't have antibiotics she starts seeing things and has ended up in hospital.
We can't get anyone interested in this, yet it proves she has not lost any of the old memories or abilities, they are just temporarily denied her, is anyone out there investigating this as a lead to potential cure?

My husband has frontal lobe dementia and is now deaf too, so I cannot talk to him anymore. He is very rebellious, controlling like a toddler and blames me for his frustrations.
It started six years ago. He paces and there is much compulsive and repeated activity ie. moving things around,opening, shutting and locking doors etc won’t wash, swears and is sarcastic. Also wanders and has been found by police on 3 occasions. Won’t wear I.D. or take medicine. Unsociable.
I know this is the illness but I am at my wits end now and dread each day dealing with this behaviour. I have no help as he will tolerate nobody else.

My husband is the same Rosalind most days. I care for him on my own also and he does all the same things your husband does. I understand you. Singing for the brain sessions locally is a godsend. He really enjoys them and I do also .

My husband is like Rosalind’s too. He was 47 when diagnosed with young onset Alzheimer’s n is 49 now. He has Frontal Temporal lobe dementia. He is not violent yet but definitely more quick tempered than before. He has lost track of sense of time too. I’m lucky and am very thankful that my 2 children aged 16 n 21 help with the caregiving. I can’t think how else will I manage. 🙏🏻

My 80 year old mum has just been diagnosed with cognitive impairment / dementia and has come to live with me and my husband. I’m feeling very emotional and scared, goodness knows how mum must be feeling. Just found this web site and reading blogs etc is really helpful. Never heard of sing for the brain or memory cafes, soo much to learn and make sense of. Thank you, sure I will become a regular reader.

My wife is 0f 82 years of age, she has dementia and depression, she has gone into her childhood, she believes that all the dead close relative are live and insists to see them, she moves things and also on shoe out of pair , she getting weak bodily and mentely, now she is diagnosed with a lump in left side of her breast

It has helped greatly that people are going through the same experiences and you can identify with them and you are not alone. I care for my mother with dementia and hearing various stories and especially advice received from the Alziemers Society has been tremendous more than I can say.

Can someone please tell me if they are going through the same agonising issue that I am going through at the moment, the care home were my wife resides will not let me have a copy of her care plan, as I need to know that she is getting the care that is needed, I have been on to the CQC and seemed to have been fobbed of ,as they have given the care home poor ratings and am worried about the future of my wife's care. Hope to hear from anyone having the same experience. Thank you.

For older people(may be 80 and above) with dementia and depression or other ailments, surgery may be avoided, instead other options may be considered, most of old people do not recover after surgery

I am in the process of finding around the clock care for my 82 year old mother so she can remain in her own home, next door to me. It is overwhelming, my siblings are little to no help with either care or planning. I am tapping into every available resource. I am hopeful but scared.

We broke the news to my mom, 72, yesterday that she would be moving into a home where she could be safe and comfortable with 24hr care due to her Alzheimer's becoming worse. She has lived with my dad for 52 years. She became angry, but struggled to respond, couldn't articulate her defense or protest. But she obviously understood our words. She cried. We gave her hugs. She looks so different from even 12 months ago. I'm terrified of what lies ahead.

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