Episode 2 - Emotions
In this episode we talk with a health care professional and people with lived experience about the emotional journey of the diagnosis process, changing emotions caused by changes in the brain and how to cope with these emotions .
Narrated by MDFR presenter Roger Hill
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Roger Hill (Host)
Hello, and welcome to The Dementia Download, a monthly documentary podcast covering all aspects of the dementia experience, brought to you by MDFR.
We want this podcast to be useful for everyone in the dementia community, wherever you might be. Because we're based in Merseyside, some information, resources and services might vary depending on where you are. It's always a good idea to check with your local healthcare providers to make sure you're getting what's best for you and your loved ones.
We'll also share some telephone numbers and websites towards the end of the show to help you find more information.
This episode will walk us through the emotions that can surface in response to a dementia diagnosis, ranging from denial and grief to relief and hope for the future. Nobody’s journey with dementia is identical, but we hope the examples from today’s episode—shared by a healthcare professional and people with lived experience—offer information, comfort and a deeper understanding of the emotional impact dementia and its diagnosis can have.
The first person we'll hear from is Andi Jaeckel, a clinical psychologist working for the NHS in Merseyside who specialises in dementia.
Andi Jaeckel (Clinical Psychologist)
I think one of the things to know is that the way we experience emotions—and the control we feel we have over them—can change as a result of changes in the brain.
People don’t necessarily think about dementia as affecting emotions or feelings. They tend to think about how it affects memory or thinking. But that might not even be the first thing you notice.
As the brain changes, we might experience emotions differently.
One thing people can experience is apathy. It’s not that nothing matters—it’s that things may not feel as strong as they once did. You may feel less motivated, or find it harder to start activities you used to do easily. You might also lose interest in things you previously enjoyed, though not necessarily all of them.
Another common experience is low mood or anxiety. This isn’t necessarily because you are depressed—it can simply be how the brain is changing. These emotions can be mistaken as a response to the diagnosis, but sometimes they are directly caused by those brain changes.
People can also feel more irritable or frustrated. Things that used to be easy may now require more effort, and the brain may find it harder to manage emotional responses. So reactions can feel stronger or seem to come out of nowhere.
Roger Hill (Host)
Next, we’ll hear from Audrey, who cared for her husband Tom, who was diagnosed with dementia in 2019.
Audrey
He was a kind gentleman, and with me he was wonderful—we had a good relationship. But he became agitated easily.
He would still do little jobs, like things in the garden, and he knew how to use tools. He’d say, “Go and get me that thing—it’s blue and metal,” and expect me to know what it was. Then he’d get annoyed when I didn’t. That was so unlike him.
Roger Hill (Host)
Our next guest is Pete Middleton, a dementia activist and writer living with Alzheimer’s disease.
Pete Middleton
I become very emotional very easily now. I can burst into tears if I hear music that resonates with me. Or I get so excited that it gives me goosebumps.
I can watch a film and be brought to tears—something that never happened before. At my daughter’s wedding, I had to leave afterwards because I was crying so much. I didn’t want to take attention away from her day.
It comes very easily to me now. It didn’t before.
Andi Jaeckel
As the brain changes, our ability to control emotions is reduced.
So you may cry more easily or laugh unexpectedly. It might not mean you’re more emotional—it just means you can no longer hold those reactions back in the same way.
In some types of dementia, particularly frontotemporal dementia, people may speak more directly or lose that internal “filter.” They may also find it harder to read social situations.
It’s important to remember: it’s not you—it’s the changes in your brain. People around you need to understand that.
Audrey
On a holiday, Tom called a cabin crew member over because his tray wasn’t straight. He said his dinner might spill.
I was embarrassed—but the crew were very kind.
Andi Jaeckel
Some people may appear emotionally flat—less reactive than before. That can be difficult for loved ones to see, but it doesn’t mean the person has changed at their core.
You’re still you. You still care about the same people and things—but the way those feelings are experienced or expressed may change.
Roger Hill (Host)
Now let’s consider the emotions caused by a dementia diagnosis.
Andi Jaeckel
Feeling afraid or anxious is completely normal. That would be true of any serious diagnosis—physical or mental.
People worry about the unknown—what’s going to happen, what it means, whether they’ll lose independence.
Other common responses include grief, anger, frustration or denial. Essentially, whatever you feel is a normal response.
Roger Hill (Host)
Nat Gavin, producer of this podcast, shares his experience as a family member.
Nat Gavin
When my mum was diagnosed, I didn’t find out straight away. Looking back, there were hints I missed.
When I did find out, my dad told me while I was clearing out my old bedroom. I felt numb at first, then I took it very badly. I went into a depression for a while.
I didn’t really understand dementia at the time—my only experience was visiting my great‑grandmother in a care home. My mum had always said she’d get dementia someday, so it felt very heavy and real.
Andi Jaeckel
Some people feel relief when they get a diagnosis—finally understanding what’s been happening. Others may feel validated: “I knew something wasn’t right.”
Both responses are completely normal.
Pete Middleton
For me and my wife Pam, the overwhelming emotion was relief.
After two years of uncertainty and misdiagnosis, we finally had clarity. Yes, it was a shock—but also a relief.
But that’s just the beginning. After that comes a mix of emotions—fear, anger, grief. It’s like a grieving process.
We realised we needed to act. We got informed, made plans, sorted legal matters, spoke to family. That gave us purpose.
I’m seven and a half years into my diagnosis now and still going strong. I focus on what I can do, not what I can’t.
Roger Hill (Host)
Gina Shaw, a dementia activist, shares her perspective.
Gina Shaw
When I was diagnosed, I was upset at first. My grandmother had dementia, so I feared the worst.
But I discovered that life goes on. I’ve had a really good time—met new people, had new experiences. I’ve made new friends.
Who would have thought you’d get new experiences after a dementia diagnosis?
Roger Hill (Host)
Some people even feel hope and determination after diagnosis.
Andi Jaeckel
Hope can come from knowing what’s happening and being able to take action.
Many people go on to live meaningful lives, experience joy and even achieve amazing things after diagnosis.
Nat Gavin
We were told early on that dementia doesn’t mean the end. My mum went on to become a campaigner, speaking at conferences and travelling.
Not everyone will take that path—but it shows that life continues.
Roger Hill (Host)
Let’s look at some ways to cope with these emotions.
Andi Jaeckel
Emotions change over time. What feels overwhelming now won’t necessarily feel the same in a few months.
It’s helpful to connect with what matters to you—your values, your relationships, your interests.
Distraction can help too—go for a walk, watch something, spend time with people, find humour.
Mindfulness techniques can also help you step back from difficult thoughts and let them pass rather than holding onto them.
If you feel overwhelmed, talk to someone you trust or seek professional support.
Pete Middleton
After my diagnosis, my wife and I made a plan together.
We educated ourselves, talked openly and focused on what we could do. That gave us a sense of achievement and purpose.
You’ve got to keep moving forward—because the alternative is giving up.
Roger Hill (Host)
While a dementia diagnosis brings challenges, there’s no single “correct” emotional response.
With time, even the hardest feelings can soften into something more manageable. For many people, a diagnosis can even mark a new beginning.
Thanks to Andi, Audrey, Pete, Nat and Gina for sharing their experiences.
For support, you can contact the Age UK helpline on 0800 678 1602, or visit dementiauk.org and alzheimers.org.uk.
The Dementia Download was presented by me, Roger Hill, with a script by Alicia Riley and produced by Nat Gavin.
Bye for now.
