Interview with John – a person living with mixed dementia

Summary

In this poignant DPuk podcast, 93-year-old Josie's grandad, diagnosed with Alzheimer's and vascular dementia, candidly discusses his experience with dementia. He describes it as a memory problem, affecting his ability to fulfill promises and causing irritation. Despite struggling with short-term memory, he retains some long-term memories, albeit with gaps. His coping strategy involves writing down urgent tasks in a notebook to counteract the forgetfulness. The conversation highlights the misconception that dementia patients forget everything and emphasizes the unique experience of each individual with dementia.

Takeaways

• 😢 The individual experiences distress due to short-term memory loss, which significantly affects their daily life and ability to fulfill promises.
• 🧠 The person defines dementia primarily as a memory problem, simplifying it to a lack of memory and control over actions.
• 🚫 Memory loss hinders the ability to keep commitments, causing feelings of irritation rather than physical pain.
• 🔍 The person finds it difficult to remember even close family members from the past, indicating the severity of their memory issues.
• 📝 Adaptation to memory loss involves making lists, but the challenge remains in remembering where those lists are placed.
• 📒 A solution to the list issue is using a dedicated notebook kept in a consistent location to aid recall.
• 🤔 The person reflects on whether past memories are easier to recall than recent ones, but finds that even past memories are poor.
• 👴 The individual's diagnosis of Alzheimer's disease with vascular issues was not a surprise, as they had been experiencing symptoms.
• 😐 Upon receiving the diagnosis, the person did not react with strong emotions but accepted it as an expected outcome.
• 🗺 The person feels 'lost' in terms of memory gaps, unable to recall specific details of past experiences despite having a broad recollection.
• 🌐 Dementia is acknowledged as a spectrum with various symptoms, affecting different people in unique ways, and not everyone with dementia experiences the same issues.
• 💡 The person emphasizes that dementia is not about forgetting everything, but rather about the inability to recall specific details within broader memories.

Q & A

What is the main issue the speaker is facing with their condition?

The speaker is experiencing significant short-term memory loss, which they find very distressing.

How does the speaker describe their dementia?

The speaker describes their dementia as a memory problem in their brain, affecting their ability to control their actions and remember promises.

What does the speaker find particularly irritating about their condition?

The speaker finds it irritating that they can't remember what they promised to do, as their memory lapses prevent them from fulfilling their commitments.

How does the speaker's memory affect their daily life?

The speaker's memory issues prevent them from doing what they want or ought to do, causing them to feel lost and unable to form a clear timeline of events.

What strategy has the speaker adopted to cope with their memory loss?

The speaker has started making lists and keeping a notebook with urgent tasks written down, placing it in a known location to help them remember.

What is the speaker's relationship with their sister Molly, and how does memory loss affect this?

The speaker is very attached to their sister Molly but struggles to remember much about her, despite her significant place in their life.

How does the speaker feel about their diagnosis of Alzheimer's disease with vascular issues?

The speaker was not surprised by the diagnosis, as they had already been experiencing memory loss, and they took it as something they expected.

What misconception about dementia does the speaker address?

The speaker addresses the misconception that people with dementia forget everything, clarifying that they can remember broadly but struggle with specifics.

How does the speaker feel about their identity and life experiences due to dementia?

The speaker feels lost and acknowledges that while they remember their life and the people they've met with reservations, there are significant gaps in their memory.

What advice does the speaker have for others to make living with dementia easier?

The speaker suggests that people should not expect too much from them, understanding that their memory issues limit their ability to perform as they used to.

How does the speaker differentiate their experience of dementia from others?

The speaker acknowledges that dementia affects everyone differently, emphasizing that their primary issue is with memory, not other cognitive functions or physical abilities.