Interview with John – a person living with mixed dementia
Summary
TLDRIn 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.
Outlines
😔 Struggling with Memory Loss
The first paragraph introduces the podcast and the speaker's personal struggle with short-term memory loss due to Alzheimer's disease and vascular dementia. The speaker, a 93-year-old grandad, expresses the distress of not being able to remember recent events or promises made, which leads to irritation and a feeling of being unable to fulfill obligations. He also discusses the difficulty of recalling past memories, including those of his sister Molly, who passed away 40 years ago, and how the war affected their relationship. The speaker's coping mechanism involves making lists but then struggling to find them, highlighting the daily challenges faced by those with dementia.
📝 Adapting to Memory Loss with Organization
In the second paragraph, the speaker shares his adaptation strategy to deal with memory loss by using a notebook to jot down urgent tasks, which he keeps in a specific drawer to ensure he can find it. He emphasizes the importance of not expecting too much from him due to his condition. The paragraph also covers the speaker's experience with his dementia diagnosis, which included written tests and a brain scan, and his reaction to the diagnosis. He admits to feeling lost, not in a physical sense, but in terms of having gaps in his memory and identity, which affects his ability to recall specific details of his life experiences.
🧠 Understanding Dementia's Impact on Identity and Individuality
The final paragraph delves into the misconceptions about dementia, clarifying that it does not necessarily lead to the complete loss of memory but rather to the inability to recall specific details. The speaker emphasizes that dementia affects different people in various ways, depending on the type and extent of the condition. He also touches on the uniqueness of each individual's experience with dementia, just as no two people are identical, even when they are young and mentally sound. The paragraph concludes with a reflection on the importance of recognizing the individuality of those living with dementia.
Mindmap
Keywords
💡Dementia
💡Alzheimer's Disease
💡Vascular Dementia
💡Memory Loss
💡Irritation
💡Timeline
💡Adaptation
💡Expectations
💡Diagnosis
💡Misconception
💡Symptoms
Highlights
The most distressing aspect of dementia is the inability to remember actions taken, even as recent as 10 minutes ago.
Dementia is characterized primarily by a lack of memory and control over one's actions.
Memory lapses prevent the completion of tasks promised for the next day, causing irritation.
The individual does not find dementia to be physically painful but rather a discomfort problem.
Memories of the past, including close family members, are also affected and can be poorly recalled.
The formation of a timeline is disrupted, affecting the individual's ability to remember dates and events.
Adapting to memory loss involves making lists, but the challenge is remembering where the lists are placed.
A solution to the list issue is using a dedicated notebook and a specific drawer for consistent placement.
People should not expect too much from those with dementia to make living with it easier.
The individual was not surprised by the dementia diagnosis, as memory loss had already been experienced.
Dementia is not just about forgetting everything; it's about having broad memories with missing specifics.
Different types of dementia can cause a range of symptoms, such as language issues, hallucinations, and confusion.
The individual with dementia does not feel disabled, except for memory issues and some physical limitations.
Dementia is a collection of symptoms, and each person experiences it differently due to the uniqueness of their brain.
The individual emphasizes the importance of recognizing that no two people, including those with dementia, are identical.
Transcripts
the most distressing thing in my life is that i can't remember what i did
never mind 10 years ago 10 minutes ago and it's short term memory loss is really very distressing
hello and welcome to another dpuk podcast my name is josie and i'm the communications officer
for dementias platform uk. today i'm speaking with my grandad who is 93 years old and has a diagnosis
of alzheimer's disease with some symptoms of vascular dementia.
today we're talking about his experiences of dementia. what does the word dementia mean to you?
as far as i am concerned my dementia problem is a memory one in my brain and that's about
it. dementia comes down to a lack of memory and lack of ability to control what i'm doing
or what i want to do or what i ought to do. what kind of things does it stop you doing?
well it's all down to memory i can't do tomorrow what i promised to do today because it's just gone
it's a memory lapse now it's not painful it's not a body you know i've got body things like this of
course but that's a minor thing they're minor discomforts compared to the fact that i haven't
the ability to do things that i felt i ought to do that i wanted to do that i promised to do.
and how does that make you feel? irritated. i think irritation is about the best word i can find
to describe it it's irritating not that painful i mean it is in a sense it's painful because
but it's not painful like i've got a broken leg i would call it discomfort problem. do you find
that memories that are more in the past are easier to remember than more recent things?
i need to think about that no my memories of the past are pretty poor because i don't remember my
immediate close family very much i'm very attached to my sister molly and i can hardly remember
anything about her. and she died about 40 years ago. that's right she was two years older than me
and of course it doesn't help probably that we were separated during the war we were both
can't see what the word is now we were she was evacuated with evacuation we were evacuated. so
you didn't get to make many memories with her no that's right i didn't i saw very little of her
so i have very immature memories of my sister which was just dream because she was a lovely
lovely girl you knew molly didn't you? no you didn't know molly. i wasn't alive at the time.
oh wow they were i can't you see something like that dates i ought to remember i ought
to be aware of that but as i speak to you i'm not. so it's not just memory it's the whole
kind of formation of a timeline really? that's well i guess that's true i guess that's true.
how have you adapted to your symptoms of memory loss? i make all these lists of things to do
and then i forget where i put them so and that drives me about then i go to opening drawers
i've got my office upstairs and drawers here drawers in the kitchen
and i spend hours pulling up drawers saying where the hell did i leave that bloody list?
so how have you overcome that? i'm getting a bit more organized now because
let me show you i got a little notebook and i put in urgent things because i probably wouldn't
remember unless i had them written down this is very recent because it's been driving me bonkers
so i've got a little notebook and i've got a little drawer beside me where i sit and i put it
in that i know where to find it that is the only solution i have found. what do you think people
could do to make it easier for you to live with dementia? they could not expect too much of me.
how did you feel when you were diagnosed with dementia? i don't know i ever was
i don't know that i ever had a doctor who said you've got dementia.
well i was with you. all right then tell me you tell me what the doctor said to me.
so you did some tests with her you did a written test and had a brain scan
and then she said that you have alzheimer's disease with some vascular issues so not all
the blood's properly getting to your brain. right i couldn't believe i could imagine that.
and from my memory you weren't surprised because you'd already been experiencing the memory loss
and you didn't take it badly. i think it was what i expected that's my memory of that i
think yes so in fact you know i'm not telling you anything that you weren't already aware of.
well i was more interested in how you felt because you know my perception of how you're feeling
may be different to how you were actually feeling. yes well i've told you very very simply
how i'm feeling i'm feeling lost and by lost i don't mean in the middle of
the desert i mean i don't think i do i don't feel i remember who i am i think i remember my
with reservations i remember the life i've led and the people i've met and where i have been to but
with big holes where i have forgotten. if somebody said have you ever been to south america i'd say
yes of course i have then tell me what you did and where you were and what oh i don't remember.
i guess there's a common misconception with dementia that you forget everything and that's not
the case. no that isn't true that is very very far from truth. so is it that you can remember broadly
but you can't necessarily pick out the specifics? that is precisely the point yes.
is that the only symptom you experience or are there other things? don't think so no do other
people with dementia have other problems that they struggle to cope with because of dementia? yes so
there are lots of different types of dementia and so that gives people lots of different symptoms
for example there are some forms of dementia that really affect people's language skills
some people have hallucinations and some people get confused more easily
and have trouble with other thinking skills like planning and decision
making then another type can make people act perhaps inappropriately so say things that
aren't socially acceptable so things that are a bit rude or something because they've lost
the inhibition part of their brain. i don't think so no it's a memory thing as far as i'm concerned
it's a memory thing i'm not disabled i can okay i limp a bit but because i've got bits of my body
a bit battered but that isn't a big problem the big problem is my memory i don't think
i have your definition of dementia. well so dementia is a collection of symptoms so
you could experience lots of symptoms you could just experience some of them like
for you it's just the memory. that is exactly it. but because everybody's brains are different each
person with dementia will experience it slightly differently. yes well of course i guess so but
the world is full of people who are everybody is different when no two people are identical
even when they're young and sane
they're not the same. very true so why should people with dementia be any different? indeed.
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