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.

Outlines

00:00

😔 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.

05:06

📝 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.

10:06

🧠 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.

Keywords

💡Dementia

Dementia is a general term for a decline in cognitive ability severe enough to interfere with daily life. In the context of the video, it is the central theme as the interviewee, a 93-year-old man with Alzheimer's disease and vascular dementia, discusses his experiences and challenges with memory loss. The term is used to describe the collection of symptoms that affect the individual's ability to remember and perform tasks.

💡Alzheimer's Disease

Alzheimer's Disease is the most common form of dementia, characterized primarily by the progressive degeneration of brain cells, leading to memory loss and cognitive decline. The interviewee mentions his diagnosis of Alzheimer's disease, which is a significant part of his experience with dementia as it affects his memory and daily functioning.

💡Vascular Dementia

Vascular dementia occurs when the blood supply to parts of the brain is affected, causing brain cells to be deprived of oxygen and nutrients. The interviewee's diagnosis includes symptoms of vascular dementia, which adds to his memory issues and is mentioned as a contributing factor to his cognitive challenges.

💡Memory Loss

Memory loss is a common symptom of dementia, where an individual has difficulty remembering information, events, or people. The transcript frequently refers to the interviewee's struggle with memory loss, which he describes as 'short term memory loss' and 'a memory lapse,' affecting his ability to recall recent promises or events.

💡Irritation

Irritation, in the context of the video, is the emotional response the interviewee experiences due to his memory loss. He describes it as the best word to express how he feels about his inability to remember, indicating that it causes him frustration rather than physical pain.

💡Timeline

The concept of a timeline refers to the sequence of events or memories in an individual's life. The interviewee mentions the difficulty he has with forming a timeline due to his memory loss, which affects his ability to recall past events and their order.

💡Adaptation

Adaptation in this context is how the interviewee copes with his memory loss symptoms. He talks about making lists and using a notebook to write down urgent tasks, which is his strategy to adapt to his condition and maintain some level of organization.

💡Expectations

Expectations are what others anticipate or predict one might do or achieve. The interviewee suggests that people could make living with dementia easier by not expecting too much from him, indicating the need for understanding and reduced pressure due to his condition.

💡Diagnosis

Diagnosis is the identification of a disease or condition through examination and testing. The interviewee's experience with receiving a diagnosis of Alzheimer's disease with vascular issues is discussed, highlighting his reaction and the process that led to the identification of his condition.

💡Misconception

A misconception is a belief or idea that is incorrect or not based on fact. The interviewee addresses a common misconception about dementia, clarifying that it does not mean forgetting everything, but rather having broad memories with specific details missing.

💡Symptoms

Symptoms are signs or indications of a disease or condition. The video discusses various symptoms associated with different types of dementia, such as language skills, hallucinations, confusion, and social inappropriateness. The interviewee, however, primarily experiences memory issues as his main symptom.

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.