My name is Bruce Perram I'm a councillor with Alzheimer's Victoria
Today I'm going to have a discussion with Anne Unkenstein who is a neuropsychologist
at Melbourne Extended Care working in the Cognitive Dementia and Memory Service.
Anne, can you tell me a little bit about your work at the CADMS unit?
The CADMS unit is one of many across Victoria.
They're units for people who come in when they're having trouble with their memory and
the CADMS just stands for Cognitive Dementia and Memory Service.
And people are often referred in by their GP to come to the clinic or sometimes they
come in themselves because they're worried about their memory.
And when they come into the clinic they see various health professionals really just to
check how they're going with their memory and hopefully to help them understand what's
causing any changes and give some ideas to be helpful with the memory problem too.
Anne could you describe to me how our memory works?
I think it's important not to think of memory as just one thing first of all.
It's made up of lots of different processes so we can't get away with saying my memory
is hopeless because usually if there is a problem with memory it's only some parts
of the process.
So it's probably worth going through just a simple model of memory to help us understand
which parts of memory might change with various illnesses or getting older.
So if we think about an example you might sort of go to a party and meet someone and
they say hello my name is Anne Unkenstein for example and the first thing you have to
do to try and remember my name is to use your senses to register that information so hearing
obviously is very important and seeing the person talking.
Once you've registered the information you then take it into what's sometimes called
your immediate memory store which is when you just process the information to take it
into memory.
Then to get it to stay in there for later you need to process it in a more enriched
way.
You need to go over it in some way so you might repeat the person's name over and over.
You might say the name repeatedly or you might link it to another name that you've got in
memory already or you might think oh that sounds like something or she looks funny in
some way and you process the information to get it into what's called recent memory or
sometimes people call that short term memory.
And then later if you met me down the street and you saw me again and you wanted to remember
my name you'd have to retrieve it from recent memory using some of those processes that
you'd used for getting it in.
Then if you'd met me sort of once a week for many years at a group for example the name
my name would go into a much more longer term memory store which could be called lifetime
memory or tertiary memory.
That just gives you an example of the fact that we have some memories that are stored
in really long term memory, lifetime memory, things that we've learned when we were younger
at school, at work, hobbies, that sort of thing and other memories are much shorter.
So that's just a quick way of looking at how memory works.
What memory changes do people often experience at the onset of dementia?
With dementia it's usually the short term memory part of the process that becomes affected
and you'll hear people say I keep forgetting where I've put things or I've forgotten to
take my medication.
I think it's important to clarify the difference between the sort of short term memory changes
that you experience at the beginnings of dementia compared to the frustrating short term memory
problems that we all experience from time to time especially as we get older.
If we think first of all about just what are the normal changes that happen as we get older,
again it's usually short term memory.
There's been a lot of research done on how your memory changes as you get older.
We've got a much more positive outlook on that than we had say 50 or 60 years ago when
it's a bit more doom and gloom and we know that some people don't even notice the changes
that happen as they get older, others do so there's a lot of variability from person to
person.
The sort of trends in the research that have come through point to three or four things
that can happen.
One of them is that very early part of remembering which is paying attention.
As people get older they find that they can't process more than one thing at a time as much
as they used to when they were younger.
An example of that an older friend of mine talks about when she was younger she could
be cooking a complicated meal, the kids were in the kitchen doing their homework and she
was helping them and she was also listening to a radio program at the same time but now
she finds if she has to remember how to cook that meal the kids have to be out of the kitchen
and the radio has to be off so she can concentrate.
So it's that initial phase of paying attention that can let us down a little bit more as
we get older.
There's also a problem with speed of remembering, of getting new memories in to memory storage
and getting them out when we want them and that can lead to that tip of the tongue problem
that we all have.
A lot of the research says that as we get older that naturally starts to happen a little
bit more that we have that sort of problem getting the particular word that we're thinking
of.
It's not just all due to getting older that people experience fluctuations in their memory.
Often I'll see people at the clinic who come in because they're really worried about their
memory being good one day, bad the next or all of a sudden their memory got worse and
usually it's the case that they've had some sort of change in their health or the way
they live their life.
For example someone who came to see me recently, a primary school teacher was very stressed
with some things that were happening at school and actually had become quite depressed and
she was finding that she couldn't remember her work well enough to teach properly and
really it wasn't because she was getting older, it was because she had the tension and the
depression that she was suffering with and that was affecting that very first stage of
memory which is when you have to pay attention.
Once a person is diagnosed with dementia can you give me an outline of how that is likely
to change over time?
The memory change is happening because the part of the brain that helps people remember
is I guess you could say being attacked by the disease.
So the messages that the brain cells are sending each other in the memory centre of the brain
are going haywire and making a person's memory unreliable.
There's a part of the brain that's almost like a record button on a cassette recorder
called the hippocampus which is deep in the centre of the brain and it's that part that
in the very early stages of Alzheimer's disease gets attacked by the disease so that it means
people have trouble recording new information and that's why it's that short term memory,
you know like someone has just said something and they've forgotten it or someone's just
put something down and they've forgotten where they've put it because their brain's not allowing
them to remember it.
And is that the most common beginning for people?
Yes, yes and it's like it's similar to normal ageing which is often why it's really hard
to diagnose dementia in the very early stages because it's just like normal forgetting but
it's more significant and often a way of describing the difference is that it affects a person's
day to day function so they're not doing things as well as they had been doing in the past.
One daughter of a lady that I'm seeing next week was telling me that she's worried about
mum because mum's always been diabetic and measured her blood sugars and done her own
insulin but recently she's been mucking that up and it's not like mum to muck that up so
with dementia it's more significant things, it's things that people in the past have been
able to do quite well but now they're forgetting.
This daughter might have rung her mum and said we've got an appointment at the doctor's
tomorrow will you get ready for it and then she'll arrive to pick mum up and you know
what appointment, that sort of thing.
So they're the type of very early changes that can happen with dementia.
Can you tell me what would be the most common diagnosis that would come through your clinic?
Obviously the word dementia is like an umbrella term and that means that a person has thinking
problems that are affecting their day to day life and there are different causes of dementia.
The most common cause by far is Alzheimer's disease and then I'd say the second most common
cause would be vascular dementia.
So once someone has been diagnosed with Alzheimer's disease or has been diagnosed with vascular
dementia can you just tell me a bit about what changes are likely to occur with both
of those conditions?
So if we take Alzheimer's disease first we said that in the very early stages of Alzheimer's
people have trouble with short term memory and that's mainly because the disease affects
the memory centres of the brain around that record button, the hippocampus.
As the disease progresses it affects other parts of the brain as well so that a person
might not just have problems with short term memory but then might have trouble remembering
things that they've known for a much longer time.
So families will say to me you know mum's now having trouble remembering things that
happened in the family years ago or dad's having trouble now using his machinery that
he's used on the farm for years and years.
So longer term memories become affected as well.
It's not just memory that gets affected and obviously as Alzheimer's disease progresses
people have trouble with their speech, with getting the right words out to describe things
and they also have trouble with planning more complicated things and reasoning things through
and doing some sort of spatial perception type things like getting their clothes on
properly or laying the table with the cutlery, those sort of things, putting a bedspread
on a bed.
So it broadens out from initially just being memory and a bit of problems finding the right
word to then being problems in other areas of the brain as well.
Vascular dementia is different.
Vascular dementia is caused by very small strokes in the brain, not the type of strokes
that will make you sort of paralysed down one side and you'll really notice that you've
had a stroke but many strokes that will happen without you even being aware that they're
happening often.
So that with the sort of course of that illness it depends on whether you have any more strokes.
Some people will stay stable for a number of years and not having any problems in other
areas of the brain, other people will continue to have strokes and it depends where the strokes
are as to what sort of symptoms and how that changes things for them.
So when the team tells someone that they have dementia type condition, how do people sort
of generally react to that?
Look, often people who've come to the clinic are really anxious about their memory and
they know something's wrong and to be told that there's a reason for why they're forgetting
things can sometimes come with a sense of relief and I've had people say that to me,
you know, finally I know what's wrong, I'm not going crazy, there's nothing wrong with
my reasoning, it's just my memory and there's a reason why my memory's not working so I
don't need to blame myself anymore.
As time goes on from being told the diagnosis the reactions will change, you know within
one day reactions will change but people can sometimes be very angry to know that this
is happening to them and then there can be the sense of loss and sadness and grief as
well.
So what difference has it made with people being diagnosed earlier in the disease?
I think it's made a lot of difference and we are, when I started working in the clinics
about 13 years ago we would mainly see people who it was fairly obvious that they had dementia
in the sort of middle stages of dementia, now we're seeing people a lot earlier and
I do think it's a positive thing in that people can get that sense of knowing what's happening
to them much earlier when they can begin planning for their futures and discussing with their
family what this means to them.
I think in the past when people hadn't known they would have gone through a lot more soul
searching and frustration at wondering what the hell was happening to them whereas now
they can know much earlier and also their family can know which is important too.
For some people do you think that there is a point of realisation of where is this headed,
you know some concern about what the future holds?
Look I would say that most of the people that come into the clinic who are worried about
their memory will have the fear of what's to be for the future, what am I going to end
up like, am I going to be a burden on my family, where am I going to be living, who's going
to look after me, all those questions and they'll often ask those questions at that
very initial check up with memory and wonder how quickly it's going to be that they're
going to end up like that and that other people are going to be running their lives for them.
So yeah it's a definite concern.
And I guess in a way it's a positive outcome of the diagnosis that you actually get an
opportunity to talk about some of those sorts of issues early in the process.
Definitely and people can now say if this should happen to me this is how I want it
to be looked after and you know things, legal issues can be sorted out earlier, people can
appoint their adjuring power of attorneys and guardians and say how they want those
decisions to be made for them in the future.
So it's definitely a positive of knowing earlier.
Do you think that there's still a stigma attached to the word dementia?
Yep and people will react differently as to whether they'll tell people that they have
dementia as well.
Even health professionals will vary in how much they say to people about the actual word
Alzheimer's disease or the actual word dementia.
Sometimes it can just be couched in the terms you've got a memory problem, you've got memory
loss.
There is a lot of stigma with the word dementia.
In relation to Alzheimer's disease a lot of people ask me what's the progression going
to be, how many years have I got?
What's your answer to people when they ask you that?
The stock answer to that is we don't know.
It would be nice to be able to tell people exactly what's going to happen so they can
predict their future.
What we can generally say is that you will get worse but it happens over a long period
of time and a number of years.
We say to people that we need to check you on an annual basis rather than say a monthly
basis because it takes that long for the changes to be detected as they happen.
I'd be really interested Anne if you could tell me a bit more about what the strategies
you would suggest that people use for their memory loss.
People tend to use the strategies that they've always used and they're usually sort of common
sense strategies like writing something down and what we usually suggest in the clinic
is to keep using those, perhaps to simplify them a bit and to extend them in some ways
as well.
For example, sometimes people will use written notes but they'll have notes scattered all
over the house, the car, wherever and they'll forget which note they wrote on or what the
note means that they wrote down, that sort of thing.
The better way to go for that is to have a simplified system where you might just have
one notebook in the house, usually in an area that you walk past frequently during the day.
Some people use the kitchen bench, that sort of thing.
And almost set up like a memory centre because you need to have some sort of crutch for your
memory if it is going to be unreliable and there's nothing wrong with using written strategies,
memory strategies in themselves because they'll make you feel more confident and it's like
you've got a backup system for yourself.
We all tend to use their strategies to varying degrees but I think once you have had a diagnosis
of dementia you need to be conscious of using them more and to be more organised in the
system that you have.
So you can be as creative as you want.
You can have a memory centre that has a clock near it and it's great if the clock has the
day and the date on it.
You can have a whiteboard in your memory centre as well for just day to day notes.
You can have a pin board there for pinning up your cards for doctor's appointments.
You can have your phone in the same place so that if someone rings you've got pen and
paper there, you can write down the message at the same time.
Some people will actually have what they call a communication book which is just like an
exercise book that they keep there and when family members come to visit they write down
notes for them.
Then when another person comes to visit they can see, oh right my sister's been here, she's
said this, that sort of thing.
That often works well.
Written notes can also be used on pieces of equipment around the house and often if you're
getting a new microwave oven or a washing machine that has different instructions to
what you've been used to in the past, it's often useful to write down step by step the
instructions and stick them on the machine so that each time you use it you can read
the instructions and follow them step by step.
That also works well on things like the dreaded fax machines and the more complicated phones
that are around too, just as a memory jog that's always there.
Do you feel that people sometimes become fearful of their memory failing them when they move
into unfamiliar situations?
Yeah, with memory loss it's easy to become fearful that you're not going to cope when
you go out and one lady that I saw was telling me that she now doesn't drive out of her local
area because she's scared that she'll get lost or if she doesn't get lost that she won't
get there on time and that her friends will notice that she's not coping as well as she
has been in the past.
So what tends to happen is that people become anxious or fearful and they tend to stay home
more and family members will often say, you know, Mum's really withdrawn socially, she's
not doing as much as she used to, she's not going to senior sits anymore, she's not going
to bowls and that's because Mum is worried that she's not going to get there on time
or that when she gets there she'll do something to make a fool of herself, that sort of thing.
Any strategies for sort of working around that?
Look often it helps if someone takes the person to the activity to just get rid of that fear
of not getting there which is a common one and keeping the activity as familiar and routine
and part of everyday life is useful.
Relying on things that the person can still do because of course whilst dementia in the
early phases really makes short term memory difficult there are still many strengths that
a person has and there's still plenty of things the person can still do well and it's a matter
of tapping into those things that a person does well so that that person can feel that
they've had a success and they've achieved something.
So more complicated things that a person might fear that they can't do need to be broken
down perhaps into bits that can be done.
You know for example a person might just get a lot of joy of going out for a walk with
the dog or sitting down and doing some knitting, not complicated knitting but perhaps more
simple knitting now.
One man I saw wasn't going to bowls because he couldn't score anymore, he couldn't fill
out the score card for the bowls so he had a mate who went with him who knew that he
was having this trouble with his memory and he filled out the score card and the man could
still bowl perfectly well, better than his mate actually.
So yeah I think it's once again a matter of being creative and knowing what you as a person
with memory loss can still or what your relative can still do and doing more of that and still
getting a lot out of life.
It also generally helps to keep things as familiar as possible and to keep to an organised
routine and people with memory loss will be the first to tell you that it's when they're
out of routine doing something that they don't usually do that the memory is strained more
and memory lapses happen more and just increase the level of frustration for a person.
So doing things at a similar time during the day or during the week can be really helpful
too to take the load off memory.
How important is understanding the person's personal history in supporting them through
this dementia process?
Well knowing the person as fully as possible is incredibly important.
As with anyone in life no two people are the same and just because you've got dementia
or Alzheimer's disease it doesn't mean you're going to be exactly the same as the person
sitting next to you who has the same illness.
So we're all different and that really needs to be respected because often people will
rely a little bit more on past experiences when they're talking in conversation.
It's important to understand those past experiences because we tend to generally go back to what
we're good at and what our strengths are and in those early stages of dementia we're
still very good about talking about past experiences.
So that if you're working with someone in a group sort of situation who has dementia
then knowing a little bit about what has happened to them when they were younger and tapping
into those experiences means that they can have a fruitful conversation with you.
We'll often recommend to family members or professional carers to sort of to even make
up a book of past experiences with photos to jog a person's memory and to talk about
those past experiences.
Is that also because the short term memory is failing that the longer term memory is
what the person remembers?
Yeah, yeah and as I said before it's like if you're not good at something you tend to
avoid it.
So you don't tend to talk about the film you saw last week or what book you're reading
because you can't remember the content of it.
So to fill in the gaps in conversation and to talk about something meaningful for you,
you rely on the memories that are there for you and that's why often people with dementia
will talk about past memories more than recent memories.
And can you tell me a little bit about your experiences of watching people with dementia
move through the different processes and how do they deal with that?
In the early parts of dementia when the memory loss is mainly short term memory, people become
incredibly frustrated with that at not being able to accomplish things as well as they
have done in the past and there can be a lot of anger there as well.
As the disease progresses over the years people's memory problems become worse but what often
happens is that their sense of awareness of those memory problems lessens with time as
well so that the impact of those memory problems on those around them is not, people don't
get quite a strong sense of that and in that way become less frustrated than they were
in the very early stages and it's often as the memory problem gets worse and the person
themselves has less awareness of it that the family then are the ones that become even
more frustrated so it can change with time.
How do family members describe to you the experience of living with someone with dementia?
The experience for families can vary enormously.
Some people they can find the experience can be quite enriching for them as a family whereas
obviously the opposite can happen as well and it can be a mixture of both as well.
There are lots of different stages and phases that families pass through and lots of common
acknowledgements or acceptances that have to be made amongst family members.
I see plenty of absolutely exhausted family members especially those that are children
of someone who has dementia who have their own children as well that are trying to run
two families at the same time.
Other times I'll see families who will say this has been the best thing that's happened
for us.
We've all finally got together and talked about things as a family and it's given us
an enriched connectedness as a family.
I think each family deals with grief and it's an unusual sort of grief to when someone,
it's different to when someone dies.
It's what's often called a living grief so that there's acceptance of change in a person
and getting to know a new person almost as someone's personality can change.
One lady whose husband has early dementia says to me he's not the same John that he
used to be and that's really hard and she cries for that regularly that she hasn't
got the husband that she married.
So there's a lot of grieving that happens along the way.
Sort of like you're losing somebody but they're still there.
And I know certainly from personal experience my gran had Alzheimer's and that was very
difficult for me.
I'd be working all day with people who had dementia and then I found it really hard to
go and visit my gran in the nursing home because she wasn't the gran that I used to know.
So that's a huge issue.
There's also for families, there's working differently amongst the family and there's
sort of almost like a reconstruction of how the family works so that people will take
on different roles to what they had in the past.
So if dad has dementia and he always used to look after the finances for example, kids
might have to start taking that over or a wife might have to start doing that for the
first time in her life.
That can also be a positive thing and I'll often see, this is generalising and sex stereotyping
but I'll often see husbands who've taken over the cooking and the cleaning in the house
and they feel fantastic that they've taken that challenge on and that they can do it.
Or wives who've taken on financial management within the family and feel good that they've
been able to do it.
Children will often find it quite challenging feeling like they're having to be a parent
to their parent and that can cause friction because a person with early stage dementia
can sense that and sense that loss of autonomy as well.
So it's important within families to work out the boundaries, work out how you're doing
things and importantly always talk about how it's going.
So generally that sort of opportunity for families to talk, you've found us being really
helpful for the family to talk about what's happening.
Well from the very first stages of the diagnosis being handed over, family should I think get
together because that's when the planning begins amongst the family and also what we
often find is at the clinic that some people will be very aware of what's going on and
other family members won't be.
One lady that I saw lived with her mum, saw her mum every day and knew that something
was wrong with mum and her brother who was a doctor kept saying there's nothing wrong
with mum, she's alright.
We got them both in and finally the daughter knew that what she suspected was the truth
and she was incredibly sad about that obviously but also it was important for her brother
to know that yes this is happening, it is a real thing.
So often in families there'll be differing amounts of knowledge about the situation and
if there's communication then that can help.
The other thing that can happen is that there's often one person in a family that takes on
that sort of primary role of helping and if the family can get together then they can
work out ways of sharing that load.
I had one family who, it was mum on her own who had dementia and one daughter was exhausted
looking after her own young kids and helping mum and we got the family together and we
worked out that if they simply did a roster of looking after mum each night of taking
a meal over to her then that made a lot of difference to the daughter who was doing most
of the work.
Do you feel that it's in having your grandma having Alzheimer's and having that direct
personal experience of that that that's given you some insights into the work that you do?
Oh definitely yeah and also talking about family, I mean it wasn't just me and my grandmother,
it was my grandmother's children, my mum, my auntie and seeing how everyone reacted
differently to it and how everyone brings their own history to a diagnosis of dementia
and the way that they react to it, the way that they handle it on a day to day basis
is different according to who you are and how you fit into the family.
Yeah but I was very close to my grand so seeing her go through that and also watching my mum
who was the primary person involved for my grand and watching her go through the grief
that she went through yeah it's definitely I think helped with the way I can understand.
That's helped have some understanding.
Now I know that you would never bring it up but I also know that you wrote a book with
Delas Sargent, Remembering Well.
Can you just tell me a little bit about the process of writing the book and where the
idea came from?
Yeah sure, Delas and I wrote the book Remembering Well mainly because Delas who's an older woman
and she's happy for me to relate her story, when she retired from work in her late 60s
she became very concerned about her memory and she was worrying that she was experiencing
memory lapses that might be the onset of Alzheimer's disease so she saw me and had her memory checked
with me and fortunately I was able to reassure her that the signs that she was experiencing
were mainly stress and fatigue related not dementia and we talked about lots of strategies
that would help her to get more out of her memory and to be able to remember the book
she's reading at night and that sort of thing.
Delas was working with the council on the ageing and doing a lot of seminar work and
asked me if I would present information just about how your memory changes as you get older
and as you get the early signs of dementia to larger groups of people and we did that
and people were asking what can we read about this, nothing that we've found that's been
useful on this and Delas and I decided that we would write a book that was accessible
for people to understand just in a simple way how their memory works and how it changes
as they get older, how it changes with illnesses of memory such as dementia and what are just
some common sense practical strategies for getting around the memory loss.
So yeah, that's the book.
.