[Music]
I'd like us to take a moment to think
about what makes you you what are the
things that are important to you that
make you who you are what are the things
that make you want to get out of bed on
a morning and the things that bring you
joy for me it's my family and my friends
it's my dogs it's sitting by the fire
and getting absorbed in a really good
book running for miles and miles in the
countryside talking to people and
listening to their stories over a cup of
tea and a piece of cake these are the
things that make me me the things that
helped me to thrive and it was my love
of talking and listening to people that
motivated me to become a speech and
language therapist more than 15 years
ago now I wanted to help other people to
get joy from connecting with each other
and very soon I started to work with
people who were living with dementia and
I realized very quickly that I'd found
something I was really passionate about
and I've always loved to spend time with
my elders rather than people my own age
from being a small child I adored
spending time with my grandparents and
hearing all their stories of things that
were perfectly normal to them but that
seemed so alien to me because they were
so different to our modern lifestyle and
I only have one grandparent remaining
now my Nana and she's in her 90s now and
I still love to listen to her stories
even though now she tells me the same
stories again and again because my Nana
has problems with her memory now which
means she can't remember that she's
already
told me a story sometimes she can't
remember that I've been to visit her and
sometimes she forgets that people that
she loves have passed away and are no
longer with us
and my Nana lives in a care facility now
and she has care staff to help her with
the things that she finds difficult
what's normal for my Nana has changed
considerably over the last couple of
years she's gone from living by herself
to living in a home with people who she
didn't choose to live with she's gone
from being seen as the person who loved
to take her grandchildren to the
pantomime every Christmas and the person
who makes the best apple pie and custard
in the world to someone who's seen as a
patient to someone who's seen as a
resident of a care home and whilst my
granddad always used to say only the
lucky grow old I can understand why my
Nana has found life challenging over the
last couple of years and why she's told
me that sometimes when she talks to God
she tells him I'm ready when you are and
many of us will know somebody who's
living with dementia perhaps a family
member or a friend a work colleague or a
neighbor and each one of those people
will experience living with dementia
differently because we are all different
we are all unique individuals even if we
might share the same diagnosis as
someone else and some people living with
dementia will find it really hard to
adjust to their new normal to adjust to
the symptoms of dementia they're
experiencing and may find it a challenge
just to survive from day to day whereas
other people may find ways to embrace
symptoms of dementia to redefine what's
normal for them and to really continue
to thrive and yet even though people can
live well with dementia people can
continue to thrive dementia is still
globally the second most feared disease
and having spent so much time with
people who are living with dementia I
have to say that sometimes I can
understand why they might feel fearful I
remember visiting my Nana about a week
after she moved into the care home and a
member of the care staff took me to one
side and they said to me does your Nana
prefer to have a bath or a shower
because she hasn't had either since she
came to live here and we were told she
could bathe herself I asked them what my
Nana had told them and they said they
hadn't asked her that question so I
asked my Nana why is it that you haven't
had a bath or a shower since you moved
here and she said to me I don't know
which door leads to the bathroom because
all of the doors look the same a problem
that could have easily and quickly been
resolved by something as simple as
putting a bathroom sign on the door and
I wondered to myself why was it that
they hadn't asked my Nana the question
herself not because she wasn't able to
answer but perhaps because they'd made
an assumption that she wouldn't be able
to do so and this lack of direct
interaction is not unique to my Nana I
remember very well visiting a care home
and I met there a man called Frances and
he was living in the home because he had
quite advanced Alzheimer's disease and
as I was being shown around the home as
I passed Frances I said good morning to
him and the member of the staff showing
me round
said to me very quickly Oh Francis isn't
able to talk anymore now I had 15
minutes before I was due to meet with
the manager of the home so I took those
15 minutes to sit with Francis and it
was a really hot day and Francis was sat
in his wheelchair by an open window i
sat beside him and I talked to him about
the here and now I commented on the
warmth of the day on the great spot he
had by the open window that benefited
from a gentle breeze I talked about the
music that was playing in the background
and I told Francis about my dad who's a
folk musician and at times we sat in
silence just watching what other people
were doing people who were busy going
about their day not seeming to notice us
sitting there and watching and from time
to time I looked at Francis and he
looked back at me and I felt that we
made a connection and when the member of
staff came over and said to me the
manager was ready to see me now
I turned to Francis and I thanked him
for letting me sit beside him and I said
to him truthfully that I'd enjoyed his
company as I got up to leave Francis
took hold of my hand in his he made eye
contact with me and he smiled and he
said to me thanks pet the member of
staff had known Francis for 18 months
and told me she'd never before heard him
speak and so I pondered on this and I
thought why was it that the member of
staff had never heard Francis speak not
because he couldn't speak but perhaps
because they weren't providing him with
the opportunities to do so and time and
again I see people who are living with
dementia being ignored not being
included in
decisions that might affect them people
who had not been treated as human beings
and this is done through no malice this
is because people often fail to see what
people living with dementia are capable
of they focus on what the person is no
longer able to do instead of recognizing
all the many things that people are
capable of because it's not that people
living with dementia are not capable
it's that we as a society and not using
our capabilities to support that person
to be a valued member of society and so
I want you to imagine imagine a life
where you have food and you have water
you have clothes and you have shelter
but it might not be the food that you
would choose to eat or the drink that
you would choose to drink it might not
be the clothes you choose to wear or the
place where you would choose to live but
you have the things that you need to
survive but nothing more than this
you're not asked your opinion on things
you're not included in conversations
would merely having those means to
survive be enough would that provide you
with fulfillment and I would suggest the
answer is no that this is not enough
it's not enough just for us to have the
means to survive we also need to be seen
as the unique person that we are and
this is not a new idea more than 30
years ago a professor called Tom KITT
would he did a lot of research around
dementia and he said to people we need
to stop seeing the dementia and we need
to see the person first and this has
been known
as I say more than 30 years and yet this
approach is not widely implemented and
so I say we need to start with us we
need to be that change and make that
change happen we as a community need to
empower people who we know who were
living with dementia to continue to be
involved in their society we need to
change the stereotype that's associated
with the word dementia there was a
gentleman called Nigel Haleh and he used
to be a human rights lawyer he now is a
gentleman who lives with dementia and
reflecting on his his diagnosis he said
I was seen through a prism of dementia I
stopped being a person I stopped being a
person that was how Nigel felt and not
because of his diagnosis but because of
how people treated him as a result of
him having that diagnosis and he went on
to say we all have human rights and
these should not dilute with age nor
should they evaporate in the face of
disease or frailty and yet so often
those human rights are not afforded to
people living with dementia and it's not
that we need to give people these human
rights we need to stop taking them away
from people as a society we can and we
must do better and I know that it is
possible for us to do better because I
have seen wonderful shining examples of
people living with dementia having
positive experiences and I remember
visiting a community center where people
living with dementia were invited to
come along to socialize with people and
to engage in activities they would enjoy
and in the afternoon a singer had been
invited in to provide some entertainment
and as the music started I watched one
of the organizers invite a few people up
to come and dance with her and it was an
absolute joy to watch a group of people
who were singing and dancing together
who was smiling and laughing and as I
looked around the room I noticed a lady
who was called dotty and she was sat at
the side of the room and she physically
wasn't able to get up and join in with
the others and then the organizer
noticed dotty at the same time I did and
she spoke to the people she was dancing
with and as one they moved over towards
dotty and they joined hands with her and
they included her in the smiling and the
laughing in the dancing and singing and
this was such a small act that took no
effort from that that organizer and
those other people and yet the impact on
dotty was incredible to see she went
from someone sitting on the sidelines
longingly watching the others to someone
who was genuinely part of that group and
I see lots of other people living with
dementia who thrive because they are
invited to continue to come to events to
share their ideas and their thoughts
with other people and have those ideas
valued that people are treated with
kindness and treated as human beings so
how do we move forward how do we use our
knowledge of how to connect with people
to extend this to people who are living
with dementia firstly we need to
recognize that people are people first
that people living with dementia will
still enjoy the things they used to
enjoy and are still human beings we need
to involve people
ask people questions ask their opinions
and pause to hear their response we need
to listen out for those thank you pets
we need to remember or learn about the
things that are important to that person
that make that person who they are and
then support that person to continue to
get joy from the things that they have
always loved we need to add humanization
to the list of things that people living
with dementia need to survive and fit by
an open window with someone talking
about the here and now or invite someone
to dance with us if we can stop seeing
people through that prism of dementia we
can create a world where a diagnosis of
dementia does not invoke a fear of
dehumanization by using our capabilities
to connect with people one human being
to another
we can help people living with dementia
not just to survive but to truly thrive
thank you very much
[Applause]