welcome to our café! - uji there is none, i will make my own (formation of a tennis class for...
TRANSCRIPT
Welcome to our café!
Toshio Mori
One-day manager of the Lemon Café
G8 Dementia Summit Follow-up Event (in Uji)
November 7, 2014
Prevalence of dementia by age group (June 2013)
2.9 4.913.6
21.8
41.4
61
79.5
0
20
40
60
80
100
65-69 70-74 75-79 80-84 85-89 90-94 95-
So, in our present day society, there is….
(Access problem, two areas that are lacking and three
issues)
Care
Access
point
Co
mm
un
ity g
en
era
l
su
pp
ort c
en
ter
Medical
care
Prim
ary
care
do
cto
r
Narrow definition of
access problem
● Breakdown of
access
Living alone, poverty,
social isolation,
refusal to support,
complicated family
troubles
What is the access
problem?
Broad definition of
access problem
● Exclusion from
medical care
Problem of physical
complications
Underdeveloped
community health
care
Broad definition
of access
problem
● Exclusion from
care
Problem of
early-onset
dementia
Changes in character (become less flexible)
Changes in mood (depression)
Become distracted
Memory loss(Early: Memorization impairment)
Disorientation of time and place
Disorder of thinking and impaired executive function
Motor restlessness(Particularly nocturnal delirium)
Apathy / Disinterest
Disorientation of people
Extreme memory loss
Incontinence (urine/feces) / Bedridden
Stage I(Early)
Stage II(Intermediate)
Stage III(Advanced)
Dementia care path (flow of care) – Two areas lacking
Absence of care
(Early dementia)
Period of indirect
nursing care
Period of direct nursing care
(Assumption of somatization)
Exclusion from care(Group
that is vehemently opposed
to receiving nursing care)
1. “Falsehood” of never-ending care
Absence of care in early stage (From the start, care is intermittent)
2. “Falsehood” of early detection / early treatment
(1) Absence of support following diagnosis (only medication)
(2) Diagnosis becomes a “sentence” rather than a
“notification”
3. “Falsehood” of a community where people can live with peace
of mind, even after developing dementia
Image of dementia as a condition people desperately
want to avoid developing
Three issues to conquer quickly
New scene that is developing in front of us
Current situation in Uji
(Toward resolving the access problem)
○ Started in October 2009
(Held monthly)
○ Participating organizations
Community general support centers
(6 centers + 2 branches)
Uji City Hall
Medical institutions
Alzheimer's Association Japan
Academic experts
At-home nursing care support offices
Uji City Dementia Care Network
Care
Access
point
Co
mm
un
ity
Ge
ne
ral s
up
po
rt
cen
ter Medical
care
Prim
ary
care
do
cto
r
New initiatives for resolving access problems
Exclusion from
medical care
side
● Physical
complications
Exclusion
from care
side
● Café for early stage dementia patients (creating a meeting place),
Dementia café liaison group/meetings
● Early stage focused support (function) (initiated from our side)
● Raising awareness: holding ongoing lectures to help achieve a
proper understanding of dementia
● Training nurses at acute hospitals
to improve their ability to care for
dementia patients
● Training for developing dementia
support nurses
● Advancing at-home medical care
● Expanding the
coverage of care
● Dementia care
path
● Training
personnelEarly stage
focused
support
(function)
Dementia
café
Ongoing
lectures
1. Response to the three issues (Start of the café)
(1) Initial “base” for the provision of ongoing care
(2) Starting point for post-diagnosis support structure (glad at
receiving an early diagnosis)
(3) Place for shifting to a real image of what dementia looks like
(Requires participation/appearance of persons with dementia)
2.Transition in the way of providing medical care and care
Shift from a “system of waiting” to “taking the initiative” for both
diagnosis and assessment (outreach)
Formation of a Dementia Early Stage Focused Support Team
3. Operating both the café “place” and the early stage focused support
(function) concurrently
New scene in Uji
The foundation of the café was the tennis class for
early-onset dementia patients…Formation of a team for persons with dementia
(Scene at the tennis court in October 2012)
1.High school days…spending day and night at the
Higashiyama High School baseball club
2. While at the Kyoto University research lab…working on the
theme of public pollution, “chronic cadmium poisoning”
3. After retirement…back to his days of being absorbed in
baseball (joins a club team)
4. Quits the club after dementia diagnosis…looking for
something to replace it
5.If there is none, I will make my own (formation of a tennis
class for early-onset dementia patients)
One story
1. Appearance of a good looking female tennis player
Also acted as the most skilled player in the class, and she and her
husband also took on the role of creating the initial tennis court
foundations.
2. Appearance of a professor of earth sciences (from Hokkaido)
Acted as an ambassador for Hokkaido tourism.
3. Appearance of a famous guitarist
Originally a scientist, he has another side with an unusual talent as an
artist.
4. Appearance of a (1964) Tokyo Olympics torch runner
A former all-Japan athlete, he helped establish the golden era of men’s
volleyball.
Assembling people for the tennis class (1)
5. Appearance of university general manager…has a curious
connection as the founder of Uji dementia care and a former
colleague of the psychiatrist Isao Ozawa.
6. Appearance of a second female tennis player
Her positive and cheerful attitude has helped her conquer
the days of confusion and bewilderment after hearing she
had dementia.
Nowadays, tennis is what she enjoys the most.
Assembling people for the tennis class (2)
New participants
〇 A world offering a tennis class for early-onset dementia
patients (form relationships as equals)
• Dementia patients and their family can participate together
• Everyone can enjoy tennis, regardless of whether they
have dementia or not (sense of freedom, a new world, joy at
improving tennis skills)
• Peer support from other dementia patients (circle friends)
• Peer support among families of dementia patients
(relationship of trust)
• Mediation of others (presence of tennis coaches)
〇 A world offering an art class for early-onset dementia patients
• Non-verbal world (scenery in the mind’s eye)
• Nurturing individual talent (encountering a new self)
Formation of a team for persons with dementia,
including their family: opens up a new world for them
Holding a preparatory meeting focusing on the
team for dementia patients
January 5, 2013 (Sat.)
〇 Impressions of how the first café will be
〇 Hopes, expectations and requests going forward
〇 Decision on the concept for the second café
This preparatory meeting was the starting point for the café
〇 So far: Assumption of a dichotomy of dementia patients and those
without dementia
• Presence as the side being supported (always being either
patients or users)
• Driven to the other side of the river (the other side and this side)
〇 From hereon: dementia patients and those without dementia are
contiguous
• Dementia patient seen as an ordinary person (as the subject)
• Emergence of dementia as something that can be talked about
and acted on
〇 Creating an environment in Uji where persons with dementia can be
seen as completely normal
• Principle of persons with dementia being the focus
• Café is a bridgehead (a base and a model of a new society)
Current and new point of equilibrium (potential of the café)
The stories (and appearance) of persons with dementia is
essential
Developing dementia is not all bad
Encountering a wonderful new world after developing
dementia (together as husband and wife)
New places (relationships, society) take precedence
New worlds open up
The café is a base for bringing these new places and worlds
into the community.
Changing perceptions of dementia as a disease
Today’s menu
❀ Short speech from Mrs. Nakanishi
(Alzheimer’s patient)
❀ Mini concert by Yukiko
❀ Group tea and talk time
The café program for today is finished.
I look forward to everyone visiting
again (closing remarks from the café
manager)
Living positively with dementia
Mr. Masahiro Ota from NagasakiAlzheimer’s disease patient
Onset at age 52
Me, as I am now
Mrs. Eiko Nakanishi from Kyoto
Elementary school teacher
Alzheimer’s disease patient
Onset while still working
When I was diagnosed with dementia, all my hopes and
dreams disappeared.
I had a negative image of dementia. I thought “I’m just going to
go senile, and be a burden to those around me. My future is
so bleak!!”, which made me feel down.
It was hard not knowing what to do from hereon, or how I would
live.
I had nothing to do each day. I lost my will to live, and I felt like I
wanted to die.
Even though there is treatment, it’s just taking medicine. I would
tell myself “That won’t work, and neither will this.” As it’s
dementia, I believed nothing I did would help me.
I felt like hiding myself behind a wall.
At the time of receiving diagnosis
After going to the café and joining in the “Alzheimer's
Association Japan”, my own image of dementia changed.
I have come to feel that “even though I have dementia, I can
still live a normal life!” I now know and have come to accept
that I have dementia.
I want to tell others like me that even if you have dementia,
you can still live a happy and healthy life. “You don’t have to
be so down about it!”
Even after developing dementia, I didn’t lose any stamina or
feel at a loss. I now know this, and want to tell others in the
same circumstances that it will be okay.
My current state of mind
Being open about illness
(Conversations with two daughters)
Tomofumi Tanno from Sendai
Alzheimer's disease
Onset at age 39
1. “I’m saved!”, “ Finally, there are people here who understand what I’m
going through.”
Free from a sense of utter isolation and alienation (there seems to be
a river there…)
“It’s fun meeting with others.”
“The meeting is next Thursday. I’ll do my best at work until then.”
2. Consideration toward family
“It’s a place where my wife can go for advice when the dementia has
progressed.”
“As long as I go to the group, someone will be able to help my wife.”
3. It’s not all bad
I now spend more time with my family.
I’ve received kindness from many people.
Through the meeting group, I’ve realized that “dementia is not the end”.
Encountering the Alzheimer's Association Japan (gathering for
young people)
The appearance of people who can talk about dementia, and a place
where they can do so, are of equal value.
The stories about dementia, and the circumstances of the place where
they can share these stories, are also equivalent.
The café is a place where you can realize that “dementia is not the
end.”
A world where “early detection does not equal early despair” takes
precedence.
That’s the first time that “early detection / early response” has a positive
meaning.
A clear path(For proudly admitting early detection)
Invasive (traumatic) methods in preventative measures for
dementia
1. It’s Alzheimer's disease, not dementia
2. I don’t want to incur any further damage to my brain
3. I want to preserve my remaining brain function
4. I’ll fight it out using all of my brain (battle dementia in
all areas of daily life)
Delaying the onset or progression of dementia
Measures for preventing the exclusion of persons
with dementia (reconsideration of measures):
Introducing a quantitative approach
〇 Announced by Alzheimer’s Disease International in April
2013
〇 Aims to fundamentally change the perception of dementia
as a disease
〇 Using the Tale of the North Wind and the Sun from
Aesop’s Fables…
〇 Devising a life strategy after developing dementia
Global Dementia Charter: I can live well with
dementia
(I can live a happy life while having dementia)
1. A new function and place will both play a crucial role
(1) Dementia Early Stage Focused Support Team (new function)
(2) Opening a dementia café (new place) in each of the six communities (inclusive areas)
(3) The joint operation of both ( the Dementia Early Stage Focused Support Team will act as
a caravan for the cafe)
2. The foundation of the new function and place
(1) Uji City (Two out of the three above are projects of the city: Declaring Uji as a “dementia-
friendly town”)
(2) Uji City Welfare Service Public Corporation (Consignment, Placement of dementia
coordinators)
(3) Kyoto Uji-Kuse Medical Association (Memory loss contact sheet, compiling a dementia
examination manual)
(4) Dementia-related Disease Medical Center (early-onset dementia model day)
(5) Uji City Care Network (Network for medical care, care, welfare and administrative
services)
(6) Yamashiro Dementia Community Care Association (more expansive network)
(7) Ongoing lectures to facilitate the proper understanding of dementia (raising awareness,
for professionals and Uji citizens)
(8) Individual home visits for Uji citizens aged 65 and over who are suspected of being at risk
to develop dementia
Overview of Uji
〇 Total population 191,267 people
〇 Number of households 81,449
〇 Population per household 2.35 people
〇 Population of elderly persons 47,835 people
〇 Aging rate 25.01%
〇 Number of persons with dementia requiring nursing care
8,268 people (17% of the elderly population)
〇 Number of registered elderly persons with dementia 4,222
people (8.8% of the elderly population)
〇 MCI + estimated figure for persons with dementia 13,394
(28% of the elderly population)
Current figures of Uji City
1. Transition from an age of numerous births and deaths to a low number of births and
deaths (conquering infectious diseases)
• Decline in the infant mortality rate
• Fall in the maternal mortality rate
• Decrease in the number of deaths from infectious diseases such as tuberculosis
2. Three major causes of death: cancer, heart disease and strokes → cancer, heart disease
and pneumonia
3. Emergence of an aging society
Increase in the number of people living in a community while suffering from multiple
chronic diseases
The number of diseases grows as a person ages
The conventional medical care system can no longer sufficiently cope with the
“demand” for their services
4.Change in the structure of diseases and shift in the concept of health
From “conquering disease” to “living with disease”
From “cure” to “support”
Demise of the hospital era, and its background
1. Issues in the current health care system
〇 Fragmentation of services involving long-term care
〇 Continual shortage in medical care and social care
2. System for providing a new type of medical care and care
〇 Community-based care
〇 Integrated care
Shift of resources from hospitals to communities, transition
from cooperation to integration
3. State of society is being questioned
Rebuilding daily lives (individual) and communities (local
government)
Prepared answers
〇 Formation of a working team of persons with dementia
〇 Prospects for building a town based on the views of persons with
dementia
〇 Criteria for building a new society have been prepared
Strong leadership from the Mayor
Able to be tackled by the entire local government, including the
city council
Existence of clear principles (10 “I messages”: sharing goals)
Organization of affiliated institutions and joint action (similar to
Plymouth City)
〇 Collaboration with Kyoto Prefecture’s concept of a “Kyoto Dementia
Center”
Setting up a key base for a “new care and prevention model”
Exercise facilities, art activities, job-search support (partnering
with local industries), use of IT
Base for integrated care
Development of a working team of persons with dementia
Potential within Uji City
〇 Job-search support for persons with early stage dementia
More cases of early diagnosis will increase the number of people
able to work
For instance, pursuing partnerships with local industries
Or setting up a workshop
〇 Expanding the café and strengthening the Dementia Early Stage
Focused Support Team
Comprehensive support from the early stage
Enhancing support for the individual and their family
〇 Community building (increasing the number of ongoing lectures and
Dementia Action Alliance)
Potential within Uji City (2)
Formulating a Kyoto-style Orange Plan
(5-year Plan for Promoting Comprehensive Measures for
Dementia)
September 2013
(by March 2018 in Kyoto)
1. “10 I messages” with myself as the subject – a person with
dementia
This shapes the “orange road” mentioned in the opening, and
enhances the “Plan Evaluation Direction” section on the final pages.
2. Clarifying the evaluation method for Kyoto’s dementia measures
With participation of both the individual with dementia and their family,
the attainment level of Kyoto’s dementia measures will be evaluated
using the index of “Whether I was able to realize my I messages”. This
is the declaration of Kyoto Prefecture.
3. Formation of a local government with the same type of selections
made as those of the National Dementia Strategy
Kyoto Tower is a beacon of hope that shines a light not only on Kyoto
but also across Japan, enabling comings and goings to and from
Kyoto.
Significance of the Kyoto-style Orange Plan
How do we address the issue of dementia?
There is a community that has tried to tackle this issue by listening to the
views of the main party concerned, the persons with dementia, and
shifted their approach to resolving the issue by focusing on these
persons.
This community is in Scotland, in northern UK. In 2002, when one man
exclaimed “Don’t make decisions about us without us!”, it lead to the
formation of a “Scottish Dementia Working Group” where persons with
dementia could gather and share stories. Their appeal to be heard
caught the attention of Scotland’s autonomous government, which then
created mechanisms to reflect the Group’s views in policies on
dementia.
What we’d like to do in Uji is…
exactly the same thing. We will work to build a dementia-friendly
society created by everyone’s efforts.
Story of Scotland: Part 1
Although it is said that early diagnosis and early treatment is important in
dementia, in reality, even when diagnosed with early stage dementia, it
is difficult to obtain the support and understanding of others.
The system that came about after this Group appealed to the Scottish
government about the need for mechanisms to support persons with
early stage dementia is called the “guarantee of one year's post-
diagnostic support.” It provides a minimum of one year free support for
all kinds of trouble encountered in daily life and psychological support
by a counsellor for persons diagnosed with dementia.
The government and support organizations in Scotland listened to the views
of persons with dementia and showed its people that it is possible to
live well with dementia, and also used these views to develop
mechanisms for nursing care and support.
Story of Scotland: Part 2