Welcome to our café!

Toshio Mori

One-day manager of the Lemon Café

G8 Dementia Summit Follow-up Event (in Uji)

November 7, 2014

Dementia is actually a lot more common than we once

thought…

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

Scene of the tennis class for early-onset

dementia patients…

The presence of persons with dementia

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

Scene of 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

Third Lemon Cafe

March 24, 2013 (Sun.): A sunny day

Community café workshop: Hinobokko

Today’s menu

❀ Short speech from Mrs. Nakanishi

(Alzheimer’s patient)

❀ Mini concert by Yukiko

❀ Group tea and talk time

Mrs. Nakanishi (Alzheimer’s

patient), with her daughter Mrs.

Kawai

That’s the end of

today’s mini speech.

Please give a round of

applause for Mrs.

Nakanishi!

Mini concert♪(Singing with piano

accompaniment ）

Lively discussion during the

café time:

“I’ve just come back from

Hokkaido!”

The café program for today is finished.

I look forward to everyone visiting

again (closing remarks from the café

manager)

Stories from persons with dementia

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)

Toward declaring Uji as a

“dementia-friendly town”

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)

Potential within Uji City

(The issue of dementia is a touchstone for building a new

society)

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

Turning point in history

Across the ocean…

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