The Current Status and Challenges of Home Care of Patients with ALS in Japan

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The Current Status and Challenges of Home Care
of Patients with ALS in Japan
2009.2.21 Symposium for the Research of Home
Care for ALS Patients in East Asia

• Japan ALS Association (JALSA)
• Secretary General, Kimiaki Kanazawa
• President, Kinki Block, Katsumi Wanaka

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About Japan ALS Association (JALSA)

• Established 1986
• Voluntary Association
• The Head Office in Tokyo
• 38 Branches
• 6000 Members (Patients and Families 2000,
  Bereaved Families 980, Doctors 520, Other
  Professionals 760, General Public and
  Organizations)
• Mainly acted by patients and families with
  supports of other members.
• Main Activities Supporting communications among
  patients and families, maintaining the care
  environment and promoting research on development
  of medical treatment.

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Main Achievements of JALSA to Improve the
Environment for Care

• a.We supported the development of communication
  tools for patients with severe conditions, and
  made public fund available for renting the tools.
  (since 1990)
• b.We made public fund available for renting
  ventilators. (since 1994)
• c. We acted to secure hospital wards for long
  term hospitalization of patients.
• ? Establishment of hospital wards for
  hospitalization of patients with severe condition
  (since 1994)
• ? Securement of inpatient facilities for
  hospitalization of patients with severe
  intractable diseases (since 1998)
• ? Establishment of Rooms for ALS patients in
  facilities for people with severe disabilities
  (since 1998)
• d.We acted to improve social security for home
  care and attained
• ? Application of care insurance payment from 40
  years old (since 2000)
• ? Expansion of home care for patients with severe
  condition in the Act to Support Independence of
  People with Disability (since 2006)
• e.We made it possible that care providers can do
  aspiration. (since 2003)
• f.We acted to make commissioned voting at home
  possible for patients with severe conditions.
  (since 2004)

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Enabling Helpers, etc. to Conduct Aspiration of
Sputum
Submitted petition with 1,780,000 signatures to
the Health Minister Chikara Sakaguchi (November
2002)
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Transformation of the Image of ALS since the
Establishment of the JALSA
The disease without cure that leads to death by
paralysis of breathing muscle within 3 to 5 years
Development of Medicine, Informed Consent and
Expansion of Medical Support
The disease that improved treatments of
disabilities in breathing and nutrition can help
longer life even after breathing muscles are
paralyzed.
Life with a ventilator only to see the ceiling
Development of communication technology,
socialization of care, the patients desire to
live and their familys will for the patients to
live made this change possible.
Outgoing life with a ventilator that allows
social participation.
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Art Works and Essays of Patients
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JALSA Chair Hashimoto participated in the
international symposium using an airplane
She received the Humanity Award at the ALS/MND
Symposium in Yokohama held by the International
Association. (Nov. 2006)
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Overview of the ALS Patients in Japan

• 1) The number of patients
• Approximately 8,000 (as of the end of March
  2008/based on Research of the Ministry of Health,
  Labor and Welfare (MHLW)). The number has been
  increasing year by year probably because of the
  increase trend of diagnosis notification and
  aging society.
• 2) The usage of a ventilator (TPPV)
• 34 (2005, MHLW research group).
• Less than 20 choose a ventilator (estimate). It
  depends greatly on where the patients live or
  are hospitalized.
• Recently, the use of NPPV (BiPAP, nose mask) has
  been expanding.
• 3) The number of patients cared at home
• More than 70 are cared at home (2005). More
  patients have been going back home from
  hospitals recently.

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The Number of Receivers of the Certificate of the
Beneficiaries of the Medical Care for ALS Special
Diseases
2008
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Home Care Supporting System for Patients with
Intractable Diseases such as ALS
? Medical Insurance
? Care Insurance
? Disability Plan
? Measures against Intractable Diseases
Home Help Visiting Care for Severe Condition
Lessen the Self Payment of the Medical
Expenditure
Clinical Care at Home
Home Help
Nursing at Home
Bathing Service
Day/Short Stay
Using a Ventilator Visiting Nurse
Support Equipment Benefit Communication Tools
Rehabilitation at Home
Day/Short Stay
Project to Support Home Life Commodities
Benefit Electronic Sputum Aspirator pulse oximeter
Ventilator Renting Service
Care Equipment/ Renovation of the Residence
Project to Support a Local Life
Hospital Visit
65 years old or above 40 years old or above for
ALS patients. Maximum payment 360,000 yen/
month Self payment ratio 10
Research Project for the Medical
Treatment Project for Consultation and Support
The Act to Support Independence Certificate for
the People with Physical Disability Self payment
ratio of 10 Priority is in care insurance
Payments of certified patients with sever
conditions are fully covered by the government.
Medical Institutes
Local
Local
Health Center
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Challenges of Home Medication Patients and
Families Have Been Facing

• 1) Lack of appropriate social nursing power for
  the patients with ALS
• 2) Lack of short-stay and respite facilities
• 3) Lack of the facilities for long-term care
  of patients who live alone, etc.
• 4)Lack of comprehensive and continual medical
  and welfare supporting system
• 5)Improvement of QOL of patients with severe
  communication disabilities

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Burden on Families of ALS Patients who Are Cared
at Home with a Respirator
Ratio in 24 hours (Weekly Average)
March 2004 Research project on the maintenance
condition of home care environment for ALS
patients ( N 779 people)
Burden on Families
Care such as changing body position, suptum
aspiration, and medical care such as tubal
feeding.
91
24h
Note Care service using supporting budget
(currently, Independence Act) has been used by
only 20, so it is omitted from this figure.
It is necessary to diminish burden on families
by extensively expanding such services as
visiting care for sever condition (Independence
Act)
Medical Insurance (Visiting care for 45 minutes)
Total 9
Care Insurance (Visiting care for 90 minutes)
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Goal

• We would like to establish the caring system that
  enables ALS patients to have a secured life with
  shared support at their familiar home or
  community 24 hours a day, every day.

We would like to have public provision of care
and economical security that enables care without
burden on families. We would like to have
appropriate medical care given when
necessary. We would like to live an ordinary and
unique individual life even with severe
disabilities. We would like to live an enjoyable
and fulfilling life.
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Introduction of Home Care Katsumi Wanaka
Born in Wakayama in 1968 (60 years old)
OccupationFish Merchant (presently, no
occupation) Family Members Mother, Wife, 3
Children Onset of ALS 1990 19 Years since
the Onset of ALS, 14 Years with a
Ventilator 13 Years and 6 Months of Home Care
Life with a Ventilator
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How I came to use the artificial respirator

• I was diagnosed with the life expectancy of
  three years at the age of 44 in 1992. At that
  time, there were some days I cried that I wanted
  to live till at least 55 years old. Although I
  had kept rejecting putting on a ventilator, I was
  not able to bear the difficulty in breathing as
  it became severer and severer, and finally I
  determined to use the ventilator. Since I wore
  the ventilator for the first time in 1996, I have
  been living positively as though I were reborn. I
  did not want to live a life that was shameful to
  my children, and pledged to work for others from
  my bed. I have had not only a lot of difficulties
  but also happiness. I learned the importance of
  life by using the ventilator. I realized the
  great significance in meaning of life. Now I
  think I made a right decision to use the
  ventilator.

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Everyday life, Going out, Enjoyment, motivation
for life

• 1) I actively go to attend the social events and
  symposiums for ALS patients within my range of
  activity.
• 2) Recently, I lecture at nursing school, and I
  am hosting the training of nursing students at
  home.
• 3) I visit ALS patients as often as possible,
  because just exchanging a few words can cheer
  them up. If I visit the patients, the caregivers
  can also exchange information and reduce their
  stress.
• 4) Once a week, I go out for a walk at the sea
  side and the park for about an hour and 20
  minutes. It is my joy. Open air prevents me from
  catching cold and it also enables me to stabilize
  my health by feeling the change of season.
• 5) Working for the patients association (JALSA)
  becomes my motivation for life.

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• My favorite walking course is the seaside to the
  park.

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I am applying for the transporting support
service, which is the project to support our
local life.

• I go for a walk once a week with two helpers,
  twice a month with nurses from the health center.
  Today it is raining lightly so I go to the beach
  with my raincoat (shower curtain) on.

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Home Care System

• A Home Doctor
• Visits me once a week
• Changes my cannula every two weeks.
• Changes my peg every four months.
• has me take a blood test once a month.
• Chooses a hospital available for twenty
• four hours in the case of emergency.

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Preparing to change my cannula.
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Changing my cannula.
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Dentist and Dental Hygienist

• A dentist visits me once a month (dental scaling
  and dental health
• check)
• A dental hygienist visits me once a week
  (brushing, coaching for the oral
• hygiene)

Brushing teeth
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An orthopedic specialist visits me once a
month.I get visiting rehabilitation once a week
Visiting Rehabilitation
My full body joint movement and breathing
rehabilitation
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Massage

• I have been getting massage 4 times a week for 11
  years. I do not have shoulder stiffness because
  massage strengthens my joint and softens the
  muscle.

I have massage of my full body for 30 minutes.
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Visiting Nurse

• A nurse visits me three times a week, and gives
  me full body bed bath. (Vital check, bed bath,
  washing hair?hand bathing, feet bathing)

A visiting nurse washes my hair every Thursday.
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Bathing Service

• Twice a Week
• (Washing hair, face, body well. Half body
  bathing warms me up.)

Washing Hair
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Home Helper

• Monday to Saturday, from 8 oclock am to 5
  oclock pm, I am having home helpers. (When
  helpers are around, my wife can go to shopping or
  have a nap when necessary. )

Practicing the operation of Ambu for the
emergency.
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????
Washing my hair using a diaper.
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An eye doctor visits me twice a month. I ask
for a dermatologist to visit me when my
skin condition is bad.
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Communication Tools

• I use Lets Chat with Macintosh and
• Windows.

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Switch for the Communication Tools
Hand Sensor in the morning
Face Touch Sensor in the afternoon to write
emails.

• Movement of my thumb is worsening, so it is hard
  to type at the right timing. Still I am training
  to type in order to keep the movement.

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I am a TV man!

• With this computer environment, I freely operate
  TV. I do not have to ask my wife to change TV
  channels anymore, so I now have less fight with
  her.

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What I learned from Home Care

• It is extremely difficult to care him/her by
  his/her family for 24 hours. In my case, the Care
  Insurance System and the Act to Support
  Independence helped reduce my familys burden.
  Relationship among my family members became
  better as I gave them more free time by taking
  advantage of the system as much as I can.
• Managing my physical condition is my
  responsibility. I try to communicate with medical
  practitioners and give them instruction for care
  by myself. I make my personal care manual by
  seeking the most comfortable way of care for me
  and communicating with care takers so that it can
  make care easier for nurse and care takers.
• A satisfactory environment for home care can be
  achieved only when the patient manages his/her
  own care system. I was able to build my care
  system thanks to the communication tools.
• I would like to participate actively in JALSAs
  activities and would like to help other ALS
  patients become happy.

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Good Points about Home Care

• 1.It is possible to spend time with his or her
  family. (He/She can be a member of the family.)
  
• 2.It is possible to spend time in his/her own
  pace.
• 3.It is possible to watch television freely.
• 4.It is possible to have a better internet
  environment.
• 5.It is possible to enjoy visits of many care
  staffs.
• 6.It is possible to use many visiting services
  and keep his/her physical condition.

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A Message for ALS patients in East Asia

• For the participants from South Korea, Taiwan
  and Mongolia, I thank you for coming to Kyoto.
  Home care in Japan has become more difficult with
  reduction of medical fund and care services. I
  would like to appreciate this opportunity to
  exchange information with you to improve the
  environment of home care for the ALS patients.
• Thank you.

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Thank you very much