Founder ALZI-Regional Director ADI
Asia Pacific, DY SuharyaPIPEBI, Jakarta, 19 April 2018
HUT PERNIKAHAN YAYA SUHARYA & TIEN SUHERTINI
15 AGUSTUS 1958 – 15 AGUSTUS 2012RIP Mom 3-8-1934/21-4-2017
Situ Ciburuy, Padalarang, Jabar, 1958 Kayu Putih Tengah, Jakarta, 2012
RIP Mom, Tien Suharya3-8-1934 / 21-4-17
The Caregivers
The Suharya’s
AgeApo-E Genetic
Vascular
factors
Trauma
History of
depression
Lifestyle
Nutrition
Diabetes
Education
Environment
Social network
Mental
exercise Fitness
Alzheimer’s Disease
Comorbidity
Stages of Dementia
8
Mild Stage
• Misplacing items• Forgetting recent events / conversations• Having difficulty with operating more complex household appliances• Losing interest in hobbies • Repeating questions / statements / stories
ModerateStage
• Ability to think, reason, communicate & function deteriorates dramatically• Difficulty using household appliances & telling time• Self care capacity is generally retained• Behavioural symptoms e.g. wandering, restlessness & delusions may
emerge
Severe Stage
• Loses capacity for self-care• Dependent on caregiver for basic daily living activities e.g. eating,
dressing, toileting, bathing.• Behavioural disturbances such as agitation & aggression may be
present
Source : Voices From the Heart – Living with Dementia
Challenges
Despair Discouraged
Resentment
Anger
FrustrationOverwhelmed
Exhausted
Sorrow
Gains
Fulfilment Love
Patience
Encouraged
Achievement
Purpose and Meaning
Optimism
Stronger
What is meaningful activity?
“The purpose of activity is
1.not to kill time, but to make life,
2.not to keep a person occupied, but to keep them refreshed;
3.not to offer an escape from life, but to provide a discovery of life.”
11
Benefits of meaningful activities
Reduce behavioural challenges
Improve sleep habits
Stimulate the minds
Develop and build relationships
Enhance physical and emotional well-
being
12
Why does behaviour change?
Change in response to:
• physical environment
• social environment
• communication patterns
• tasks
• physical factors • personal preferences
Change in behaviour = UNMET NEED
13
FIGHT FLIGHTor
Examples of Unmet Needs
Repetitive Vocalisation
Unheard needs, not validated, being assertive
Wandering
Boredom, purposeless, need to explore
Refuses Personal Care
Being assertive, self-protection from threat, self-sufficient
Rummaging
Seeking familiarity, purpose, exploration
Global Leaders
Effects on carers• High levels of stress
• Physical health suffers
• Social isolation
• Financial hardship
INDONESIA:
• 240 M Population
• PWD:
1 M in 2013
2 M in 2030
4 M in 2050
• USD$ 2.2 Billion per year (Costs)
ALZHEIMER INDONESIA
Aims to improve the quality life of people with dementia and their caregivers in Indonesia through advocacy, awareness raising, capacity building activities as well as collaborating with all stakeholders in establishing dementia friendly cities in IndonesiaEstablished: 3rd August 2013Facebook Followers: 2000 ++Caregivers Meeting Participants: 2000 ++Volunteers: 1000 ++
VISI ALZI:
MENINGKATKAN KUALITAS HIDUP ORANG DENGAN DEMENSIA DAN CAREGIVER DI
INDONESIA
SEMBOYAN:
JANGAN MAKLUM DENGAN PIKUN
#MELAWANPIKUN
10 WARNING SIGNS ALZ
DY Suharya
World Alzheimer’s Day
• 21 September adalah HariAlzheimer Dunia
• Diluncurkan di tahun 1994
• Event global yang dilakukan di lebih dari 60 negara
World Alzheimer’s Month
ADVOCACY
LEADERSHIP COMMITMENTSOLID SUPPORT
Support from Governor of DIY, Jakarta and Central Java
PARTNERSHIPS
National Seminar on Dementia 1st book on Alz in Indonesia
10 Signs animation video Jakarta videotron on traffic jam
WORLD’S ALZ MONTH
Global Recognition
Increased Awareness @ Schools (10,000 Students in 3 Days)
T Shirt & Book
Jalan Sehat
Caregivers Training
Caregivers Meeting Indonesia
• Caregivers Meeting #56, Jakarta 5th May 2018
• Depok #35
• Jogja #13
• Bandung #12
• Manado #9
• Malang #5
• Salatiga #4
• Medan, Solo, Surabaya, Bogor #3
• Bali #2
• Bekasi #1 (27th Jan 2018)
• Solo
How Can You Help?
• Become a Volunteer/Champion register di: http://bit.ly/volunteer4alzi
• Contribute your skills to ALZI’s activities
• Donate: http://www.kitabisa.com/melawanpikun
• Express love, care constantly
• Person first, not the task
• Forming meaningful relationships
• Maximize your time – creating “quality moments” ---> Happiness
How to Care for PwD
Person Centred Care (PCC)
Applying PCC
ISSUE PCC APPROACH
Memory loss• Be patient, repeat ‘new’ information constantly• Draw on long-term memory• Prompt with non-verbal cues, such as gestures or pictures
Disorientation• Orientate and reassure a person with dementia verbally and
through signs in their environment
Communication• Listen and observe body language• Allow time for a person with dementia to respond (Go at their
pace)
Self-Care • Support NOT “Take over” the task where possible
Wandering • Supervise and ensure safety within the environment
Challenging behaviour
• Find out why a person with dementia is behaving this way• Understand sometimes the behaviour is the only way they can
express themselves
36
10 Tips untuk Berkomunikasi dengan ODD
Thank You!