1. Dementia and care giving
in the developing world
Dr. Jacob Roy Kuriakose
Chairman
Alzheimer’s Disease International(ADI)
Presented at the 2012 Asia Pacific regional conference
of HelpAge International Yangon, Myanmar

2. Dementia
• Dementia is a general term for decline in mental
ability severe enough to interfere with daily life.
Memory loss is an example.
• Dementia is not a specific disease. It's an
overall term that describes a wide range of
symptoms associated with decline in memory
or other thinking skills severe enough to
reduce a person's ability to perform everyday
activities
• Dementia is caused by damage to brain cells.

3. Alzheimer's Disease
• Alzheimer's disease is the
most common cause of
dementia and accounts for
50% - 60% of all cases
• Alzheimer's disease was
first described by Alois
Alzheimer in 1906.

4. Other Causes of Dementia
– Vascular dementia
– Dementia with Lewy bodies (DLB)
– Frontotemporal dementia
– Mixed dementia
– Parkinson's disease
– Reversible dementias like
– Depression
– B12 deficiency
– Thyroid deficiency
– Normal pressure
hydrocephalus
– Brain tumors etc.

5. What happens in the brain
Plaques and tangles develop in the structure of the
brain lead to death of the brain cells

6. Plaque
Plaques are sphere like structures
existing just outside nerve cells.
They are surrounded degenerating
axon terminals & dendrite branches
Tangle
Abnormal structures inside
the nerve cells. They are bundles of
molecules that can kill the nerve
cells in which they live.
What happens in the brain

7. Depletion of the chemical
• Acetylcholine involved in the transmission of
messages with in the brain.

8. Early Stage (1-2 years)
• Become forgetful of recent events
• Some difficulty in finding right words
• Become lost in familiar surrounding
• Lose track of time, of day, month, year,
season
• Have difficulty in making decisions and
handling personal finances
• Have difficulty in carrying out complex
household tasks
• Mood and behaviour - become less active
lose interest in activities and hobbies
• Mood changes like depression and
anxiety;
• May react unusually angry or aggressive

9. Middle Stage (2-5 years)
• Need help for personnel care
• Unable to prepare food, cook,
clean, shop
• Unable to live alone safely
• Behavioural- wandering,
repetition, clinging, sleep
disturbance, hallucination
• May display inappropriate
behaviour
• Become very forgetful
• Difficulty comprehending time,
date, place
• Increasing difficulty with
communication

10. Late stage (5th
year and above)
• Unable to recognize even
close relations.
• May have bladder and
bowel incontinence
• Behavioral changes may
escalate towards carer
• Non verbal agitation
(kicking, hitting, screaming
or moaning)

11. • Has difficulty eating and swallowing
• Needs help in walking and eventually is unable
to walk
• Needs full-time help with personal care,
including toileting
• Is vulnerable to infections especially pneumonia
• Lose the ability to communicate with words
• Refusing, limiting or ending medical treatments
• Making the change from treatment to care that
is focused on comfort

12. Causes of AD
• No one single factor likely, combination of factors
like age, genetic inheritance, environmental factors,
diet, over all general health
Age: 1 in 14 > 65 years
1 in 6 > 80 years
• Genetics – familial AD
- APOE4 gene
• Environmental -?
• Other factors - Downs syndrome
- Head/ whiplash injury
• High risk for smokers, hypertensive, high
cholesterol.

13. Diagnosis of AD – is by
exclusion:
• Blood tests
• Physical exams
• Memory screening
• CT/MRI

14. Treatment:
• No cure available
• Drugs are symptom
modifiers.
• Drugs like Doneperzil,
Rivastigmine,
Galantamine – help to
maintain existing levels
of acetylcholine
• Memantine, prevents
excess Ca + into brain
cells, (excess Ca+ can
damage brain cells).

15. Dementia emerging as an
important public health problem
• Increase in life
expectancy increase
in number of people with
dementia
• Joint families nuclear
family
• Migration of young
people
• Changing values

16. Why is early diagnosis
important
- Early detection lead to early
care.
- Better understanding and
positive attitude
- Not doing intentionally
- Improve coping strategies
- Take care of legal and
financial matters

17. Care giving
• Challenge to even most affectionate family
members
• In advanced AD “36 hours a day”.
• Training of family members
• Training of formal geriatric care workers
• Lot of assumptions on the role of family
members
• Care givers need - Information
- Training
- Motivation
- Help and support

18. Impact on care givers
• Changes in life style
• Loss of freedom
• Exhausting
• Modification in the
house
• Emotional impact
• Physical burden
• Financial burden
• Expensive medications
(no insurance )
• Stigma

19. Skills needed for dementia
care
• Appropriate attitude
• Observational skills
• Practical care skills
• Communication
• Planning and organization
• Design and furnishings
• Management skills
• Ability to value the person
• Interest to improve QoL
• Tolerance
• Understanding when to call
for help

20. Impediments
• Lack of awareness
• Lack of information
in simple language
• Poverty and illiteracy
• Lack of
governmental and
public support.

21. Most distressing symptoms
• Wandering
• Incontinence
• Agitation and
aggression
• In appropriate
behavior including
disinhibition
• Night time
disturbance

22. Strengthen family
• Create attitudinal
change
• Education
• Change
Perception
• Enhance
problem solving
capacity
• Provide support

23. Prevent Dementia
a. Reduce fat intake
b. Engage in physical and social activities
c. Education and intellectual stimulation
d. Control hypertension and type 2 diabetes
e. Use of ginkgo biloba, brahmi, turmeric,
green tea
Reduce risk

24. “Mind your mind”
• Regular BP check
• Protect from head
injury
• Adequate vitamin
E (400 mg)
• Avoid too much
fat
• Avoid smoking
• Physical and
mental activity
• Adequate sleep

25. Low cost care
Empower families with ;
– Reliable
information
– Training
– Provision for home
care, day care,
respite care, long
term care
– Pay attention to
nutrition and
hydration
Families shall continue to be the corner stone of
care

26. Role of medical profession
• Early detection and
diagnosis
• Develop skills to
educate families
• Should have
knowledge about
currently available
medication and use
them
• Help in destigmatise

27. What is Alzheimer’s
Disease International?
• The worldwide federation of 78 national Alzheimer
associations
• Each member is the leading association in its
country
• Vision: an improved quality of life for people with
dementia and their families
• Main objectives: raising global awareness,
strengthening member associations and making
dementia a global health priority

28. ADI member countries

29. ADI key activities
• Annual international
conference
• Alzheimer University
• Twinning Programme
• World Alzheimer’s Day
• Advocacy
• Providing information

30. Involving people with dementia in all
that we do

31. 10/66 Dementia Research Group
• A collective group of
researchers carrying out
population-based research
into dementia, non-
communicable diseases
and ageing in low and
middle income countries
• Aim = to redress the
imbalance in dementia
research in low, middle and
high income countries
• 30 research groups in 20
countries in Latin America,
the Caribbean, India,
Russia, China and South
East Asia
www.alz.co.uk/1066

32. World Alzheimer Report 2009
• Launched 21 September 2009
• Most comprehensive global
prevalence study of dementia
to date
• Estimated 35.6 million people
with dementia worldwide in
2010
• Figure set to almost double
to 65.7 million in 2030
• Includes policy
recommendations and
solutions for governments
www.alz.co.uk/worldreport

33. Dementia worldwide

34. Numbers of people with
dementia (millions)

35. World Alzheimer Report 2010
• Launched 21 September 2010
• Landmark report on
economic cost of dementia
• Cost of dementia = US$604
billion worldwide
• Equivalent to economy of 18th
largest country
• Lower income countries
account for less than 1% of
worldwide costs (but 14% of
prevalence), middle income
countries 10% (but 40% of
prevalence)
www.alz.co.uk/worldreport

36. World Alzheimer Report 2010

37. World Alzheimer Report 2011
• Launched 13 September 2011
• Strong argument for early
diagnosis and intervention
• As many as 28 million of the
36 million people with
dementia have not yet
received a diagnosis
• Availability of evidence-based
intervention guides for
primary care services in
resource-poor settings
www.alz.co.uk/worldreport

38. Dementia in the Asia
Pacific Region
• In 2010, 15.9 million of the estimated 35.6 million
people with dementia live in the Asia Pacific
region
• 89% increase in people with dementia in
developed Asia Pacific countries from 2010-2030,
107% increase in south Asia, and 117% growth in
east Asia
• The cost per person with dementia is lowest in
the South East Asia region (more than 50 times
lower than the richest world regions) at just
US$903

39. WHO report on dementia
• Launched on 11 April
2012
• International
collaboration between
ADI and WHO
• A new case of dementia
every 4 seconds
• Inclusion of ADI’s figures
from World Alzheimer
Reports
• Call for WHO member
nations to act now
www.alz.co.uk/WHO-dementia-report

40. ADI and the NCD Summit
• Summit on Non Communicable Diseases
September 2011 – 2nd
High Level Meeting of
the UN on a health topic (focusing on
diabetes, cancer, heart and lung diseases)
• Partner in NCD Alliance
• Alzheimer’s disease recognised as key
issue
• Further advocacy needed for changes in
WHO policy

41. “International Coalition on
Dementia”
ADI in partnership with:

42. Take away message
• If we don’t act now, dementia is going to be the
main health and social crisis of the 21st
century
• There is a lot we can do:
– Raise awareness and education
– Diagnosis and intervention (medical and non-
medical)
– National plans for every country: improve public
health systems
– More $$ needed for research
• Encourage your government to support our
position at WHO: dementia as 5th
major NCD and
recognise importance of ageing

43. How can HelpAge and ADI
Work Together
• In raising global awareness and advocacy
especially during world Alzheimer’s Day/Month
• In countries where ADI has member organisation
work with them
• Where there are no ADI member, help us develop
one
• Collaborate in
» Training
» Develop caregivers manuals
» Guidelines to setup home care, Day
care, Respite care, long term,
residential care and memory clinics

44. We can make a difference
• It is possible to develop a cost effective, culturally
acceptable dementia care
• Need more scientific studies
• Sensitise at all levels
• Encourage developing country reports on dementia
• Work with governments to include dementia in their
national plans
• Our ultimate is to create a society which is sensitive
to needs of people with dementia
• Develop a knowledgable society which is dementia
friendly, where a person with dementia can live with
dignity and honour.

45. Thank you
Website: www.alz.co.uk
Email: info@alz.co.uk
Facebook: www.facebook.com/alzheimersdiseaseinternational
Twitter: www.twitter.com/AlzDisInt