Dementia and care giving
in the developing world
Dr. Jacob Roy Kuriakose
Chairman
Alzheimer’s Disease International(ADI)
P...
Dementia
• Dementia is a general term for decline in mental
ability severe enough to interfere with daily life.
Memory los...
Alzheimer's Disease
• Alzheimer's disease is the
most common cause of
dementia and accounts for
50% - 60% of all cases
• A...
Other Causes of Dementia
– Vascular dementia
– Dementia with Lewy bodies (DLB)
– Frontotemporal dementia
– Mixed dementia
...
What happens in the brain
Plaques and tangles develop in the structure of the
brain lead to death of the brain cells
Plaque
Plaques are sphere like structures
existing just outside nerve cells.
They are surrounded degenerating
axon termina...
Depletion of the chemical
• Acetylcholine involved in the transmission of
messages with in the brain.
Early Stage (1-2 years)
• Become forgetful of recent events
• Some difficulty in finding right words
• Become lost in fami...
Middle Stage (2-5 years)
• Need help for personnel care
• Unable to prepare food, cook,
clean, shop
• Unable to live alone...
Late stage (5th
year and above)
• Unable to recognize even
close relations.
• May have bladder and
bowel incontinence
• Be...
• Has difficulty eating and swallowing
• Needs help in walking and eventually is unable
to walk
• Needs full-time help wit...
Causes of AD
• No one single factor likely, combination of factors
like age, genetic inheritance, environmental factors,
d...
Diagnosis of AD – is by
exclusion:
• Blood tests
• Physical exams
• Memory screening
• CT/MRI
Treatment:
• No cure available
• Drugs are symptom
modifiers.
• Drugs like Doneperzil,
Rivastigmine,
Galantamine – help to...
Dementia emerging as an
important public health problem
• Increase in life
expectancy increase
in number of people with
de...
Why is early diagnosis
important
- Early detection lead to early
care.
- Better understanding and
positive attitude
- Not ...
Care giving
• Challenge to even most affectionate family
members
• In advanced AD “36 hours a day”.
• Training of family m...
Impact on care givers
• Changes in life style
• Loss of freedom
• Exhausting
• Modification in the
house
• Emotional impac...
Skills needed for dementia
care
• Appropriate attitude
• Observational skills
• Practical care skills
• Communication
• Pl...
Impediments
• Lack of awareness
• Lack of information
in simple language
• Poverty and illiteracy
• Lack of
governmental a...
Most distressing symptoms
• Wandering
• Incontinence
• Agitation and
aggression
• In appropriate
behavior including
disinh...
Strengthen family
• Create attitudinal
change
• Education
• Change
Perception
• Enhance
problem solving
capacity
• Provide...
Prevent Dementia
a. Reduce fat intake
b. Engage in physical and social activities
c. Education and intellectual stimulatio...
“Mind your mind”
• Regular BP check
• Protect from head
injury
• Adequate vitamin
E (400 mg)
• Avoid too much
fat
• Avoid ...
Low cost care
Empower families with ;
– Reliable
information
– Training
– Provision for home
care, day care,
respite care,...
Role of medical profession
• Early detection and
diagnosis
• Develop skills to
educate families
• Should have
knowledge ab...
What is Alzheimer’s
Disease International?
• The worldwide federation of 78 national Alzheimer
associations
• Each member ...
ADI member countries
ADI key activities
• Annual international
conference
• Alzheimer University
• Twinning Programme
• World Alzheimer’s Day
•...
Involving people with dementia in all
that we do
10/66 Dementia Research Group
• A collective group of
researchers carrying out
population-based research
into dementia, no...
World Alzheimer Report 2009
• Launched 21 September 2009
• Most comprehensive global
prevalence study of dementia
to date
...
Dementia worldwide
Numbers of people with
dementia (millions)
World Alzheimer Report 2010
• Launched 21 September 2010
• Landmark report on
economic cost of dementia
• Cost of dementia...
World Alzheimer Report 2010
World Alzheimer Report 2011
• Launched 13 September 2011
• Strong argument for early
diagnosis and intervention
• As many ...
Dementia in the Asia
Pacific Region
• In 2010, 15.9 million of the estimated 35.6 million
people with dementia live in the...
WHO report on dementia
• Launched on 11 April
2012
• International
collaboration between
ADI and WHO
• A new case of demen...
ADI and the NCD Summit
• Summit on Non Communicable Diseases
September 2011 – 2nd
High Level Meeting of
the UN on a health...
“International Coalition on
Dementia”
ADI in partnership with:
Take away message
• If we don’t act now, dementia is going to be the
main health and social crisis of the 21st
century
• T...
How can HelpAge and ADI
Work Together
• In raising global awareness and advocacy
especially during world Alzheimer’s Day/M...
We can make a difference
• It is possible to develop a cost effective, culturally
acceptable dementia care
• Need more sci...
Thank you
Website: www.alz.co.uk
Email: info@alz.co.uk
Facebook: www.facebook.com/alzheimersdiseaseinternational
Twitter: ...
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Dementia and care giving in the developing world

  1. 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. 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. 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. 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. 5. What happens in the brain Plaques and tangles develop in the structure of the brain lead to death of the brain cells
  6. 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. 7. Depletion of the chemical • Acetylcholine involved in the transmission of messages with in the brain.
  8. 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. 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. 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. 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. 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. 13. Diagnosis of AD – is by exclusion: • Blood tests • Physical exams • Memory screening • CT/MRI
  14. 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. 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. 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. 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. 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. 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. 20. Impediments • Lack of awareness • Lack of information in simple language • Poverty and illiteracy • Lack of governmental and public support.
  21. 21. Most distressing symptoms • Wandering • Incontinence • Agitation and aggression • In appropriate behavior including disinhibition • Night time disturbance
  22. 22. Strengthen family • Create attitudinal change • Education • Change Perception • Enhance problem solving capacity • Provide support
  23. 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. 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. 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. 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. 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. 28. ADI member countries
  29. 29. ADI key activities • Annual international conference • Alzheimer University • Twinning Programme • World Alzheimer’s Day • Advocacy • Providing information
  30. 30. Involving people with dementia in all that we do
  31. 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. 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. 33. Dementia worldwide
  34. 34. Numbers of people with dementia (millions)
  35. 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. 36. World Alzheimer Report 2010
  37. 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. 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. 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. 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. 41. “International Coalition on Dementia” ADI in partnership with:
  42. 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. 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. 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. 45. Thank you Website: www.alz.co.uk Email: info@alz.co.uk Facebook: www.facebook.com/alzheimersdiseaseinternational Twitter: www.twitter.com/AlzDisInt

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