Dementia and care giving in the developing world

Dr. Jacob Roy KuriakoseChairmanAlzheimer’s Disease International(ADI)

Presented at the 2012 Asia Pacific regional conference of HelpAge International Yangon,

Myanmar

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. 

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.

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.

What happens in the brain

Plaques and tangles develop in the structure of the brain lead to death of the brain cells

PlaquePlaques are sphere like structures existing just outside nerve cells. They are surrounded degenerating axon terminals & dendrite branches

TangleAbnormal 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

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 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

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

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)

• 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

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.

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 maintain existing levels of acetylcholine

• Memantine, prevents excess Ca + into brain cells, (excess Ca+ can damage brain cells).

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

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

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

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

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

Impediments

• Lack of awareness

• Lack of information in simple language

• Poverty and illiteracy

• Lack of governmental and public support.

Most distressing symptoms

• Wandering

• Incontinence

• Agitation and aggression

• In appropriate behavior including disinhibition

• Night time disturbance

Strengthen family

• Create attitudinal change

• Education

• Change Perception

• Enhance problem solving capacity

• Provide support

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

“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

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

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

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

ADI member countries

ADI key activities

• Annual international conference

• Alzheimer University

• Twinning Programme

• World Alzheimer’s Day

• Advocacy

• Providing information

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, 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

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

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 = 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

World Alzheimer Report 2010

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

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

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

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

“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

• 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

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

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.

Thank you

Website: www.alz.co.ukEmail: info@alz.co.uk

Facebook: www.facebook.com/alzheimersdiseaseinternationalTwitter: www.twitter.com/AlzDisInt