World Alzheimer's Day on 21st Sep 2011: Theme – Faces of Dementia

New case of dementia arises every seven seconds in the world . And India will have one of the largest numbers of elders with this mind crippling illness.

World Alzheimer’s Day was launched 17 years ago on 21st September 1994, to unite people affected by Alzheimer’s disease and other dementias around the world. The day gives people with dementia, carers and medical professionals worldwide the chance to share their stories and take part in a variety of activities in order to raise awareness among the public and key decision makers.

World Alzheimer’s Day also provides Alzheimer’s associations with an opportunity to share their work and connect with more people in need of their services.

According to many scientific estimates published worldwide, a new case of dementia arises every seven seconds in the world with the number of people with dementia set to double every 20 years. The global figures are estimated at 36 million people living with Alzheimer’s and related disorders as per Alzheimer’s Disease International (ADI) World Report 2010.  By 2040, over 82 million elderly people are expected to have AD if the current numbers hold and no preventive treatments become available.


The number of persons with dementia double every 5 years of age and so India will have one of the largest numbers of elders with this problem. As per the current estimates of 3% of Elderly population , India has about 3.7 million persons with dementia (2.1 million women and 1.5 million men) and this figure will double by 2030 to about 7 million persons. The cost of caring as a country has been conservatively estimated at present is Rs. 14,700 Crores. While the numbers are expected to double by 2030, cost would increase three times. The study, the first such authenticated one ever undertaken in a developing country, was done by Alzheimer’s and Related Disorders Society of India (ARDSI), a non-profit organization established in 1992, which has published a country status report on Dementia (The Dementia India Report 2010).

 

Estimates for the Numbers of People with Dementia, State-wise in India

Table below indicates how the projected number of people aged 65 and older with dementia for years 2011, 2016 and 2026 varies by state and region in India . The percentage change in AD between year 2006 and each of the subsequent time periods is also shown in the table. Projections were made using  meta-analyzed prevalence estimation for India and the 2001 Census data for future projection (2006d;2009).


Below Table illustrates that there is not only substantial variability between states in the projected numbers of people with dementia, but also between regions of the country. By 2026 more than 500,000 older PwD are expected to be living in Uttar Pradesh and Maharashtra. 

In other states, (Rajasthan, Gujarat, Bihar, West Bengal, Madhya Pradesh, Orissa, Andhra Pradesh, Karnataka, Kerala and Tamil Nadu) around 20,000 to 40,000 PwD are expected within the next 26 years. Compared to 2006, Delhi, Bihar and Jharkhand are expected to experience 200% (or greater) increment in total number of dementia cases over 26-year period. Other states (Jammu and Kashmir, Uttar Pradesh, Rajasthan, Madhya Pradesh, West Bengal, Assam, Chhattisgarh, Gujarat, Andhra Pradesh, Haryana, Uttaranchal, Maharashtra, Karnataka and Tamil Nadu) are expected to experience  100% (or more) change in number of people older PwD.


By the years 2026, more than 50 % of PwD in India is expected to be living in Andhra Pradesh, Bihar, Maharashtra,Tamil Nadu, Uttar Pradesh, West Bengal  and  less than 20% PwD  can be seen in Jammu and Kashmir , Himachal Pradesh, Punjab, Haryana, Uttarakhand, Chhattisgarh, Jharkhand and North East states.


The increased numbers of PwD will have a marked impact on the states’ infrastructures and healthcare systems, which are ill prepared in many regions and also on families and carers.

Projected changes between 2006 and 2026 in number of PwdD State Wise

States

Year

Projected numbers (in ‘000s) with dementia by age group

Percentage of change in dementia’s compared to 2006

65-69

70-74

75-79

80+

Total

Maharashtra

2006

47.7

67.5

80.0

82.8

277.9

(2.7 lakh)

2011

47.7

68.2

89.2

155.0

360.1

3.6 lakh

29

2016

56.4

69.1

92.2

211.8

429.5

54

2021

71.2

82.7

95.0

252.1

501.0

80

2026

88.8

105.4

115.3

282.3

591.7

5.91 lakh

112

These alarming figures are a call to action. Government must start to plan policy and allocate health and welfare resources for the future. There has to be fundamental awareness among policy makers, clinicians and the public and more community based services, welfare and support at an accelerated pace. Many developed countries like USA, UK, France, Australia, New Zealand and Canada have National Dementia Strategies and Dementia Programmes for their countries.  In Asia, some of the countries that are developing a National Dementia Programme are Japan, Singapore and Korea. 

Since its inception, ARDSI is been working with the aim of raising awareness, developing care and services, offer trainings, promote research and to work on advocacy for national policies and programmes in need of patients with dementia and families across India. Presently ARDSI has 14 chapters in India, apart from running directly day care centres, domiciliary care services, respite care centres, memory clinics and training for doctors, nurses and care givers. ARDSI is the first Afro-Asian organization to receive full membership with Alzheimer’s Disease International (ADI) a worldwide federation of 76 national Alzheimer associations across the globe, which has an official relationship with the W.H.O.

Dementia is one of the major causes of disability in late life.  A syndrome usually chronic, characterized by Memory Loss , a progressive, collective deterioration of intellect including memory, learning, orientation, language, comprehension and judgment due to disease of the brain, it mainly affects older people; about 2% of cases start before the age of 65 years.  After this, the prevalence doubles with the increase of every five year. Once considered a rare disorder, Alzheimer’s Disease-AD, is now seen emerging as a major public health and social problem that is seriously affecting millions of older people and their families. 

The Dementia syndrome is linked to a very large number of underlying causes

and diseases in the brain. The common causes accounting for 90% of all cases are

Alzheimer’s disease, Vascular dementia, dementia with Lewy bodies and Frontotemporal dementia. These are degenerative brain diseases and altering the

progressive course of the disorder is not possible. However, symptomatic treatments may delay the relentless course of the disease, ameliorate the troublesome behavioural symptoms and timely support can help people with dementia and carers.

Some less common causes of dementia (like chronic infections, brain tumours, hypothyroidism, subdural haemorrhage, normal pressure hydrocephalus, metabolic conditions, and toxins or deficiencies of vitamin B12 and folic acid) are particularly important to detect since some of these conditions may be treated partially by timely medical or surgical intervention.

Dementia Types and Characteristics :

Dementia subtype

Early, characteristic symptoms

Neuropathology

Proportion of dementia cases

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Alzheimer’s disease (AD)

Impaired memory, apathy and depression

Gradual onset

Cortical amyloid plaques and neurofibrillary tangles

50-75%

Vascular dementia (VaD)

Similar to AD, but memory less affected, and mood fluctuations more prominent

Physical frailty

Stepwise progression

Cerebrovascular disease

Single infracts in critical regions, or more diffuse multi-infarct disease

20-30%

Dementia with Lewy Bodies (DLB)

Marked fluctuation in cognitive ability

Visual hallucinations

Parkinsonism (tremor and rigidity)

Cortical Lewy bodies (alpha-synuclein)

<5%

Frontotemporal dementia (FTD)

Personality changes

Mood changes

Disinhibition

Language difficulties

No single pathology – damage limited to frontal and temporal lobes

5-10%

10 warning signs of Alzheimer’s:

1. Memory loss. Forgetting recently learned information is one of the most common early signs of dementia. A person begins to forget more often and is unable to recall the information later.

2. Difficulty performing familiar tasks. People with dementia often find it hard to plan or complete everyday tasks. Individuals may lose track of the steps involved in preparing a meal, placing a telephone call or playing a game.

3. Problems with language. People with Alzheimer’s disease often forget simple words or substitute unusual words, making their speech or writing hard to understand. They may be unable to find the toothbrush, for example, and instead ask for “that thing for my mouth.”

4. Disorientation to time and place. People with Alzheimer’s disease can become lost in their own neighborhood, forget where they are and how they got there, and not know how to get back home.  

5. Poor or decreased judgment. Those with Alzheimer’s may dress inappropriately, wearing several layers on a warm day or little clothing in the cold. They may show poor judgment, like giving away large sums of money to telemarketers.

6. Problems with abstract thinking. Someone with Alzheimer’s disease may have unusual difficulty performing complex mental tasks, like forgetting what numbers are for and how they should be used.

7. Misplacing things. A person with Alzheimer’s disease may put things in unusual places: an iron in the freezer or a wristwatch in the sugar bowl.

8. Changes in mood or behavior. Someone with Alzheimer’s disease may show rapid mood swings – from calm to tears to anger – for no apparent reason.

9. Changes in personality. The personalities of people with dementia can change dramatically. They may become extremely confused, suspicious, fearful or dependent on a family member.

10. Loss of initiative. A person with Alzheimer’s disease may become very passive, sitting in front of the TV for hours, sleeping more than usual or not wanting to do usual activities.

Early identification is important for bringing management in daily life, which would help both the person and the carer for a secured and dignified living. Further, early diagnosis would also increase timely medical and / or surgical intervention as some less common causes of dementia like chronic infections, brain tumors, hypothyroidism, subdural hemorrhage, normal pressure hydrocephalus, metabolic conditions and toxins or deficiencies of vitamin B`12 and folic acid are may be treated partially.

The Course and Outcome of Dementia

Dementia affects every person in a different way. Its impact can depend on

what the person was like before the disease; his/her personality, lifestyle, significant

relationships and physical health. The problems linked to dementia can be best

understood in three stages. The duration of each stage is given as a guideline;

sometimes people can deteriorate quicker, and at other times more slowly.

Early Stage:  first year or two

The early stage is often overlooked. Relatives and friends (and sometimes professionals as well) see it as ‘old age’, just a normal part of the ageing process. Because the onset of the disease is gradual, it is difficult to be sure exactly when it begins. The person may:

·         Have problems talking properly (language problems)

·         Have significant memory loss – particularly of events that have just happened

·         N
ot know the time of day or the day of the week

·         Become lost in familiar places

·         Have difficulty in making decisions

·         Become inactive and unmotivated

·         Show mood changes, depression or anxiety

·         React unusually angrily or aggressively on occasion

·         Show a loss of interest in hobbies and activities

Middle stage : second to fourth or fifth years

As the disease progresses, limitations become pronounced and more restricting. The PwD has difficulty with day-to-day living and:

·         May become very forgetful – especially of recent events and people’s names

·         Can no longer manage to live alone without problems

·         Is unable to cook, clean or shop

·         May become extremely dependent on their family and carers

·         Needs help with personal hygiene, i.e., toilet washing and dressing

·         Has increased difficulty with speech

·   Shows problems with wandering and other behaviour problems such as repeated questioning and calling out, clinging and disturbed sleeping

·         Becomes lost at home as well as outside

·         May have hallucinations (seeing or hearing things which aren’t really there)

Late Stage : fifth year and after

This stage is one of near total dependence and inactivity. Memory disturbances are very serious and the physical side of the disease becomes more obvious. The person may:

·         Have difficulty eating.

·         Be incapable of communicating

·         Not recognise relatives, friends and familiar objects

·         Have difficulty understanding what is going on around him/her

·         Be unable to find his /her way around in the home

·         Have difficulty walking

·         Have bladder and bowel incontinence

·         Display inappropriate behaviour in public

·         Be confined to a wheel chair or bed

The Management of Dementia: The standard treatment goals are

·         Early diagnosis

·         Optimization of physical health, cognition, activity and well being

·         Detection and treatment of BPSD

·         Educating carer and providing long term support to carer

The Dementia India Report 2010 was an effort to document comprehensive holistic care and support to the affected people and their families, a nation-wide assessment of prevalence, gaps in service facilities available and cost of care services, analysed through series of workshops all over India in the presence of experts in the medical stream of neurology, psychiatry, psychology, NGOs, architects, insurance people, lawyers etc,.

The following details give the highlights of the status of Dementia in India:

·         The impact of dementia on the individual, the family and society will increase exponentially in terms of the burden, disablement and cost of care. There will be an increase in demand for support services.

·         Person with dementia do not access and use health and social care services. A small portion of persons with dementia and families access private health services due to absence of or unsatisfactory public services, which is again delivered at piece meal and inefficient fashion.

·         Dementia care is characterized by a significant lack of service delivery and evidence on outcomes with interventions.

·         More investment and careful planning will be needed to maximize the quality of life of Persons with dementia and their families, and to accomplish that in an efficient manner with the available services.

·         There are hardly any standard practice guidelines and treatment centres in India.

The recommendations that follow therefore contain both a series of proposals for poli
cy development and proposals for improving the evidence base:

Recommendations:

1.    Make Dementia a national priority

2.    Increase funding for dementia research

3.    Increase awareness about dementia

4.    Improve dementia identification and care skills

5.    Develop community support

6.    Guarantee carer support packages

7.    Develop comprehensive dementia care models

8.    Develop new National Policies and Legislation for People with Dementia.

For more details and reference:

Alzheimer’s and Related disorders Society of India (ARDSI)

National Administrative Office

P. B. No. 53, Guruvayoor Road,

Kunnamkulam – 680 503 Kerala INDIA.

Tel: 04885 223801 / Fax: 04885 224817

Tel. 098461 98473 (Helpline)

Email: alzheimr@md2.vsnl.net.in, ardsinationaloffice@gmail.com

www.alzheimer-india.org

Mumbai Helpline:

1.    ‘1298 ‘ Senior Citizens Helpline

2.    9987104233 ( Mon to Sat 10am to 6pm) – ARDSI Greater Mumbai Chapter & Silver Inning Foundation

.Email: ardsigreatermumbai@gmail.comsilverinnings@gmail.com

By:

Sailesh Mishra

Founder President – Silver Inning Foundation
Founder – ARDSI Greater Mumbai Chapter

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