THE CHALLENGE OF DEMENTIA
And ARDSI Calcutta
TOGETHER WE CAN MAKE A DIFFERENCE
“Old age care is a special responsibility. The debilitating
Old-age disease Dementia and its most dreaded version Alzheimer’s Disease pose a major challenge to all nations. The challenge is increasing and the nations must be prepared to face it. ARDSI Calcutta is devoted to this urgent mission. The Dementia Daycare Centre
of ARDSI Calcutta and its other services and
expansion plans are praiseworthy.”
-- Message from Hon’ble Prime Minister Dr Manmohan Singh on the inauguration of the Daycare Centre
“I have great fulfillment, great satisfaction and great prayerful hope as I dedicate this (daycare) centre.”
-- Shri Gopalkrishna Gandhi, Hon’ble Governor of West Bengal at the Nandan congregation as he dedicated the dementia daycare centre to the service of community
on September 20, 2008
Dementia epidemic: Dementia, a predominantly old-age debilitating neuro-psychiatric disease, is the biggest irony of living long and constitutes the flip side of the tremendous advancement in the medical sciences and health care which has pushed up life expectancy. As the world demography undergoes a definite change in the age profile, with the number and the ratio of old people (60+) in the total population constantly rising, dementia is fast approaching to hit the world in a proportion of epidemic. Every seven seconds one new incidence of dementia is taking place in some part of the globe. It has been projected that the Asia Pacific region will be the hardest hit region in this imminent epidemic. China will be the worst hit country. India will earn the dubious distinction of emerging second, next only to China, in the dementia map.
Region/ Prevalence Incidence Projection
World 30 4.6 100
Asia Pacific 14 4.3 65
China 5.5 1.7 27
India 3.5 1.0 16.5
Notes: All figures are in million. Prevalence is the estimated current total number of people inflicted by dementia and Incidence is the current rate of rise of dementia population per year. Ref: ADI, Access Economics study (2006)
According to a study by the Indian Council for Medical Research, there is an estimated 40 lakh elederly population in West Bengal, out of which 80,000 are having dementia. The figures for the city Kolkata are 2.3 lakh and 46,000, respectively.
Age is the single most important risk factor for dementia. The probability of having dementia increases steeply with the increase in age. Those aged over 60 in the Asia Pacific will increase from under 10 per cent now to 25 per cent of the total population by 2050, and those over 80 years will increase five times - from 1 per cent to 5 per cent. So dementia epidemic is a certainty.
Disease burden: A comparison with the leading diseases in the Asia Pacific region reveals that dementia scores quite high in terms of ‘burden of disease’, a concept developed by Harvard School of Public Health in association with the World Bank and the World Health Organisation to assess the extent of loss of health, life and wellbeing due to mortality, morbidity and disability. Burden of Disease = Mortality Burden + Morbidity and Disability Burden.
Nearly 100 million DALYs (One DALY – Disability -Adjusted Life Year – represents loss of one year of equivalent full health; DALYs for a disease are the sum of the years of life lost due to premature mortality in the population and the years of healthy life lost due to disability) are lost each year due to neuro-psychiatric conditions, which is the second highest source of disease burden after infectious and parasitic diseases, and higher than cardiovascular disease, injuries, perinatal disorders or cancer (neoplasms). Within neuro-psychiatric conditions, at present depression ranks 1st (with 38.5% of disease burden, i.e., 38.5% of 100 million DALYs) and dementia comes 6th (with 5% disease burden). But dementia is fast racing to overtake depression as the leading source of disability by 2016. In the Asia Pacific, dementia accounts for a disease burden almost similar as that from all tropical diseases taken together, and higher than malaria, tetanus, breast cancer, drug abuse or war. The disease burden from dementia is projected to increase by over 76 per cent over the next quarter century.
To get a complete assessment of loss of life, health and wellbeing due to dementia, we need to factor in the indirect disease burden generated by dementia in the form of acute stress, strain, trauma, depression and other diseases and disorders the family carers are so prone to develop. As dementia warrants 24x7 intensive care and negotiating various psychological and behavioural abnormalities, the individual, social, professional and economic life of the family care givers are shattered and they themselves tend to develop various psychological disorders and stress-related diseases.
Economic impact: The deflating impact of the high disease burden of dementia on the national production is easily comprehensible. However, we do not yet have any ready statistics about this and a comprehensive study in this regard should be commissioned.
Dementia has the potential to have a devastating impact on the public health systems. This is not only because of the graying of the population but because dementia is among the most disabling chronic diseases. Quantification of costs in the public health care sector to be thrust upon by dementia epidemic varies widely with the country and various other factors like the level of health care a country enjoys at present, the mix of care, etc. However, costs will definitely rise relative to gross domestic product as prevalence increases. A study on the Asia Pacific has estimated the cost of dementia at $60.4 billion (in 2003 US dollar). More cost studies are required, specially for our country.
As sensitivity to the impending dementia epidemic is at a pathetically low level in India, we cannot escape a high cost in tackling the menace. It is urgently needed that our nation becomes aware of the problem, specify the challenges, draw up a cost-effective prioritized action plan and start implementation without making any further delay.
Since age is the single most important risk factor for dementia, and old people unfortunately constitute one of the weaker sections of the society, the problem gets obviously compounded. The present socio-economic and lifestyle realities and value systems like urbanisation, trends away from extended families and towards nuclear families and the increasing number of older people who thus live alone, labour and job mobility with increasing number of children staying away and abroad, a somewhat negative perception about spending in geriatric care that is prevalent at both individual and social levels, etc. create serious hurdles to tackling dementia and exacerbate the social and economic impact of dementia.
Challenges and roadmap for tackling dementia
Leaving aside the most fundamental challenge of finding a cure therapy for dementia, the roadmap for tackling dementia and its progression towards an epidemic-like situation can be laid out as follows.
Prevention: It has been seen that the most effective way to make savings on dementia costs would be if the onset of dementia could be delayed or incidence reduced through prevention approaches arising from new research. So people have to be made aware of the preventive measures.
Early diagnosis: Early diagnosis and early intervention go a long way to slow down the process of degeneration and improve quality of life. Early diagnosis is thus a pre-requisite for better care and treatment.
Appropriate care: Till date we do not have any cure drug for dementia. Treatment of the irreversible progressive degenerative diseases causing dementia essentially means trying to (i) slow down the pace of progression of the disease, (ii) give symptomatic relief and (iii) ensure wellness or quality of life as much and as long as possible. This is done through administration of medicine and provision of proper care. In the present state of affairs, where we do not yet have a cure drug for dementia, care assumes the most significant aspect of the treatment. For no other disease perhaps, care is as important as it is for dementia. Care here is not only a supportive aspect of the course of treatment, it constitutes the core. If dementia can be diagnosed early and in the early and middle stages of the disease, appropriate care contributes positively and in good amount towards retarding the deterioration and ensuring a better quality of life..
Support for family care givers: Dementia care giving is a hard specialised 24x7 task. Family care givers are the main characters in the care chain. They need to be supported emotionally and technically. They need regular respite to rejuvenate their health and energy so as to enable them to give quality care over a long period and maintain their own physical health and mental fortitude. They also need time off caring task to meet their individual, social and professional obligations.
Our activities designed on the above roadmap
Awareness campaign: The most fundamental and important activity. All people need to be empowered with the full knowledge of the disease, the imminent epidemic and the problems and costs associated with it. All stigma, misunderstanding and misinformation should be eradicated. We need to know, in the first place, that dementia is a disease of progressive irreversible degeneration of brain and neither a part of normal ageing nor insanity; that there are preventive measures which, if practised in our lifestyle, certainly increase the chance of not falling victim to the disease; that we need to be cautious about the early warning signs of dementia and get our brain health assessed to ensure early diagnosis if the disease sets in. There are further stages of awareness which are also important for further tackling dementia.
With the epidemic knocking at our doors, our aim should be that each and every citizen of our society becomes ‘dementia literate’ with at least the first level of knowledge. Towards this end, ARDSI Calcutta regularly holds awareness sessions/camps, arrange talks aided by computer presentations, video shows, etc., develop and distribute information materials like quarterly newsletter, brochures, etc.
Memory Screening: This is a facility which gives people the opportunity to get their memory health status assessed. This very preliminary assessment comes in very handy in proceeding to the next level of assessment, if required.
Memory Clinic: This is a structured service offered by ARDSI Calcutta which is jointly conducted by neurologists, neuropsychiatrists and care counselors. Here thorough assessment is undertaken, and, if found necessary, people are advised to undergo investigative tests for specific diagnosis. There is some kind of collaborative arrangement under which some subsidy is arranged for investigations. Follow-up consultations can also be done at these clinics. Any person having any sort of memory problem can come straight to the clinic.
Memory Screening and Memory Clinic together are expected to ensure early diagnosis of dementia, which is so crucial for tackling the disease.
Care Counseling: Right kind of care giving is central to dementia treatment. ARDSI Calcutta provides specialised counseling at its office and patients’ homes to help family care givers develop appropriate care plans.
Support for family care givers: Family care givers need emotional and technical support and regular respite from care giving to maintain quality care giving. Towards this end, ARDSI Calcutta imparts care counseling, training to improve care skill and hold carer support group sessions where the family care givers can have some free, light and enjoyable time sharing their experiences and also discussing practical care tips. Professional dementia care givers are also matched and joined with the families requiring their service.
Daycare service: This is the newest and the main facility launched by ARDSI Calcutta to provide double benefits of better and specialised care to the patients and respite for the family members. Centre-based community care is an indispensable part of dementia therapy which goes a long way to improve the quality of life of the patient, specially in the early and middle stages of the disease. The ARDSI Calcutta Dementia Daycare Centre at Ankur, P5 Regent Estate Kolkata 700 092, which was inaugurated in July, is the only specialised dementia daycare facility in the entire eastern and north-eastern region of India.
Carer Training: ARDSI Calcutta, in association with other organisations like Calcutta Metropolitan Institute of Gerontology, Saroj Nalini Memorial, etc., imparts training on customized course to develop specialised professional dementia carers. Recently, The Calcutta University has introduced a post-graduate diploma course on Geriatric care, which includes dementia care. ARDSI Calcutta has been entrusted with the honour of imparting lessons on dementia care in that course. Till now the organisation has generated a pool of 200+ professional carers.
Expansion Plan
Along with intensifying the existing activities, the ARDSI Calcutta envisages (i) setting up dementia daycare facilities in different localities, (ii) setting up at least one 24x7 dementia respite centre, (iii) setting up a single-window central service hub where all dementia services can be accessed and which will be the source of all dementia information and administration, (iv) Conducting research work and studies in dementia and dementia-related matters with particular emphasis on West Bengal and eastern India. ARDSI Calcutta has a big advantage of having a long-standing strategic knowhow collaboration with a leading dementia service provider of Australia, Southern Cross Care.
Dementia and social initiative
Given the nature of the overall dementia problem, where building awareness is the first and foremost challenge and where miles are to be covered from the very scratch, not an inch can be covered without meaningful and strong social initiative. This is particularly so in view of the facts that in India the level of awareness is at a pathetically low level; stigmas, misunderstandings and taboos are aplenty; there is hardly any government policy initiative and dementia-specific legislation; and no business rationale has yet been explored and developed for dementia tackling.
Till date ARDSI is the only dementia-specific specialised non-government and non-profit social organisation in India, which is affiliated to the London-based global umbrella Alzheimer’s Disease International (ADI). ARDSI has 15 chapters across the country. ARDSI Calcutta is the Kolkata chapter, a registered NGO and the only Dementia organisation in the whole of eastern and north-eastern region of the country.
Contribute and be counted
Join the Dementia Mission and make a positive difference to the social care and welfare, specially geriatric care and welfare structure and capacity of our region.
In the following pages you will find the budgets to achieve different layers of objectives, which may help you consider, think and plan your special way of getting involved in the Dementia mission. All the Layers of Objectives are as important and are as urgent, since, hiring the words of the World Health Organisation, “the Dementia Epidemic is Here” and “there is no time to lose”.
Your involvement will be explicitly, clearly and publicly announced with deepest gratitude in whatever ways possible on discussion with you.
Layer I Objective: Awareness, Prevention, Early Diagnosis, Assessment & Intervention
Activities: Awareness Camps, Memory Screening Camps, Memory Clinics
Budgets
Activity Monthly Quarterly Yearly Preferred Mode
Awareness Camps Rs 3000 Rs 9000 Rs 36000 Half-yearly
Memory Screening
Camps Rs 3000 Rs 9000 Rs 36000 Half-yearly
Memory Clinics Rs 3000 Rs 9000 Rs 36000 Half-yearly
Layer I Objective Rs 9000 Rs 27000 Rs 1,08,000 Half-yearly
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Layer II Objective: Care for person with Dementia and Support for family carers
Activities: Care Counseling, Home Visits, Carer Support Initiatives
Budgets
Activity Monthly Quarterly Yearly Preferred Mode
Care Counseling Rs 3000 Rs 9000 Rs 36000 Half-yaerly
Home Visit Rs 3000 Rs 9000 Rs 36000 Half-yaerly
Carer Support
Layer II Objective Rs 9000 Rs 27000 Rs 1,08,000 Half-yearly
Layer III Objective: Centre-based Community Care
Activity: ARDSI Calcutta Dementia Daycare Centre at Ankur, P-5 Regent Estate, Kolkata 700 092
[Assumed full capacity: 8 patients]
Budget
Activity Monthly Quarterly Yearly Preferred Mode
Running of
Ankur Dementia Rs 48000* 1,44,000 5,76,000 Half-yearly
* Per patient monthly cost Rs.6000.
Break-up of Monthly Budget:
House Rent (incl electricity and water) Rs 10000
Salary for 4 carers @ Rs 4000/month Rs 16000
Salary for 1 manager @ Rs 5000/month Rs 5000
Salary for 1 attendant-cum-cleaner @ Rs 2500/month Rs 2500
Doctor’s visit (Honorarium) Rs 1000
Care plan evaluation & assessment (Honorarium) Rs 1000
Lunch @ Rs 50 (Rs 50x8x20) Rs 8000
Fruit, Tea, Snacks @ Rs 10 (Rs 10x8x20) Rs 1600
Newspaper & other Activity items Rs 400
Medicine, cream, etc. Rs 500
Monthly Total Rs 48000
The Transport Cost has not been included in the above. A stable sponsorship for transport will be highly appreciated.
Layer IV Objective: Training of specialised professional Dementia care giver, Update & Refresher Course and Matching & Joining with families
Activities: Course ideation, development of course content and materials, impart fresh and refresher training, matching and joining professional care givers with the families requiring them
Activity Monthly Quarterly Yearly Preferred Mode
Dev & Printing
of Course Materials Rs 3000 Rs 9000 Rs 36000 Half-yaerly
Holding of
Training Sessions** Rs 6000 Rs 18000 Rs 72000 Half-yaerly
** Includes Honorarium for Trainer
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Layer V Objective: Publication and Publicity
Activities: Publication of books, brochures, newsletters, souvenirs, compendiums, documentary etc. AND Publicity through advertisements, Billboards, Video clips
Budget
Activity Monthly Quarterly Yearly Preferred Mode
Initial Corpus (one time) 2,00,000 One time
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Publication Rs 7000 Rs 21000 Rs 84000 Half-yaerly
Publicity Rs 5000 Rs 15000 Rs 60000 Half-yaerly
Layer VI Objective: ARDSI Calcutta Expansion Plan
Activities: An integrated Dementia Service hub where all services can be accessed and which will hold together training, research & study, and publication facilities, also the overall administration; setting up of specialized Dementia Daycare facilities in different localities; setting up of 24x7 care home.
An inititial dedicated corpus of Rs 50,00,000 and a piece of land measuring at least 12 kotthas are required
For any query, details, explanation and discussion, please contact:
Registered & Administrative Office:
15/3C, Naskarpara Lane, Kolkata 700031, West Bengal, India. Phone: (033)24054959
Dementia Daycare Centre:
Ankur, P-5 Regent Estate, Kolkata 700092, West Bengal, India. Phone: (033)32017044
Website: www.ardsikolkata.org
Email: ardsikolkata@yahoo.co.in
Jt. Secretary (ARDSI National) & Board Member (ARDSI Calcutta)
Mob: (+91) 93310 39839
E-mail: nilanjanamaulik@ardsikolkata.org
Secretary & Director (Policy & Programme), ARDSI Calcutta
Mobile: (+91) 98300 07576
E-mail: pgdattaray@ardsikolkata.org