A National Dementia Strategy Consultative Meeting of Experts ‘Western India’ was held at the YMCA International, Mumbai Central on 25th & 26th April 2009. The Theme of this meeting was : “INTEGRATED DEMENTIA CARE “ .This meeting of experts was Organized by Alzheimer’s and Related Disorders Society of India (ARDSI) National Office and Mumbai Chapter in association with Department of Psychiatry, Nair Hospital, Mumbai And Silver Inning Foundation.
This important meet was inaugurated by Chief Guest: Dr. Jairaj Thanekar -Executive Health Officer, Mumbai Municipal Corporation (BMC) and Guest of Honour: Dr.R.V.Rananavare - Ag.Dean,Nair Hospital.
Dr.Jairaj Thanekar assured to help the cause of Dementia in creating awareness and providing services.
Around 29 multidisciplinary organization and family members participated in this important meet, the list of organization is given below:
All India ARDSI Chapters
Dept of Psychiatry, Nair Hospital
Silver Inning Foundation
Dept of Health , Mumbai Municipal Corporation( BMC)
Geriatric Society of India
TISS
Majlis
Dept of Psychiatry, KEM Hospital
The Family Welfare Agency
Forum for Improving Quality of Life
Jhunjhunwala Foundation
Harmony
Dept of Nursing, Wockhard Hospital
Tata Trust
Anand Rehabilitation center
Dept of Nursing, Nanavati Hospital
Akashwani
Memory Clinic, Sion Hospital
Memory Clinic, Nair Hospital
S.V.T.College (SNDT Juhu)
Bombay Psychiatrist Society
Elder Helpline, Mumbai Police
Helpage India
Sir Tata Dorabji Trust
Department of Neurology, K.E.M. Hospital
Department of Neurology, Grant medical college
Sir J.J.Group of Hospitals, Mumbai
Dept of Nursing , Holy Family Hospital ,Niagaon
Dept of Nursing , Minatai Nursing College
Dementia is a general term to denote a progressive degenerative disease of the brain resulting in loss of Memory, intellectual decline, behavioural and personality changes. Alzheimer’s disease is the most common type of Dementia. Mostly older people are affected by this condition.
It is estimated that there are more than 28 million people affected by this mind crippling tragedy globally. This number is expected to double by 2025. More than 70% of people with dementia live in developing counties like China and India. Although we don’t have the actual members, it is estimated that there are over 3 million people in India who are victims of dementia. Compared to any other chronic illness, more than the patients, often, it is the family members who bear the brunt of this devastating illness. It is often termed as a cruel disease, because it strips the person of all the skills and intellectual achievement the person has acquired during his life time and leaves the shadow of the person he used to be. The family members often have to watch the deterioration of their loved ones helplessly. Despite the magnitude, there is gross ignorance, and is often neglected in our country.
Many countries in the world have recognized Dementia as a health priority eg. Australia, South Korea. Similarly countries like UK, France have developed National Dementia Strategies. This has resulted in greater recognition, improved awareness and more fund allocation by their governments.
Alzheimer’s and Related Disorders Society of India (ARDSI) is the first Afro Asian National Alzheimer’s Association to get full membership in Alzheimer’s Disease International the world federation of 74 national Alzheimer’s Associations way back in 1993. ARDSI continues to be in the forefront in raising awareness and providing much needed services to those affected. Taking cues from the countries with better dementia awareness and care, ARDSI has taken the bold initiative to develop a National Dementia Strategy for India. The number of people with dementia in India is expected to double by 2025. There is gross ignorance. Most people with dementia go undetected. There are hardly any service available. Research in this area is scanty.
The aim of the National consultative meetings are to explore, discuss and share views on how to develop a National Dementia Strategy for India. This will be a road map for the country for the next five years in Dementia care. The first meeting was held in Jamia Millia, New Delhi on 30th-31st Jan 2009. The meeting in Mumbai is to get the views of the experts from the Western region. Similar meetings shall be held in other parts of the country, drawing experts from medical, nursing, social work, legal, media and governmental agencies. A final meeting shall be held in New Delhi by the end of 2009 to draw a national plan. Raising awareness, promote early diagnosis and provide effective management shall be the key areas, the Strategy shall be based up on. Final document shall be used to influence the government of India and state governments to include dementia in all the key Ministries of health, social welfare, science and technology’s, programmes. We hope to work towards making dementia a health priority in the country in the coming years.
The below are some of the points discussed in the meeting that needs to be a part of the National Dementia Strategy. The points have been categorized under various headings, with each topic in a different page.
1. Improve awareness/ Advocacy
Objectives:
Improved public and professional Awareness of dementia among GPs, healthcare skilled/semi-skilled professionals (nursing, physiotherapists, SLPs), healthcare policy makers and media resulting in better understanding of the disease and its care.
Mobilize support from government, foundations, public and private sector organizations, and philanthropists
Generate interest in students and younger faculty members to contribute time and services, as a society that does not provide necessary social services to its members is doomed to fail.
Comments/suggestions
§ Type of messages
o Simple messages on Alzheimer's Disease
o The awareness should focus on different components such as diagnosis, treatment etc
§ Where the messages should be given
o Make use of as many media as possible
o Public - National Social Service (NSS) of Universities, all service organizations, senior citizen forums, police, bar associations, schools and colleges, local self governments, NRHM, social work colleges, management institutes
o Media – documentaries in theatres, street theatre, TV, newspaper, FM radio. Use print and electronic media, public hoardings in PHCs and hospitals,
o Include dementia in as many public awareness programs as possible
o Include information about Alzheimer's Disease in the curriculum of medical colleges for doctors, nurses, Social Science and supportive health care personnel
o Target conferences of medical professionals, nursing bureaus and home care services, RMPs,
o There should be a comprehensive website
§ Content of the messages
o The goal of awareness should be very clear from the outset and there should be a distinction between what is a public health approach and what accounts for individual strategy (care giving is a individual strategy while generic awareness of the disease is a public health strategy).
o Differentiation between normal aging and age associated memory impairment (AAMI) and benign senescent forgetfulness (BSF) of normal aging process.
o Clarification of the 3 words that are used inter-changeably - aging, dementia and Alzheimer's Disease
o Lack of permanent cure (warn people against high expectations from various drugs and others substances such as ginkgo biloba) and importance of care for the patient and support for the caregiver
o Right information on ethical dilemmas such as tube feeding and palliative care in the terminal stage
o Right information on the experiments conducted on curcumin
o The demographic impact of Alzheimer's Disease and other dementias in developing countries such as India
o Clear signs of Alzheimer's Disease such as forgetting names, loss of interest in hobbies, unable to manage money, unable to do simple housekeeping tasks or cooking should be highlighted in the awareness campaigns so that people can identify Alzheimer's Disease in the elderly
2. Early diagnosis and intervention
Objectives:
Encourage family members to take the elderly to a doctor in time without waiting for the Disease to progress and obtain necessary medical care.
Comments/suggestions
§ How to promote early diagnosis
o Through workshops for training professionals for diagnosis in urban and rural areas.
o Organize memory clinics and camps
3. Improved quality of care / Rehabilitation
Objectives:
Improved health care through Informed family carers
Relieving of carer stress and burnout
Improved quality of care through the public health system
Informed and Effective Workforce
Comments/suggestions
§ What to watch out for
o The urban rural divide should also be accounted for in the strategy and one should be realistic about what rural health workers can do in 6 hrs of full-time work as they are already overburdened.
§ Diagnosis and care services
o Offer high quality care and support through memory clinics, day-care centers, and respite care centers.
o Set quality standards for care. Simple guidelines to be used for ensuring minimum quality standards in these clinics and in public health systems
o Focus on priorities for care-givers - access to continuity of support, access to good-quality information about dementia and local help available, access to good-quality care at home, in hospital or in a care home – provided by people with an understanding of dementia, access to peer support.
o Through support groups empower carers to make choices in caring for their family member suffering from Alzheimer's Disease
o Support and inspire carers to improve the quality of care rather than just have the basic needs of the patient, attended to
§ Training of personnel in dementia”.
o Stress on the benefits of training – the task of caring for a dementia patient is extremely difficult as it involves handling of wandering patients, aggression, incontinence and eventually round-the-clock care. Training is needed to enable caregivers to provide appropriate, competent and sensitive care and support and at the same time, prevent burnout.
o Who should be trained?
o Persons with dementia, immediate family, care staff, general health care professionals, and volunteers from community.
o Other aspects of training - levels of training need to be appropriate for the corresponding group of people. Critical focus areas in training include understanding the disease, skills to manage challenging behaviour and strategies for helping families and caregivers cope with the emotional challenges of caring for a resident with Alzheimer's disease.
o Standardise content of geriatric/dementia care training
o Have at least one trained care giver in care homes- incentive and/or legislation
o Make funds available for training programs, workshops
Others
Comments/suggestions
§ How can we identify Alzheimer's disease in people living alone?
o Through telephone, friends and relatives should be encouraged to be in touch; reverse help line approach where the NGOs can contact them periodically should be promoted
§ What ARDSI should do
o Each local chapter should engage with the local govt for advocacy and fundraising.
o The Delhi chapter should do advocacy with govt on policy planning through the planning commission, other departments etc. There has to be a dynamic national presence in the national capital to help ARDSI get access to both governmental and private support.
§ A few other issues for focus
o Legal issues - Doctors look after the patient and support groups focus on the care aspect. No one focus on other legal issues relating to property. ARDSI should liase with advocate and promote information on these aspects as in Alzheimer's Disease the patient’s decision making ability is impaired
o Advocacy with NSSO (Delhi) TISS and IIPS for including Alzheimer's Disease in their research to estimate incidence of Alzheimer's Disease
o Study of WHO report of 2001 to outline minimum action required for dementia care given the uniqueness of Indian context compared to the west.
o Dementia strategy paper should be distributed to all stakeholders and their comments invited
o To have National Dementia Registry
o To advocate with corporate to include Elderly/Dementia in CSR
o Dementia to be included in National Mental Health Prorammes
o To advocate to include Dementia in Disability ACT
o Have Multidisciplinary Dementia Day care Center
o Have Respite Care facility
o Have 24 x 7 Long Term care facility for the needy
o To include Dementia in Senior Citizens Maintenance ACT 2007
o To have more support groups for care givers
About Department of Psychiatry, Nair Hospital, Mumbai:
Department of Psychiatry at Nair Hospital offers services to Elderly as part of OPD and Inpatient Facility. Special Emphasis is on detection & treatment of Psychology disorder in Elderly including Dementia, which forms part of its therapeutic outreach programme. In recent years importance is being given to research on MCI –Mild Cognitive Impairment – patients have a high risk of converting to Alzheimer's disease.
About Silver Inning Foundation:
Silver Inning Foundation is registered NGO dedicated for Senior Citizens and Its family. It is part of Silver Innings.Com www.silverinnings.com a comprehensive and dedicated Website for Elderly. Dementia is one of the focus areas for Silver Innings. Providing need base service, networking and advocacy for Senior Citizens forms important aspect of Silver Innings. It promotes the concept of Successful Ageing among various forums.
Dr.Jacob Roy
National Chairman, ARDSI
Cell: 09847034161
Dr.Charles Pinto
Project Head – NDS –I, Mumbai
Prof Emeritus, Dept of Psychiatry, Nair Hospital ,Mumbai
Cell:09820113957
Sailesh Mishra
Chief Coordinator, NDS –I, Mumbai
Founder President, Silver Inning Foundation
Email: ardsimumbai@gmail.com ; sailesh2000@gmail.com
Cell: 09819819145
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