.
MUMBAI, Maharashtra / ARDSI Press Note / April 27, 2009
A two-day consultative meeting of experts from western India to evolve a national dementia strategy concluded here yesterday. It was organised by the Alzheimer’s and Related Disorders Society of India (ARDSI), in association with the Department of Psychiatry, Nair Hospital, Mumbai and Silver Inning Foundation.
Dr. Jairaj Thanekar, Executive Health Officer, Municipal Corporation of Greater Mumbai inaugurated the meeting by lighting a symbolic lamp.
Dr. R.V. Rananavare, Acting Dean, Nair Hospital, was the chief guest.
The Mumbai meeting was part of an ongoing series of sessions in four cities across India. The first meeting was held in January in Delhi. Kolkata will host the concluding meeting in December.
Major points of discussions at the Mumbai meeting:
Improve awareness/ Advocacy
- Improve public and professional awareness of dementia among GPs, healthcare professionals (nursing, physiotherapists, SLPs), healthcare policy makers and media.
- 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. A society that does not provide necessary social services to its members is doomed to fail.
Type of messages
o Simple messages on Alzheimer's Disease
o The awareness should focus on different components such as diagnosis, treatment etc
Where messages should be given
o Media - documentary films, street theatre, television, newspapers, radio, outdoor display hoardings in public health centres and hospitals
o Public - National Social Service (NSS) of universities, service organizations, senior citizen forums, police, bar associations, schools and colleges, local self governments, NRHM, social work colleges, management institutes
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 and supportive health care personnel
o Target conferences of medical professionals, nursing bureaus and home care services, RMPs,
o A comprehensive website
Content of messages
o Awareness with a distinction between public health approach and individual strategy.
o Aging and age associated memory impairment (AAMI) and benign senescent forgetfulness (BSF) of normal aging process.
o Aging, dementia and Alzheimer's Disease
o Alert public against high expectations from drugs and substances such as ginkgo biloba). 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 Information about experiments conducted on curcumin
o 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
Encourage family members to take elderly to a doctor in time without waiting for the Disease to progress and to obtain necessary medical care.
How to promote early diagnosis
o Workshops for training professionals for diagnosis in urban and rural areas.
o Organize memory clinics and camps
3. Improved quality of care / Rehabilitation
- Improve health care through Informed Family Carers
- Relief from carer stress and burnout
- Improve quality of care through the public health system
Informed and Effective Workforce
What to watch out for
o The urban rural divide should also be accounted for in the strategy. Realistic targets for overburdened rural health workers.
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 attend to basic needs of the patient
Training of personnel in dementia care.
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
Spotting AD cases
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
The role of ARDSI
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.
o Legal issues - Alzheimer's affected persons' decision making ability is impaired. Doctors look after AD patients, support groups focus on the care aspect. No one focusses on legal issues relating to property. ARDSI should liaise with legal experts and promote information on these aspects.
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 A Dementia Strategy Paper should be distributed to all stakeholders and their comments invited.
o A National Dementia Registry should be created.
o To advocate with corporate to include Elderly/Dementia in CSR
o Dementia to be included in National Mental Health Prorammes
o Campaign for inclusion of Dementia as Disability
Report prepared by Seniors World Chronicle based on material received from ARDSI
A two-day consultative meeting of experts from western India to evolve a national dementia strategy concluded here yesterday. It was organised by the Alzheimer’s and Related Disorders Society of India (ARDSI), in association with the Department of Psychiatry, Nair Hospital, Mumbai and Silver Inning Foundation.
Dr. Jairaj Thanekar, Executive Health Officer, Municipal Corporation of Greater Mumbai inaugurated the meeting by lighting a symbolic lamp.
Dr. R.V. Rananavare, Acting Dean, Nair Hospital, was the chief guest.
The Mumbai meeting was part of an ongoing series of sessions in four cities across India. The first meeting was held in January in Delhi. Kolkata will host the concluding meeting in December.
Major points of discussions at the Mumbai meeting:
Improve awareness/ Advocacy
- Improve public and professional awareness of dementia among GPs, healthcare professionals (nursing, physiotherapists, SLPs), healthcare policy makers and media.
- 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. A society that does not provide necessary social services to its members is doomed to fail.
Type of messages
o Simple messages on Alzheimer's Disease
o The awareness should focus on different components such as diagnosis, treatment etc
Where messages should be given
o Media - documentary films, street theatre, television, newspapers, radio, outdoor display hoardings in public health centres and hospitals
o Public - National Social Service (NSS) of universities, service organizations, senior citizen forums, police, bar associations, schools and colleges, local self governments, NRHM, social work colleges, management institutes
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 and supportive health care personnel
o Target conferences of medical professionals, nursing bureaus and home care services, RMPs,
o A comprehensive website
Content of messages
o Awareness with a distinction between public health approach and individual strategy.
o Aging and age associated memory impairment (AAMI) and benign senescent forgetfulness (BSF) of normal aging process.
o Aging, dementia and Alzheimer's Disease
o Alert public against high expectations from drugs and substances such as ginkgo biloba). 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 Information about experiments conducted on curcumin
o 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
Encourage family members to take elderly to a doctor in time without waiting for the Disease to progress and to obtain necessary medical care.
How to promote early diagnosis
o Workshops for training professionals for diagnosis in urban and rural areas.
o Organize memory clinics and camps
3. Improved quality of care / Rehabilitation
- Improve health care through Informed Family Carers
- Relief from carer stress and burnout
- Improve quality of care through the public health system
Informed and Effective Workforce
What to watch out for
o The urban rural divide should also be accounted for in the strategy. Realistic targets for overburdened rural health workers.
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 attend to basic needs of the patient
Training of personnel in dementia care.
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
Spotting AD cases
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
The role of ARDSI
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.
o Legal issues - Alzheimer's affected persons' decision making ability is impaired. Doctors look after AD patients, support groups focus on the care aspect. No one focusses on legal issues relating to property. ARDSI should liaise with legal experts and promote information on these aspects.
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 A Dementia Strategy Paper should be distributed to all stakeholders and their comments invited.
o A National Dementia Registry should be created.
o To advocate with corporate to include Elderly/Dementia in CSR
o Dementia to be included in National Mental Health Prorammes
o Campaign for inclusion of Dementia as Disability
Report prepared by Seniors World Chronicle based on material received from ARDSI
