Alzheimer's and Related Disorders Society of India - An Organisation to Improve the Quality of Life of the People with Dementia


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AN EPIDEMIOLOGICAL STUDY OF DEMENTIA IN AN URBAN COMMUNITY IN KERALA, INDIA

This community based study of dementia done in the leadership of Dr. S. Shaji, Mrs. Srija Bose and Dr. K Jacob Roy, in the city of Cochin, investigated the prevalence of various dementing disorders, psychosocial correlates of the morbidity and the risk factors. 30 out of 178 parts of Cochin City were randomly selected and a door-to-door survey was conducted in each of the selected clusters to identify the elderly people aged 65 years and above. A total of 1934 persons were screened with the vernacular adaptation of the MMSE. All those scored 23 and below had a detailed neuro- psychological evaluation by CAMDEX-B and caregivers of the patients with confirmed cognitive impairment were interviewed to confirm the history of deterioration in social or occupation function by CAMDEX- H. In the third phase, a psychiatrist evaluated the subjects with confirmed cognitive impairment and diagnoses were made as per DSM –IV criteria. Sub categorization of dementia was done by ICD-10 diagnostic criteria. 10% of the negatively screened population were randomly selected and evaluated at each stage. The prevalence rate of dementia was 34 per 1000. 53% of dementia cases were diagnosed as Alzheimer’s disease, 40% satisfied the criteria for vascular dementia. 7% was due to other causes like infection, tumor and trauma.

COMPREHENSIVE DEMENTIA CARE SURVEY
ARDSI imparted one week training under supervision of Dr. S. Shaji, at Consultant Psychiatrist, ARDSI to the newly appointed staff on Dementia care and implementation of the project.The present survey team is in the process of identifying people with dementia, their socio economic status and the needs of family.

AIM OF THE STUDY
To make Cochin the first “Dementia friendly city” in India. To achieve this aim the team is taking action to find out the prevalence of Dementia, existing care arrangements and also to provide various services like day care, home care, memory clinic, awareness program, counseling, help line services, support to care givers and so on

OBJECTIVES OF THE STUDY
»	To investigate the prevalence of dementia in an urban population i.e. at Cochin Corporation, Kerala state, India
»	To find out the number of dementia cases in the selected divisions.
»	To assess the needs of the elderly with dementia.
»	To provide better intervention programs according to the requisite needs
»	To conduct awareness programs in various places in Cochin Corporation.

REVIEW OF STATISTICS
Population of elderly persons is growing at a faster rate due to the demographic transition that is occurring in India, particularly in Kerala. The number of elderly was about 56 million in 1991. The projected figures for the years 2003 and 2025 are 70 million and 177 million respectively. Kerala is one of the states in which the demographic transition is most marked. The elderly population is growing at about two times faster than the total population. It has reached 3 million (9.5 %) by 2001.

The review of the literature of studies done in the field of dementia care services revealed a variety of factors on the prevalence of the Dementia and services availed by the population of Cochin Corporation.

PROFILE OF COCHIN CORPORATION
Cochin, The Queen of Arabian Sea, is the largest and most important city in Kerala. It is also the commercial capital of Kerala. The total geographical area of Cochin Corporation consists of 87,341 KM with an altitude equal to the sea level.The total population residing at Cochin Corporation is 15,39543 according to the 2001 census. It is one of the biggest Corporations, consisting of 66 divisions.

METHOD OF THE STUDY
Universe
The universe selected for the study is the population above the age of 65 years in the selected divisions of Cochin Corporation.

Sampling Technique
The area selected for the study in the first phase is ten divisions of Cochin Corporation, i.e. divisions 31, 36, 38, 39, 40, 42, 44, 45, 60, and 61, around our dementia care center which is located in Division 38. (Sketch of Cochin Corporation with divisions marked is enclosed). The total population in these 10 divisions is 90819according to the electoral list modified in 2001. The aged population is expected to be around 7718 according to the statistics, which showed that the elderly in Cochin Corporation constitutes 9.5%. The anticipated dementia cases are 3% of the total aged population, which comes to around 231 cases in these divisions
The sampling frame is the constituency wise list of voter’s and the map of Cochin Corporation. Out of the 66 divisions, 10 divisions were selected and a door-to-door survey is being conducted to identify residents of those aged 65 years and above. The survey is being conducted under the direct supervision of Care Manager with the services of the Community geriatric health workers, CGNs & students who were trained to conduct the survey.

Tools
»	Malayalam Version of “Community Screening Instrument for Dementia” (CSI-D)
»	Schedule to assess the family profile
»	“Mini Mental Status Examination” -Malayalam Adaptation (MMSE-Folstein et.al 1975)
»	CAMDEX Schedule -Malayalam Adaptation (Roth et.al 1986)

Community Screening Instrument for Dementia (CSI-D)
Community screening instrument for dementia is prepared by 10/66-dementia research group containing 25 items. The CSI-D original version was translated in to Malayalam. A pilot study was conducted on a sample of 30 to know the feasibility of the tool, and some minor changes had to be made as per the feed back from the community.

Schedule to assess the family profile
A schedule for assessing the family and its socio economic status was used to categorize the population.

Mini Mental Status Examination (MMSE) & CAMDEX Schedule
Mini Mental Status Examination is used to identify the cases of dementia. It assesses the mental functions like, orientation, registration, attention, calculation, recall, language and construction. The total score of the test is 30. Any score below 23 is considered as a Potential case of dementia.

SAMPLING TECHNIQUE
Random Sampling Technique is being used for the study. Out of 66 divisions 10 divisions were selected in about 10 Km radius around the Dementia care center, to ensure the availability of our service. A door-to-door survey is being conducted in each division to identify the elderly people with dementia and their socio economic status and also the family needs of those above the age of 65

PROCEDURE
The manpower for the survey is recruited with help of the projects like Urban Poverty Alleviation Department (UPAD), ICDS, Rotaract, National Service Scheme (NSS) and the local leaders (Councilors). The services of members of Kudumbashree and Anganwadi workers are used for the baseline survey.

After the baseline survey, the trained staffs of ARDSI assess the potential dementia cases by using MMSE and CAMDEX.

The first month after launching the project was utilized for the preliminaries such as preparation of the tools for the survey, selection of the divisions where the project to be implemented, Collection of voters’ list, Collection of secondary data regarding the features of the target population, place etc.

After a thorough investigation of the target population of 15 divisions near to the dementia care center 10 divisions were selected according to the accessibility and feasibility for the survey. The selected divisions are 10 KM around the dementia care center.

A pilot study was conducted in October 04 divisions: 38,39and 40 covering 89 houses by 12 surveyors to assess the feed back from the community and to test the feasibility and accessibility of the tools. The Community Nursing Students were trained and their services were utilized to conduct the pilot study. 100 samples from these divisions were selected for the study. From the study we could identify 3 potential cases.

After analyzing the results of the pilot study we could find that the people perceive the questions and the responses were matching to our requirement. After the pilot study slight modifications were made in the tools.A baseline survey commenced in October and is an ongoing process. All other programme is going on concurrently such as confirmation of the potential cases; need assessment and provision of services. Concerted efforts are being made to achieve the objectives of the project as early as possible.

Divisions Selected for the survey
No	Division Number	Name of the Division	Total Population	No. Of Elderly (8.5% of TP)	AnticipatedDementia cases (3%)
	31	Ponekkara	7412	630	19
	36	Karukappilly	11301	960	28
	38	Vennala	6651	565	17
	39	Chakkarapparambu	9724	826	25
	40	Palarivattom	9922	843	25
	42	Thammanam	10429	886	27
	44	Ponnurunni	8560	728	22
	45	Chalikkavattom	8856	753	23
	60	Kathrikkadavu	9536	811	24
	61	Kaloor North	8428	716	21
		TOTAL	90819	7718	231

SUMMARY OF RESEARCH SURVEY (10 Divisions)

Population Screened - 4899
Potential Cases of Dementia identified - 125
Clients availing day care service -13
Clients receiving Home Care Service -81
Total Clients availing our service -94

10/66 Dementia Research

10/66 is a group of researchers who have come together to try to encouraging active collaboration between research groups in different developing countries and between developed and developing countries in the field of Dementia.

The group is affiliated to Alzheimer's Disease International and is coordinated by Dr. Martin Prince from the London school of Hygiene and Tropical medicine. The first meeting of the group was held at the Annual Conference of Alzheimer's Disease International held at Cochin in 1998, Kerala, India.One of the aims of the group is to work out the number of people with dementia in developing countries. However, difficulties arise as the standard two – stage method used for dementia diagnosis in developed countries identifies cognitively unimpaired people with low levels of education, literacy and numeracy as positive for dementia.

The group has developed screening instruments, which exclude items testing numeracy, writing or reading skills. These screening instruments have now been translated into most languages of the developing world.

Lacks of awareness of dementia as a health condition, coupled with unresponsive local health services are two of the biggest problems facing those with dementia in the developing world. Dr KS Shaji's case finder study showed that with minimal training, local community health workers could identify people at need in the community. Dr. Shaji from Thrissur, Kerala, has demonstrated that the local Angawadi MPHWs working on the Indian Integrated Child Development Service (ICDS) can be trained in a one-day program to identify cases of the dementia in the community. In a validation study two-thirds of possible cases identified by the Angawadi workers met DSM criteria for dementia.

For more information about the 10/66 Dementia Research Group Visit www.alz.co.uk/1066