Older Women in the Slums of Mumbai

Aged & Dementia in the Slums of Mumbai

Rohini Kashikar SudhakarAssistant ProfessorContinuing and Adult Education and Extn. WorkSNDT Womens University

A study to know profile of elderly in slum areas of MumbaiVery few studies on aged residing in the slum areasLess studies related to Alzheimer's disease.There is a need to study burden of caregivers in taking care of person with Alzheimers need to be studies.

ObjectivesTo study in brief the profile of the agedTo study the support system available to the aged To review various state government schemes available for the aged To understand problems faced by Caregivers of patients of from Alzhemiers To understand coping strategies adopted by caregivers of persons suffering from Alzhemiers diseaseTo suggest intervention programs that can be incorporated in existing social support systems, Govt. schemes / or new initiatives which can be started to enhance the wellbeing of the aged.

PROFILE: Major FindingsThe sample for the present research was drawn from the Mumbai city which is divided in to 24 wards. A sample of 1,262 senior citizens was selected from 24 wards of Mumbai city. Out of this, those suffering from dementia were very less ( 2%)

Our children say, You are a burden.

Most of the elderly women said, Our daughter in law never bothers to ask if we need something to eat as per our choice.

Mehnat nahi karenge to kya khayenge.

Help in paying health visits 33% aged are not accompanied by anyone to their health visits, the ratio is almost similar for both men and women. 33% are accompanied by their sons, after which comes their spouse.

Ownership of Houses

Addictions

Toilet usageAll residents of the slum have shared toilet facility. 1 toilet : 60 persons

68% of the aged people residing in the slums do not have toilet facilities in their own homes.

Lifestyle 4.44% could speak English as other language

62.84% were working

20.60% go for outing

11.25% of the aged were members of Jestha Nagrik Sangh. The aged having membership of Mahila Mandal, Bhajani Mandal, SHGs were negligible.

Technical exposureElderly people digitally illiterate 1.3% of them said that they are computer literate. Little less than one forth of the aged (22.7%) had mobile phone. More than half (57.8%) of the aged had access to television and out of this males having access to TV were more (65.8%) than the females ( 53.1%).Less number of aged 1.5% had access to computer

Health ConditionsOnly 9% knew their blood group

68.9% reported that their health was good / average/ fine / OK. Those reporting that they are always sick were few (14.1%). The aged who said that their health was bad were less (11.6%)

The aged who have insured their life (2.9%).

Employment79.6% were unemployed aged, in the case of both men and women.

50% of the aged informed that they contributed to the daily chores of the family.

Aged with outstanding debts 5.7%

2. SUPPORT SYSTEMFamily is behind the aged to support themMost of them stayed in joint familyMost of the elderly people are looked after by their sons.4.24%). Lived alone 19.72% of the aged reported that they had to keep changing their place of residence.

Income30.3% of the elderly people said they had their own source of income. Males: 38.7%. Female: 25.3%.

Those who had their income up to Rs. 500/- per month were almost 50%. The aged having income more than Rs. 5000 were very less.

Pension30.2% and 6.1% men and women respectively lived on pension.

2.6% and 8.6% men and women respectively lived on the pension of their spouse.

Savings34.4% of the aged saved their money in the bank. Out of this the number of male members was higher than women i. e. 32.7% and 19.3% respectively.

The aged keeping their savings in the post office were insignificant i.e. 0.9%. The banking system is not very aged-oriented and this should be improved.

3. GOVERNMENT SCHEMESRailway concession, ST concession, Widows pension, Sanjay Gandhi Niradhar Yojna, Rajiv Gandhi Arogya Bima Yojna were best known to all the functionaries of organizations of the aged.Most known scheme- travel concession in the train.According to the functionaries of the aged agencies, in spite of the schemes, there are a lot of formalities to avail them.All of them were of the view that such schemes benefit those who need it.

Govt. Schemes But they felt that the amount under Sanjay Gandhi Niradhar yojna and Widow pension scheme needs to be improved.30.2% and 6.1% men and women respectively lived on the pension. Recipients of Shravan Bal and Sanjay Gandhi Niradhar Yojna were very insignificant i.e. 2.3% and 4% respectively.The aged who had registered under RSBY were very negligible 0.89%. May be the aged are not aware of Rashtrya Swasthya Bima Yojna ( RSBY).

Reverse Mortgage SchemeElderly people were not aware about reverse mortgage scheme i.e. the scheme of loan against property. On the explanation of the same, they said such scheme is of no use to us as we do not have property on our name.

4. EXPECTATIONS Senior citizens feel that the new generation doesnt respect them and considers them to be a burden, therefore the Government should take some action to safeguard their right to live a respectable life.

There should be strict laws to curb substance abuse and the issue of youth employment should be considered a priority.

Major Problems of the Aged in SlumsPoor maintenance of latrine (57.20%)Water shortage (51.97%)Open defecation causes problem (44.38%)No water in the toilets so water needs to be while going to toilet (44.38%)Pollution (noise, dust, fumes, etc.) (19.72%)

AbuseVerbal Abuse (9.86%)Showing disrespect (8.48%)Economic Abuse (7.5%)Neglect (6.71%)Physical Abuse (5.23%)

Helpline for Senior Citizens is known to very few educated aged persons.

Problems not catered by State or CentreLack of Social SecurityNo livelihood option due to which they cannot afford basic needsHigh addiction in their childrenIll treatment and violence from familiesUnemployment in childrenLack of medical facilities and sanitationShelter Government Schemes havent reached them due to lack of information or inaccessibilityAge related health issuesNo legal support available from government to the aged

5. SUGGESTED INTERVENTIONSPractice-based operational recommendationsImplement the policy for senior citizens at the state levelKeep the age 60 years for all. As those who work in un-organized sector get old very fast.Special cell or a service center for the aged Government should have a special service center for the aged. There should be team of social workers working for the aged. Each Social Worker should be assigned different duties to look after the needs of the elderly residing in 24 words of Mumbai, especially aged abuse.

Pension RequirementsThe aged who have no source of income and staying alone.The commercial sex worker who has crossed 60 years of her lifeThe HIV/AIDS person who has crossed 60 years of her lifeThe aged who has daughters or a single daughter staying with him/her

Basic AmenitiesDrinking water timing need to be between 0600 hrs to 1100hrs:On an average the proportion of toilets is 1:60 persons in the slums. The Sulabh Souchalaya/ pay and use toilets cost Rs. 2 to Rs. 3/- per usage.

In many slums gents have to climb up to second floor for going to toilet.

Day Care CentresThese Day Care Centres can house the aged where they can sit and rest, read newspapers, magazines, listen to music using earphones, have discussions with the people of their age group and engage in activities of their interest like learning computer literacy, art and craft, new skills, etc. DCC can be housed in hospitals/ BMC schools.

Health Care for the Aged CoursesNeed for the Training programmes/ Courses in Home care for the elderly people

Supporting Families with EldersThey should be given preference and easy formalities from the local municipal ward office to install western commodes in their residences. Families live with and support their elders should be given some income tax rebate.Work with local slum communities, aged organizations, agencies like Jestha Nagrik Sanghs to improve the status of the aged

Involving students for serving the aged

Those students who would help aged in any of the following forms or otherwise can be allotted marks through a proper credit system developed by education system.Assisting aged in helping crossing the road during peak hours.Taking the aged patients outside their room of the homes or hospitals for a walks on daily basis.Associating to help at NGOs working for the aged.

Add Geriatrics to School CurriculumThe school and college curriculum need to introduce topics related to gender discrimination and stopping elder abuse.Create awareness about the government schemesStrengthen the institution of the family Counselling services both to the elderly and to family members.

Improve Governance & Friendly InfrastructureGovernments need to review the implementation process of the aged schemes the procedures are cumbersome for the needy to take advantage of government schemes. Confiscate the license of auto/taxi drivers on denial of service To climb staircase leading towards local trains, railway.Make the footpaths free of obstaclesEnact building codes and regulations. Ramps are needed for every staircase.

Organize seminars and workshops

Organize state level workshop to interact with the aged, and for those who work for their welfare to know their issues so that stakeholders can come together to discuss perceived macroeconomic impediments that directly affect urban aged. Educate people on gender issues and against elder abuse.

Solving the problems of the aged by organizing their camps in slums Packed Meal / Mid-Day meal for the agedBus for serving the agedDignity Foundation has a bus specially for serving the aged. Forum to discuss the issues of the AgedAwareness about awards institutionalized by the Ministry of Family Welfare.

Profile of the caregivers of patients of Alzheimers :

Majority of the care givers were women who were un-employed Majority of the care givers were spouse of the patient or children of the patient, usually daughter or daughter in-law cared for the patientThey were from the middle age groupNone had received formal training in handling the patient of Alzheimers diseaseDifficult to get access for the treatment for the Alzheimer diseaseLack time for themselves, no time to relax as taking care of the patient means it is a full time job.All said caring a patient with Alzheimer is a stressful jobCaregivers experienced illness while taking care of the patient

How patient with Alzheimer affects his/her family especially care givers:

Relationship changes

Family often has to go through social isolation wherein relatives and friends may withdraw from the caregiver as caregiver has to give more time and attention to the patient.Care givers often experience feelings of depression, anxiety, stress and helplessness that need to be addressed by counsellors and clinicians.

Dementia and reaction of slum dwellers to the same

Sometimes care givers do not understand why the behavior of patient changes. They do not understand what has caused the illness and are not able to accept that the person has disease.

What care givers face:

Face emotional challengesFeel pity about the status of the patient they relate to Get physically hurt when patient becomes violentSometimes they distance from the patient Care takers take out their anger on their other family members 53% suffered physical illnessNo time to care takers for any entertainmentAs the patients diseases progresses patients are likely to run away as the patient gets suspicious of those around themRelatives care for the patient but not the care giver of the patient. No one likes to know worries of the care givers.

What care givers face:

Family often has to go through social isolation wherein relatives and friends may withdraw from the caregiver as caregiver has to give more time and attention to the patient.Sometimes they do not understand the behavior changes caused by the illness and are not able to accept that the person has disease.Care givers often experience feelings of depression, anxiety, stress and helplessness that need to be addressed by counsellors and clinicians.

Findings of the study

In India there is almost no awareness of Alzheimers especially among those residing in the slum areas of Mumbai. People do not understand that the aged is suffering from Alzheimers as this disease is poorly understood, leading to the blame and distress of caregivers. There is no structured training on the recognition and management of dementia on any health services and the behavior of people with Alzheimers.

Findings of the studyFamily relatives start providing care giving services to the patient of Alzheimers just because they happen to be the close relative of the patient. As there is no one to take care of the patient.Caregivers find it difficult to plan anything for the patient as the patient would be un predictable. It is sometimes hard to invite guest at home because of the presence of the patient.

Coping Strategies:

They do nothing, accept realityMeditation to release stress & anxietySpeak lovingly to the patient ( 50% did that)Pray to God to give them strength to take care of the patientCaregivers treated patient like a childHave faith in God and leave everything to God

What needs to be done for care givers

Organize training on how to deal with emotions while giving care to the patient (especially when the patient becomes violent).Need of forming support group or association of care givers of Alzheimers diseaseCare givers need to be encouraged to take out time for their own entertainmentWhen patient runs away family faces embarrassing situation such as complaints from neighbors and society.Men should be encouraged to take care of the sick persons especially patient with Alzheimer's disease

What needs to be done for Society

Due to lack of awareness people equate patient of Alzheimer's to mad person. Hence, there is an urgent need to that awareness of Alzheimer's disease is made through all types of media. Modern mediums like TV, Internet need to be used widely, posters , street play need to used to make people living in the slum areas aware about the Alzheimer's diseaseLocal voluntary agencies can play major role in offering help to the family members of the patient by giving financial help if needed or making the caregivers come together and share their experiencesBMC health Posts, hospital need to organize seminars, workshops to make general people aware about the Alzhimers diseaseAayabai/ Nurses bureaus need to made aware about how to take care of Alzhimersdisease

Institutions of higher education need to hold sessions for care givers on how to cope up with the patients of Alzheimer disease especially emotional challengesPeople should respect elders Need to create more awareness of the disease in the societyUnderstand the stress of the care giversThere is a need to inform society about various stages of Alzheimers diseaseSupport groups need to be formed in the local area to encourage care givers to perform their job in a better way. This will help caregivers share their experiences and find out solutions to their worries and get out let to their emotions.Caregivers of patient of Alzheimers can feel free to visit the Counsellor if help neededGovernmentAddress tags (with the innovative instrument which looks like a watch) need to be provided at low costThere is a need of strutted teaching and counselling the caregivers in reducing their burden and improving their healthIntervention visit need be paid by the counsellors to reduce the burden of caregivers