Hi Jospeh, hello- I am new to your project and I have some questions.
Can you please calrify who your target group is: is it poor elderly who have Alzheimers or is it generally poor eldery people?
At the moment - what happens to an elderly poor person who has Alzheimers? Is he/she totally reliant on his/her family to look after them?
How much information is there amongst the poor people in your community about the disease Alzheimers? Is it a good understanding, or is it below basic? Is there a need for education- especially for the carers?
What is your ultimate goal with your project? Can you please give us a bigger picture of what you'd like to achieve?
It's early days yet but the more info you give us the better opportunities we will have to assist you.
Thanks Jospeh!
Carolyn

hi Joseph

You really have a big heart,i would love to be part of your project coz ma pray is to see u succending

--
hellen

Madam Carolyn,
I got your reply while I was very much disappointed about the fact that I am unable to start the project of Medical Home Care Service as I wished. Thank you for your willingness to help my project. I was inspired to do this project by seeing the sufferings of the poor as well as by my personal experience in this field. I wish to achieve my goal as a humanitarian one. I wish to do my part of duty in this world of humanity without any barriers, and with the co-operation of others, as the human race cannot exist without co-operation and mutual help.

According to your reply now I may give a brief description about my project, 'Medical Home Care Service' for the poor and the needy old patients especially the Alzhimers patients in my locality. Through this service I wish to help the poor sick and elderly people including Alzhimers patients who suffer most. I also wish to help other needy patients on a humanitarian consideration. I may also invite your attention to the fact that in our country there is no practice of Medical Home Care Service for the old and bed ridden patients by Doctors and nurses. So the poor and old including the Alzhimers patients do not get proper attention and nursing care in their homes. The poor families are unable to provide them with nutritious food sufficient medicines and medical care, medical materials like water bed, tena bed, urine bag, necel tube, gloves etc. Even though there are Multi Speciality Hospitals, they are out of reach for the poor as they are expensive and profit motivated. In Government Hospital also there are no facilities for better treatment to the poor due to the corruption among the Doctors and other staff. Considering these financial problems the poor families do not care to take sick old patients to hospital. This is very miserable and sympathetic. The poor people are unable to provide their dear ones with the expensive treatment and conveyance. So I wish to provide them with a free Ambulance service to the disabled and bed ridden the poor patients especially the Alzhimers patients. There are about 12 persons among 100, above the age of sixty five are Alzhimers patients in our country.

The Alzhimers patients usually do not get full attention of the poor families because the family members are unaware of this disease. They think that it is a mental disease or otherwise caused by evil spirits. So they neglect the treatment of The Alzhimers patients and do not care to take them to the hospital. They are left to lead a very miserable life till the end of their life. So the family members of the Alzhimers patients should be given awareness or education about this serious disease. In our country the family members are looking after the old and sick patients as it is very expensive to hire a Home nurse at home. Due to the long term treatment of the patients will lead the family to debt and disappointment. This will impoverish the poor families.

The home care service, according to me, requires a full time doctors, nurses and Attenders in the office to attend the sick old people as an when necessary. The service should be for 24 hours. The people are given awareness about this project of Medical Home Care Service. Those who want the service of the doctors and nurses will contact us through phone call and they will visit the patients and will do the necessary help. For the purpose a mobile medical care service in an ambulance is necessary. In the case of very serious patients, they will be admitted in hospitals which are linked with special service to this. Arrangements will be made to give the patients special care and attention in those hospitals with the help of the medical home care service. So also the free service of trained home nurses will be made available to those who are in urgent need of it.

My ultimate goal to provide medical help to the poor sick old patients and there by make them not a burden to the families as well as to the society as a whole. To provide the families of the patients are to be given sufficient help to lessen the poverty and mental tress. The bed ridden old patients should be made available the services of Doctors nurses lab technicians, at home. To extent the life span of the patients in the poor community by providing them with better medicines and medical care and to enable them to live long in the society.

I think that the services among the poor will be an alternative to lessen the royal and business mentality of the Multi Speciality Hospital and the Doctors.

I hope that you will be able to assist me as early as possible.

Thanking you
Joseph A M

Hai Hellen,
Thank you for your willingness to co-operate with me for the sucess of my project. I belive in your firm support and prayer.
Thanking you
Joseph

Hai Carolyn,
I have read your reply dated 17.1.09. I am thankfull to you for the same. I hope that you have read the project deatails. But no reply was found till date. Again I affirm that if there is any assistance I am willing to work hard for the poor to the best of my ability.
Thanking you
Joseph A M

Hello Joseph, I apologies for not responding to you sooner. Sometimes work on Nabuur works quickly, sometimes a little slowly. Try not to be disappointed..these things do take time although I understand that your needs are very urgent.

Thanks for trying to explain a bit more about what you want your project to look like. I don’t have answers yet- maybe others out there do…but I do have some more questions to help build the picture

I think that educating the people in your locality about Dementia/ Alzheimers is a very important step foreword. If you do not understand the nature of the disease then how can you begin to care for the person who suffers from it??
On a personal note my grandmother has Alzheimers so I too am having to understand this disease and what effects it has on a human being. Especially someone you love dearly. So one of the first things we all need to do is start gathering information about Alzheminers in India, and start to build relationships with the relevant groups in your country that can begin to provide education tools. Educating your neighbors will not happen overnight. it sounds like there are many superstitious barriers that need to be broken down, but as I said- people need to understand the disease first.

The second comment I’d like to make is about your Ambulance idea. Is it your idea that the ambulance will take the elderly patients to a special clinic that treats people with dementia and other diseases associated with age? What is the priority here? To find modes of transport to get the elderly to a doctor- OR to build a clinic where a free ambulance can go to? I would be very cautious about aiming to build a clinic with doctors/ nurses as this is a very large goal and I’ not sure Nabuur is the right place to be trying to achieve this goal. But that’s just my opinion- others may disagree.
In regards to Home Medical Care…that is probably something more realistic we could work with. Do you know if there are any examples of this kind of service in India or southern India?

One final thing for now…if we to a free ambulance service…where would the truly sick be taken to? If it is a hospital- will the hospital accept the patient without payment? Based on the information you have given us in your background info page it doesn’t sound like the hospitals in you locality would always accept the very poor and elderly patients. Can you please explain what happens if a poor elderly patient is taken to a hospital?
Thanks
Carolyn

Hi Joseph
The last 10 years of my career I worked in the Netherlands as a psychiatrist for the elderly, among them people with dementia. I know there is an immense difference in supplies and possiblities between the Netherlands and your region and I think it is very courageous you try to help the eldery and demented people in your region.

Some questions and remarks.
You named Alzheimer disease. How did you arrive at that diagnosis? There is an international protocol how to diagnose dementias. Except some technical investigations it does not need doctors or nurses but can be applied by interested (supervised) lay people. Anamnesis and two scales are important (MMSE- and ADL scale) to arrive at a diagnosis. Diagnosis is important because then you know better what to expect and what supportive measures are needed. The protocol and the scales can be found at internet.

I agree with Carolyn that education of family and relatives is very important to enhance understanding and prevent problems.
Maybe it would be possible to organize some day clinic without much costs.
A 24 hour service for immediate help, I think, would probably too ambitious. Which is a pity of course in some cases (fe treatment of a delirium).

Administration of medication probably will be a problem, because of costs and needed medical supervision.

You are sceptical about hospitals in your region, which I understand.
But would it be possible to have investigated blood samples sometimes to exclude some diseases producing symptoms as dementia does? Or would it be possible to ask some doctor to be a consultant, say on a monthly base?
Speaking about money: did you ever consider contacting the Grameen foundation to ask if your project could be embedded in their activities?

All the best. Bram de Waard

Hello Carolyn,
Thank you For your kind response. I was unable to send this reply in time because I was busy with the hospitalization my mother who is an Alzheimer’s patients for long years. So I am an experienced one who has been close contact with the various stages of the Alzhimers disease. I am thankful to you once again, that you have understood my problems and ready to assist my project.
Now I wish to clarify your doubts about my project. It is my great wish to help the poor old sick patients especially the Alzhimers ones and therey lessen that hardships of them as well as that of their families. This is from my long term experience. As mentioned above my mother has been suffering from Alzhimers disease for a long term. But very recently only it was confirmed after various tests in the hospital now also the treatment is continue. From last July on words she could not take food through mouth. So the a nasal tube is used to give her liquid food. She has lost the ability to speak also. We have contacted an Alzimers association in Bombay to know more about this disease but it was in vain. So also I have contacted a doctor for Alzimers association; but there was no response at all.
As you have said Indian’s are not at all fully aware of Alzhimers. Only very recently the doctors even diagnosed this disease. So there is no Alzhimers care unit in the Indian hospitals. Now a days two or three organization have developed for investigating this disease. But the society is even now not at all aware of this disease. So the poor old patients are suffering a lot in their whole life. Proper care cannot be given to them as the families are also unaware of this disease. So there is need for educating them. So I wish to part with my experience to there families. The families will become depressed and impoverished due to the long term treatment of their dear old ones. I wish to give counseling and advice to the family members.
Secondly the poor people are not having any conveyance of their own. In emergency case they have to depend on a hired vehicle. It is very costly and difficult to hire a one in time. So I wish to have an ordinary ambulance belonging to the Medical Home Care to carry the poor old patients to any of the hospitals near by in emergency situations. So also for visiting the bed ridden patients at home and replacing their Urine tubs and rice tubs, the medical staff are to be aken with help of this ambulance. It will be an ordinary ambulance without having any modern medical facilities, which is of low cost.
In our country there are no special hospitals and Medical Home Care service for the Alzhimers patients, as it is only diagnosing very recently. I wish to meet the hospital charges for the poor old patients and to provide them with nutritious food to
lessen the hardships of the patients as well as that of their families with the help of this medical Home Care service. Engaging a doctor and nurse in the Medical Home Care service centre its self is very expensive. My own experience has persuaded me to think about such a project.
Thanking you
Joseph

Hi Joseph, that's a lot of good information...I guess from my perspective trying to get someone kind of education strategy which would help the people of your area would be the first step. Whilst you have tried to contact the professionals with no luck, doesn't mean we shouldn't keep trying! I'll start some research and see if we can make any meaningful links.
As for the ambulance service...I'm really not sure where to start with that. Does anyone else have any ideas?? I agree with Bram that perhaps a day clinic could meet the needs of the elderly..but we would need experienced people and good connections to help set something like that up. And funding.
Carolyn

Hi Bram,
I am glad to now that you have discussed about my project with Carolyn. Even though there are Alzhimers patients our country their no special hospital for them. According to my experience I have some practical knowledge about it. My mother has been suffering from this disease for a long time. Now she is bedd ridden using urine tube, rice tube etc. along with the medicines Valparin Chrono 300, Alzil 5, Clopitab or Clopivas etc. We have not got any advice from Doctors how to care her. I have contacted with some Alizhimers Society in Guruvayoor But there was no response at all. In Government hospital also there is no special department for this disease.
The doctors have not mention about the MMSE – and ADL. After various test they have diagnose disease of my mother. The poor people her are not at all aware of this disease. So proper education regarding this disease is essential. The long term treatment of such patients will lead the family to debt and other miseries.
So I wish to start the Medical Home Care Service for helping the poor.
Thank you for your information regarding the protocol and scales in the internet.
I also wish to know more about delirium. When compared to the miseries of the poor the necessity for a free Ambulance (Vehicle) service and 24 hours medical service are not at to ambitious. It would be a great help to them if it will be possible.
I have not yet contacted the Grameen Foundation for funding.
The practice of attending the patients at home is not common here even in emergency situations. This is the root cause of all these problems among the people.
If this project will be started it will become a good help to all the bed ridden old patients especial the poor.
So I invite the attention of the philanthropists to help me to start such a project.
Thanking you
Joseph

Hi Carolyn,
Thankyou for your discussion of my project with Doctor Bram. The first step I belive is to start one. I aim at educating the family of the patient side by side with helping the patients at time of visiting. I also wish to conduct education compaigns for the locals occassionaly. The day clinic you have proposed is OK. But there is one practical difficulty in this. If a patient becomes serious at night the helpless poor family is forced to hire a costly privet vehicle to take the patient to the nearest hospital. So I wish to have an ordinary Ambulance for the clinic to take the patients freely to the hospital as and when necessary. The Ambulance can also be used by the doctor and nurse of the clinic to visit the sick old patients at their homes. If the project (Medical Home Care Service) can be started then I will be able to try to contact any other local organisations to help me to have an Ambulance, as this is a charitable work. I don't no wether it will be a success or not. It is reality that the root cause of poverty and debt is the long term treatment of the diseased family members. If we I can start this project, It will be great helpfull to the locals for ever.
Thanking you,
Joseph

joseph A M

Hi Joseph
to start with: it must be burdensome to care for your mother in the state she is, and maybe you will have bitter feelings sometimes knowing elsewhere much more organized support is available.
About dementia: I had a friend with Alzheimer starting at a young age, she died in a nursing home as unabled as your mother is now, My father who died in 2000 suffered from a vascular dementia, my mother kept him home as long as possible, but the last year before he died he did not recognize her anymore and developed delusions about her, trying to expulse her from their apartment now and then. She became fully exhausted not withstanding the help she got from professionals and her children.

You asked about delirium.
Delirium in demented people is caused by general dysfunction of the brain resulting in lowered / altered conciousness, confusion, (optical) hallucinations, unrest. Caused by the disease itself (fe Alzheimer / vascular dementia, especially at night) but often by some intercurrent disease fe an urine tract infection, heartfailure, systemic diseases fe anaemia. Even an overfilled bladder can trigger a delirium. Treatment consists of treating underlying causes and treatment of symptoms (often with a medicament called haloperidol, in a low dose).

I give you a link to the internationally accepted protocol for diagnosing and treating dementia:

http://www.nccconline.org/about/alzheimers.htm

plus a PDF document especially about care:

http://www.nccconline.org/pdf/CCN-AD_tools6-03.pdf

You will see some items are not realisable from your situation but by reading it you can judge about what IS realisable compared to the “ ideal” situation and you will get an idea how to realise step by step goals you set (also in educational matters)

Now about your project. You can never realise anything I think at your one. So: do you have some people in your environment who want to work together with you to improve care for the elderly? If not you should try to find them.

About professional assistence. You told a lot about what is NOT available, but I wondered what IS available and could be a starting point to improve diagnosis, treatment and care.
Maybe my questions will appear a bit naïve, but: when people in your village get sick, is there a doctor to consult in the vicinity? Or are people obliged to go to some hospital far away? Can some nurse be consulted, fe to change a catheter? Do people have an insurance or do they have to pay every consult and treatment? Are the local authorities interested in matters of health and sickness?
I mean: if there is some qualified doctor who can be consulted he should know about the dementia protocol. An insurance compagny might be interested in paying some care, also to prevent expensive acute care given by first aid departments of hospitals. Some authorities might be interested etc. I m curious what the Alzheimer association can do (I understand Carolyn is making a search about that).

About the ambulance: need it to be an ambulance? Or could you set up some use some other automobile which can be rented at low costs for medical purposes only?

All the best again: Bram de Waard

Hello everyone,
I’ve started my research into existing support and education structures in India around Alzheimer’s and Dementia. I believe that tapping into existing structures will be easier than trying to start anything from scratch. Joseph, you may feel that your previous experience with Alzheimer’s Organisations have not been very good or helpful, but we can try again. I also understand that your people do not always get the same treatment as others who are of higher caste etc, You have the support of lots of people on Nabuur to get you to the first step.

The first orghanisation I want o explore is Alzheimer’s and Related Disorders Society of India (ARDSI) which is a national voluntary organization dedicated to the care, support, and research of dementia.
http://www.mykerala.net/alzheimer/ardsi_today_01.html

I found this quote from the site…I though it was good news for you and your local people Joseph:
Alzheimer’s and Related Disorders Society of India, launched a new project in the name “Comprehensive Dementia Care Program” (CDCP) in Cochin Corporation with an objective of making Cochin as the first “dementia friendly city “ in India.

The Main activities undertaken by the ARDSI are:
A. COMPREHENSIVE DEMENTIA CARE PROGRAM AT COCHIN
(Funded by Sir Dorabji Tata Trust, Mumbai)
» Day care
» Domiciliary care
» Memory Clinic
» Geriatric Care Training
» Awareness programs
» Care givers’ meeting
» Guidance and counseling
» Research
» Dementia Care Fund

B.DEMENTIA RESPITE CARE AND DAY CARE AT KOTTAPAY, NEAR GURUVAYUR
(Supported by Rotary Club of Kunnamkulam (Dist.3200), Rotary Club of Boulder, Colarado, USA.(Dist 5450) and Rotary Foundation, Eisai Pharmaceuticals, Japan and Josephine Hague, UK)

There are 2 programmes provide by ARDSI which are very helpful:
AWARENESS PROGRAMMES
Regular awareness lectures about dementia are conducted in schools and colleges. Members of Kudumbashree, Anganwadi and other community workers were also included in the program. Notices, brochures, newsletters and other publications are distributed at frequent intervals among public. Also wide publicity is given through mass media. BPL Help lines are extensively used for dementia awareness programs.

CARE GIVERS’ MEETING
We organize caregivers’ meetings at regular intervals. The meetings are conducted for the caregivers at the dementia care center. Formation of Support Group was discussed in the last meeting in addition to normal discussions. Such Support Group could act as care givers and offer their services working in the field of dementia.

These are 2 areas where you could get involved Joseph- and also help you further develop your skills and understanding of this disease.

I found out that there are several Chapters of this organisation in the Kerala area. Can you please tell me if you have already contacted any of them? If none- I will contact the head office first and then go from there.

ARDSI Calicut (Kozhikode) Chapter,

ARDSI Kochi Chapter,
Dr. Mathew Abraham, President Neurological Clinic

ARDSI Kottayam Chapter,
Mr. Mathew Joseph Kanamala, Secretary,
Grace Medical Centre,

ARDSI Pathanamthitta Chapter,
Mr.Sasidharan Nair, President
YMCA Building

ARDSI Thiruvananthapuram (Trivandrum) Chapter,
Mrs. Meera Pattabi, Secretary,
Vanchiyoor, Thiruvananthapuram

My compliments for the search you did Carolyn! Bram de Waard

Thanks Bram!
In other good news (it's amazing what you find on the internet!) I have come across a PhD student here in Australia whose thesis is very much about what we are trying to solve here. I am going to email her today with the view that we can talk over the phone and perhaps she can give us some good leads- or in the least- give us a better understanding of what is going in in India in terms of care services for dementia patients, and government policies etc,
The abstract is below:
Age, invisibility and madness: Understanding dementia care in India
This project will contribute to knowledge about dementia care in India by investigating how
families provide care and interpret the meanings invested in the process. Ms Brijnath will be
working with family members, people with dementia, key service providers and the Alzheimer’s
and Related Disorder’s Society of India (ARDSI) in New Delhi, India. Her research aims to find
out local meanings of dementia causes and management in New Delhi, India; experiences of
providing care; examining how stigma functions in everyday life; investigating support systems
available and the barriers encountered by carers when accessing support. The research findings
will be used to lobby the Indian government for better services for people with dementia, and will
also have relevance for Indian immigrants in Australia.