Hi just wanted to add to my post that Ms Brijnath and I are going to talk with each at the end of this week. I'll let you know what I find out.

Hai Carolyn,
Thank you for your great task in searching out Alzhimers care service units in India especially in Kerala . I am very much thankful for your information about Alzhimers organization.
At an early date we have contacted the Guruvayoor chapter but there was no response at all. Now at present, according to your advice I have contacted Grace Hospital by Ph No: 0481-2517495. They said that there is not special treatment for the Alzhimer patients and gave me another phone No: 0481-2505156 contacted with that number and they gave me yet another No:0481-2517676 I from there also I could not any Information except another No: and it was the mobail Phone No. of Sri Mathew Joseph Kanamala, ARDSI Kottayam Chapter, Secretary, Grace Medical Centre Kottayam. I contacted him and he told me that at present there is no Doctor and nurse there. He also told me that there is no practice of attending the bed- ridden patients at home and remove the catheter etc. This is the nearest place to my locality.
I have also contacted ARDSI Pathanamthitta Chapter and got some information about the work. They are also attending the Alzhimers patients at homes. This centre is far away from us and so it is impossible to get their attention to my mother. So also the Cochin ARDSI chapter is far far away from us.
So it is impossible for the poor families to get the services of any of these chapters because they are too expensive to be reached. Over and above it is not sure that there will be any consideration for the poor.
In these circumstances I was inspired to give free service to the poor old and chronic diseased people including Alzhimers patients in my locality, through the project of Medical Home Care Service. I believe that I will be able to start one unit as early as possible only with the help of my Nabuur friends. Thus I wish to save the poor families from disappointment and debt caused by the long term treatment of their old ones. Till now, even the Government or the multinational hospitals have no idea about this situation of debt arising from the longterm treatment of the poor patients.
Once again I am very much thankful to you for the great efforts you have made towards our project of ‘Medical Home Care Service’
May God bless you
Joseph

Joseph, it must be very frustrating that you've made so many contacts yet no one has been able to really give you any answers.
I guess from my understanding and general experience of providing health care to the masses, this is not something you can do alone. And not without training.

I have identified three separate parts to your ideas. Please correct me if I am wrong.
1- is to provide education to the local people about caring for the elderly who are sick, how to care for Alzheimer patients and what is Alzheimer's?
2- is to provide a transport system for this sick and elderly to be taken to a hospital or health facility - for no cost
3- is to provide a home medical service where a nurse and/or doctor can attend to the medical needs of a poor elderly patient in their home.

Each part of this idea requires a different approach. The first part (education) requires you to skill yourself (and others) to learn more about Alzheimer's and to work with the local community to help them understand that It's not just 'old age" but is in fact a disease and sufferers require special attention at the later stages of the disease. Keeping contact with ARDSI ( or other similar organisations) would be very helpful.
Whilst you do have the personal experience of knowing what happens to an Alzheimer's sufferer, there is a lot to learn about how you educate many people about this subject and about how they can care for their relatives. Therefore connecting with an existing organisation is a reasonable way forward. The Chapter of ARDSI in Pathanamthitta that already offers home care- they are the ones to really be asking questions to. OK they are far away from your local village- but if they already have a service up and running then surely they are in the best position to give you more information, guidance and tips on how to begin this process.
I would urge you to continue communicating with them. You cannot do this alone and there is still a lot to learn from the experts.

Your second idea about the ambulance/transport service requires funding and equipment (eg.car/ van). Again you need to connect with the right organisations who might be able to provide you with a car or the money to purchase a car. And you also need to find a driver. This driver may, or may not require payment. And how will people alert the driver that they need the ambulance? Mobile phone? Do the people who need this service have access to phones? Who will pay to maintain (look after) the vehicle? Whilst Nabuur Neighbours can definitely help to research and find organisations or charities who can help , it’s not common that Neighbours will send funding to you directly. IF you took out a loan then you would have to ask people to pay money each time they used the ambulance service. But from what you have written it sounds like you want to provide a free service as the poor cannot afford to pay. Am I right?

The third part of your idea requires a much bigger financial investment. It requires a paid Nurse and a paid Doctor. You would need enough money to provide at a minimum 1 years salary or at least 2 years to get their commitment. It also requires building up a service and being clear about what type of service they will provide? How will they get access to medicines? Where will the medicines be kept? Will the medicines be given freely? If so- how will this be funded? Then there is the cost of catheters and nasal tubes and other medical equipment. A mobile clinic would require approval from local government and health ministries. Again, in my opinion, I would suggest working through an existing organisation such as ARDSI or a community health care provider would be helpful.

You are right to insist that the poor be considered in the discussion in your country around Alzheimer's disease and care for patients with chronic illness. I congratulate you for wanting to change things for you and your mother and your local neighbours. I fully understand that without money the poor cannot look after their health properly and they are severely disadvantaged by this.
From everything you have written to us about your ideas there are many opportunities where neighbours on Nabuur can help you- e.g in research, investigating connections with appropriate organisations in India, talking to these organisations, finding charities that may be able to find funding for the purchase of a car etc. collecting useful education tools etc. etc Is this the sort of help you are looking for or did you have some other ideas?
Regards, Carolyn

21/02/09
Sorry for the delay in sending you the message. Thank you for your advice and efforts towards my project. I welcome your suggestions. From your message I understand that you have also understood the matter thoroughly.
According to your advice I am trying to find out two or three persons to assist me in carrying our my project. I have some experience and also I am trying to get some more training from the Doctors and nurses.
The three parts of the project as you have mentioned is apt.
1. As the first step I wish to educate to the family of the sick elderly about the base of caring the patient and about the disease. The families of the chronic and other diseased persons will be taught about the ways to prevent the diseases. This will be more effective and frootful to the society also to change their attitude towards the diseased persons. Even now our society is ignorant about the Alzhimer diseas. Any hospital has enitiated to give information about this diseas to the society. Even though ARDSI is giving education in this field we are unable to know about this programme. Any how we have planed to give education to the poor people about this diseas from our experience. According to your advice I wish to contact with ARDI Pathanamthitta to get more information.
2. Secondly an ambulance or van is essential for the project to transport the patients to the hospital and also the doctor and nurse to the bed ridden patients’ homes. I am very much thankful to the nabuur friends who are willing to research and find organizations or charities who can help me in this regard. It is also essential that there should be a driver with mobile phone to attend the phone calls from the patients’ families. He should also be a helpful attender. I wish to help the poor people as well as possible, without accepting any money for this service. This can be balanced by rendering services to the rich patients who are capable of paying money for this. I our country, availing a loan is risky due to the high interest rate of 12% and above.
3. As you have said the third par of my project is very expensive. I wish to search for a voluntary doctor. But I am not sure to get one. Otherwise I have to find out money for this, from any other source. I wish to provide medicines and other medical materials to the poor by contacting Medical companies or other organizations. But the practical difficulty in our country is that the common people will not get sufficient consideration for anything. This is the reason for the failure of starting any charitable deeds by common people. I could submit such a project and say the problems freely us you are merely a foreign agency. So it is better for the nabuur friends only to be in contact with other organizations for better response in this matter.
Any have I should try my best to be in contact with organizations like ARDI for help. I should also try to get the approval of the government to start the Medical Home Care Service, if it is essential.
We can only be in contact with other individuals or organizations for further support only after starting of this project.
I am fully satisfied with presenting my idea of ‘Medical Home Care Service’, frankly before the world organization which is willing the help of poor struggling old patients and their families. I am thankful to you all in this regard.
Thanking You
Joseph

Hi everyone,
as I mentioned in my post last week, i found out that at person at Monash Univeristy in Melbourne, Australia is currently conducting her PhD research on Age, Invisibility and Madness in India.
Today I was able to speak with Bianca. I just want to share what she told me and some of her thoughts.
Bianca actually spent a fair bit of time in Kerela last year working with ARDSI (Alzheimers association of India). She said that Joseph you were in a very good position and lucky to be in a State where ARDSI has a good presence and has already done a lot of good work.
She was very aware of the work that the Kochin branch of ARDSI had done and was strongly supportive of connecting with them. Jospeh, she reccommended that you continue to follow up with the Kochin branch as they were the ones that ran a Home Care service already. Bianca offerred to to talk to you and I via email to help you get to the right people (we can discuss that off-line Joseph). She also indicated that they do training sessions for home care attendents - these peolpe are not really nurses- more like people like yourself Jospeh who have an interest in helping the elderly dementia patients. She said ARDSI use these people- along with some trained nurses- to attend to nasal tubes, catheters (urine tubes) for the people who are home-bound. I wonder if this this training is something you can do?
She also reccommended that you visit the closest ARDSI branch to where you live as there are people there who are in similar positions to you.
The good news is that she agreed with you Jospeh- a home medical service is the best way to care for these patients. She said that a dementia patient would only be treated in a hospital if they had soemthing acutely wrong with them- eg infection, another disease, or if they were in their last 2-3 days of life (dying). Therefore treatment and care of dementia patients at home was really, at this stage, the only alternative. Bianca was not hopeful of finding doctors who would be part of the Home Attendees program and suggested that training locals would be a better option at this stage

Bianca also mentioned that the Kochin branch had developed some excellent resources for the population to help educate them that dementia was not about growing old, but that it was a disease. Do you have these brochures Jospeh? If not- we need to get you some ASAP. She also cautioned that educating the local villagers was not going to happen overnight and it would require years of attention and a team of educators.

We talked about medication and she explained that apart from the ocassional anti-psychotic drugs, and alternative therapies and even the use of faith healers- there was no other medication that was given to Alzheimers patients in India. I guess it is not that different to here in Australia where, apart from some specific medication like Aricep and some mood-altering medication, there is no "cure" or any Alzhemiers specific medication. Dr Braam may be able to shed some more light on that.

So we talked about some other organisations in India who were working in this field of Alzheimers and Dementia care and she names a few but stressed that ARDSI were the ones who had already done most of the work and had very credible professionals guiding it's work.

Jospeh- I know you want to get an ambulance ASAP however I am personally at a loss as to how we do that. I just don't know where we would get a donation of a van from! Getting a transport option for the very sick is really just one little part of this whole problem.
Could you please explain to us that IF we had trained local people to attend to the immediate needs of the dementia patients (help with nasal tubes etc)- would there still be a need for an ambulance service?
Regards Carolyn

hello everybody
-i agree about hospitalisation to be avoided in Alzheimer patients. It can cause an increase in symptoms and further deterioration. So home care is best.

-medication is indicated in a small percentage of patients. If, it s about a low dose of an antipsychotic drug to combat psychotic (delirium) symptoms (next to investigation of the causes of a delirium (simple somatic disorders / dehydration / all sorts of medicaments). Aricept and comparable medicaments dont improve someone s condition but probably delay deterioration for a few (2-3) years.
And those medicaments are very expensive.

-i stumbled over a list of doctors and memory clinics BUT it is edited by some pharmaceutical enterprise who s interest is selling Aricept. I add the link because it would be best to find some doctor who is willing to be a consultant for a few hours a week.
http://www.memorysolutions.co.in/index1.htm

-ambulance, think, should be replaced by : " some way to transport sick people when necessary".
Joseph, all the best!

Hallo Doctor Bram,
Sorry for your personal experience. I also sympathies with you and we are of the same fate.
Sorry for the delay in sending you the reply. I was very busy indulging in some personal problems. I always welcome your comments and ideas which are helpful to me to carry out my programs. First of all I thank you for your information and advice as well as enquiries and solutions.
According to your information I understand that my mother is having delirium. She is now treated for the various symptoms. I also thank you for your information about more help lines.
About the project, I may say that I am trying to find out more voluntary people to help me to carry out the programs. Secondly, in my village, when the people become sick, we have to take them to the nearest private hospital 3 or 4 kilometers away, in order to consult with a doctor. Patients with old age diseases like dementia and Alzhimers and other chronic diseases cannot depend on the government hospitals because proper attention and medicines will not be provided in time.
So also nurses are not at all available for home care service, to replace the catheter, the nasal tube etc. So the patient’s relatives depend on hospital nurses for this, bearing the huge expenses. It is a serious fact that the poor villagers usually do not take initiative to carry the sick old patients to the hospital considering the huge expenses and this will make their condition worse. So I wish to give them, free treatment at their homes its self. Each time the patients have to pay the hospital charges and here, there are no insurance schemes for treatment at hosepitals.
As you have said I am trying to find out a voluntary doctor for my project. But for me it is a difficult task. If it is possible I welcome your assistance in finding out a voluntary doctor to my project for an honorarium. I am considering to get one four wheeler as a donation from any organization or individual. Hiring a one is more expensive @ Rs 1000/- per day. Without one it is very difficult to carry out the programs.
Just like your opinion it is better to have sufficient home care rather than costly hospitalization in the case of the Alzhimer patients at initial stage. In acute stages hospitalization is essential for the urgent attention by the doctors. For carrying those patients to the hospital also, a vehicle is necessary. It may not be easy to hire one at the time of emergency. This is the practical difficulty in our country.
Thank you for all your comments and information’s they are very helpful to think about the different views about my project. I welcome your advice and ideas in future also.
I have a come a cross some organizations providing free medicines and medical materials as well as voluntary doctors but I think that it is better on your part to contact with them if possible. The following are the addresses.

http://imaworldhealth.org/ContactUs/Signup.aspx
Email: imainfo@imaworldhealth.org

International Health Volunteers
Doctors of the World

Doctors without Borders

http://library.umassmed.edu/ihoc/viewall.cfm

http://www.imva.org/
https://www.hvousa.org/
https://www.hvousa.org/ohvo.cfm
http://www.missionfinder.org/medical.htm
http://www.missionfinder.org/addurl.htm
http://www.healthcarevolunteer.com/
http://www.healthcarevolunteer.com/organizations/index.php
info@projects-abroad.nl
http://www.voluntaryprojectsoverseas.org

Thanking you,
Joseph

hi Joseph
tahnks for yr response! I ve a clearer idea about yr situation now and can imagine how frustrating it is that doctors and nurses working at a hospital only 4 km s away from yr village always appear to expect patients coming to them!
About phoning etc. Think we should make a hierarchy in who approaches who and when. Best would be, i think, to begin with, Carolyn having contact with the Indian Alzheimer association to see what is possible. Of course she can use the list of hospitals and doctors i found (see my previous contribution). If her activities dont have a result other possibilities might come in sight (though i m not too optimistic about alternatives). It might be an idea that you produce adres / telephone number etc of the nearby hospital + name of neurolgists, some specialist specialized in problems of elderly people etc, so that Carolyn (or me, let her decide upon that) could contact.
Again:all the best! Bram de Waard

Hai Carolyn

Thank you for your information and advice relating to the discussion with Madam Vianca. I welcome your comments and advice because they are more informative. Your information that the Cochin branch of ARDSI in Kerala state having a home care unit is very helpful to me to collect further knowledge about Alzhimer disease and its treatment. I also understand that the training program is very effective. I am trying to attend this program according to your advice . I have planned to get some trained nurses for replacing the catheter and rice tube and also to dress the bed sores of the patients
I have not received any brochures I wish to have them because they will be helpful for me to train the villagers by a team of educators. The education to the family members especially to the career is a must for the effective nursing of the Alzhimer patients. For this purpose trained persons will be engaged. An ambulance or four wheeler is also an essential thing for the Medical Home Care Service to transport the serious patients to the hospital as well as to carry the trained nurses and other persons to the homes of the diseased. Wether the “Give Meaning” will be helpful to start this project? Would you able to contact with the undermentioned to know more about the help. www.aidindia.org, www.asian foundation org.uk, www:emms.org.
If this project is started it can be expanded in course of time and will be helpful to some of the poor patients in my village.
Thanking you

Joseph AM

Hello Jospeh, sorry I haven't replied sooner.
I have some more questions for you, if you don't mind answering them:)

1- Is hiring a car the only option someone like you has to get a sick relative to the hospital? Rs1000 is expensive to hire a car- agreed. (About USD19, AUD30) Are taxi's freely available in Vijapuram?
2- You said that to pay for the replacement of nasal tubes also costs you money. Is this part of the hospital costs or do you have to pay extra money for the medical items such as tubes?
3- From your personal situtaion, do you think you could learn how to replace a nasal tube? Just think- if you were given the training, is this something that would help people like you in the same situation?
The reason I ask this is that in my conversation with Bianca she indicated that in the Chochin branch of ARDSI they do teach local people some skills to further help their relatives or neighbours. You see Jospeh, whilst sometimes the sick elderly need to go to hospital, there are many tings that can be done at home which don't require a doctor or even a nurse. So in my mind, the need to have a volunteer doctor is not so critical- yet. You have a better chance of bringing together a small group of people from Vijaypuram to learn some basic healthcare skills such as - how to prevent bed sores (pressure sores), how to clean catheters and nasal tubes, also maybe how to insert nasal tubes, how to administer medication plus a range of other helpful skills whcih could help prevent delirium and make the quality of life better for the dementia patient.

I believe that linking in with the Cochin home care service- and replicating that in Vijaypuram would be a very positive step forward. I will contact Bianca again this week and see how we can connect you with these people so that they can help you start. If you are part of an established group then we would have a better chance of finding some small donations which can be used in your local area to transport the pateints to hospital when they need to go.
I will also follow up on any of the brochures- if you have a mailing address, could you please send it to me via email?

Bram and you have listed a number of resources which we all need to follow up. It would be good to recruit some new Neighbours to this village as investigating these sites can take up a lot of time.
I don't think we are in position to put up a proposal on GiveMeaning yet. Raising money for a car or van will require a lot of money. I think we need ot start researching organisations in India who may be in a position to donate a vehicle.
So maybe a small task list for now:
1- I will follow up with Bianca and ARDSI again
2- Jospeh- can you please list the names of location of the 2-3 nearest hospitals to your village and whether they are Public or Private
3- if any other Neighbour would like to pick one of the website posted by Jospeh below and report back to us what you have found out about them?

Best regards Carolyn

Hi!Is there any doctor or nurse to be willing to support these tasks? If you want to supply
any medical material ,you must get some people who are rich or have some background like
hospitals.I think that if you need vehicles ,you can ask the transport company.Maybe they have
used car.

--
YEH YU WEN

Hello Carolyn,
Thankyou for your message and advice relating to the Medical Home Care Service. I was unable to send the reply in time because of some personal problems. I apologies for it.
Now I wish to clarify your doubts.

1. Taxis are available here. But one problem is that the taxis are usually reserved for long trips. When they are called all on a sudden they may not attend. They prefer long trips and try to avoid short ones. They are also not willing to attend night trips to the hospitals. The poor people have no vehicles at all. So they take their elder ones in a very criticl stage only in order to avoid transportation problem. So also the geriatric patients are unable to be transported to the hospital in two wheelers or three wheelers. The rich who are having four wheelers are not at all willing to transport the patients to the hospital as an when required. This is the situation here. Any how there should have a car / a van for the Medical Home Care Service for its smooth functioning of transporting the patients to the hospital and for conducting health campaigns. Thus it can be used for multipurpose. Some motor vehicle companies may be willing to sponsor one four wheeler for this purpose. But it will be more effective if it is introduced by some one who is having high social position. A promoter like yours self can easily achieve this. So I hope that you will help me in this regard.

2. In our country the replacement of nasal tubes and catheters and charged by the hospitals. Both service charge and cost of the tubes as well as consulting fees are to be paid on the spot. Even though I have some personal experience in nursing my mother , I am not in a position to replace the tubs for my self. This is the practical difficulty with all other caregivers. According to your advice I am trying to learn more about replacing the tubes.

3. Thankyou for you and Bianca in helping me to link with Cochin Home Care Service. In this connection I wish to invite your attention that the Medical Home Care Service at Vijayapuram intends to help all the geriatric patients including Alzhimer patients by providing them with free medical service and their by help their poor families to be free from bank debts and poverty which will lead them even to family suicide. The prevention of such unpleasant incidents is important goal of this Medical Home Care Service. I heartily welcome your willingness to find out donors in favour of me, for the starting of the Medical Home Care Service. Thank, you and Bianca for your great heart in helping me in my task. I hope that both of you can achieve great things fore me.

Hallo Carolyn according to your advice I have linked my project with a charitable trust for the multi- purpose development of the poor people. This is a small organization in its initial stage with a great vision of helping the poor in different ways. I have decided to work with this organization namely “Human Resource Education and Socio Economic Development Centre”. There are three of four persons willing to help me in my work when it is started.

As you have enquired I am giving the names of some nearest hospitals:

1. Mandiram Hospital,Manganam P. O., Kottayam

2. Karipal Hospital, Vadavathoor P O.,Kottayam

3. District Government Hospital (Government), Kottayam

It is a fact that if such a Medical Home Care Service is started by the private hospitals the poor patients will not be able to get the benefits as I intend.

Madam, I do not understand the third small task you have mentioned in your message. Would you please explain it for me.

I am also sending my Postal Address via privet message.

Thanking you
Joseph

Hello Jospeh- thanks for clarifying many things! It will help us all build up a much better picture of what the situation is like in Vijaypuram.
I am very interested to hear more about Human Resource Education and Socio Economic Development Centre. Do they have a website? Caa you tell us more about how they might be able to help you? This is a very positive step forward if you are able to link in with them.

Regarding the last task- that was really a call out to other Nabuur neighbours to help investigate the many websites that you and Bram have posted. Researching these organisations cn take quite some time so I was asking for help with this.

Jospeh I do understand that your home service idea is one which iwll assist not only Alzheimer's patients but the sick elderly people of your community. In order to put together proposals and ask organisations for donations and aid, you need first to set yourself up with some kind of structure. Right now If I wrote to someone asking them to donate a car, how would I convince them that you are a legitimate person with a legitimate organisation behind you? Whilst you don't have to be an actual "organisation" we need to help you develop a plan, you need people to assist or sponsor or support you (like the Human Resource Centre & ARDSI) so that the people we contact feel that you are not just ONE person but someone who has the backing of other groups. Does that make sense?

I have started investigating some of the websites you mentioned. So far I have not found one that immediately makes me think they would donate. I will report back here on Nabuur in a few days about the ones I've researched and what i have found.
Reagrds Carolyn

hi Carolyn, Joseph and everybody else
Thank you Carolyn for doing so much research. You asked for help investigating sites etc., i m willing to, but please let me know what sites etc i could do research on to prevent everybody is going to investigate, contact everything, everybody.
I am convinced that in Josephs region there are possibilities to organise home care because especially in Kerala there are already organisations functioning. Fe there is the Nilambur Palliative Care Society founden by Mr Basheers years ago, nurses and doctors involved.

http://southasia.oneworld.net/fromthegrassroots/barefoot-healthcare-prov...

And send you a link to an article about health services in India, Kerala again stands outt

http://www.eolc-observatory.net/global_analysis/pdf/india_country_report...
All the best, Bram de Waard

Bram, I have just read the article you posted (barefoot healthcare) and it is brilliant! I'm excited- you've stumbled upon something that can give us many leads. And yes you are right- this organisation has already set up a very effective network of palliative care volunteers. Jospeh- plese read this article. Everything you want to do- they are already doing it!
I will try to find out more information about India association of Palliative Care, Neighbourood Network in Palliative Care, as well as the Nilambur Palliative Care society. These will be a very good start. Bram- if you can find any moe info about these groups that would be very helpful too.

Here are somw excerpts from the article published in OneWorldAsia.
Thousands of volunteers in southern Indian state of Kerala provide palliative care to poor chronically ill patients within the confines of their homes. K.M. Basheer, the man behind this medical movement, is a farmer with a modest educational background.
K.M. Basheer’s educational qualifications make him an unlikely leader of a medical movement. He has not studied beyond Class X. But this farmer from Nilambur in Kerala’s Malappuram district heads a society that arranges for home and neighbourhood-level care for the chronically ill. His venture, the Nilambur Palliative Care Society, has inspired several other groups.
The Nilambur initiative spurred on several similar societies in Malappuram and by 2000, 70% of the chronically ill in the district did not have to visit a hospital for palliative care.
NNPC today has a network of about 150 such clinics supported by 10,000 trained volunteers, 85 doctors and 270 nurses looking after about 25,000 patients at any point.
In Malappuram alone, there are 29 palliative care societies, and 25 of them have their own clinics with paid part-time doctors, auxiliary nurses and own homecare vehicles. Each unit serves four to five panchayats.