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Tuesday, August 30, 2011

A Dementia Caregiver shares her "wishlist" to settle quality dementia care Managment in India.


"Kalpana Malani, a Mumbai resident in her mid-fifties, is a caregiver for a mother with dementia. She balances this responsibility along with her other family responsibilities and managing her own retail business. In this interview, Kalpana describes her caregiving situation and problems, and shares her wishlist as a caregiver".......

What is your wishlist as a caregiver, in terms of what you would like from various support systems and persons around you?

Before I write this I must emphasize that I write it from only from my viewpoint — I do understand that many of the items that I wish for may not be feasible or practical, so to some extent this will be a one-sided viewpoint.

  • Government sponsored awareness ads on TV about the symptoms of dementia along with how to care for them;
  • More well-run memory clinics at Government hospitals could be sponsored and run by corporates or NGOs;

  • Dementia care to be taught to all nursing staff and doctors, and maybe a small refresher course for existing staff. I understand that most of the existing staff will be very reluctant to retrain but if it is a well-run program it will be successful;

  • Government should check on Ayah bureaus and rates should be fixed ( as per labour laws for 9 hours a skilled worker in a hospital gets Rs.200 per day, and a semi-skilled Rs 185);

  • Government -NGO collaborated day care centres at least 4 for each big city with payment based on your ration card; you pay more if you are in the high income group;

  • Medical council should write to all their members about dementia – and this should be followed up by NGOs who visit GPs area wise with a presentation and pamphlets;
  • Using lists of GPs available from the medical council, the NGOs and volunteers should follow up with GPs regarding dementia awareness and resolve any queries that GPs have. This follow up could also be a research project along with colleges and Pharma companies ( who will benefit by increased detection); 
  • From Pharma companies, dementia medicines available in syrup form as most patients have problem in swallowing tablets;
  • From NGOs, work with ALMs (advanced locality Management) to set up a volunteer base of elders who will check up on those needing help in their locality. Actions taken could be something as simple a home visit to cheer up a dementia patient or an elderly person;
  • Senior citizen groups could also help by arranging home visits to dementia patients.

That is quite an exhaustive wish-list. Could you select a couple of items that would make a great difference to you and improve your ability to care/ balance your life around the caregiving?

  • Lowering of ayah bureau rates;
  • Help from senior citizen groups for home visits. There are several senior citizen groups in Mumbai, particularly amongst morning walkers. Maybe they can form a home visit group and engage patients and other elderly immobile persons who are home-bound, by doing activities like singing songs with them or playing simple games. This would really help in my Mum’s case because she is so lonely at times and she would like to be part of a chattering, jolly group."
.......


Read more at Dementia Care Notes Website :









Sunday, August 28, 2011

Dementia Brochure in Malayalam language.

Dementia Caregiver Guide in Malayalam available on request on Pdf version at : hendi_lingiah@hotmail.com.

For more infos and advises, do visit our Facebook page Alzheimer's Disease in India and ask your questions to our Family Caregivers and or professional practitioners.


Hendi Lingiah
Clinical Psychologist in gerontology.

Dementia Brochure in Marathi Language from ARDSI Pune Chapter.


ARDSI Brochure in Marathi Language from Pune Chapter. Thanks to Sailesh Mishra of ARDSI Mumbai and president of the Silver Innings Foundation.


Wednesday, August 24, 2011

Gvt adressing Geriatric Needs in INDIA from 2012.

India Addresses Concerns of Demographic Ageing


"The Times of India reported this week that the country’s Health Ministry is set to roll out a National Programme for the Health Care of the Elderly (NPHCE) beginning in 2012. Joint Chief of the Ministry of Health and Family Welfare, B. K. Prasad explains the program is designed to be preventative, curative, and rehabilitative for the elderly.

Under the program, district hospitals will create 10-bed geriatric wards, while eight regional centers are set to be equipped with 30-bed geriatric centers. In addition, healthcare workers in sub-centers will be trained to make home visits, placing significant focus on bedridden seniors. The healthcare staff will also train families to manage the health of their loved ones and facilitate in the delivery of supportive devices".


read more at :

http://silveradoblogs.com/news/india-addresses-concerns-of-demographic-ageing/


and :







VIDEO from Care Professionals and Families interacting with patients suffering from Alzheimer's Disease in India today.

Tuesday, August 23, 2011

"About End of Life in developed and developing countries today" on “The Indian Caregiver’s Corner”.

“The Indian Caregiver’s Corner” :
This section is made in part, to explain theoretically the different aspects of Alzheimer’s Disease, the patients and caregivers have to face worldwide… like the impairment process, the different disorders: memory, language, organization… changes in personality and behavior…. But also, the impact of the pharmacological and non-pharmacological interventions like socialization, meditation, physical exercise, the caregiver’s role and difficulties encountered in India.

Readers are invited to enrich this section to make it an experience-based one, a resourceful section for other caregivers to find there helpful tips/ways to cope with the symptoms, the daily care activities and to face specific situations in their local setting, at home, outside, with family, doctors….

About End of Life in developed and developing countries today.

Here are some thoughts one of our members based in Mumbai kindly agreed to share with us :

"I know this is a very sensitive issue but I feel it needs to be adressed - If I (I'm speaking of myself not for my mum) am diagnosed with dementia and do not want to subject my loved ones to the trauma of caregiving or subject myself to end my days in institutional care am I allowed to ask for assisted death. Who do I petition for this - I'd like to do it legally rather than commit suicide and leave behind a police case. I know one can make a living will for not having forced feeding or a ventilator. I don't mind petitioning the powers that be - I need to know how it is done. I also understand that it will take an enormous amount of time and effort for this kind of permission but if you look at the current scenario in India this is the most rational solution for me - the states gives me or my family no practical support - family and community support is sketchy and institutionalized care is frightfully expensive. Has anyone done this before ?"

Edited with permission of Ms Kalpana Malani, primary caregiver of her mother in Mumbai.

It has led to some reactions on our Facebook group and below is our reply,

Alzheimer’s Disease in India:

Dear members, thanks for sharing your very deep and sensitive thoughts indeed. Everyone has the right to think about his own end of life and feel worried/frightened especially when facing a relative/siblings/friends/neighbors deteriorating till losing totally his/her abilities. Indeed, it returns us to our own death, the impact that a painful end of life will have on our own self-esteem and the suffering we may undergo. Also, it makes us think about the look and the care our environment would be able to provide us...and on that point nothing is sure.

In France, euthanasia is not allowed yet but some people start asking for it. However, the situation is not the same in India. Indeed, in France "living will/advanced directives" is implemented and framed/enforced by the law : you can give your will in case someday you are terminally ill or let's say in a "close to death" critic situation; you may say in there that you don't want any agressive therapy and/or reanimation. Doctors would have then, to take care of you outside of any curative treatment. Of course, you still have the right to change your mind whenever you want. It does raise ethical issues and that's why it is always discussed collectively referred to the law and with a prior concern for the patient, his disease, his personality, life and family when there are some. The law is there to guide the care professionals on their practices, allowing you to pass away peacefully and accordind to your own health condition and not on someone else's decision.

But as I said, the situation is very different in India. As far as I can understand there's No advanced directives/living will, No social security system, No trained caregivers services, No home health care agencies, No subsidies for keeping your elderly parent at home, for Day Care Centers, for Old Age Homes and, the cost of hospitalization is so expensive that it's a real financial constraint for low and middle class households. You are lucky if eligible for some tax deductions.

The situation is not perfect or completely satisfying in developed countries either but it takes time to implement a comprehensive Public Health Policy especially starting on Old Age Care and End of Life Care. It may be quiet long in India but for now, personally, it seems to me sad to turn ourselves to this direction mainly for material or economic reasons...which can always be improved in developing countries. But will one have the patience to wait at least for his own case or build a system?

Hendi LINGIAH
Clinical Psychologist in Gerontology.
22/08/2011

Sunday, August 21, 2011

What are activity-coordinators ?“ on the Indian Caregiver’s Corner.

“The Indian Caregiver’s Corner” :



This section is made in part, to explain theoretically the different aspects of Alzheimer’s Disease, the patients and caregivers have to face worldwide… like the impairment process, the different disorders: memory, language, organization… changes in personality and behavior…. But also, the impact of the pharmacological and non-pharmacological interventions like socialization, meditation, physical exercise, the caregiver’s role and difficulties encountered in India.
Readers are invited to enrich this section to make it an experience-based one, a resourceful section for other caregivers to find there helpful tips/ways to cope with the symptoms, the daily care activities and to face specific situations in their local setting, at home, outside, with family, doctors….


"What are Activity-Coordinators" :

Generally people are very busy during the majority of our lives but as we get older mobility issues and dementia can cause many older persons to become less physically active and that can lead to isolation. When someone enters a care home an activity coordinator is there to encourage individuals to engage in a variety activities that are essential to the health and well-being of the individuals. The type of activities various as does their benefits.
Social activities :
According to a study published in the British Medical Journal, productive and socially active people in the latter stages of life live significantly longer than thos who are not involved in such activities.

Leisure activities :
Leisure activities that encourage active participation and social interaction are valuable for the person with dementia. Sing-a-long, listening to radio, playing chess, physical exercise, keeping pets and craft work are common examples of leisure activities that provide opportunity for pleasure and enjoyment.
Reminiscence activities :
Through a process of recollection of the past and life reviews for the unresolved conflicts, persons with dementia could achieve more consistent and positive evaluations of their past, accept personal losses and preserve a sense of usefulness and satisfaction with their lives.

Memory training activities :
Recent memories are commonly lost first but older memories are better preserved for the person with dementia. Memory games such as cards matching, reviewing TV drama plots and news discussion are good opportunities for them to realize their memory potential and for social interaction and enjoyment.
Sensory stimulation activities :
Through focusing on a specific sense, the person with dementia could be assisted to explore familiar smells, movements, textures, sights, sounds and tastes that relate to his/her previous life experiences. Sensory stimulation could be used to improve level of alertness and awareness to the environment and arouse appropriate responses from the person with dementia. The taste of fruit, the sound of birds, the smell of flowers and texture of toys are day-to-day stimuli that could provide comfort, encourage social interaction and minimize challenging behaviour.
Edited with Permission of Tracey Knight, activity-coordinator.
from Alzheimer's Disease in India Facebook page,
21/08/2011.

"A Caregiver's testimony from Mumbai, India" on “The Indian Caregiver’s Corner”

Testimony edited with permission of Ms Kalpana Malani, primary caregiver of her mother.


“The Indian Caregiver’s Corner” :

This section is made in part, to explain theoretically the different aspects of Alzheimer’s Disease, the patients and caregivers have to face worldwide… like the impairment process, the different disorders: memory, language, organization… changes in personality and behavior…. But also, the impact of the pharmacological and non-pharmacological interventions like socialization, meditation, physical exercise, the caregiver’s role and difficulties encountered in India.

Readers are invited to enrich this section to make it an experience-based one, a resourceful section for other caregivers to find there helpful tips/ways to cope with the symptoms, the daily care activities and to face specific situations in their local setting, at home, outside, with family, doctors….


A Family Caregiver sharing her experience in Mumbai:

"What I am trying to tell is that I am unable to get an ordinary maid (untrained) in Mumbai. There is this huge ayah bureau set up (at least 15 to 20 of them) for patients so as soon as you mention that you want them to look after an elderly person these Rs. 270 per shift rate kicks in. All maids in Mumbai are aware of this so I feel that this is the main reason I cannot find one inspite of the fact that I was born and brought up in this city and have a wide circle of friends. It is not as if I have tried to think of a half day shift but my situation is thus.


My husband is 70 and a recovering cancer patient, 2 sons one in Chennai, one working at 9 hour job. I am working in my business from 11.30am to 8.30pm so with travel it means I am out of my home at 10.15 and come home at 9.15pm and work a full 6day week. You must appreciate that I need a full 8hours sleep and my husband cannot take my mum to the loo at night therefore I need a night shift too. My husband and I cook and clean in the morning as I cannot afford another maid for housework.

My mother is 80years old and was diagnosed with possible Fronto-Temporal Dementia- I say possible as they were unable to positively conclude that it was not Alzheimers. She is moving around, bathes and uses the toilet herself but needs constant supervision for this -eg she may forget how to wash herself - she has one picked up the faeces and flung it out of the window. Last month she had two epileptic seizures and fell down and needed to have stitches.

She has good days and bad days - on a bad day or night like two days ago she was awake and wanderingaround the house from 11pm to 6am- both the night maid and I were awake to make sure she did not fall. I was a wreck the next day but had to work so I wonder if people who don't have a dementia patient living with them have any clue about what we go through and when I hear about people putting their loved ones in homes I can empathize with them - it is very easy to sit on a high horse and tell people that they must look after the elderly- it's another ball game when you actually have to do it.

And forget about family and community chipping in - that is a utopian myth. My own son cringes if he sees that my mom has peed on the floor by mistake. I get a lot of token lip sympathy from family and friends about what a great job I'm doing but very little practical help. I am looking after my mum because I have a strong sense of duty plus I know that my parents sarificed a lot to see that their children were well educated and I had vowed to look after them.

I do get really pissed of on some days and wish things were different but realise that is not my mum's fault that she is like this. Sorry for the rant but this is my reality and I'm sure there are many like me struggling to come to grips with this. My sister lives in Bangalore and has given me great moral support and I can understand that she cannot be physically present".



Alzheimer's Disease in India :
Thank you so much Kalpana for sharing your experience with us on our Facebook group. I am sure the other Caregivers facing similar situations there would be very moved by seeing all your efforts in making your mother feel comfortable through the disease.
Indeed, each testimony is important for us because other Family Caregivers in India, may find there the support and relief they needed, benefit of your "advises and tips" and you may even have enlighten their pathway then.
So dear Members and Reader, thank you for bringing hope, by participating even if you don't have a "serious" problem/case but even just feelings/thoughts are worth to share. It is really helping us in raising awareness on this disease, to bring support and knowledge for Dementia Care Management in India.

Saturday, August 20, 2011

Comprehensive Geriatric Mental Health Service in Lucknow, INDIA.


Department of Geriatric Mental Health of CSM Univ completes 6 years.

"Lucknow, Aug 19 :Department of Geriatric Mental Health, devoted to the cause of elderly citizens as the first speciality department in Uttar Pradesh
under Chatrapati Shahuji Maharaj Medical (CSM) University here, will be celebrating its 6th foundation day tomorrow".

....

"The Department is providing indoor and outdoor services, Healthy Aging Clinic, Spiritual Healing Clinic, Dementia Clinic, Memory Clinic and Walk in Clinic, State of Art Electro Convulsive Therapy (which is best in India), Physiotherapy, EEG, ECG and Pathological Lab services are provided under one roof to avoid any kind of inconvenience to the elderly".

"The Department is also running 24 hour emergency services beside being involved in community outreach services in different parts of the city in collaboration with Help-age India".


Deduction for maintenance and medical treatment of persons suffering from neurological diseases.


The Hindu (extract), 2011. Online edition of India's National Newspaper Monday, Feb 28, 2011.

"Sec. 80DDB allows expenses on medical treatment for self or dependant up to an amount of Rs.40,000 or actual expenses whichever is less. 


The limit is Rs.60,000 for senior citizens. The eligibility is for the amount “actually paid” as reduced by any amount received from the insurer or employer. The diseases covered are listed under Rule 11DD.

Rule 11DD lists specified neurological diseases to be supported by a neurologist or urologist with prescribed qualifications recognised by Medical Council of India. Other ailments covered are malignant cancer, AIDS, chronic renal failure or hematological disorders being hemophilia and thalassaemia certified by a specialist. 


The certificate has to be filed in Form 10-I and has to accompany the return for the claim.The deduction is limited to what is actually paid or Rs.40,000-60,000 for treatment of these specified ailments only and that too subject to reduction of what is met by the employer or insurer.

If the reader has received from the insurer for such specified diseases more than Rs.60,000, there is no further deduction permissible under Sec. 80DDB. Mercifully any excess amount over and above Rs.60,000 received from the insurer is not taxable in law."

S. RAJARATNAM

IT exemption for individuals that are taking care of a dependent person with Dementia. Also under Section 80, DDB, Rule 11 DD; This gives some Tax rebate and need to have certificate from Govt Hospital Dean. 


It is useful if you pay your tax



Friday, August 19, 2011

Dementia cost in India and World Alzheimer's Day 2010 : some facts from ARDSI.



Some figures : 
‎"India's 60-plus brigade-often neglected in discussions about our young population-has been growing steadily. The group accounted for less than 5% of the population in 2001, but will make up 14% by 2050. In sheer numbers, projections from the latest 2011 Census pegged the 60-plus population at 100 million. "In 2026, they will account for over 174 million," said Dr Fauzdar Ram, director of the International Institute of Population Sciences."


21ST September is observed as World Alzheimer’s Day (WAD)
to unite people affected by Alzheimer’s and other dementias and to give carers and medical professionals worldwide the chance to share their stories and take part in a variety of activities in order to raise awareness among the public and key decision makers.


We at ARDSI have been encouraging observance of WAD by way of memory walks, cycle rally, press conferences, essay/drawing/photography features in Newspapers, Radio and TV and or for the last few years have been commemorating it as National Dementia Awareness Week.
It is also important to note the Dementia India Report that would brought out in 2010, which calls for a National Dementia Strategy and larger allocations for health and welfare ressoures to meet the growing challenges from this mind crippling illness.

Dementia India Report 2010 was the first such authenticated one ever undertaken in a developing country. 


With the India population at 1.21 billion, of which 75 million people are over sixty years, 3.7 millions affected. (Prevalence of 0.6% - 10.6% in rural areas and 0.9% to 7.5% in urban areas). The Cost of caring an individual is Rs. 43,000 anually and societal cost to care 3.7 million is Rs 14,700 Crores, which by 2030, people affected estimated as 7 million and the cost would increase three times.

Jubin Jose,

ARDSI.

Wednesday, August 17, 2011

"The Blue Mug" : an Indian Play on Memory Loss. The Hindu Kerala.

"The Blue Mug" :


"Life and memories

Shipra says during the course of The Blue Mug: “Life without memories is nothing at all”. If Blue Mug were to have a tagline, this could be it. On one hand you have Rajat, Sheeba, Vinay and Munish treating you to flashbacks of their respective lives; on the other, Shipra and Ranvir playing out the story of a person with memory stuck in 1983. The script is simplicity itself, there is nothing you might not have encountered yourself. This connecting factor endears the play to you, or maybe the presentation, the surreal picture painted on stage with one person talking under a spotlight while the others do random stuff in the backdrop. I won’t pretend to have understood all the abstract elements though. Lovely acting – highlight being Vinay and Sheeba. Excellent choice of music; the Hemant-da song, the retro jazz piece. Kudos to The Hindu for bringing this initiative to Kerala.

Vipin S Nair, Elamakkara, Kochi"

Read more at : The Hindu : Life & Style / Metroplus : The Blue Mug memories


"The role of socialization in dementia care in India and Western countries" on “The Indian Caregiver’s Corner”

“The Indian Caregiver’s Corner” :

This section is made to explain theoretically the different aspects of Alzheimer’s Disease, the patients and caregivers have to face worldwide… like the impairment process, the different disorders: memory, language, organization… changes in personality and behavior…. But also, the impact of the pharmacological and non-pharmacological interventions like socialization, meditation, physical exercise, the caregiver’s role and difficulties encountered in India.

Readers are invited to enrich this section to make it an experience-based one, a resourceful section for other caregivers to find there helpful tips/ways to cope with the symptoms, the daily care activities and to face specific situations in their local setting, at home, outside, with family, doctors….



The role of socialization in dementia care.

Socialization mobilizes the remaining cognitive abilities through interactions/relationships-building supported by the pleasure it gives to interact with someone non-judgmental as if, for a while, everything came back to “normal”. This interactive situation makes/encourages the person suffering from AD to use his/her speech abilities, recollect and share his/her memories, handle a conversation, follow the thread as much as possible, remain active within the interaction, behave properly, caring for his/her personal appearance, still feel as a subject/human being adjusted to a situation….all that in a very friendly and supportive adapted environment. 


These few things may seem to us, very common actions to undertake but do require in fact, the involvement of specifics intellectual abilities/functions themselves related to different regions of the brain. Then, a supposed to be very “easy” task to perform requires in real, much more (but sadly often unsuccessful) efforts from those affected by this neuro-degenerative disease exhausting their energy and their caregivers.

Socialization provides an interactive and stress-free environment for the patient and his/her caregiver without any objective of performing a task or exercise but naturally activating the intellectual/cognitive abilities/functions through a relational framework.

So socialization should be seen as a social stimulation activity, which barely need to be designed to make the person uses his/her remaining abilities. Actually, the aim of this social stimulation experience is mainly about bringing social support and emotional comfort to the patient through the re-use of these abilities. This re-building of a social bond lost sometimes a long time ago, is often appreciated by the patients. Of course, the previous personality of the patient suffering from AD does matter. If he/she nurtured the tendency of being alone or away from the crowd, this personality trait may increase or in some cases, totally turn into the opposite. In addition, anxiety, non-recognition of faces and places and/or a sense of shame may appear and increase social exclusion. 


However, studies indicate that good socialization experiences decrease over time stress, depression, anxiety and other behavioral disorders from the patient. On the contrary, repeated bad socialization experiences may be harmful for people with dementia. Indeed, stressful, they disrupt the patients and raise the anxiety and agitation. As to the absence of social stimulation, it brings over time a feeling of loneliness and abandon with a negative impact on their already declining condition.

In western countries, adapted/designed and repeated social stimulation activities appeared to be beneficial through the experience of Dementia Day Care Centers for patients undergoing early to moderate stages of the disease. Indeed, though studies showed that it doesn’t reverse at all the disease/cognitive decline, researchers found that the daily participation to a DCC had a positive impact on the quality of life of the patients through their mood and behavioral improvement. 


According to some researchers, these designed activities would also allow the cognitive/brain functions to remain actives through their repeated use. Such designed stimulations would then allow the brain to draw in its “cognitive reserve” and may even activate, the “cerebral plasticity”. Anyway, for a short period of time, it breaks the feeling of being inadapted, the feeling of loneliness and agitation raised by situations of high tension and misunderstanding settled over time within families.

However, if the separation with the primary caregiver is not possible even for a short time and/or the access to a DCC remain impossible, socialization appeared to be the easiest intervention to be implemented by carers/families in their daily life, at home or outside. Indeed, family/caregivers may be trained to valorize/value every social interaction through communication skills, noticing and building more pleasant activities fitting the patient habits, personality and remaining abilities. When applied properly and combined with the proper medical treatments, anxiety and agitation may decrease and the patient may feel more comfortable within his own environment.

Habitually, the Indian cultural setting would provide older persons with numerous social contacts through the joint family system and/or strong community bonds. But today, the Indian society is changing. If taking care of an elderly person suffering from a neurodegenerative disease has always been demanding; today in the Indian emerging economy, family caregivers are often overwhelmed. This is due to the usually low level of awareness regarding Dementia, the time and energy required today in busy schedules for its care management, and, in addition, the absence of support and understanding from one’s own environment. So, if western countries have yet undergone numerous studies to follow the evolution of AD and build accordingly non-pharmacological interventions and structures for the specific needs of these patients; including AD in their public health policies; India is nowadays undergoing a transition. Indeed, dementia care management is here only at the beginning.

As the India Dementia Report 2010 edited by the ARDSI has well mentioned, there are only a few dementia day care centers throughout all the territory and even less specialized respite centers. No doubt that in the future, to support/help the Indian families to cope with their daily caregiving activities and meet the needs of around 3.7millions patients diagnosed with AD; the professional carers involved in the geriatric and gerontology field there, would have to get together to face the increasingly high expectations and so, for the implementation of more of such specialized structures.



Ms Hendi LINGIAH
Clinical Psychologist in gerontology.
15/08/2011.