"Memory Cafés" to be implemented in India in 2012? from an expected pledge to a reality soon?

"Memory Café model to be set up in India", Cornish Guardian, Friday, March 23, 2012.

(excerpt)

THE SUCCESS of a dementia support group in Lostwithiel (UK) has inspired an expert in Alzheimer's to set up the same centres in India. 
....


(What's a Memory Café) : example of Lostwithiel Memory café (UK):

Set up two years ago this month, the group meet every two weeks at the community centre in the town between 2pm and 4pm.

At 2.45pm the session splits into two and registered nurse Laura Walker spends time with those with memory loss, facilitating cognitive stimulation activities, while dementia care trainer Jo Hague provides support and a meeting place for the carers.

It has gone from strength to strength, with just two guests attending at the outset it now welcomes an average of 20 people per session.

Mrs Hague, founder, said after witnessing the Lostwithiel community model on Monday, Dr Jacob Roy, chairman of Alzheimer's Disease International, hopes to open cafés in Calcutta, Cochin and Deli with her help.

"I am going to Deli to help train people and do the workshops in six to nine months," she said.

"It will help millions over there, it is horrendous."

.....

"This is very valuable to the person with memory loss as it benefits quality of life and thought processes but most importantly gives the person a feeling of belonging, confidence and self-worth." 

Dr Roy said: "It is so important that we continue to raise awareness of dementia. By having memory cafés people are brought together to share stories and have fun. All of this contributes to a better quality of life." 

Read full article at : http://www.thisiscornwall.co.uk/Memory-Caf-eacute-model-set-India/story-15577400-detail/story.html

Dr Jacob Roy of ARDSI India elected as Chairman on Alzheimer's Disease International 2012.

Alzheimer's Disease International Elected Board:

Governance

Alzheimer's Disease International has a council made up of representatives from each full member association. The council meets once a year during our annual international conference.

The council elects a board of people from around the world, led by our chairman, Dr Daisy Acosta. Our president is Princess Yasmin Aga Khan, daughter of Rita Hayworth who had Alzheimer's disease. A full list of our elected board members is below.

ADI also has a medical and scientific advisory panel (known as MSAP), whose role is to provide expert advice when necessary, and also to act as international ambassadors for ADI. More details and a list of MSAP members are available.

Dr Jacob Roy

Elected board

• Princess Yasmin Aga Khan, USA, President
• Dr Jacob Roy, India, Chairman
• Mrs Wendy Fleming, New Zealand, Vice Chairman
• Mr Martin Else, UK, Treasurer
• Prof Bengt Winblad, Sweden, Chairman of MSAP
• Mr Dale Goldhawk, Canada
• Ms Lynda Hogg, Scotland
• Mr Markus Löfström, Finland
• Ms Carolyn Popham, UK
• Dr Yasmin Raashid, Pakistan
• Mr Lonnie Wollin, USA
• Dr Robert Yeoh, Australia

Honorary vice presidents

• Mr Jerome Stone, USA
• Mr Brian Moss, Australia
• Dr Nori Graham, UK
• Prof Henry Brodaty, Australia
• Dr Daisy Acosta, Dominican Republic

Interview of Dr Jacob Roy for the Hindu Online edition of India's National Newspaper, 2011 at: http://alzheimerdiseaseinindia.blogspot.fr/2011/06/hindu-dr-jacob-roy-interview-with.html

Portrait of Dr Jacob Roy: http://alzheimerdiseaseinindia.blogspot.fr/2011/06/portrait-of-dr-jacob-roy-chairman-of.html

ARDSI aims and activities: http://alzheimerdiseaseinindia.blogspot.fr/2007/03/alzheimers-and-related-disorders_05.html

4th Alzheimer's Award winners announced: India and Australia awarded. ADI 2012.

On 19 March 2012 - The winners of the fourth Fondation Médéric Alzheimer (France) and Alzheimer's Disease International (London) Alzheimer's Award for psychosocial interventions have been announced. 

Two prizes were awarded, the first for the best evidence-based intervention with a prize of €18,000 and the second, worth €7,000, for the most promising intervention.

Prof Lynn Chenoweth from Australia was awarded the prize for best evidence-based psychosocial intervention for her project, PerCEN : Person-centred environment and care for residents with dementia: a cost effective way of improving quality of life and quality of care?

The award for most promising award was presented to Dr Radha S Murthy from India for her intervention, The effect of culture based comprehensive psychosocial care program on outcomes in residential patients with dementia-An Indigenous Model.

Prof Chenoweth and Dr Murthy were presented with their awards during the 27th International Conference of Alzheimer's Disease International in London, UK in March 2012.

Find out more about the Alzheimer's Disease International at: http://www.alz.co.uk/global-solutions

Missing Senior Citizen Alert Blog: how to start finding missing senior citizens? by Silver Innings Foundation.

How to Find Missing Senior Citizens : 


If your elders or parents or friends who are 60 yrs & above goes missing, we request you to first file police complaint and send us the copy of police complaint , their Passport size photograph with other details and contact number at silverinnings@gmail.com .

You need to look for missing people at places such as Old Age Homes , Shelter Homes, Hospitals, Railway Stations, Bus Stations, Religious places , Mental asylum , Clinics , Morgues , Foot paths , Parks/Gardens etc........

People who are 60yrs and above might be suffering from Alzheimer's / Dementia, a memory loss diseases which makes it difficult but not impossible to find them. 


If any of them is suffering from such disease then request you to take precaution like - keep with them ID card , Telephone Diary , A name written wrist band etc .... you also need to have recent photo's of them , inform your relatives , friends and others.


Link: http://missingseniorcitizenalert.blogspot.in/2011/11/help-find-missing-senior-citizens.html 

‎Resources for dementia care volunteers in India now available online, by Swapna Kishore, 2012.

‎"Resources for dementia care volunteers now available online", by Swapna Kishore from SwapnaWrites Blog, March 17, 2012. 

A simple and structured way for dementia care volunteers in India to access relevant documents and resources created by me without their needing to contact me.. ....

..."This section on my website contains my views, opinions, documents. I am not an expert in any way, not even someone with an NGO or a trust or any qualifications as a volunteer. 

I am just a caregiver who developed a commitment to help other caregivers. I am just someone trying to do whatever I can, and share whatever I think and do, as honestly as I dare to. 

I undertake no implicit or explicit guarantees that the documents I am sharing are relevant or will help; I am creating this section because I strongly felt I need a space for such document sharing. How others use them is for them to see. Of course, I welcome feedback.

Take, for example, the setting up of support groups for caregivers. We so desperately need such groups. Around the middle of last year, I had drafted a document for creating caregiver support groups for a volunteer body, and then, a few months later, amended that to fit “dementia” caregiver groups for another person keen to set up a group. 

I know of at least three other persons who have wondered whether they can set up a support group, and what would be involved. There may be many more persons thinking of this. Now, the draft document I have created is available for anyone to read and use as fit, send me feedback, whatever. If someone sends me more ideas, I’ll amend the draft as suitable.

The section is intended for volunteers who want to equip themselves to understand and help dementia caregivers in India, and includes discussions on the status of dementia care in India and the impact of culture and context. Currently, it contains the following pages (this may change).

• Resources for volunteers helping caregivers
  • Introduction: Becoming a well-informed volunteer and selecting where to help
  • The Cultural Context of India and its Impact on Dementia Care
  • Applying available dementia/ caregiving material to the Indian context
  • Available: Explanation of dementia home care in India
  • Available: Dementia Awareness Presentation
  • Available: Draft document on setting up support groups
  • Ideas: Trained attendants and respite care for dementia
  • Ideas: Mobilizing children and youth for dementia
  • Ideas: Improving dementia awareness and sensitivity to caregivers amongst healthcare professionals

Pleave have a look or share the link with anyone who you think may be interested. Thank you!"

Link: http://swapnawrites.wordpress.com/2012/03/17/making-resources-for-dementia-care-volunteers-available-online/

"Voices of Dementia Patients in India", would it ever happen? by Hendi Lingiah.

We have around 5 persons affected by a cognitive impairement in our group Alzheimer's Disease in India and all from abroad. 


They are all involved through their various actions on the Net, their local environnement, conferences worldwide in speaking out about their life with "dementia", the importance of raising awareness to improve the quality of life of patients and their families, build knowledge and support, proper structures and trainings, start considering the patients as stakeholders in this journey, on the importance of research, the hope for medication...

For more disclosure, there are also the Memory People facebook group some of us are also members of, a closed one gathering a lot of patients and caregivers mainly based in the USA but which is very open to all persons concerned as Alzheimer's Disease and related disorders know no boundaries.

‎"Voices of Dementia patients in India" would be very welcome, very helpful to raise awareness. Obviously by explaining their perspective they would surely have some more visibility and then contribute to the changes in the mindset toward patients: they have opinions regarding their disease and disorders, care giving and could be involved in their daily care and decision-process about their own life path...supported by their families/caregivers of course. 

It is far from being a paternalist approach of the care but visibility is not always wished by people maybe according to the level of social pressure they may have to face in certain societies where "ignorance" about some diseases is still strong as the stigma regarding mental health.

How would families and doctors react if patients in India start claiming for more informations, better care and support in their autonomy? Would it be something completely new in the country? would it be totally out of the indian culture? would it increase the social pressure against those who dare claiming or would it help in changing practices progressively?

Hendi Lingiah,
Clinical psychologist and administrator of Alzheimer's Disease in India.

‎"Late Stage and End-of-life Care, CAREGIVING IN THE FINAL STAGES OF LIFE"

‎"Late Stage and End-of-life Care, CAREGIVING IN THE FINAL STAGES OF LIFE" by Melissa Wayne, M.A., Lawrence Robinson and Jeanne Segal Ph.D, February 2012:

...Caregiving in the final stages of Alzheimer’s disease:
"At this stage in the progression of Alzheimer’s disease, a patient can no longer communicate directly, is totally dependent for all personal care, and is generally confined to bed. 


Unable to recognize once cherished people and objects, or to verbally express basic requirements, the person with Alzheimer’s completely depends on sensitive caregivers to advocate, connect, and attend to her needs."

..."Moving on after final stage care: 
From the moment a loved one is diagnosed with a terminal illness, a caregiver’s life is never the same. It can, however, be happy, fulfilling, and healthy again. Take time to reflect on your loved one’s life and remember the quality time that you were able to share together."....


Link:http://helpguide.org/elder/alzheimers_disease_dementia_caring_final_stage.htm#.T13oWWz2GVM.facebook

VIDEO from India: Life after a spinal chord injury, any initiative on Alzheimer's Disease and Related Disorders?

Sharing this 10 min video by Sanchit Sharma, from the occupational therapy department Nair Hospital, Mumbai, about life after a spinal chord injury and introducing Sunita Sancheti in her daily life and various involvement for quality of life through "disability": 


ANOTHER GOOD WAY to RAISE AWARENESS on INDEPENDANT LIVING and QUALITY OF LIFE...any initiative on Alzheimer's Disease and Related Disorders?

"This Is My Life Memory Book" in Alzheimer's Disease Daily Care.

 The role of "This is My Life Memory Book" in "Dementia care": 


"Knowing a person's story - former occupation, likes, places traveled, etc. - can be difficult for staff to incorporate into the care of clients with dementia. But we know that an individualized approach can be the key for great dementia care. 


What ways have you found to do this with your staff and clients? See the link, if you would like some more tips on how to do this and the benefits that can be afforded."

Situation of Older Women in India, Agewell Foundation Report 2012.

...."Medical problems: Due to negligence, lack of awareness, financial support and religious mindset of women, older women often have to face acute health problems. 


Since most of the older women are living within the four walls and barely come out in open public places, most of their health problems remain unnoticed. 


Their family ignores these – saying that in old age diseases are common. Older women living alone could not share their pain, since there is no one to lend her patient hearing. 

Above all, many times, due to lack of health awareness older women themselves ignore symptoms of diseases. Most of them believe more in divine powers instead of medical science. 


In India, still there are a few religious sects, that don’t allow its followers to take particular medicines.".....

Pdf available on request at hendi.lingiah@gmail.com or at the following link: 


http://www.globalaging.org/elderrights/world/2012/older%20women%20in%20india.pdf

‎"Human costs of concealing a dementia diagnosis", by Swapna Kishore (excerpts), 2012.

“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….

"Human costs of concealing a dementia diagnosis", Swapna Kishore, Swapna Writes, March 4, 2012. 

....."Doctors sometimes debate on whether or not they should inform patients / their families that the patient has an irreversible dementia. Some feel that since there is no cure for dementia there is no point in communicating the diagnosis (they feel it would be disheartening, or pointless). Others are confused on what is right (to tell or not tell).

Here’s a fact worth considering: knowing a diagnosis doesn’t just enable a patient to get medical treatment; it also helps everyone concerned to see the patient’s behaviour and deterioration in the proper context and make changes to improve the overall quality of life.

The fact is that the patient may be worried about what is happening to his/ her memory, abilities, emotions; the patient may be scared, isolated, angry, unable to cope.

The fact is that the behaviour of dementia patients, if not understood, often also bewilders and hurts people around the patient. Families undergo emotional pain and conflict."....

.....‎"Regarding dementia: 

maybe if many patients and families describe how knowing the diagnosis improved their quality of life significantly (even though dementia cannot be cured), more doctors will appreciate that patients and families are stakeholders who need to know what is happening.

They may evolve appropriate ways to convey the diagnosis and related information, discuss these, refine them. 

And maybe even create, as a community, suitable guidance that all doctors will conform to. Definitely the patients and famililes would be better off for it." 

Link: http://swapnawrites.wordpress.com/2012/03/04/human-costs-of-concealing-a-dementia-diagnosis/

‎