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Panelists of Supporting the Informal Caregiver: Implications for an Aging Society and GHDonline staff

Supporting the Informal Caregiver: Implications for an Aging Society

Posted: 09 Jun, 2016   Recommendations: 26   Replies: 115

In 2010, there were more than seven potential informal caregivers for every person over the age of 80 in the United States. This ratio is falling steadily as the population of older adults grows: by 2030, there will be only four potential caregivers for every adult over 80 (AARP).

Despite the growing demand for informal care, there is little evidence on how best to support informal caregivers’ needs. The resources that do exist are limited and often difficult to find and understand. Furthermore, caregivers struggle to determine which resources, agencies, and services they can trust.

To help address this gap, GHDonline is hosting an Expert Panel that will explore the needs of informal caregivers and various strategies for meeting them. Through this discussion, we will address the unmet needs of those providing care for elderly family members at home, the role of providers in supporting these informal caregivers, and the technologies and programs available to help caregivers increase the autonomy, safety, and quality of life of those in their care.

Join us June 13–20 for this virtual panel discussion on GHDonline. Each day of the panel will feature a different panelist and case highlighting barriers to and potential strategies for meeting the needs of aging adults, their caregivers, and providers.

We are delighted to welcome the following panelists:

Monday: Opening Remarks, the Informal Caregiver Landscape and the “Caregiver Cliff”
- Laura Frain, MD, MPH, Geriatrician, Brigham and Women's Hospital
- Catherine Fabrizi, MSN, APRN-BC, Director of Nursing & Nurse Case Manager, Geriatrics Section, Boston Medical Center
- Susan Reinhard, RN, PhD, FAAN, Senior Vice President and Director, AARP Public Policy Institute; Chief Strategist, Center to Champion Nursing in America

Tuesday: Project ECHO-AGE, ECHO-Care Transitions, and Technology
- Eddy Ang, MD, Associate Director, Project ECHO-AGE, Beth Israel Deaconess Medical Center; Instructor in Medicine, Harvard Medical School
- Melissa L.P. Mattison, MD, SFHM, FACP, Chief, Hospital Medicine Unit, Massachusetts General Hospital; co-founder, Project ECHO-AGE and ECHO-Care Transitions

Wednesday: The Economic Burden on Informal Caregivers
- Lisa D’Ambrosio, PhD, Research Scientist, MIT AgeLab

Thursday: The Importance of Patient and Caregiver Advocacy and Empowerment
- Thomas Bauer, MBA, RT(R), Senior Director, Patient and Family Education, Johns Hopkins Medicine

Friday: Making Meaning and Creating Value as we Age
- Rachel Broudy, MD, Medical Director, Mercy LIFE, a Program of All-inclusive Care for the Elderly (PACE)
- Felicity Aulino, PhD, MPH, Five-College Assistant Professor, Department of Anthropology, University of Massachusetts Amherst

Monday: Closing Remarks, Reflections and Future Considerations
- Len Fishman, JD, Director, Gerontology Institute, McCormack Graduate School of Policy and Global Studies, University of Massachusetts Boston

We look forward to a rich discussion next week. Please join the conversation and share your questions or comments!

Replies

 

Arvind Mathur Replied at 3:13 PM, 9 Jun 2016

Globally there is a need to support informal caregivers. Training in various care giving skills and awareness about their own health care can improve the quality of care and overall health of care recipient. Innovating locally acceptable methods and use of technology is essential to achieve this goal. There is a need to highlight this under recognized area.
I look forward to useful discussion.

Isabel Cristina Lobos Medina Replied at 3:30 PM, 9 Jun 2016

Es un tema muy interesante para la población en general, ya que cada vez, existen más adultos mayores con diversas necesidades que es necesario conocer, atender y por otro lado, "no morir en el intento".
Yo tengo a mi madre de 90 años muy independiente todavía, pero tiemblo cuando pienso en que esto no será así siempre...quiero para ella que sus años por venir sean muy satisfactorios y felices...y para mí, una experiencia positiva y llevadera. Será interesante compartir en este foro

Madhuri Gandikota Replied at 5:54 PM, 9 Jun 2016

Thanks Rebecca.

Taking care of our loved sick and elderly is a very important
responsibility.
Often the burden of the caregiver is neglected.

Look forward for the perspectives.

Thanks again

Believe Dhliwayo Replied at 6:32 PM, 9 Jun 2016

Thanks Rebbeca looking forward to these fruitful rich dosxussions

Juan Tomaylla Replied at 7:12 PM, 9 Jun 2016

Thanks Rebecca, very interested about how mobile technology and Internet of Things can support these tasks?

Judith Pinkham Replied at 7:48 PM, 9 Jun 2016

Thanks much!
More help to the informal caregivers would go a long way globally.
I look forward to the discussions.

Francisco Sevilla Replied at 7:52 PM, 9 Jun 2016

Dear colleagues.
I'm a doctor, senior fellow at the IRH, School of Medicine, Georgetown University. I am Ecuadorian, I live in Ecuador. I have 66 years, I am retired. Now I attend to my mother 96 years full time. She has experienced the best medical care in nursing homes, geriatric centers and clinics terminally ill patients. And there has been satisfactory attention because there is no home or family, medical staff works hard but the hospital system cannot do more than comply with regulations and protocols. So I decided to attend to with the help of an informal caregiver who gives affection and extreme care. In three months my mother has improved her overall health. No longer take very strong medicines. Listen to music, talking on the phone and receive visits. Eat very healthy and in small periods. I'm sure you will have a very happy death. The same did with my father who was fired with his arm raised before dying. Sure I'll participate. Congratulations.

Zakiuddin Ahmed Replied at 8:15 PM, 9 Jun 2016

I would be interested to discuss the role of technology in bridging this increasing gap through TeleHome Care & Connected Health Model with Internet of Things / Internet of Me

Saroj Jayasinghe Replied at 8:41 PM, 9 Jun 2016

I would like to join. Sri Lanka's ageing population is largely supported by family members and friends who perform the function of 'informal carers'. Strengthening their skills would be the more sustainable option. There are initiatives to develop a cadre of better trained persons who would complement the informal workforce.

Dr. Ankush Shinde Replied at 10:42 PM, 9 Jun 2016

Thanks very much for invite. The need of the hour is how we can train care givers to take care of elders. Technology can play crucial role in term's of training and communication.

Edward Ryter Replied at 11:52 PM, 9 Jun 2016

Thank you for inviting me to participate in this valuable, timely discussion.

I look forward to hearing Dr. Rachel Broudy's thoughts. I also work for Mercy Medical Center in Western, Mass and remember when she was hired and the PACE program was launched.

Dr. Ed Ryter, Internal Medicine, Mercy Medical Group, Ludlow, Mass.

Maxwell Madzikanga Replied at 3:22 AM, 10 Jun 2016

When three of my family members passed away in Zimbabwe a couple of years ago, the burden of caring for them was left on my mother. It was a very difficult challenge-limited support from statutory organisations, invisibility of the voluntary sector organisations, stigma and discussion, as well as convoluted community support and death of community based carer support mechanisms. Without any training or support, she however was able to provide much needed "excellent" end of life support to my relatives. No technologies, no training and very limited psychosocial support and no aids to support her Carer journey. She worked 24 hours a day non-stop. I am sure, her experience represented some of the challenges carers faced then. Am sure things have changed in Zimbababwe with regard to how informal Carers are supported emotionally, physically and even spiritually - Will join in the discussion!

Rakesh Biswas MD Replied at 3:43 AM, 10 Jun 2016

Thanks Rebecca, I am sharing a presentation (resource) on 'informal healthcare' from an Indian generalist's perspective: that may be of interest to the panelists and audience. Once you click on the link to slide 1, one can keep clicking on the individual slide links to view the entire presentation.

regards,

rb
http://www.igi-global.com/affiliate/rakesh-biswas/115818
http://promotions.bmj.com/jnl/bmj-case-reports-student-electives-2/

Attached resource:

Ibrahim Ajami Replied at 4:40 AM, 10 Jun 2016

blockquote, div.yahoo_quoted { margin-left: 0 !important; border-left:1px #715FFA solid !important; padding-left:1ex !important; background-color:white !important; } Dear Rebecca,
I am ever so glad for this. Currently, I'm trying to prepare an elevator pitch I could sell to the minister of health in my country and this topic just provided a huge boost. Thank you and I can't wait to be a part.


Sent from Yahoo Mail for iPhone

Donald Kasongi Replied at 4:41 AM, 10 Jun 2016

Thanks Rebecca for initiating this discussion.It is a reality that despite improvements in strategies for elderly care in formal settings,the world is increasingly lagging behind in addressing competence of service delivery in informal care.

Menyanga Abu Replied at 6:41 AM, 10 Jun 2016

Rebecca, thanks for this all important point for discussion. In my own part of the world ie Nigeria, the aged ones are taken care of by the individual family. This has not been easy for the families in the face of the economic crisis witnessed in recent years. Everyone goes out to look for what to eat leaving the aged ones to their faith. What is the logical frame work and modality for establishing such caregiver outfit in my country whether formal or informal?
Menyanga Abu.

*** This message has been sent using GIONEE P2 ***

"Rebecca Weintraub, MD via GHDonline" <> wrote:

Md Saiful Islam Replied at 6:58 AM, 10 Jun 2016

Family caregivers play an important role in Bangladesh. The following article shows the role of family caregivers in public tertiary care hospitals.http://www.ncbi.nlm.nih.gov/pubmed/24406254

Dr. Uzodinma Adirieje Replied at 7:25 AM, 10 Jun 2016

My aging mother lost her life probably as a result of her caring for my aged father. Who knows?
I'll join.
Uzo' Dr. Uzodinma Adirieje is an international consultant, resource person/facilitator, projects/programs manager, community leader, negotiator, advocate and author/writer/columnist based in Nigeria; and constantly driven by a raw passion for success and wholesome commitment to Health, HIV/AIDS, TB, Nutrition, Environment, Peace-building and Development. He’s a civil society/private-sector activist, working with Governments, Senate and House of Representatives Health and HIV/AIDS Committees, Federal and State Ministries of Health, Departments and Agencies (MDAs) and line MDAs, Multi-lateral and United Nations Agencies, Development Partners, local/international NGOs/CBOs/FBOs at National, State, Local Government and Community/Ward levels, and managing donor funds. A World Bank-trained Health Economist, Health Systems and Organizational Development specialist, his major subjects of interest include the MDGs, Primary Health Care; conferences/meetings/workshops, blindness and nutritional problems; Health Sector Reforms; Public-Private Partnerships (PPP), Health Promotion, Healthcare Financing/Insurance and Peace-building. He has requisite knowledge and demonstrated capabilities/capacities for Programs/Projects and Organizational management and administration, Excellent writing and public speaking skills, Research/Evidence-generation, Partnerships building/coordination and management, Advocacy, social mobilisation and communication, Capacity-building/training and facilitation, Outreaches and community-based interventions. He publishes in his blog at http://uzodinma-adirieje.blogspot.com, e-forums, online, journals and newspapers, and consults for Federal Ministry of Health, UNAIDS, UNDP, ILO, Unicef, Global Fund’s Country Coordinating Mechanism, National Primary Health Care development Agency and National Agency for the Control of HIV/AIDS. He’s CEO of Health Systems & Projects Consultants Ltd; National Coordinator of Coalition on Vaccines and Immunisations for All Nigerians; and Executive Director of Afrihealth Optonet Association.

Believe Dhliwayo Replied at 9:11 AM, 10 Jun 2016

Would be interested in getting to know other aged care models out there to
inform health care policy in Canada that will enhance care for aged
population which is increasing

Prof.Dr.Matiur Rahman Replied at 9:50 AM, 10 Jun 2016

Great initiative it's our moral obligation to take care of our elders and all sorts of care should be extended which is ethical and evidence baed.

Mukesh Paudel Replied at 9:56 AM, 10 Jun 2016

I am looking forward to the discussion. Informal care givers are important
pillars of our society

danetsye samallo Replied at 10:20 AM, 10 Jun 2016

thanks for me to join discusion...We need a better place when the people should understand the geriatric want they would be know themself if another person and with the right place understand what they want.

Jossy Onwude, MD Replied at 10:31 AM, 10 Jun 2016

Hello Rebecca,
just incase I dont come online on the said date, here is my question: how has platform like care.com and telemedicine platforms changed caregiving?

regards

MOISES FARAON CHEN CRUZ Replied at 12:12 PM, 10 Jun 2016

EXCELENTE TEMA.... TENGO A MIS PADRES Y MIS SUEGROS QUE TAMBIEN ESTAN EN
LOS 90 AÑOS SI HAY PREOCUPACION EN SUS CUIDADOS.

Maria Hondras Replied at 2:38 PM, 10 Jun 2016

Hello —

Perhaps I missed the information about the time of day (13-20 June) each panel discussion will air. Can you help?

Thank you,
Maria

Maria Hondras, DC, MPH, PhD
Mobile: +1.563.340.9155
Skype name: maria.hondras
PubMed citations<http://www.ncbi.nlm.nih.gov/sites/myncbi/18uO-y5Ek5O5I/bibliograpah...

Isabelle Celentano Replied at 3:54 PM, 10 Jun 2016

Dear all,

We are thrilled to see so much enthusiasm about this important topic! I’ve attached some helpful resources below, but invite all of you to share caregiving resources that pertain to your local context.

There is no set time for the Expert Panel–the discussion will happen continuously throughout the week, so please participate at your convenience.

As a reminder, you will receive one email per day with a summary of all replies in the panel. For a more interactive experience, we recommend participating directly on our site, GHDonline.org, or changing your email settings to “Per-Post” for real-time updates on the discussion.

You can change your email settings here: http://ghdonline.org/account/email-settings/

Best,
Isabelle

Attached resources:

Linda McCreary Replied at 4:50 PM, 10 Jun 2016

I looked high and low and didn't find the times of these presentations. Thanks,
Linda

Linda McCreary, PhD, RN, FAAN
Clinical Assistant Professor, Department of Health Systems Science

Isabelle Celentano Replied at 5:04 PM, 10 Jun 2016

Hi Linda,

There is no set time for the Expert Panel, and panelists will be posting on their area of expertise throughout each day. Feel free to post questions or respond at your convenience throughout the week!

-Isabelle

Linda McCreary Replied at 5:32 PM, 10 Jun 2016

Thanks for the explanation!

Ioana Popescu Replied at 6:02 PM, 10 Jun 2016

Will the key points and resources shared each day be summarized or flagged (e.g. recommend) for those who can't attend? I imagine there will be lots. Thank you!

Abubakar Danlami Balarabe Replied at 6:05 PM, 10 Jun 2016

Thank you for this timely topic, I will participate.

Mukesh Paudel Replied at 7:49 PM, 10 Jun 2016

I am looking forward to the discussion. Informal care givers are important
pillars of our society

sarabeth friedman Replied at 8:39 PM, 10 Jun 2016

I'd like to add my 2 cents about the aging experience in the U.S. My knowledge comes from having been a nurse with a Hospice organization and mostly from experience caring for my own parents.
Like so much of our health care it sorts out according to economics. The wealthier Americans can access 'ideal' care in a safe environment. Those less fortunate financially are often left with lesser quality care. Every American is entitled to a 'Hospice benefit '. That means that they can access hospice care for no charge either in their own home or in a facility. This is wonderful. As always, however, the devil is in the details. If a family chooses home hospice care there are many hours to still pay for a home health aide assuming the patient needs 24/7 care. There are agencies to provide this. The going rate for the family is $20 to $25 per hour. The aide is often paid less than $10 per hour. So obviously these agencies are making a large profit. Interestingly enough ( but not surprising ) many of these aides come from other countries. It is stable work for them and they often come from a culture that values and respects the aging process. In some cities a network of caregivers has formed, all from one country, such as the Irish network in Boston, the Polish network in New Haven, etc. These are mostly women and do not work for an agency so they obviously earn more money. We have a huge gap in our health care system which is becoming better known now that the 'boomers' are aging! We do not educate, train and pay health aides at a rate that keeps quality people in this role. They are not recognized or appreciated. I, for one, would like to see this change. They are often the ones that can make the aging and dying process more humane. We need to compensate them for that.

Paul Nelson Replied at 8:55 PM, 10 Jun 2016

Rebecca,

Another "Caring Relationship" to explore. What better forum to explore the cultural and ecological conditions affecting the social choices facing families at this time in history!

Paul

Carrie Barth Replied at 10:58 PM, 10 Jun 2016

My husband and I have a 28 year old son who became disabled from a vaccine and other health complications. We provide 24/7 care so he won't have to go into a nursing home.

Prof.Dr.Matiur Rahman Replied at 12:18 AM, 11 Jun 2016

Great Panel.I will certainly participate to learn

Belquis Nawabi Replied at 12:21 AM, 11 Jun 2016

Thank you the topic was so helpful.

Belquis Nawabi Replied at 12:24 AM, 11 Jun 2016

Dear Rebecca:
Thank you for sharing this wonderful opportunity. I will be following you all.

Thank you once again .

Belquis Nawabi Replied at 12:27 AM, 11 Jun 2016

Dear Rebecca:
Informal caregivers in Afghanistan are called CHWs ( Community Health Workers), that are mostly volunteers with low education level. These people are mostly involved in providing primary health care such as immunization, family planning and so on.

Thank you once again

Belquis

Gary Parkes Replied at 2:58 AM, 11 Jun 2016

In the West the increase in life expectancy and reduced birth rate is leading to a reduced ability for families to care for their own elderly. Carers have other challenges, they may be working full time or indeed older and have serious health needs themselves. The role of the State is variable and inconsistent. As far as I know, remote monitoring Technology has not been proved to help but has massive potential. However technology is no substitute for personal contact. I look forward to the discussion

Sana Gulraiz Replied at 11:26 AM, 11 Jun 2016

when a caregiver develops burnout, there is often no one to care for the caregiver. Not sleeping for many hours, coping with job and family at the same time, all of this adds up to the burden. The informal caregiver needs State support/some job relaxation because the rising elderly population is a reality and we have to face it.

Steve Kyota Replied at 1:52 PM, 11 Jun 2016

Thanks!
We will join.
Steve

Mieke Visser Replied at 11:12 PM, 11 Jun 2016

I would like to join the discussions from the Rwandan perspective where we train medical students in social and community medicine.



Mieke Visser, MD, MPH
Discipline of Primary Health Care, (former Family and Community Medicine
Department)
University of Rwanda
Partners in Health/ Inshuti mu Buzima
Rwinkwavu Hospital

Shaikha Al Ali Replied at 2:14 AM, 12 Jun 2016

Dear Dr. Rebecca:

Thank you for GHD online link and I was reading the group discussion and I would like to share a policy brief from Dubai School of Government, where I done my Master, the policy brief focused on the issue of elderly care in the United Arab Emirates (UAE) by providing subjective information and data that affects the elderly and one that reveals the current system’s weaknesses and areas for improvement. To sum up the paper ends with the recommendations and observations to be taken as a starting point towards a
better elderly care system in the UAE.

I hope it add to your discussion ...

Thanks again ...

Attached resource:

Gavin Andrews Replied at 7:34 PM, 12 Jun 2016

I'd like to join, but how?

Phumzile Mndzebele Replied at 6:56 AM, 13 Jun 2016

Thnaks for the invitation. I cant wait for the discussion

Catherine Fabrizi Panelist Replied at 9:18 AM, 13 Jun 2016

I am thrilled to be a part of this expert panel. I want to introduce mysaelf - I am the Director of Nursing for the Geriatrics offi-site programs (Nursing Home and Home Care) @ Boston Medical Center. In addition I am a nurse case manager that follows a panel of complex, frail homebound elders in Boston. Our program is a Clinical Program in Section of Geriatrics @ Boston Medical Center which is an Academic Medical Center but also a safety net hospital. We have a Collaborative Practice Model (MD/NP/NCM) providing Primary Care Geriatrics and Intensive Nursing Case Management to approximately 550 patients within the city of Boston. Our patients are culturally diverse, w/ low health literacy; low income; 3/4 are >85y.o.; primarily Medicare but 56% are dually eligible Medicare/Medicaid. Our Geriatrician and Nurse Case Managers address not only the medical issues but have a holisitic approach promoting function; problem solving w/ and supporting caregivers; assisting w/ initiating elder service referrals; providing continuity for transitions of care; providing anticipatory planning for goals of care and long term care needs. I always tell caregivers when we take on a new patient we don't just take on the patient but also the caregivers - as they need so much support.

Our program is part of the CMS Independence at Home Demonstration Project thru the Affordable Care Act - sudying provider home visits around the country geared toward high risk medicare beneficiaries (fee for service only) receiving HV to see if this reduces hospital and ED visits; improves quality of care and improves patient satisfaction.

I have never participated in an on-line forum so be patient with me as I learn the ropes. Look forward to a valuable discussion.

Carole White Replied at 9:30 AM, 13 Jun 2016

I am very excited to have the opportunity to read the posts and learn from the panel as well as the participants. I work at the University of Texas Health Science Center in San Antonio. We are laying the groundwork for developing a comprehensive Caring for the Caregiver program, focused initially on caregivers of persons with Alzheimer's disease and other dementias and then expanding to become a more comprehensive caregiver program for older adults caring for family members with chronic diseases and disability. I am looking forward to the discussions this week.
Carole White

Isabelle Celentano Replied at 12:29 PM, 13 Jun 2016

Thank you Catherine for getting the panel started! Please also find attached here a Q&A from Laura Frain, MD, MPH. Dr. Frain is a geriatrician in the Division of Aging’s Center for Older Adult Health at Brigham and Women’s Hospital. In this discussion, Dr. Frain outlines the present and future informal caregiving landscape in the United States; common challenges faced by caregivers and providers; and next steps to better support these caregivers around the world. This Expert Panel will address many of the themes mentioned by Dr. Frain, and we encourage you to add your thoughts and questions to the discussion throughout the week.

Two brief reminders:

1. Any resource posted in the panel, including Dr. Frain's Q&A, will be available in the Resource library during and after the panel. You can find the Resource library here: http://www.ghdonline.org/supporting-informal-caregivers/resources/

2. For immediate updates on replies posted in the panel, we recommend changing your email settings to "Per-post". You can change your email settings here: http://ghdonline.org/account/email-settings/

Looking forward to this extremely important discussion!

Attached resources:

Thomas Bauer Panelist Replied at 2:22 PM, 13 Jun 2016

I look forward to being a part of this conversation as a member of what is called the sandwich generation. While my children are grown I still worry, care and support them as I do my Dad. In preparation for this conversation I would like to share the attached resource from AHRQ

Attached resource:
  • AHRQ Toolkit (external URL)

    Link leads to: https://innovations.ahrq.gov/qualitytools/caregivers-count-too-toolkit-help-practitioners-assess-needs-family-caregivers

Jean Galiana Replied at 2:26 PM, 13 Jun 2016

Have you heard about the NYU Caregiver Intervention. I recently interviewed Dr. Mittelman who designed the intervention, but it has not been published yet. I'll share it as soon as it is published. In the meantime, here is a link to an article in Health Affairs. My company is in the process of bringing the intervention to health systems in Asia.
http://content.healthaffairs.org/content/33/4/596.abstract

Jostas Mwebembezi Replied at 2:50 PM, 13 Jun 2016

Mr.Jostas is the Executive Director, Founder and Senior Research Consultant of Rwenzori Center for Research and Advocacy (RCRA) a not for profit communication for development organisation in Uganda working to improve lives of women and children. Mr. Jostas has a first Degree in Statistics from Makerere University Kampala. He is a certified public statistician with substantial experience in Project planning and Management, Monitoring and Evaluation.
Mr.Jostas has worked in behavioral change communication and advocacy fields for the last 6 years – with expertise in managing teams, research, monitoring and evaluation of programs including the development of Monitoring & Evaluation(M&E) plans, M&E methodologies and indicators; data collection and analysis protocol, undertaking baseline surveys process, mid-term, and end-term evaluations; monitoring and evaluating multi-region large scale health programmes, including in fragile and post-conflict environments; conducting data quality assessments, interpreting performance results and analysis of the implications of such results in the country context; report writing and Promoting research uptake. His expertise has seen him manage exciting and complex projects mainly focused on health systems strengthening, mHealth, reproductive health, family planning, malaria, HIV/AIDS, advocacy, Maternal Newborn and Child Health, Child Survival, Girl-child education and gender based violence. His is a practitioner in social behavioural change communication in Western Uganda, has employed latest communication technologies in addressing community challenges. He is now senior research consultant has accumulated substantial experience in research, technology for development, program design and management, and community empowerment and projects evaluation. He is innovative with managerial skills. Mr. Jostas is a member on Global Health Delivery online, group manager for all sub-Sahara countries on the USAID Learning Lab. He is a frontline player in strengthening health systems in Western Uganda among others.

Christine Morton Replied at 3:03 PM, 13 Jun 2016

Hello I am excited to read and contribute to the discussion here. I am a registered nurse and work in a busy the emergency department of a trauma hospital in New Westmonster, BC, Canada. I am presently working on a masters in health education and promotion at Walden University.
We see many seniors come in who have various conditions that compromise their health. We also view the impact this has on caregivers and families. This emergency department is a challenging place for seniors. It is noisy and busy with many sick and often difficult patients. If seniors are not struggling with confusion when they arrive the atmosphere can quickly derail them. As the hospital is crowded seniors often remain in the emergency for days before getting a room where family can visit and help provide care effectively.
Recently my father passed away after my mom spent several years caring for him at home as he had dementia. I was always in a state of admiration at my mom's patience in caring for him and her determination to keep him at home, even when her own health deteriorated as a result.
I will be interested in hearing ideas from all those involved ed in this discussion.

Wesly Elize Replied at 3:51 PM, 13 Jun 2016

With over 10 years of professional experience practicing medicine as well as extensive training as a Haitian Medical Doctor, I'm really interested with discussion on the care of the elderly, already I am co-founder of an organization supporting elderly. Looking forward to valuable discussion, Thanks again for inviting me!

Judith Thermidor Replied at 6:00 PM, 13 Jun 2016

Hello,
I am so grateful being part of this discussion.
Demographic change is a burden for all sectors in the world. However, aging population has a major impact on delivery of healthcare system. Lack of policy from stakeholders to response to this challenge is so far. We don't have yet an appropriate style of curriculum to encompass good services linked to older people. The implications of older people require more and more new assessment, more budgets for the government and workload for physicians.
Judith

Karen A Wolf Replied at 6:58 PM, 13 Jun 2016

This is a such important topic which is not easily covered from a global perspective - but there is much to learn from the discussion. I am a nurse-practitioner and sociologist teaching at Penn State but living in a small rural community. I have worked in community health and geriatric care for more than 40 years and relocated to this area to help care for my 90 year old mother. The community resources to support caregiving are relatively scarce in rural America. I am currently working with a community group to set up a "village", Susquehanna Valley Villages, to serve as an intergenerational non-professional support system. For example, we are launching a time-bank to encourage sharing skills and services to support caregiving and aging in place. The development of culturally responsive approaches to care giving is an area of my interest.

Attached resource:

Ralueke Ekezie Replied at 7:01 PM, 13 Jun 2016

Hi I am Ekezie Ralueke a nurse in Nigeria and owner of Blue Torch Home Care, a home care agency in Nigeria. here we do not have informal caregivers for the elderly because it is the nurses who work in Home Care. Some times the patients and the families will request that we provide them with an auxiliary nurse (In Nigeria they undergo 6 months training in a hospital or a setup) but they practice illegally because they are not licensed. They are requested because they can be so cheap for the clients, However, for the fact that Home care is currently not regulated in Nigeria (Though we are now registering the regulation body) and no health insurance, Home care practitioners sometimes try to engage the auxiliary nurses.
I do not think supporting the training of informal caregivers is currently good for a country like Nigeria because it will do more harm than good along the line.

Thomas Bauer Panelist Replied at 8:40 PM, 13 Jun 2016

As a health literacy researcher, I have learned that 43% of all patient in the hospital are cognitively impaired by condition of medication. As a best practice I always encourage the education of the patient selected caregiver to augment the patients education. This role is critical during the crucial hand off of care from acute care .

I would love to learn more about how we support the caregiver with medical knowledge to care for their loved ones.

Tom Bauer

A/Prof. Terry HANNAN Replied at 10:27 PM, 13 Jun 2016

This discussion is outstanding. I am impressed with the resources provided. Laura Frain's "informal landscape" really sets the scene of this under managed and under serviced area of care delivery -aged and non-aged (having a personal experience with congenital handicaps).

Leila Kalankesh Replied at 2:14 AM, 14 Jun 2016

Supporting informal care givers through tele-health solutions can make a significant difference in the quality of care.

Gary Parkes Replied at 3:00 AM, 14 Jun 2016

Over the past 10 years there has been a lot of excitement about Telehealth for monitoring the health status of housebound elderly. What evidence exists to support the widespread use of this technology?

marie goretti baransabira Replied at 4:43 AM, 14 Jun 2016

Thank u for this discussion and for this invitation
Old people have many problem, caregivers are necessary and needed .perhaps before decrease the number, we have to be sure that their tasks are not much compare at the beginning.

what do you expected ?

Eddy Ang Panelist Replied at 8:49 AM, 14 Jun 2016

Over the past decade, there have been a lot of discussions around telehealth implementations indeed. I would like to share a tele-consultation project implemented here at the Beth Israel Deaconess Medical Center (Boston) -- ECHO-AGE.

Project ECHO-AGE, established in 2012 at the Beth Israel Deaconess Medical Center (BIDMC), is a unique video-consultation and education program focused on improving the care of elderly patients suffering from dementia and associated behavioral problems. Such patients often lack access to clinical specialists with the expertise to optimally manage their care, and as a result are often started on potentially dangerous medications to control their behavior and at times even physically restrained. Based on the “Extension for Community Outcomes” (ECHO®) project developed by Dr. Sanjeev Aurora to successfully manage hepatitis C in rural New Mexico, ECHO-AGE attempts to rectify this problem by bridging the gap between clinicians at nursing homes and other community-based sites of care, and geriatric specialists at academic medical centers.

Through bi-weekly video conference calls with an inter-professional team of clinical experts at Beth Israel Deaconess Medical Center (BIDMC), front-line staff at our participating organizations have the opportunity to discuss the management of challenging patients as well as participate in a series of didactics aimed at improving the participants’ understanding of dementia and its associated risks, including elder abuse and social isolation. Our expert team consists of a geriatrician, gero-psychiatrist, behavioral neurologist, and social worker. We currently partner with 10 community sites throughout Massachusetts and Maine including nursing homes, assisted living facilities, Programs for “All-Inclusive Care of the Elderly” (PACE), and visiting nurse associations (VNA). The overall goal of ECHO-AGE is to increase the expertise of community-based health care providers in geriatric medicine and provide them with ready access to scarce specialists so that they are better equipped to manage challenging patients with dementia and other geriatric disorders in the settings where these patients live.


Eddy Ang, MD
Geriatrician
Beth Israel Deaconess Medical Center
Hebrew SeniorLife

Eddy Ang Panelist Replied at 9:01 AM, 14 Jun 2016

In order to better illustrate the operations of ECHO-AGE, let's walk through a case discussion together.

The case below was provided by the staff of a long-term care facility in Massachusetts. The resident highlighted in this scenario was admitted to the facility shortly after suffering a stroke which incapacitated her self-caring ability.

To set the scene for the nonmedically trained participants, this case depicts a 75 year old woman who suffered a stroke. Her other medical issues include dementia with Lewy bodies (a type of dementia usually accompanied by auditory hallucination) and anxiety. Following the stroke, she was admitted to a long-term care nursing home where she developed increasing restlessness/paranoia and anxiety.

======================
75 year-old woman with intraparenchymal hemorrhage (3/2016) likely 2/2 amyloid angiopathy, dementia with Lewy bodies, auditory hallucination, HTN, abnormal EEG with no seizures. Has a PEG tube in place but now able to tolerate adequate oral nutritional intake. Making good progress with PT/OT/SLP. Prior to being admitted to the nursing home, she was independent of feeding and dressing; daughter is a physician assistant. The resident herself has been a homemaker all her life.

Lately she has been noted to have increased anxiety and restlessness, often wandering around which requires 1:1 attention. She’s also becoming increasingly paranoid and believes that people are laughing at her. Her anxiety and emotional outbursts are escalated especially in the setting of group activities. People’s benign smiles are generally misconstrued as mockeries by her. She’s usually calmer in her own room. Of note, she has undergone multiple medication changes recently that involve an increase in quetiapine, and discontinuation of nuedexta (Dextromethorphan and quinidine) at daughter’s request. Modafinil was discontinued due to the resident being awake all the time. Mirtazapine and alprazolam were added for her behavioral outbursts. The resident has been having difficulties expressing herself. She’s able to answer “yes/no” with a simple one-liner comment but unable to describe more complex feelings. A recent follow-up MRI revealed a small subdural hematoma and a meningioma (benign). She’s alert and oriented to place and person at baseline. Currently dependent of all Katz ADLs and Lawton IADLs. Mini-cog was not performed at the long-term care facility.


Past medical history:
Hypertension
Dementia with Lewy bodies
CVA
Anxiety

Geriatric review of system:
Macular degeneration
Dysphagia
Urinary incontinence
Osteoarthritis
Recurrent falls

Current medication list:
Quetiapine 25mg qam, 75mg qhs
Escitalopram 20mg (dose stable for a couple of years)
Alprazolam 0.25mg qam (started last week)
Mirtazapine 7.5mg qhs (started 2w ago)
Donepezil 10mg/d
Amlodipine 5mg/d
Lovastatin 20mg qhs

Recent available labs:
Wbc 7.0
Hct 41.7
Na 140
BUN 29
Cr 0.9
TSH 0.12 (normal range 0.4-4.5)
Vit D 29
Folate 14.8

======================

The questions below aim to help spark discussions for all of us.

(1) If you were the provider or caregiver for this particular resident, what recommendations or treatment options would you implement?

(2) Do you have any suggestions related to medication changes?

(3) Would nonpharmacologic / behavioral interventions be helpful in this scenario?

Thank you for joining this discussion. I look forward to reading your comments!



Eddy Ang, MD

Amir Khan Replied at 9:18 AM, 14 Jun 2016

Thank you for making this discussion panel which will be helpful for elderly people....

Eileen McGinn Replied at 9:33 AM, 14 Jun 2016

antipsychotic drugs have a black box for increased mortality (60-70%) when used off-label in older adults, as well a drug label noting agitation, restlessness, anxiety, aggressiveness, etc

HHS has a program to decrease and eliminate this class of drugs used off-label in older adults in institutions

they are also associated with falls, fractures, institutional placement, etc

it is often difficult to come off these drugs, as well as other psychoactive drugs: she is taking several others too

sometimes Seroquel (Quetiapine) is started off-label in the belief that it helps people sleep, but can be very sedating, and has other adverse effects

I am running out now to PT but I will weigh in later as there are other adverse effects of psychoactive drugs in general, most especially falls, emotional lability, especially in older adults and when used off-label

will also post some citations also to support above discussion

Emily Taylor Replied at 9:46 AM, 14 Jun 2016

Hello all,

Great issue to discuss. I haven't been able to read through all the replies, so apologies if this is redundant.

I encourage you to check out the Rosalynn Carter Institute for Caregiving (http://www.rosalynncarter.org/). She has been doing work with caregivers and evidence based best practices for 30+ years. There is some overlap with the Carter Center, which obviously does a TON of international work. I should think they would be a valuable resource and added presence at the table.

Emily

Junior Bazile Replied at 11:10 AM, 14 Jun 2016

Thank you to all for launching this very interesting discussion on GHDOnline. When it comes to care services delivered to elderly, I feel that we are all concerned because we all have older people in our vicinity and we all are expected to grow old one day.
Considering the system in the US, I know that there are numerous options for delivering care to elderly (assisted living, nursing home, home health aid etc). One question that I have is: when we say informal care givers, are we referring to family members we might not have the necessary training and knowledge to deliver the care or do we include assisted living, nursing home and home health aid services in the informal bracket?
Looking forward to more discussion.
Best,

Bazile

Pierre Bush, PhD Replied at 12:13 PM, 14 Jun 2016

Dear Colleagues,
Thank you for launching this important expert panel to discuss informal caregiving. Informal caregiving is important because it is mostly performed by relatives, friends, and volunteers who take care of the those who are most vulnerable in our communities. According to the LA County department of public health over 80% of care to the needy in the USA is provided by informal caregivers. Informal caregiving was saving the US economy an astonishing 375 billion dollars in 2007 (LA Health, 2007). The practice has to be encouraged as we are bracing for more aging population in the coming years.
Once again, thank you for introducing this topic.
Peace,

Attached resource:

Melissa Mattison Panelist Replied at 2:09 PM, 14 Jun 2016

The frustrations patients, families, and caregivers, as well as clinicians feel are very real; taking care of older patients with often multiple complex chronic medical problems in the setting often of cognitive impairment is incredibly challenging in the best of circumstances. When one becomes acutely ill, requires hospitalization etc, the challenge is compounded. Changing the chaotic environment of a hospital emergency room is one consideration.

However, leveraging new communication strategies between caregivers and clinicians, family, and patients seems like a promising way to alleviate some of the complexity and challenges across the care continuum. ECHO AGE and ECHO CT are some ways this can be done. My hope is that new communication circles can be created using real-time discussions with providers and caregivers, allowing all relevant parties to hear the discussion between others; currently a patient sees their cardiologist who writes a note in the EMR, then some time later they see their Neurologist who writes their note in the EMR, then the patient sees their PCP .... It'd be great if reimbursement from payers would align better to stimulate more cohesive care and communication.

Melissa Mattison, MD
Hospital Medicine + Geriatrics

Thomas Bauer Panelist Replied at 4:58 PM, 14 Jun 2016

Someone has asked what the definition of a informal caregiver is... The Family and Caregiver Alliance defines it as any relative, partner, friend or neighbor who has a significant personal relationship with, and provides a broad range of assistance for, an older person or an adult with a chronic or disabling condition. These individuals may be primary or secondary caregivers and live with, or separately from, the person receiving care.

The Department of Public Health provides a broader definition ..Informal care giving refers to the help and support family members and friends provide daily to individuals who are either temporarily or permanently unable to function independently.

In my experience this is a circle of individuals who may provide help with transportation, phone calls, visits, managing medications, cleaning the house and so much more. Typically there is one individual who is the main care taker and organizer

Thomas Bauer Panelist Replied at 5:05 PM, 14 Jun 2016

One of the challenges of care giving is the geographic separation of families. In past generations many families lived geographically close and were able to support the needs of their loved ones. In subsequent generations many have had to travel to find gainful employment disrupting this historical pattern. Much has been written by authors such as Atul Gawande and others about this trend

Technology can play a role in allowing families to be their with their parents via Face Time or Skype technology" While not the same, it can be an important adjunct

What other means have members of this community found to help connect those distant from their loved ones in times of medical need?

JINCAI WEI Replied at 6:30 PM, 14 Jun 2016

Very honored to participate in this discussion. it looks the problem of aging population will bring more and more needs. Especially because of change of family pattern. though a few people working and living in city choose to take their eldership to city and live with them, but most of elderly used to rural life. Whether in rural or in urban areas, the care of old people is a pressing problem but maybe in different styles and conditions. For elderly with chronic disease, perhaps the community health service agencies should play a main role in training and premonition of such a benifit for elderly. but there are not enough manpower. The application of information technology should be very helpful for health service agency to support Informal caregiver.

Jincai from China

发自我的 iPhone

Judith Thermidor Replied at 6:50 PM, 14 Jun 2016

Yes Thomas, I agree with you. There is strong evidence that social isolation is a common problem for aging population. The lack of emotional support, and also the lack of children visiting taking into account gender, ethnicity, culture and the migration. Then, thecnology is considered the cornestone in the prevention of isolation for elder people. So, a training in internet, social media, mobile communication, smartphone is fundamental to enhance conectedness in older people.
Judith,

Elizabeth Glaser Replied at 9:06 PM, 14 Jun 2016

In the past I wrote some here at GHDonline about caring for an elderly family member so I am very glad that GHD is offering this, both as a clinician, researcher, and as the daughter of a 91 year old parent.
It can be very stressful to negotiate the health system for an aging parent and though it is easy to list the many ways that the system has failed , I prefer to start on a positive note by mentioning a program that was helpful to us.
About 11 years ago my parent had knee replacement surgery - at that time the hospital had an initiative in which elders undergoing certain surgical procedures were evaluated by a geriatrician prior to surgery. The geriatrician could make suggestions about getting the patient safely through anesthesia and surgery as well as ways to address post op pain. The overall goals were to reduce confusion, stress and general complications during surgery and the immediate post op period.

As a caregiver, it really reduced my stress because I had someone to turn to for help when my mother had some problems post-op. The geriatrician was consulted when my mother needed her post op meds changed due to nausea, vomiting, dizziness, and confusion. The pre-op evaluation was helpful to understand her baseline when the neuro team evaluated her increased confusion. The new regimen suggested by the geriatrician was not one the surgeon would typically have ordered but once it was switched she become alert and oriented, able to keep down food and get up and walk.

Instead of my having to wrangle with various teams of internists, surgeon, and neurologists , the geriatrician acted as my mother's advocate reducing her risk of inpatient complications and giving me time to prepare for after she left the hospital.
I wish more geriatricians or geriatric nurse practitioners were available for primary care as I suspect that using such services can improve not only the health of the elderly patients, but that of their caregivers, too.

Catherine Fabrizi Panelist Replied at 9:09 PM, 14 Jun 2016

Caregiving is such a hard job and yes per previous responses often leads to social isolation, depression, anxiety and family strife. Informal caregivers are basically people who are not paid to provide the day to day assistance with activities of daily living. Society seems to take these people for granted yet they provide the majority of care to our older resident. They need so much education, support, guidance and need accessible answers to their questions which are often quite specific to the individual. Unfortunately many HC providers don't have the time for lengthy visits or to field the lengthy calls that are required when there are competing demand for increasing visit volume and access. Elder care really does take a village - providers need an interdisciplinary team to provide the necessary "care" - which often is not medical. Helping individuals sort through the variety of service, volunteer and educational resources in the geographic area is key because these caregivers often don't know where to begin or even have the time to research themselves. Technology is a great resource but for those who are low income w/ language barriers, poor health literacy technology is often not accessible. Need the person to person contact.

Henry Kilonzo Replied at 11:13 PM, 14 Jun 2016

Thank you for such rich and timely discussion. Caregivers play a primary
role in ensuring the elderly lead dignified lives. There services being
"informal" how can their issues including the work they do be prioritised
by the governments? How can there be sufficient resources and make their
work formal? And lastly the evidence of their contribution to health
outcomes to be well articulated and shared for policy action.

Karen A Wolf Replied at 11:24 PM, 14 Jun 2016

The case of the patient with lewy body dementia is a challenging one. A fundamental question that I would ask is what is the goal for care and what does/did the patient and family and express as their preference and values in this situation. The complexity of the psychotropic medications may well be part of the problem- perhaps increasing not only the risk for falls, but contributing to the functional decline and confusion of the patient. Medications are used widely in the US and in some cases substitute for the caring presence of others. Would this patient be able to function better on less and or fewer medications? Could you be engaged quietly in her room in some activity - for a homemaker, a favorite of mine is folding laundry. I would be interested to know how these patient might be supported in other countries. There are very different perspectives on dementia and providing culturally supportive care is an area of my interest.

Attached resource:

Gary Parkes Replied at 2:44 AM, 15 Jun 2016

I totally agree that learning to use technology like the internet can reduce isolation especially through Facetime/Skype etc. my own family has benefited from simple use of ipad technology and has opened up an extremely important support structure. The major tech companies need to work on making smarter simpler gadgets and the elderly need support in keeping these things up and functioning.
Social media, however is a potential danger as well. Elderly people can be vulnerable and may (like many youngsters) open themselves to a world that they cannot control in terms of privacy. Scams, phishing emails etc may draw the elderly in to fraud and abuse. There are already plenty of criminals of low morals who are ready to defraud the vulnerable.

Eddy Ang Panelist Replied at 7:40 AM, 15 Jun 2016

Thank you for your response to the case illustrated earlier about a patient (history of dementia with Lewy bodies) who was experiencing increased anxiety and paranoia following an episode of stroke.

Panelist discussion: (from the perspectives of a cognitive neurologist and a geriatric psychiatrist)
In the context of a temporal-occipital-parietal hemorrhage with right sided weakness, we believe that the hemorrhage occurred in the left side of her brain. A left-sided stroke often gives rise to aphasia and language problems, along with difficulty with comprehension. Paranoia is common too due to lack of comprehension.


Our Recommendations:

Nonpharmacologic interventions:

1) Please evaluate this resident’s speech and comprehension and assess the severity of this issue.

2) It's salient to note that nonverbal cues can be very instructive and powerful, such as gestures and pantomiming. They not only set the tone for your interaction with her, but also provide a sense of comfort and expectation for the patient whenever she fails to understand conversations verbally.

3) Desensitization and positive reinforcement: Gradually increase the length of activities for the resident. We could consider starting with a few other residents in her room and planning for short group activities, and then gradually moving her to join the larger group for, say, 5 minutes (and letting her know what to expect). Once she eases into this type of setting, hopefully she will be more willing to participate in group activities in the long run.

4) Melodic intonation therapy (MIT): This is a series of speech therapy involving training a person to express himself/herself through rhythmic singing techniques. However, it has to be performed a trained personnel. Most speech therapist are not trained in this.

5) We could consider trying different positioning of the resident during group activities, i.e. having the crowd sit in front of her or in the back of her, and determine which positioning strategy works in her favor.

Pharmacologic:

1) Repeat TSH and check FT4 to r/o hyperthyroidism as a cause of restlessness.

2) If no clear benefits from alprazolam and mirtazapine, we would consider discontinuing/tapering them gradually, one medication at a time.

3) Consider increasing the dosing frequency of quetiapine to 25 qam, 25 noon, 50mg qhs while keeping it at the same total dose per day.


Take-Home Pearls:
We should always aim to streamline and discontinue psychoactive medications at all times if there is a lack of clear benefits from them. A good rule of thumb would be to change (either increase or decrease) one medication at a time.

Lisa D'Ambrosio Panelist Replied at 9:15 AM, 15 Jun 2016

Good morning! Today we want to extend the discussion around caregiving to explore its economic demands on caregivers and families. While the emotional and physical demands of caregiving are often more tangible for people: it’s often not too difficult to understand how caring for an aging parent can be emotionally challenging or how caring for people with some conditions requires a great deal of physical work (often from caregivers who may be themselves older or more frail).

But one of the issues that is often a little more hidden, but is quite significant for many of the younger, working-age caregivers, is money: for family and other informal caregivers, caregiving can exact a significant economic toll. The care they provide is unpaid, and for many this may be time that they have taken off from paid work. It can be time taken as vacation, as sick time, or it can represent switching from full to part time work. For others it may be leaving the workforce all together in order to provide care. So for some individuals and families, caregiving may translate into a direct loss of income. But the impacts of this loss of income are not only in the present but also in the future – less income now and fewer years in the workforce translate into lower Social Security benefits at retirement, and overall less savings for retirement (e.g., harder to save money through vehicles like 401(k)s, IRAs, etc.). So while caregiving may seem like something that affects people economically only in the present, its impact may extend into caregivers’ futures. And when you look at AARP data presented at the GHCD Conference a few weeks ago, suggesting that nearly a quarter of Millennials and Gen Xers are engaged in caregiving, it’s clear that the economic effects of caregiving for many may have a long tail.

Lisa D'Ambrosio Panelist Replied at 9:36 AM, 15 Jun 2016

The economic burdens of caregiving also serve to reinforce some of the challenges that women face in planning for their retirement. Women are more likely to be caregivers than men, they are more likely to spend more time caregiving, and they are more likely to take time away from paid work to provide care – or to retire early. Add this to the lower wages that women earn on average while in the workforce. So for women, caregiving may exacerbate the challenges in saving for retirement as well as further depress any Social Security or pension benefits they might receive. AND they on average live longer than men – they will need to make their retirement savings last longer!

Lisa D'Ambrosio Panelist Replied at 9:47 AM, 15 Jun 2016

Some numbers – a little dated but powerful – from the 2008 MetLife Costs of Caregiving Study: “For women the total individual amount of lost wages due to leaving the labor force early and/or reduced hours of work because of caregiving responsibilities equals $142,693. The estimated impact of caregiving on lost Social Security benefits is $131,351. A very conservative estimated impact on pensions is approximately $50,000. Thus, in total, the cost impact of caregiving on the individual female caregiver in terms of lost wages and Social Security benefits equals $324,044.” Again, these numbers are from 2008 - pre-recession.

https://www.metlife.com/assets/cao/mmi/publications/studies/2011/Caregiving-C...

Lisa D'Ambrosio Panelist Replied at 1:42 PM, 15 Jun 2016

The economic challenges of caregiving might seem like all downside - fewer hours at work, fewer savings, etc., for the caregiver. But I am wondering if there amight also be an upside (along the lines of "necessity is the mother of invention"). Because we know that caregiving and the need for caregivers is only likely to grow, are there some opportunities here for new businesses? There are companies like Honor that are moving into this space to offer caregivers the opportunity to hire qualified paid care for a loved one, with an ability to receive information and updates via smartphone.

Are there other ways that we could envision a positive economic upside to caregiving - perhaps through the development of new products or services to meet the needs of caregivers and care recipients better? Might caregivers be a natural group of entrepreneurs?

Lisa D'Ambrosio Panelist Replied at 1:45 PM, 15 Jun 2016

Any thoughts, stories, examples, etc. of caregivers coping with economic challenges, or taking what they have learned as caregivers and turning it into an opportunity?

Rebecca Groner Replied at 2:11 PM, 15 Jun 2016

This has been such an interesting and important discussion to be a part of this week.

I would like to share what we’re doing at Wellthy (http://www.wellthy.com/), a new service to transform elder care as well as improve and organize the informal caregiver experience. Wellthy cares deeply about each family going through the stressful experience of providing care and so much more for an aging adult. As informal caregivers and startup leaders in the elder care/health technology industry, we’re obsessed with this topic and building a business to make the process easier.

Our platform can be used for free and we’re happy to offer a discount for this community. We’d love to have your thoughts about this pressing issue and what more we can do together to address gaps in the elder care system and meet the needs of caregivers.

Zacarias Mateus Replied at 2:25 PM, 15 Jun 2016

Dear Rabecca

This theme is really very important and sensitive, as it involves the elderly and in need of much support by caregivers ... I think an example to follow would be this:
At the Catholic University of Mozambique, Faculty of Science of Health, each student from the 1st cycle of medicine course (first to fourth year) should follow over these four years at least three families (including elderly). This follow-up is to support Psychosocial and Health, eg screening for some diseases like Hypertension and refer these patients to seek health care, etc ...
In this way we decrease the costs and resources to spend in caregivers because this activity is included in their curriculum as students ....
I was a caregiver for four years as a medical student ...

Best Regards
ZMteus

Lisa D'Ambrosio Panelist Replied at 6:06 PM, 15 Jun 2016

Zacarias -

That's a very interesting model; one of my colleagues at the AgeLab is studying empathy among doctors and other medical professionals, and I wonder what kind of impact this experience has on the participants - both the caregivers and care recipients.

Another model we have been thinking about in our lab includes crossing generations as well: older adults, who may be "house rich" but in need of some assistance, offer housing or reduced price rent to younger adults to live with them. In exchange, the younger adults perform tasks like home maintenance, grocery shopping, perhaps some meal prep, etc. I'm not confident that such a model would work very well for cases where the care recipient needs a great deal of care and direct physical support, but for some people who need a little bit of support to continue to live independently, such an arrangement may fit the bill.

Any thoughts on whether arrangements such as these might become more common over time as the population of single/never married older adults grows, as it is projected to do? These people may need care some day, but they might not have children or a spouse - the first line of family caregivers - to provide it for them. Exchanging something like housing support for care support might make economic sense, as well as serve to help combat the isolation and loneliness that others on this discussion have noted older adults may experience.

Paul Nelson Replied at 11:24 PM, 15 Jun 2016

Former Senator Benjamin R. Barber has said, "The language of citizenship suggests that self-interests are always embedded in communities of action and that, in serving neighbors, one also serves self." Eventually, all nation's are likely to be resource-poor for health care especially for the infirm. Shouldn't we begin to nurture the evolution of multiple micro-communities of 300-500 neighbors to help each other. The micro-communities could evolve over-lapping boundaries for the redundant resiliency applicable to newborns, the disabled, the handicapped as well as the "infirm." These could, in turn, be connected to a community-wide HEALTH Co-op with responsibilities to promote collective action for the "common good" within the community. I do not infer that the HEALTH Co-Op itself would offer direct services, rather it would mobilize the resources available, even if only volunteers. The HEALTH Co-Op could also be a resource to connect local needs with outside resources, such as disaster preparedness.

This arrangement already exists for the USA agriculture industry, initiated by Congress in 1914. Importantly our agriculture industry is the most efficient among the world's developed nations. AND, our healthcare industry is the least efficient among these same nations. All very important as we begin to think, such as now, of a world-wide population of 10 billion in 2050, 7 billion as of 2011 and 7.4 billion in 2016.

arnab paul Replied at 12:05 AM, 16 Jun 2016

I would be interested to discuss the role of technology in bridging this increasing gap through Healthcare at Home & Connected Health Model. It would be worth to note about the shortcomings and the potential strategies to overcome the unmet need of caregivers and also for meeting the needs of aging adults.

Thomas Bauer Panelist Replied at 8:36 AM, 16 Jun 2016

I am honored to moderate today's discussion after a vibrant start to our conversation with a personal story...

It was Mother’s Day 2014. I had never seen my Mom happier as she danced to her favorite music surrounded by her family. I can still recall the joy that emanated from her on that day. This all changed a mere month later when I called her in the morning to learn she was suffering from all the symptoms of a stroke. We learned that day that a stroke would have been the better diagnosis. She was sent to large medical center in the Midwest and a brain biopsy was performed. My vibrant Mom was now in harm’s way.
After her discharge we received a call on a Saturday afternoon from her surgeon. We were informed she had a rapidly growing brain cancer and needed surgery immediately. We were all in complete and total shock, and we agreed. However, her behavior had begun to change rapidly. I called the surgeon out of concern that the surgery may be futile. We agreed a scan would be done before surgery to address that concern with my mom and her family.

We arrived at the hospital on Monday evening and it was as if the conveyor belt had already begun. She was processed, evaluated, and various health care professionals conducted their assessments. As every professional entered, I inquired about the scan. Finally at 3:00AM on the day she was scheduled for surgery, the scan was done but had not yet been read. Throughout the night and into the morning I insisted that she not have surgery until the scan was read. Despite this expressed desire remaining unmet, it was determined the surgery was necessary, and my mom agreed to proceed. I restated my family’s demands to see the surgeon and review the scan before surgery, but the conveyor belt continued. They took her to pre-op even as I reinforced my demand; the anesthesiologist came in and I held firm–it was time to stop the conveyor belt. I stood there, a 40 year veteran in health care, protecting my mom by stopping the OR schedule until the surgeon emerged.

I tried to set-up a call with my family on speakerphone so we could all be part of the discussion with the care team, but the technology failed us. One physician called my sister, another called my mom’s primary care physician, and the surgeon spoke with me and my mom. Each returned and said the surgery was a go, and headed to move her to the OR. Once again, I stopped the conveyor belt. My mom and I needed to hear my sister’s and the PCP’s perspective firsthand to make sure she was not going to spend her remaining time in pain and agony from an unnecessary surgery. I called each to confirm, which delayed the surgery 90 minutes. The surgery moved forward, but I left the operating area worried about my mom and trembling with anger and concern about how much stamina it took to coordinate the best care for my mom. She would have done the same for me.

Could this angst have been avoided had they only listened to me and my mom the night before?

Thomas Bauer Panelist Replied at 9:40 AM, 16 Jun 2016

One resource I would like raise for discussion is peer to peer support groups. Several studies have shown that caregivers are a higher risk for development of health conditions. This may be in part due to the stress and time commitment needed to care for a loved one. One effective tool maybe caregiver support groups.

I believe the Alice Porembski's poem My gift provides some wonderful insight into peer to peer support groups

I am a stranger to you now, but let me walk with you for awhile. Because I have been where you are, and where you are about to go.
I have no answers. I offer instead my hand, my heart, my listening ear, my time, and my experience... so that one day, you can turn to another and say:

I am a stranger to you now, but let me walk with you for awhile. Because I have been where you are, and where you are about to go. I have no answers. I offer instead my hand, my heart, my listening ear, my time, and my experience... so that one day you can turn to another and say..

Junior Bazile Replied at 10:58 AM, 16 Jun 2016

Thanks Thomas,
I agree that peer to peer support group could be a good gateway for caregivers considering the amount of stress that they may face when taking care of very sick family members. This is definitely something that I think should be promoted.
I am also wondering if a certain level of health education and even basic information and knowledge on specific diseases would not be quite important for the care givers. For example when we consider infectious diseases, we have seen how in the developing world many informal caregivers of tuberculosis patients get infected because they don't know how to protect themselves.
Best,

Bazile

Zacarias Mateus Replied at 12:50 PM, 16 Jun 2016

Dear Lisa

Thanks for the comment. Regarding your model, this may be a good idea for people with a high economic level, but what about the people with low economic level, as many eldery in my country?
It would be difficult for them supporting these caregivers....

Best Regards
ZMateus

Thomas Bauer Panelist Replied at 4:19 PM, 16 Jun 2016

Junior,

I agree with the need for education. I have seen several peer support groups that require training in facilitating, mentor and demonstrated success in managing their condition before leading a group.

Tom

Thomas Bauer Panelist Replied at 4:23 PM, 16 Jun 2016

One of my "Go to" resources is Medline Plus. I researched Caregivers and found a bountiful reference list of resource to support caregivers. Topics include the following:

• Caregiver Health and Wellness (American Academy of Family Physicians)Available in Spanish
• Caregiver Stress (Department of Health and Human Services, Office on Women's Health)
• Caregivers and Exercise -- Take Time for Yourself (National Institute on Aging) - PDF
• Caregivers and Serious Illness (Administration for Community Living) - PDF
• Caring for the Caregiver (National Cancer Institute)Available in Spanish
• Coping Checklist for Caregivers (American Cancer Society)
• Coping with Caregiving: Take Care of Yourself While Caring for Others (National Institutes of Health)
• Finding More Help (Long Distance Care-Giving) (National Institute on Aging)
• Help for the Caregiver (National Cancer Institute)
• Respite Care (Administration on Aging)
• Taking Care of You: Self-Care for Family Caregivers (Family Caregiver Alliance)
• What Is Caregiver Burnout? (American Heart Association) - PDF

Please see link below to access these resources

Attached resource:

Thomas Bauer Panelist Replied at 4:30 PM, 16 Jun 2016

Much has been discussed about the impact on the caregiver. As I read various resources this week I found this guide "Caring for the Caregiver" from the National Cancer Institute.

As a caregiver to my father and a veteran of healthcare I still found the information helpful as it remind me how to perform my role better as well as how to better take care of myself.

Tom

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TANIA TELLO Replied at 10:27 PM, 16 Jun 2016

Caring for an elderly person who has a chronic disease or acute disease advanced generates a lot of stress and this has been seen in some studies, such as the study of caregivers of Alzheimer's disease (AD).
Stressors and distress have been associated with caregiving linked to key mechanisms of the initiation, propagation, and clinical manifestation of atherothrombotic diseases. For instance, duration of caregiving was associated With AD endothelial dysfunction and carotid intima-media thickness. Dementia severity of the care recipient was related to impaired past endothelial function and enhanced coagulation activity in the caregiver. High Negative affect, treats including depression, low positive affect, sleeping difficulties, and low subjective health are commonly found in caregivers, and these factors may also increase the risk of cardiovascular disease (CVD) AD caregivers showed associations Between poor sleep and inflammation (ie, interleukin (IL) -6 and C-reactive protein.

Tania
Perú.

Rachel Broudy Panelist Replied at 7:00 AM, 17 Jun 2016

Hi all - I'm so delighted that so many are interested in this topic. I am the Medical Director of a PACE program that provides tightly coordinated interdisciplinary care for older adults who are "nursing home eligible" - which means they are either quite sick, quite frail, disabled, or have significant chronic mental health issues. PACE is a national model of care with over 100 programs across the U.S. and after practicing in this model, I cannot imagine how one could possibly care for a frail aging population or complexly ill aging population without the support of an interdisciplinary team. Our team includes transportation, an adult day health center, clinic and home nursing care, social workers, physical and occupational therapists, PCPs, dieticians, home health aids, recreational/activity support, spiritual care - the whole deal! And we see people across all sites of care - in home, in our clinic, at the hospital and in the nursing home.

I was asked to begin with a case of a family meeting. I tried to limit myself to two cases/ideas.

1. Dementia with wandering, resistance to personal care and nighttime wakening. So common. The caregiver comes in, completely at wits' end, exhausted because they have been up all night but can't nap during the day to compensate. In one such recent family meeting the daughter was so exhausted that it was difficult to connect with her. She was tired, angry, frustrated, and short-tempered. She described all she was dealing with at home with her mother, who always presents at clinic perfectly well dressed and socially appropriate, though confused, but at home is wandering at night and resisting care. At our first meeting we had our social worker, myself (the pcp), a rehab therapist and an occupational therapist. We let the daughter talk about what was hard, tried to do some normalization and education about dementia, and in the end, focused on adding medications for sleep because the family system seemed so fully dependent on the daughter sleeping. Then a home care nurse made 2 visits to review meds with the daughter. The occupational therapist made a home visit and we provided child-safe oven knobs and alarms for the outside door. And we have been checking in with the daughter every couple of days to see how things go. We anticipate several more family meetings before we have reached a manageable situation with all of our team members being involved.

2. A second case that I would like to address is about making meaning in these later years. There is a lot of press about healthy aging and aging well but often what we see and what caregivers struggle with is unhealthy aging and when people are not aging well. Older adults often experience multiple losses - roles, identities, function, memory, home, friends and spouses - that make finding meaning in these later years quite challenging. Caregivers want to help their loved ones and attempt to balance helping with managing their own lives. Often this means exchanging the older adult's limited independence for expediency as the caregiver tries to get all their daily tasks done. My example involves a woman who had a stroke with a paralysis on one side. She came to us unable to walk. After much rehab, she was walking again with a cane, though slowly and gingerly. This was a triumph for her. But at home, her family kept her in a wheelchair because they were afraid of her falling, did not have time to wait while she slowly walked to the bathroom, and worried about her safety. This was a very loving family. The daughter worked full-time and the husband was at home. We have had several family meetings over the years of taking care of this woman to address this balance of risk versus autonomy. The caregivers in this case worry about safety. And they are not full-time caregivers. they are also working and raising their own families. Yet for the patient, her independence and autonomy was so important, if inconvenient. This is another common struggle for families and patients. So exploring how to maintain meaning in the years when one's losses are so profound, how to find a place of autonomy and ownership when one is so dependent, and how to help caregivers balance these competing demands with their own lives remains a critical issue for many families in our communities.

Rachel Broudy Panelist Replied at 7:07 AM, 17 Jun 2016

I also wanted to respond to Thomas Bauer's story of his mother. Oh the angst of that! And how common! In the US at least, the conveyor belt of healthcare, of treating the disease first and foremost can be so dangerous for older adults. I have a colleague who describes putting an older adult in a hospital as the same thing as putting an asthmatic in a smoker's room! Our medical emphasis is so much on treatment of disease and not on the life cycle, on quality of life, on the acceptance of death at the end for all of us. These conversations about when to intervene and when to stand back often take many discussions, meetings, and reworkings. Atul Gawande's story of his father in Being Mortal is a wonderful example of how there was no one simple answer but how the risk-benefit question about medical interventions had to be asked again and again and again. And this takes time. (And is not reimbursed.) There has been much progress in this area by so many groups, but we still have a long way to go.

Madhuri Gandikota Replied at 1:10 PM, 17 Jun 2016

I think I am a bit late for this discussion. I did not get the chance to read the whole thread- But have read Thomas Mothers story.

As many of us acknowledge caregiving is a very intense and personal journey. I fully endorse that informal care givers need support structure in place. Taking the case of India where we have most of our loved ones, care-giving takes another dimension. We spend intense periods taking care of families for immediate health conditions. In case of onerous disease such as cancer, we pour all our energies into it- whether we win the battle or not is another point. On the other hand, Chronic conditions need long term commitment. But how can we manage this over time?.

While every day face-time conversation and technology does play a vital role in connecting with families, but I feel people in distress need is a human contact. This can be something as small as motivating them to take action on their failing health. I was wondering if there is a system either in India or in US where people with similar condition, living in the same zip code can perhaps take turns and go to hospital for screenings, medicine pick ups, and even perhaps even caregivers can take turns and lead a small group for one visit. This way like carpooling, we can pool the caregiving responsibilities. I keep thinking how/who can replicate the human contact?.
Appreciate the thoughts

Rachel Broudy Panelist Replied at 1:32 PM, 17 Jun 2016

I hear you! I think these supportive roles and needs are so important and that caregiving cannot happen without them. The work is too hard, too long, too chronic. If you think about raising children, we have a great deal of social support, at least here in the US, to balance the caregiving. There's time in school, buses to school, resources available for food and medical care for low income families (one could argue not enough, but at least the idea is there). We have put those similar structures in place for older adults, especially now that people are living longer. And living longer with chronic disease and with dementia so living longer while needing more care. The question is, what type of care do older adults need? Acute expensive medical care or more long term supports that build communities, support families, and focus on function and quality of life rather than disease markers. The PACE model supports the idea that you can spend a great deal of money on this type of community and caregiver support, still provide high quality medical care with good outcomes, and be financially viable.

Rachel Broudy Panelist Replied at 3:04 PM, 17 Jun 2016

And I would add Madhuri that those are excellent ideas and I bet the discussion earlier this week that talked about IT had more ideas about how to use social media to support caregivers and community systems in the care for the elderly!

Judith Thermidor Replied at 5:56 PM, 17 Jun 2016

Hi Madhuri,
Nice to hear from you in this great discussion, human contact sounds awesome and I agree with you. More and more in urban site, human contact is difficult cause people leave their city for education, work, relationship, and migration. So the technology will play an important role in prevention of isolation and to stay in communication with their family, many people over 50 years don't have access to a smartphone or they can't use any equipment. Also I think a reeducation to visit grands parents every weekend and call them more frequently will be so helpfully. Besides government’s program the family plays a crucial role in elderly population.
Now, the implication for an aging society we need to formalize training, initiation and assessment of caregivers, “Who they are? And what they do?” It’s time to interface society with science to implement informal caregivers. And more social and cultural programs for elderly like exercise creative engagement in musical, Yoga, dancing, reading, writing, poems, spiritual and life-enriching events.

Arvind Mathur Replied at 1:28 AM, 18 Jun 2016

Thanks for thought provoking discussion.
We at Asian Centre for Medical Education, research & Innovation are also in process of developing support system for informal caregivers in Rajasthan state of India. Need assessment study has revealed gaps in knowledge about care giving. Empowering informal caregivers with knowledge is essential but taking time out for such learning sessions is not feasible for them. We are working to evaluate feasibility and usefulness of individualized home based training for all family caregivers by a team of health professionals (nurse, physiotherapist, social worker). Please share your experience about it. Cultural and geographical diversity requires innovation of local solutions for this issue.

Milka Ogayo Replied at 8:54 AM, 18 Jun 2016

Thanks for the invite.
This is an area that really needs to be strengthened. Looking forward to learning more.

Madhuri Gandikota Replied at 6:26 PM, 18 Jun 2016

Hi Judith,
You have rightly said that people over 50 are not good in technology (more so in some developing countries may not be savvy with technology).
What I was trying to say is couple technology to human contact. (I think I missed saying it clearly). Mostly grand kids are tech. experts and so are the friendly relatives or neighbors to these elderly parents. But they will only help with tech. issues if at all- say call uber. Yes, also I agree that social and cultural programs are very restorative for their mind and body.

I noticed that the elders need a gentle nudge to be the part of that community. I personally have seen many of our parents who are joined in these community programs taper off after initial enthusiasm. And we motivate them again and again. We generate and co-create group accountability programs to encourage participation despite moderate costs to these programs.
Though these community programs are better in USA but not so much in countries like India.

The problem I noticed in India is most of the government employed retired in India have pension and their routine medical needs are covered by the employees insurance. Interestingly, they also live in close by places. I see people meeting at the Health Center to get their screenings, collect prescriptions and they have a hearty chat at the clinic. I always felt why can’t they car pool and still enjoy the social interaction. Infact, this is so relevant given crowded streets and low parking.

Here the technology can play a critical role for the hospital end, where they can identify a cohort of patient with similar needs and rotate a care-giver between 10 families for similar non-urgent conditions.

On the other hand corporate hospitals need more pro-active identification of such groups of people. I am trying to sweet talk to some hospitals in India, but again.. couple it with technology
So you are right, but again, I am learning personally as I am trying to promote my Health IT solution to providers, I get the answer, the solution is are useful until there is Action. And action with technology needs a human. I see Arvind Mathur experience below is interesting.

Rajib Sengupta Replied at 10:39 PM, 18 Jun 2016

Dear All,

We are somewhat executing a similar type of model in our Arogya HomeCare program (www.arogyahomecare.in) that Madhuri and Arvind suggested in Kolkata, India.

Due to economic reason, Kolkata has seen a huge rise of ageing population, many of whom are staying alone. While our home based medical care is provided by the physicians, nurses, physiotherapists and we heavily rely on IoT enabled monitoring device and ICT, but for the constant human touch we depend on our volunteers extensively. We are creating cluster of volunteers of different age-group in different part of the city, who stays in touch with our Arogya HomeCare subscribed elderly population. In-fact, not only long-term caregiving, in the absence of a 911 type emergency system, we are dependent on our paramedic trained volunteers to step in during any medical emergency. No doubt, technology helps a lot - such as our Kolkata Medical Emergency System (details : http://kmes.in/about.html) , but the information from KMES becomes useful only when the volunteer steps in.

The idea is simple – Instead of competition let’s collaborate. And not only collaborate among institutions and professionals but bring general public in the mix – when proper toolsets (e.g: information) and support system (e.g: training ) is provided to the general public they can do wonders.

Thanks ,
Rajib Sengupta

www.missionarogya.org

Madhuri Gandikota Replied at 9:59 AM, 20 Jun 2016

Hi Rajib,

Thanks so much for bringing this program ! Kudos for such a great mission.
This service is so right on - great use of IoT, infrastructure , real - time analytics, logistics, team management, virtual and real patient interactions and of-course the much valued human contact for this aging generation – one of the neglected population in India.

This touches my heart in multiple points- people whose elderly live alone , do not have motivation (despite affordability) to be proactive in health, do not know what to do in emergency, cannot use screening services, need physiotherapy, medicines with out troubling others… and the list can go on.

If you can share, I am curious to know,

How these volunteers are recruited.
What is their motivation?. How do you screen them for safety first? Then how long will they serve be as volunteers.

The same goes for home visits. How does one monitor who is going to whose home? The safety of the patient’s and their belongings during personal visits.

Just in case you any of the people are interested in meditation or more human contact, I would like to draw your attention to Free meditation centers, which I am part of for the last 10 years. I volunteer my weekends here. Calcutta has a meditation center-

Please free feel to use the free meditation, food and social interaction for any of the people who need help.
In case you need more assistance, please contact me, I can connect with local help.

My very bests
Madhuri

Attached resources:

Normil Manoucheca Replied at 8:27 PM, 20 Jun 2016

Thanks so much for invite. I'm a family medicine physician
It is very important to encourage them to like and reinforce the work that they do. Make sure adapted program and technology are available for them about their work

Rajib Sengupta Replied at 1:54 AM, 22 Jun 2016

I will try to answer the questions - but honestly you might be a little disappointed as we haven't able to yet create a well-oiled process, when it comes to the human resource part of it -

How these volunteers are recruited.
What is their motivation?. How do you screen them for safety first? Then how long will they serve be as volunteers.
The same goes for home visits. How does one monitor who is going to whose home? The safety of the patient’s and their belongings during personal visits.

The volunteers are recruited by word-of-mouth and personal reference. It obviously helped that all the co-founders of our organization, being born and brought up in Kolkata, has a very strong local connection and friend and family network. So often we find a reference from someone about a new volunteer - which comes with implicit safety.

The other thing is, unlike many other organization, our organization has been conceived by the Physicians and being executed by the Physicians. In India, at-least in Kolkata, healthcare is completely physician dependent. It doesn't depend on insurance, employer or anyone else. Yes, over the year, the "god" like status of a doctor has been reduced, but still they are the first and last line of defense.

Aside the "feel-good-factor", the volunteers, being part of such an organization, feels quite empowered - they have access to the best doctors of town as well as a network of physicians globally (the UDHC network which is executed by Dr Rakesh Biswas). Most of these doctors calendar is so full that , patient's get appointment after 2/3 months - but to the volunteers they are just a phone call away.

Now generally we have two types of home visit - a. Clinical, b. Non-clinical

a. The clinical part is done by our employed care providers - physicians, nurse, geriatric care specialist , technicians, physiotherapists etc . This part is well scheduled (we use a scheduling software, though it's rudimentary) , planned and obviously paid, on a no-loss-no-profit model.

b. Non clinical part is done by the volunteers. Generally, one volunteer is assigned to a senior citizen (or couple) in his/her locality and in the first day, he/she accompanies our geriatric care specialist (who does a thorough health check up, including a mobile ECG, BP , weight etc. In certain case, Nurse or Doctor may accompany also) . We request the volunteer to be in touch every weekend, but we cannot force them. So we just provide a courtesy call to check with them once say every two weeks - but just as an FYI .. we don't want to sound to be overbearing also - but, most of the volunteers visit the assigned families quite regulalrly - infact, some of the elderly now call them for any medical need instead of calling our emergency number :-) . So, this part is not planned and as you understand is quite ad-hoc dependent on personal connections.

The downside of this is the volunteer may move our of the city or may get burdened with his/her daily tasks/job etc

May be someday, we will be able to put some structure around it and may move from a volunteer model to a incentive based model. Though not sure whether that is a correct model or not?

While I want to put more structure and sustainability in place, one of our other co-founder (who has an humanitarian background as opposed to my science background), opinion is, we should keep this like this way only - where no structure exists and only the good nature (and may be the empowerment , well connected part , but no incentive) of a person, will keep them interested forever. To be honest, till now she has been proven right, but I am not sure, as our subscribed users are expanding, how long we will be able to go with this model ?

thanks,
Rajib

Monica Jumpp Replied at 1:41 PM, 22 Jun 2016

Thank you to all who have shared their personal experiences, local challenges, and potential solutions for meeting the needs of informal caregivers around the world. We would like to conclude the panel with closing remarks from Len Fishman, JD, Director of the Gerontology Institute at the University of Massachusetts Boston’s McCormack Graduate School of Policy and Global Studies. In this Q&A, Len reflects on last week’s discussion and addresses future considerations for supporting informal caregivers.

While the Expert Panel ends today, we encourage you to share your thoughts on these closing remarks in the discussion.

Attached resource:

A/Prof. Terry HANNAN Replied at 8:43 PM, 22 Jun 2016

1. "you might be a little disappointed as we haven't able to yet create a well-oiled process"-Rajib, the opposite is true. We are very pleased that you can outline the issues you have documented. Even in developed economies the ‘well-oiled’ process would be uncommon.
2. Re volunteers: These are issues in our societies as well and these were raised (much to my surprise) during a television discussion I participated in in Australia. (During question time of audience).
[ http://www.sbs.com.au/news/insight/tvepisode/saving-health ]
3. Also the safety of the volunteer which appears to have become an issue with an expanded welfare state. [ https://www.youtube.com/watch?v=1N8236ReWnM ]
4. Rajib, this is also a problem in developed economies with different manifestations and degree of influences. I believe that this is a challenge that has to be overcome and we should look at how HOT and eHealth can help us here. When Bill Tierney, myself and others began the eHealth project in Eldoret Kenya “we sat in the dirt, physically and metaphorically, with the end users as we implemented the e-record system. A feature of the project and its ultimate success was that the end users became the ‘clinical information managers’ and there were no doctors! The ultimate information management outputs drove the change from a hierarchical ‘doctor driven’ model of care to and end user, patient driven system. [Hannan T, Solving a Health Information Management Problem. An International Success Story. World Hospitals and Health Services. Vol. 51. No. 2. 2015 pp43-37. ]
I could write a lot more however I feel you should continue to be involved with this group and ASK questions and I am sure you will be supported.
Terry

Rajib Sengupta Replied at 1:08 AM, 23 Jun 2016

Thanks a lot Terry for this encouraging words. And great to connect with you again in this forum. We are extensively using Information Technology (specifically Opensource components, OpenMRS, DHIS2 being the two primary one) to make the process of Medical emergency and Geriatric Care efficient. But at the end everything boils down to the nuts and bolts and in the details of implementation - whatever we say, at-least in developing countries, healthcare is local. Sorry for being so infrequent, as was fighting too many battles on the field. I will surely try to be a regular.

Btw, realized that this thread is closed, but just a quick thank you note to all - we are really benefited - currently we are hogging all the resources , such as the handbook (http://web.mit.edu/workplacecenter/hndbk/) - and trying to come up with our version of the handbook in Bengali :-)

Madhuri Gandikota Replied at 8:32 PM, 23 Jun 2016

As Prof. Hannan had rightly said, the work and spirit at "MissionArogya" is great and worth emulating.
I am sure, you would be utilizing the recognition of Central Health Government Health Scheme options.

Best Regards,
Madhuri.

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Panelists of Supporting the Informal Caregiver: Implications for an Aging Society and GHDonline staff