The take-aways below are written for the benefit of unpaid family caregivers and paid direct-care workers who lack the time and/or resources to attend care conferences. They represent a summary of my personal notes & highlights from these events. I write in the spirit of Robin Hood – taking knowledge from the ivory towers, heads-of-systems, thought-leaders, change-agents and (mostly) closed doors to your family room computer, home office, or mobile phone. May this information support your self-care and your care of a loved-one.
This information has national and local (Greater Boston/MA) value and is current as of November 2013. Specific names of people and programs may change over time. Please share these take-aways with family and friends who may benefit.
Caregiving/Caregiver conferences I attended this fall included:
1. HESSCO 2013 Caregiver Day of R+R, September 24, 2013, Wrentham, MA
2. Aging and Disability Resource Consortium of the Greater North Shore 2013 Conference, September 26, 2013, Danvers, MA
3. ARCH 2013 National Lifespan Respite Conference, October 15-17, Boston, MA
1. Take-Aways from HESSCO Caregiver Day of R+R 2013
– Lynn Serper EdD – The Serper Method: Learn activities you can do to promote your brain health and personal relationships!
– Nancy Emerson Lombardo PhD – Memory Preservation Nutrition Program: Learn the good foods to eat to be at your best throughout your life! Dr. Nancy Emerson Lombardo has noticed that in general white foods are bad for you, dark foods are good for you. Sugar (in all forms – white, dark, honey, syrup) is our worst enemy. In the workshop, she shared many good foods (dark greens, herbs, all fruits and veggies) that help to keep a healthy zoo in the gut. A healthy zoo helps to rid toxins, and promotes a clean system and clear mind.
– Patricia Gavin and Terry Tomasello of HESSCO shared several writing techniques that help caregivers to share their experiences. One technique was writing six-words to express yourself. My example: caregiver health effects… millions are unaware.
2. Take-Aways from ADRCGNS Conference 2013
– Living with M.S.: Wendy Booker turns challenge into opportunity. This keynote speaker shared how she has completed marathons and topped mountains despite her illness. “Find your passion – when your mind is doing something you love, that’s when you hear your soul… you get ‘you’ back.” MS Foundation – MS Focus magazine published 4x/yr. “MS takes away our goals and dreams… redefine your goal, find a different route.”
– Movie: Confessions of a Dutiful Daughter
– Chronic Disease Self-Management Education Programs (CDSME), developed by Stanford U., are six-week programs that empower people living with chronic disease and their caregivers. These programs are being offered in MA (and other states) through the state-based Executive Office of Elder Affairs. Ana Karchmer is the MA Coordinator. Ask your local Senior Center or Council on Aging about availability of these programs in your area.
– Mary Carido spoke about the Chronic Pain Self-Management Program. A 6-session program aims to teach action planning and break the symptom cycle of pain. She reminded the audience that pain is subjective – it can have physical, mental and spiritual expressions. Chronic pain is defined as pain lasting longer than 3-6 months.
– Cancer – Thriving & Surviving Program: a 6-week workshop for cancer survivors & caregivers.
– Culturally-sensitive programs at Greater Lynn Senior Services are reaching Cambodian family members (Khmer focus groups).
– National Aging and Disability Resource Centers (according to Joe Lugo, Administration for Community Living) are in all 50 states at 500 sites, serving 70% of the U.S. population. Ask your local Senior Center or Council on Aging if or what they know about this and how you might access this resource.
– Joe Lugo’s tips: “The only disability in life is a bad attitude.”; “Leaders- put yourself at risk.”; People should ask themselves, “What do I want in my long-term services & supports?”
3. Take-Aways from ARCH National Lifespan Respite Conference 2013
– New Hampshire: Wheelchair-Accessible garden trails are available at Crotched Mountain in NH. Thanks to Sharon Kaiser of Concord, NH for this recommendation.
– Texas: Morgan’s Wonderland – The World’s First Ultra Accessible Family Fun Park is in San Antonio, TX. Reservations are required. Thanks to Kristin Christensen of Austin, TX for this recommendation.
– Florida: Miami Lighthouse for the Blind offers unique programs for people who are blind and have low vision. Thanks to Jean Sherman of the U. Miami for this recommendation.
– Book: The Accidental Caregiver’s Survival Guide: Your Roadmap to Caregiving Without Regret, by A. Michael Bloom
– Book: The Revised Fundamentals of Caregiving, a novel, by Jonathan Evison
– Keynote Speaker: Ellen M. Howe, MA DDS Commissioner: Respite allows caregivers to work, attend support group, do household chores, and obtain stress-relief. One challenge is finding quality staff to provide the respite support. The MA Lifespan Respite Program addresses similar needs across ages & disability groups.
– Keynote Speaker: Ann Hartstein, MA Executive Office of Elder Affairs: There are 11 ADRCs in MA and 11 Independent Living Centers, serving all ages and incomes. People living with Alzheimer’s/Dementia in MA are estimated to be 120K. There are 320K Alz/Dementia family caregivers for this group, and 141K are also employed. Many grandparents are raising grandchildren. An estimated 858K family caregivers provide care at homes in MA.
– Keynote Speaker: Rosalie Edes, Assistant Secretary, MA Executive Office of Health & Human Services: 4 in 10 adults are full or part-time caregivers. Systems of care for caregivers impact workplaces, businesses, cost of healthcare is 8% more for caregiving employees, costing employers 13.4B/year. MetLife/National Alliance for Caregiving 2010 Study showed caregivers experience higher rates of depression, heart disease, health risk behaviors. Carers ranging in age from 18-39 experienced higher rates of hypertension, kidney and heart disease. Mass Lifespan Respite Coalition provides information, education, and supports for caregiver respite. We need an “interstate highway of respite support.”
– Workshop: Michael Bloom’s 7 tips: 1. Release Crisis Mode 2. Overtake Conflict 3. Achieve Buy-in 4. Deliver Greatness 5. Magnetize & Motivate Talent 6. Accept Intuition 7. Put chocolate in your pill box. Develop the passion and purpose for your life beyond caregiving. Tune in: www.caregivingpowerhour.com
– Workshop: Social Role Valorization: social inclusion of people with disabilities
– Workshop: Advocates Inc. is a private, non-profit agency meeting the unique needs of elders, families & individuals with a broad range of abilities for over 35 years – serves 20,000 individuals across eastern & central MA via family support centers, supported home care, and trainings.
Keynote Speaker: Richard Antonelli, MD, Harvard Medical School and Children’s Hospital Boston: recommends book: Privileged Presence. Related to the need for health care reform, he has learned that 1/3 of health services in the U.S. are a. the wrong service b. redundant or c. harmful. Also, the cost of behavioral health illness is up to 400% higher than illness such as heart disease or cancer.
– 4 in 10 adults are caring for an adult or child with long-term illness.
– Panel Speaker: Joyce Pohlman, Lifespan Respite Texas: Take Time Texas website – educational, information, best practices, inventory of respite services, private & non-profit providers.
– Panel Speaker: Judth Gonyea PhD, Boston University, says “families are a shadow workforce.” Latino families impacted by Alz/Dementia are the fastest growing population. We are expecting a 6-fold increase by 2050. By 2050, 20% (1 in 5) seniors will be latino. 80% of elderly latino women live with relatives.
– Panel Speaker: Joan Hyde PhD, U. Mass Boston Gerontology Institute, is a policy analyst (political philosophy is her specialty). The 3 main questions since Aristotle are: 1. Who gets what? 2. Who decides? and 3. Who pays? She recommends the book she helped to edit: Staying Put: Adapting the Places Instead of the People
– Panel Speaker: Emily Kearns PhD, Kearns Consulting, Andover, MA: Partner with businesses who can use their Corporate Social Responsibility dollars and volunteers to support the respite movement.
– Workshop: “Coaching Family Caregivers along the Freedom Trail to Respite” (optimizing supports in faith communities) Susan Robinson LMSW, executive director, South Carolina Respite Coalition, Columbia, South Carolina: Coaching is a respite ministry. If your child has special needs, you have special needs. Invite your church friends and neighbors to become involved in the early stages of dementia (well before the late stages of physical decline). Caregiver Wish List – Make a big list and let your helpers choose.
– Website: Massachusetts Lifespan Respite Coalition: provides information and education: Who is a caregiver? What is respite? Who provides respite? How to pay for respite?
Shared with compassion,
P.S. If you would like to request a change/correction to the above information, please email me at mary at marymacmissions.com.