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Vol. 10, No. 3 March 20, 2019

Dear Friends: March is Multiple Sclerosis Awareness Month. Multiple sclerosis (MS) is a disease that attacks the central nervous system. Some symptoms of MS include vision loss, incontinence, pain, difficulty walking, and slurred speech. The disease can be unpredictable, so MS caregivers may find their caregiving responsibilities changing over the course of years, or even daily, depending on how the disease affects the person they care for. FCA has a number of resources MS caregivers may find useful, including fact sheets on incontinence, the emotional aspects of caregiving, self-care, and transferring a person; a video series on medication management; relaxation exercises; online support groups; and our online resource center, FCA CareJourney. CareJourney provides quality information, support, and local resources unique to your caregiving needs and is available 24/7. Sincerely, Calvin Hu Education Coordinator edprograms@caregiver.org

QUOTE OF THE MONTH

“It always seems impossible until it ’ s done.”  — Nelson Mandela

WHAT’S NEW AT FCA

Innovations in Alzheimer’s Caregiving Awards Reception Join FCA, the Charlotte Symphony Orchestra , Down Syndrome Network, Inc. , and Mental Health America of the MidSouth for a reception honoring the 2018 Innovations in Alzheimer’s Caregiving Awards winners. These programs focus on improving the lives of adults with Alzheimer’s disease and their family caregivers through creative expression programming, diverse/multicultural community awareness, and promoting action towards improved policy. The awards are generously funded by The Rosalinde and Arthur Gilbert Foundation and Helen Daniels Bader Fund , a Bader Philanthropy . The reception is on Tuesday, April 16 from 6 p.m. to 8 p.m., at the Aging in America Conference  in New Orleans.The reception is open for everyone to attend. Appetizers and beverages will be served. Please click here for room and address information.

Contra Costa County Family Caregiver Survey  FCA will be drafting a report on the state of family caregiving in Contra Costa County and we need your help. Please take a moment to complete our five minute survey, to help us inform local politicians, service providers, and non-profit organizations on your caregiving needs and challenges as a resident of Contra Costa County. All answers given will be kept confidential. The final report will be presented during our special Caregiver Convening on Tuesday, June 25 (more details to follow).

Share YOUR Caregiving Story Do you want to share your caregiving experience with the media? We are looking for current and former caregivers living throughout the country interested in sharing their story. Your story of caregiving can help impact the lives of countless other caregivers and care recipients. If you would be interested in speaking with the media, please fill out our media request form: California Caregivers | National (49 States and Washington, D.C.). Thank you for your ongoing support!

Aging With Pride: IDEA IDEA ( Innovations in Dementia Empowerment and Action) is a program designed to improve the quality of life of LGBTQ adults living with memory loss and their caregivers. Participants will meet with a coach to learn exercises and strategies related to memory loss. The program includes nine in-person sessions and participants are compensated for their time. To be eligible for IDEA, the adult with memory loss or their caregiver must be LGBTQ. Participants must live in the San Francisco, Los Angeles, or Seattle metropolitan areas.  For more information, and to apply to participate in IDEA, please contact  Aging with Pride, (888) 655-6646, or  ageidea@uw.edu.

INFORMATION YOU CAN USE

Discharge Planning is a Family Affair Webinar Recording FCA’s free February webinar is available to view on our YouTube cha nnel. This webinar describes hospital discharge planning—who does it, what it’s intended to accomplish, and what a family caregiver should know to be fully prepared for the transition, whether a patient goes home, with or without formal home care, or to a skilled nursing facility for short-term rehab or further care. Topics for the webinar include typical family caregiver’s roles in discharge planning, a hospital’s obligation to patients and families to inform and educate about hospital discharge and post-discharge care instructions, and new research from the United Hospital Fund on choosing a post-acute care setting when going home is not feasible. Carol Levine directs the Families and Health Care Project at United Hospital Fund in New York City, where she led the development of Next Step in Care. A former caregiver for her late husband, she is a researcher, writer, and advocate for family caregivers. Her latest books are Navigating Your Later Years For Dummies (Wiley and AARP, 2018) and Living in the Land of Limbo: Fiction and Poetry about Family Caregiving (Vanderbilt University Press, 2014). She holds an MA from Columbia University in Public Law and Government. Kristina Ramos-Callan is a program manager at United Hospital Fund, where she works to promote improvements in the health care delivery system around patient and family experience, and to foster clinical-community partnerships. Kristina is also a life-long family caregiver. She holds an MA in Urban Studies from the Murphy Institute of the City University of New York.  The webinar slides are available to download on FCA’ s website .

With Dementia, More is Needed Than a Boilerplate Advance Directive Incapacity from an injury, illness, or dementia removes your ability to make decisions about your care, and places this responsibility in the hands of another person. Advance directives were designed to help ensure your wishes and values are respected in this situation. In a blog piece for the Conversation Project, author and journalist Katy Butler argues a standard, “boilerplate" advance directive may be insufficient when a crisis arrives and when family must make medical decisions that can be life or death. Butler also shares her own advance directive as an example of a document that clearly lays out her values and desires for medical care.

ARTICLES FOR CAREGIVERS

Nursing Home Ratings: Who Can You Trust? Choosing a nursing home can be a daunting prospect. Family caregivers want to make sure that the quality of the facilities, staff, and care provided meet their standards. In addition to the difficulty in attempting to sort the high quality facilities from the low, the annual cost of a single room in a nursing home averages $100,000. To assist caregivers in their search for a nursing home, Next Avenue’s Richard Eisenberg explains the two primary sources for reviews of nursing homes, what they measure, and how they differ. For more information, please read FCA’s Residential Care Options tip sheets.

How to Deal With Ambiguous Loss—the Grief You Feel When Closure Isn’t an Option Ambiguous loss is when a person is present physically, but gone mentally and psychologically. Dementia caregivers often experience these kinds of feelings. To help caregivers who may feel trapped by these emotions, Well+Good’s Sara Angle shares advice from psychologist Pauline Boss, the creator of the term of ambiguous loss.

CAREGIVERS CONNECT: SF BAY AREA EVENTS

Communicating and Advocating With Medical Professionals Navigating our health care system for the first time can be a daunting experience, often leaving family caregivers confused and frustrated by an unsympathetic and bureaucratic system. This workshop will help to clarify the current realities of the health care experience for caregivers. Participants will learn to use effective communication techniques and powerful communication tools to be a better advocate for the person for whom they are caring for with health care professionals. When: Monday, March 25, from 1 p.m. to 3 p.m. Where: Half Moon Bay Library 620 Correas Street, Half Moon Bay 94019 Cost: No charge Registration: Calvin Hu,  chu@caregiver.org, (415) 434-3388 x 313

Chăm sóc cho Người chăm sóc: Sức khỏe của mình là Sức khỏe của Gia đình (Caring for the Caregiver)  Thỉnh thoảng quên, thất lạc chìa khóa và không nhớ dùng từ ngữ nào khi nói chuyện có thể hay gặp ở người lớn tuổi. Mặc dù tuổi cao có thể bao gồm sự gia tăng các vấn đề về trí nhớ, nhưng chứng mất trí nhớ không phải là một phần bình thường của quá trình lão hóa. Tại buổi hội thảo miễn phí này, người chăm sóc sẽ tìm hiểu về sức khỏe não bộ, quản lý căng thẳng và cách ứng phó với những hành vi khác thường. Cần đăng ký trước và chúng tôi có thể giúp trông nom người thân của quý vị tại buổi hội thảo. Thời gian: Thứ bảy, ngày 6 tháng 4, năm 2019 từ 9:00 sáng đến 12:00 trưa Địa điểm: Trung Tâm Cộng Đồng Đông Nam Á — 875 O’Farrell Street, San Francisco 94109 Chi phí: Không tính phí và bữa ăn trưa sẽ được phục vụ. Đăng Ký: Vui lòng gọi điện cho anh Tony Trần, (415) 434-3388 x321, hoặc email ttran@caregiver.org.

Caregiver Retreat in Antioch FCA and the  Bedford Center are hosting a free retreat for family caregivers. Participants will enjoy a day of rest and relaxation, with activities that include massage, yoga, and meditation. When: Saturday, April 6, from 9:30 a.m. to 3 p.m. Where: The Bedford Center 1811 C Street, Antioch 94509 Cost: No charge Registration: Evie Christou,  echristou@choiceinaging.org, (925) 778-4171

CAREGIVERS CONNECT: SF BAY AREA PARTNER EVENTS

Dementia Caregiver Wellness Retreat Join the Presence Care Project, the Zen Hospice Project, FCA, and other sponsors, for a day of wellness, relaxation, and community. This retreat was created especially for you — the dementia family caregiver. Each activity was selected to help boost your resilience and sustain your wellness as you continue on your caregiving journey. The retreat will offer four 1 ½ hour sessions, including sound bath/restorative yoga, nature walks/practicing awe, improv for caregivers, and art, along with an opportunity to connect with other caregivers. Breakfast and lunch will be provided. Respite grants are available from the Alzheimer’s Association . Please contact the retreat organizers to apply. When: Saturday, March 30, from 9 a.m. to 4:30 p.m. Where: San Francisco County Fair Building 1199 9th Avenue, San Francisco 94122 Cost: No charge Registration: Click here

The Art of Aging Gracefully Join the JCCSF for a day of discovery with medical professionals, service organizations, and local businesses on insights, opportunities, and the challenges in staying vital, healthy, and fit. The Art of Aging Gracefully will include presentations by experts on topics including mindfulness, positive emotions, and chronic pain. Participants will also be able to attend a resource fair. When: Tuesday, April 9, from 9:20 a.m. to 3 p.m. Where:  Jewish Community Center of San Francisco 3200 California Street, San Francisco 94118 Cost: No charge Registration: Click here

21st Annual Updates on Dementia Conference Join the  Alzheimer’s Association for the largest  dementia-specific ​educational conference on the West Coast. Researchers and clinicians will present the latest research on the biological, social, psychological, and cultural aspects of aging and dementia, with an emphasis on practical applications.  When: Thursday, May 9, from 8 a.m. to 4:30 p.m. Where: South San Francisco Conference Center 255 South Airport Boulevard, South San Francisco 94080 Cost: $90 (early bird) general admission, $50 (early bird) seniors (age 65+) and students (with ID) Registration: Click here

Ninth Annual Caregivers Count Conference Join the Aging Services Collaborative for a conference for families and friends caring for a loved one. This conference will connect you to resources and information to help you on your caregiving journey. Conference topics include the healing power of humor, coping with grief and loss, and information on long term care options. Respite care grants are available through the Alzheime r ’ s Association. Contact (800) 272-3900 for more information. When: Saturday, May 18, from 8:30 a.m. to 2 p.m. Where:   Campbell Community Center 1 West Campbell Avenue, Campbell 95008 Cost: $15 (includes lunch) Registration: Click here

FCA FACEBOOK FLASH

FCA’s   Facebook page   offers articles and posts of interest for family caregivers. Please follow our page at www.facebook.com/FamilyCaregiverAlliance .

CAREGIVER POLICY

Do You Get Caregiving Policy Digest? Published monthly, this e-newsletter focuses on legislation and policy, caregiving research, and media coverage of caregiving issues. The recent, issue is available   here. Visit the  archive  for past issues and click  here   to subscribe.

RESEARCH REGISTRY

Professional Research Share Your Caregiver Story Alzheimer's Clinical Trial Opportunities - Preventive and Medications for Mild to Severe Alzheimer’s? Agitation? Aggression? Join a Clinical Trial Analysis of Language and Speech in Patients with Frontotemporal Dementia (FTD) Developing and Validating a New Caregiver Experience Scale Graduate Student Research Development of an Exergame for Caregivers of Individuals With Alzheimer's Disease or Related Dementia Coping Strategies Working Informal (Not Paid) Caregivers Use to Manage Both Caregiving and Working Asian Primary Family Caregiver for Dementia? The Mental Health Needs of Co-Resident Dementia Offspring Caregivers: An Interpretative Phenomenological Analysis

OUR SUPPORTERS: THANK YOU!

We would like to take a moment to extend a warm thank you to the many generous supporters who make the work we do possible through thoughtful donations to Family Caregiver Alliance. FCA has led the way in supporting family caregivers for over 40 years. Your donation makes all the difference!

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Connections Credits     Editors Calvin Hu Paria Dea Contributors Kathleen Kelly Calvin Hu Lana Sheridan Leah Eskenazi Executive Director Kathleen Kelly

FCA Board of Directors President Jacquelyn Kung Vice-President Dan Lieberman Treasurer Wyatt Ritchie Secretary Kathleen Raffel Amanda Breeden Athan Bezaitis Shruti Kothari Catherine Lelong Rajiv Mehta Chris Park Scott Peifer Tiffany Riser Keely Stevenson Celine Takatsuno