Vol. 14, No. 8

August 2023

Dear Friends:

Incontinence is when a person is unable or has difficulty controlling their bladder or bowel. This can be a disruptive, embarrassing, and stressful ailment for the person affected, as well as for their caregiver. Incontinence may also be a particularly difficult challenge for a person caring for someone with dementia. FCA has a number of resources to help caregivers provide incontinence care including a general fact sheet on incontinence, a tip sheet on incontinence and dementia, and finally a multi-part video series produced by the Home Alone Alliance (FCA is a Founding Partner of the Home Alone Alliance). A fact sheet on incontinence is also available in Spanish, Tagalog, Vietnamese, and Chinese (traditional and simplified).

Sincerely,

Calvin Hu

Education Coordinator

edprograms@caregiver.org

Coming Soon! The Application Period Opens on Sept. 8 for the Innovations in Alzheimer’s Caregiving Awards, Which is now in its 16th year.

The Rosalinde and Arthur Gilbert Foundation, Bader Philanthropies, Inc., and Family Caregiver Alliance recognize three organizations that are delivering dynamic programs addressing the needs of family and friend caregivers and those they care for living with Alzheimer’s disease or a related condition.

Learn more about the awards, read the awards FAQs and find details about awardees from previous years. 

The application window will be open from September 8 through October 6, 2023.

Please note, the application period will not be extended beyond this date.

Check the main Innovations in Alzheimer’s Caregiving Awards page for full details after that date.

California Paid Family Leave Resources -- Newly Updated

Paid Family Leave is unemployment compensation disability insurance for workers who suffer a wage loss when they take time off to care for a seriously ill family member or bond with a new child. Caregivers looking for answers or additional details can get up-to-date information on our Paid Family Leave Resources page.

California Community Assessment Survey for Older Adults (CASOA)

The Community Assessment Survey for Older Adults (CASOA) has been launched for Californians who are 55 years and older. All eligible Californians are urged to complete this survey to provide feedback on their needs and preference, which will shape future programs, services, and spending priorities.

CASOA is available online in multiple languages - English, Spanish, Cantonese, Mandarin, Korean, Tagalog, Vietnamese, Hindi, and Arabic. If you need any technical support in accessing the survey, please email: casoa@polco.us. For any other questions about the survey, please call (916) 970-9948.

New! LGBTQ Caregiver Support Group (online)

In partnership with Openhouse, FCA is proud to offer this new support group for LGBTQ caregivers of those with a variety of illnesses, disorders and challenges. It offers a welcoming space for caregivers to discuss the unique stresses, difficulties and variety of experiences that come with providing care in this community.

Open to participants who live in the San Francisco Bay Area (Alameda, Contra Costa, Marin, San Francisco, San Mateo or Santa Clara counties). For more information or to register, contact Adriana Sanchez.

When: 3rd Wednesdays of the month, 4 to 5:30 p.m. (PT), via Zoom

Young Adult Caregivers Support Group (online)

This group is designed for family caregivers under the age of 40 who are caring for someone who is: 1) 60 or older with any diagnosis, or 2) age 18 or older with an adult-onset cognitive or neurological impairment. The Young Adult Caregivers Support Group meets twice monthly.

Open to participants who live in the San Francisco Bay Area (Alameda, Contra Costa, Marin, San Francisco, San Mateo or Santa Clara counties). To register, contact FCA at (415) 434-3388 x331 or email bayareaintake@caregiver.org.

CareNav is now Easier to use and More Personalized With new Update

CareNav, our secure online service, offers quality information, support, and resources for family caregivers of adults with chronic physical or cognitive conditions such as Alzheimer’s, stroke, Parkinson’s, and other illnesses.

When you log into CareNav, you'll find a whole new look with more personalized tools and resources to help you along your caregiving journey. And all of it is organized in an easy-to-navigate dashboard. Get access to our library full of videos, fact sheets, infographics, and more, available 24/7, in one convenient location. Gather and organize resources relevant to you. CareNav is now easier to use, and it’s still free and secure.

No matter what stage of the caregiving process you’re in, CareNav connects you to the resources and support you need. To learn more, click here or register here.

Hot Weather Tips

Normal physiological changes that occur later in life, medications, or a cognitive impairment can inhibit an older person’s ability to tell if they are suffering from unhealthy temperatures. Because of this, caregivers of older adults face additional challenges during warmer months. Read FCA’s tips on how to keep a loved one cool, and how to spot the warning signs of a heat related problem.

Depression and Caregiving

Caregiving can be tough, exhausting, and stressful work. While not all caregivers live with depression or will become depressed, it is a normal response to the demands of caregiving. For family caregivers who are, or think they may be depressed, FCA’s Depression and Caregiving fact sheet identifies the symptoms of depression, explains certain caregiver concerns, and gives advice on treatment options, alternative therapies, and how to pay for treatment.

Dementia, Caregiving and Controlling Frustration

Frustration is a normal response to the very difficult job of dementia caregiving. However, extreme frustration is physiologically and mentally unhealthy, and can even lead to being physically or verbally aggressive. This FCA Fact Sheet will discuss some of the warning signs of frustration, how to remain calm, how to modify your thoughts, and other strategies to keep frustration under control.

Caregiver Resource Center Classes 

The California Caregiver Resource Centers (CRC) serve families and caregivers of adults affected by chronic and debilitating health conditions (FCA is the San Francisco Bay Area CRC). FCA is now hosting a calendar of classes, workshops, and events compiled from each of the 11 CRCs and open to family caregivers across the country.

For more information on September's events, please click here.

Waiting for Medical Test Results: Dealing With the Anxiety, Uncertainty

When a family member or partner appears seriously unwell, it is often a medical test that will determine the mildness, or severity of their condition. Sharon Jayson, writing for AARP, shares advice on how caregivers can manage worry while waiting for test results. This article features expertise from FCA Clinical Services Director and Family Consultant Christina Irving.

A New Medicare Proposal Would Cover Training for Family Caregivers

Family caregivers are often called upon to perform complex medical tasks, but very few are trained in how to perform them. A new Medicare proposal would correct this oversight by paying for family caregiver training in these medical tasks. Judith Graham, writing for KFF Health News, explains that the details have yet to be finalized but this proposal is expected to pass and be implemented by next year.

Preserve Family Relationships With Courageous Conversations

Being a caregiver can be a life changing event. These changes may be professional, financial, emotional, and often family relationships are also affected. Caregiving may lead to arguments, jealousy, tension, stress, and resentment among family members. Next Avenue's Myrna Marofsky gives advice on how to have meaningful and open conversations to preserve and maintain good family relationships.

CAREGIVERS CONNECT:

FCA EVENTS

Hiring A Caregiver Workshop

You won’t want to miss this free workshop! Participants will learn about: hiring, compensation, and recordkeeping; navigating IHSS and Medi-Cal; preventing physical and financial abuse.

This special workshop will be offered (repeated) on three dates in English, and on each of these three dates, an additional language interpretation will be available (Tagalog, Mandarin, and Spanish):

Thursday, September 7, 3:30 to 5 p.m. (in English with Tagalog interpretation)

Wednesday, September 20, 3:30 to 5 p.m. (in English with Mandarin interpretation)

Thursday, September 21, 3:30 to 5 p.m. (in English with Spanish interpretation)

Presenters:

Natalia Ramirez Lee, Esq.

The Women’s Employment Rights Clinic (WERC)

Robert Nuddleman, Esq.

Nuddleman Law Firm, P.C.

Jennifer Pardini

Legal Assistance for Seniors

Arabelle Malinis, Esq.

California Advocates for Nursing Home Reform

When: September 7, 20, and 21, from 3:30 to 5 p.m. (PT)

Where: Online

Cost: No charge

Registration: Click here

This workshop is funded by Metta Fund and community partners including FCA.

Caregivers Count! 13th Annual Conference

Caregivers Count is designed for families and friends caring for their loved ones. This four-part online conference features expert speakers covering wide ranging topics to support caregivers. This year’s topics include: Making Tender Memories, Anticipatory Grief, Caring for Someone who did not Care for you, and Effective Communication with Medical Providers.

Schedule

September 9: Making Tender Memories

September 16: Anticipatory Grief

September 23: Caring for Someone who did not Care for you

September 30: Effective Communication with Medical Providers

When: September 9, 16, 23, and 30, from 10 a.m. to 12 noon (PT)

Where: Online

Cost: No charge

Registration: Click here

Caregivers Count is planned by a coalition of local nonprofit agencies and businesses interested in supporting family caregivers and sponsored by agencies including FCA.

CAREGIVING POLICY DIGEST

Caregiving Policy Digest is a publication of the National Center on Caregiving, a program of Family Caregiver Alliance. The newsletter offers a fresh look at the rapidly changing world of caregiving policy―at the local, national, and international levels.

You’ll receive briefings on key legislation, news on innovative public programs, and the latest information on caregiving and long-term care policy at national and state levels. Subscribe here.

Click here to view archived issues of Policy Digest.

Professional Research Listings

• Are you a caregiver of an adult over 50 years old, and willing to try Routinify services at no cost?
• Are you caregiving for your partner who has early-stage Alzheimer's disease? Receive up to $190 for participating in our study!
• Are you or a loved one living with early symptoms of Alzheimer’s disease or mild cognitive impairment?
• Inviting Caregivers of Persons Living with Dementia Loss to Participate in an Ongoing Study
• Inviting grandchildren, nieces/nephews, siblings, and step-kin to participate in a telephone-based dementia caregiving study
• Learning from Family and Friends Who Helped with Dementia Care
• LGBTQIA+ & non-LGBTQIA+ Caregivers Needed: Parkinson’s Research
• Life Enhancing Activities for Family Caregivers (LEAF) (SP0044459; NCT03610698)
• Nationwide Study for Understanding and Improving Surgical Decision-Making for Persons Living with Dementia, their Family Caregivers, and their Providers – Patients and Caregivers Needed
• Participate in a Study About Dementia and Caregiver Stress
• Recruiting: Finding Ease in Caregiving 8-Week Class

Graduate Student Research Listings

• Characterizing Risk Factors for Burden in Caregivers to Individuals with Alzheimer's Disease and Frontotemporal Dementia
• Help-Seeking Behaviors and Service use for Mental Health in East Asian American Informal Caregivers of Persons Living with Dementia
• Measuring Emotional Distress in Caregiver and Patients with Primary Brain Tumors
• The Couples Lived Experience Study - Boston University
• The Impacts of Caregiving and Social Support on Stress for Multiple Sclerosis Caregivers

BOARD OF DIRECTORS

President: Ian Tong

Vice President: Karen Sperling

Treasurer: Keely Stevenson

Secretary: Amanda Breeden Warner

Athan Bezaitis, Amber Christ, Deborah Kan, Shruti Kothari, Mary Ellen Kullman, Scott Peifer, Tiffany Riser, Wyatt Ritchie, Marda Stothers, Celine Takatsuno.