Category Archives: Family Caregiver

How Can We Better Support and Educate Family Caregivers?

Family CaregiversAccording to estimates from the National Alliance for Caregiving, during the past year, 65.7 million Americans (or 29 percent of the adult U.S. adult population involving 31 percent of all U.S. households) served as family caregivers for an ill or disabled relative.   That is 65.7 million family caregivers who are desperately needing education, training, support and help with finding available resources.  We must do a better job as these numbers are increasing drastically with our aging population.

I am passionate about family caregiving needs.  Why?  Because over 25 years ago, I became a family caregiver myself.  With zero preparation and knowledge, little did I know that for the next 15 years I would be identified as a family caregiver for my aging parents.  But 25 year ago I didn’t identify as a caregiver for my parents.  I was raising my two young children for goodness sake!  I loved and respected my parents dearly so I was just doing what a loving child should do.  Little did I know the emotional, physical and spiritual challenges that comes with caring for an aging parent.  Would I trade  that time?  Absolutely not!  Did it make me a passionate advocate for anyone sharing the journey that I walked?  You bet.

I’m going to be very frank in saying that in the 25+ years that I have personally and professionally been in the family caregiving space, we have made some strides.  Not fast enough to keep up with demands.  We still have lots of work to do to include families to actively and  intentionally include them as part of the care team.

A new study lead by Jo-Ana Chase, assistant professor in the University of Missouri’s Sinclair School of Nursing, interviewed family caregivers of old adults who received home health care after a hospitalization to better understand caregiver’s experience regarding training and support.

She found that most family caregivers receive little formal training, and these caregivers need home health care providers to proactively engage them in planning and decision-making for more effective, coordinated care.

“Caregivers want to know how best to care for their loved ones, but they often feel like they are learning on their own,” Chase says.

As stakeholders across the spectrum of care, we will all see better outcomes by including families as a integral member of the care team.  But we must do so intentionally.  Are we including in our staff training the needs of families?  There are many complex issues that family caregivers face, and if staff do not understand their challenges, then they certainly cannot be expected to help them find solutions.

The weaknesses in our healthcare system have been made abundantly clear with the events of COVID-19.  At the same time, we have many opportunities to take from these lessons and make our organizations better.  This is the time that leaders must take a hard look at how effectively they are training and supporting their staff AND families.  Without both of these working together, we’ll continue to struggle in providing the quality of care that our older adults deserve.

Pam Brandon is President and Founder of AGE-u-cate Training Institute, a global company dedicated to quality aging and dementia care training.   AGE-u-cate’s latest initiative, REVEAL Aging Workforce training includes in all of it’s courses, staff training on the needs of families.  Pam may be reached at pam@AGEucate.com

 

 

#KnowMorePD – Elevating Awareness of Parkinson’s Disease

April marks Parkinson’s Awareness Month and the theme the Parkinson’s Foundation has chosen is #KnowMorePD to help elevate the public’s awareness of the disease and to share the resources available to those who are diagnosed with PD and their families

Parkinsons’s Disease (PD) is a complex movement disorder with symptoms that vary from person to person.  Some of these symptoms may include tremors, slurred speech,  a masked face, slow movement, and unsteady gait.  Because PD is largely misunderstood  by the general public and even healthcare professionals, it’s often frightening to see a person struggle with these symptoms.  And when people don’t understand what is happening, they generally react by becoming fearful or avoiding that person.

My mother’s journey with PD was one that she would often describe as life on a roller coaster.  One day, she would feel energetic and would go about her activities with ease, and the next day, exhaustion would overtake her, making the simplest tasks a monumental feet.

Along with the physical symptoms that others would see (and not understand), such as slowness of movement and unsteady gait, PD can wreak havoc on the inside.  My mother, like others  living with PD often struggled with depression, ill side effects from medications that are constantly in need of adjustment, and feeling self-conscious for unexplained  physical movements.  While PD can be managed with medications, it is a disease that progresses, so living with the unknown of what will happen to body and mind can lead to a constant fear of tomorrow.

As her caregiver, I too felt her emotions, because that is what caregivers do – take on the emotions of those they love.  So that ‘roller coaster’ was a ride we both shared.  It’s so very important for persons who are diagnosed with PD to seek education, resources and support – for themselves and their care partners and families.  With education comes empowerment, and with support comes the community of others to help with knowing you are not alone.

While there is so much advancement being done to treat PD and research that will hopefully lead to cure, we must also focus our efforts on elevating our awareness, education, resources and support for this mysterious and challenging disease.   Please support the work of the many national organizations who are working tirelessly to bring an end to PD, and to your local chapters and community organizations who help bring awareness and education to people like my mom and me who journeyed together in living with Parkinson’s Disease.

#KnowMorePD

Pam Brandon is President/Founder of AGE-u-cate Training Institute, a global organization dedicated to supporting aging services providers with caregiver training to improve the quality of life for older adults.

 

 

 

 

Home Sweet Home: Transforming Aging in Place

 

This is where people want to be.. home. It is time to examine changes needed for people stay safe and well with availability of appropriate care and services.

The Home Health/Care Industry quickly stepped up to the plate during the COVID pandemic.  The demand for services ballooned almost over-night, and providers responded with a fierce determination to serve those in need.

The challenges were not that different from long term care.  However, one might argue they were a bit more challenging due to the remote nature of the workforce.

COVID testing and protocol training required an enormous amount of coordination.  Another challenge was the lack of testing for the home-bound elders, and discovering that in desperation for care,  dishonesty of symptoms was a factor.

Transforming Aging in Place

There is no question that most people in need of care assistance wish to remain at home, for as long as possible.  The reality is that meeting this societal expectation is nearly impossible, for many reasons.

Workforce.  The United States is not investing in building a sustainable workforce.

Regulation.  The current regulations constrain homecare service delivery.  In Illinois, the Home Health/Services regulations were last updated in 2006.  This is a likely scenario in other states as well.

Training.  It is time to update content and delivery methods to meet the needs of a remote workforce.

Join in a round-table conversation with Susan Scatchell, Business Development Director of Gentle Home Services and Pam Brandon, President and Founder, AGE-u-cate.  Susan and Pam will discuss the challenges and opportunities to transform the experience of aging in place.

Register here for Home Sweet Home:  Transforming Aging in Place.  Wednesday, March 17, 1:00pm CST.

We hope you are able to join the discussion and help to re-imagine the future of this vital industry.

Julie has worked in Aging Services for over 30 years and has been a Licensed Nursing Home Administrator since 1990. She is a the Director of Grants and Consulting Projects and a Certified Master Trainer with AGE-u-cate Training Institute. In addition, she is an instructor and of Gerontology and Leadership in Aging Services at Northern Illinois University and lives in the Chicago Northwest Suburb of Mount Prospect, IL.

CARES Act Grants to Help Social Isolation among Elders

On March 27, 2020, the Coronavirus Aid, Relief, and Economic Security (CARES) Act was signed into law.   The CARES Act grants totally $955 million will support older adults and people with disabilities in the community during the COVID-19 pandemic.

Organizations that will have access to this funding includes a network of community-based organization such as Area Agencies on Aging, Centers for Independent Living,  senior centers, faith-based organizations and other community-based non-profit organizations that provide resources and services to help older adults and people living with disabilities stay healthy and live independently.   $100 million is earmarked for the National Family Caregiver Support Program to help expand services that aid families and information for caregivers who are providing support for their loved ones at home.

The COVID-19 pandemic has certainly brought to light the weaknesses of our current social support systems for older adults and their care partners living at home.  The much-needed CARES Act funding will help aging service providers and other community-based organizations  to reach vulnerable populations across the United States with resources to help meet the physical, emotional and spiritual needs of this group, among other at-risk population groups.

Social isolation and loneliness of older adults and their care partners did not start with the pandemic, but quarantine and social distancing  guidelines have intensified what was already a serious and growing problem with our fast-aging population.   While some initial studies pointed to a near 30% increase in loneliness during the first month of COVID-19,  it is  yet to be determined  the fall-out of long-term isolation for older adults now that we are moving into our 10th month of the pandemic.

Across the spectrum of care of our aging population, especially those living alone, COVID recovery must address the long-term effects of prolonged isolation and loneliness.  Some of these include mental health concerns, substance abuse, domestic violence,  anxiety, poor sleep, changed eating habits, and depression.

Thanks to technology,  many organizations quickly became adept at reaching these populations through Zoom and other conferencing platforms, helping to support at-home caregivers and provide meaningful activities to help alleviate the social isolation.  Innovation and creativity have led many of these groups to realize that post-Pandemic, these social platforms will be a permanent and important part of their community outreach education, resource and support services.   CARES Act funding will help support these initiatives and address the most pressing challenges of reaching elders and families who simply cannot leave their homes, even when there is no pandemic.  Rural elders and their care partners are especially an at-risk population.

With the hope of a vaccine bringing the pandemic to a slow-closure, social isolation and loneliness in older adults must be addressed as the public health challenge that it is.  The targeted funding from the CARES Act is the critical financial injection at the state and local level and hopefully will be the catalyst for additional long-term funding to support the needs of older adults and their families with expanded education, resources and support services.

For information on AGE-u-cate programs for older adults and their care partners that may be offered by Area Agencies on Aging and other community-based organizations click here.

Pam Brandon is President/Founder of AGE-u-cate Training Institute.      AGE-u-cate develops and delivers training and education for professional and family caregivers across the aging services spectrum.  Pam is a passionate advocate for elders and their caregivers.