Understanding someone with dementia is not easy. What are they thinking? How are they feeling? Why are they acting the way they do? These are fundamental questions that perplex professionals and quite simply leave families feeling confused, angry, guilty and helpless.
I have been a family caregiver and moved into the aging and dementia training space to help older adults and the growing numbers of families and professionals who are serving them. Because I experienced for myself the helplessness that caregivers feel, I can relate well to family members who feel isolated, lost and desperately seeking answers. Because I was a family member seeking help I know how little was out there 20 years ago. Guess what? There is still not enough support out there for families. We’ve come a long way, but because the numbers of caregivers have swelled so quickly, this will remain a huge challenge in the years to come. Educating, supporting and providing resources for family members who are caring for aging adults, especially those who are living with dementia, is all of our jobs.
Short of a soapbox moment, we need to get back to basics when it comes to dementia education. We need to provide powerful, effective and feasible means to deliver education that will help professionals and families in understanding someone with dementia. We must start with a foundational tool.
Our partner providers, those in elder care communities, home care, hospice, hospitals, community-based organizations, and others are consistently sharing with me their challenges – how to help families who are most often in crisis when they seek their services. My discussions with leaders across the spectrum of care share a common theme. Most, and I venture to say that is over 90% of families who are caring for someone with dementia, are in crisis when they transition to home care, an elder care community or reach out to a community-based agency for help. This is an alarming number of people who are exhausted, experiencing caregiver burnout – physically, emotionally and spiritually, and dealing with overwhelming guilt, anger and hopelessness.
Back to basics in dementia education is greatly needed. A tool that allows a family and professional to experience what their loved one is struggling with, and to then have someone to talk to that can walk them through the “why” of it all is enormously beneficial. It’s experiential training at its core. Stepping into their world for just a moment to allow caregivers to understand mom, or dad, husband, wife, resident or client is HUGE.
Quality education does not have to be complex. In fact, simple, effective and feasible should be in the mind of everyone who leads education and training. The next questions should be asked – is this providing a tool? We need applicable tools that we can walk away with and immediately make changes in how we care for another person. And these tools should not only improve the quality of life of the person we are caring for but reduce caregivers stress and make their jobs as care partners easier and more rewarding.
In short, we need strong foundational tools that are proven, successful and work for everyone – from care providers, to their staff and to the families and residents/patients/clients they serve.
Pam Brandon is President/Founder of AGE-u-cate Training Institute and a passionate advocate for older adults and those who serve them. She is the creator of the Dementia Live® Simulation and Empowerment Experience being embraced by caregivers worldwide.