Author:
Kim Warchol, President and Founder of DCS at CPI
Have you ever cared for someone with dementia? Do you have a loved one or neighbor who has Alzheimer’s disease? Whether someone is living with, or dying with dementia, we are all keenly aware of its impact.
Sometimes a person is otherwise healthy but dementia comes along and strips away their cognitive abilities impacting memory, engagement, safety, function and quality of life. Or if at end-of-life on hospice, dementia can complicate an already very difficult process by making it more challenging to connect with loved ones and care providers at such a crucial time.
Last month I had the good fortune to meet many on the leadership team for Agape Care Group. Agape provides services wherever the place of residence is for the people in their care, helping patients and families to navigate the end-of-life journey. Agape’s vision is, “To be recognized as one of the country’s premier care providers known for our superior patient-family experience, delivering the highest quality care, and building a culture of excellence”.
Along with Susan Driscoll, President of Crisis Prevention Institute and Lana Dorffer, Director of Dementia Care Specialists we visited the Agape leadership team to celebrate and recognize Agape’s commitment to preparing their staff to provide the highest quality care to those with dementia, at end-of-life. We delivered a framed certificate recognizing their extensive commitment, earning a Dementia Capable Care Workforce Leader (DCC-WL) recognition for multiple locations within their organization.
As a part of our visit, we had heartfelt, honest conversation about why we do what we do, where we can do better, and why we must. As their leadership explained, the majority of the population they serve has some form of dementia and many are in the more advanced stages. Their goal is to provide the very best specialized dementia care which includes, preparing an empathic staff with person-centered, dementia care knowledge and skills, delivering unique offerings that make a real difference, and educating and supporting loved ones along the journey.
First, I’d like to say how rare it is to find such a cohesive team who rallies around their mission and has clarity and steadfast commitment to their goals. Our dementia care training is a part of the success puzzle but equally important is this team’s ability to articulate goals and identify the comprehensive components for true success, which emphasizes making a difference for all they serve.
It was truly a joy to recognize Agape for their commitment to making life a better place for those with dementia and their loved ones. We appreciated and valued the brainstorming session around what constitutes great dementia care. It is so enjoyable and refreshing to lock arms as partners on this quest.
What sprouted in our conversation was the awareness of our mutual commitment to not just serving the person with dementia, but to also highly prioritize and support their loved ones.
It’s often said that Alzheimer’s disease is a disease that impacts far more than the person diagnosed. The amount of stress, burden, and fear that spreads to others is so significant that the family caregiver may become overwhelmed and ill as a result. In fact, it’s not unusual for an elderly family member, who is providing a heavy burden of care, to pass before their loved one with dementia.
Studies show caregivers face burnout, high rates of depression, anxiety, and physical health decline. These are often a result of things such as grief as their loved one may no longer remember or connect with them, a high care burden due to functional dependence, and challenges brought on by common distress behavioral challenges such as agitation.
We agreed loved ones are one of the most vital and vulnerable individuals in the end-of-life care circle, necessitating a holistic, compassionate approach including the following:
- Families benefit from education that helps them to know what to expect along the journey and within the stages of dementia.
- They need someone to compassionately listen, support, and guide as they struggle with loss and the distress behavioral symptoms.
- They need someone to relieve their care burden so they can simply be a spouse or child again.
- They need to know how to connect and engage with their loved one to experience meaningful moments during their time together, especially when dementia takes away language and memory.
We agree that skilled, compassionate staff who are empowered with tools and resources will ease burdens and strengthen connections that enhance the quality of life for all. At this end-of-life phase, every meaningful moment really matters.
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March 2026
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