When to Call in Palliative Care: Four Essential Tips / Alzheimer’s and Other Dementias
The Caregiver's JourneyShow Notes
Are you feeling overwhelmed by the complexity of dementia care? Do you find yourself wishing you had more support navigating medical decisions and planning for the future? You’re not alone - and there’s specialized help available that many caregivers don’t fully understand.
We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we both wish we had understood what palliative care is and how to leverage it earlier in our journeys. Unfortunately, when palliative care was first explained to us, it was explained incorrectly, and neither of us took advantage of all the great things palliative care has to offer.
We recently spoke with Dawn Kolderman, a registered nurse and Senior Clinical Director of Palliative Care Services at Avow, who has more than 30 years of nursing experience with the last 20 focused on palliative and hospice care. Dawn shared invaluable insights about palliative care that we wish we had known sooner.
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Full Show Notes
Additional Resources Mentioned
Avow Palliative Care Link Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney
Takeaways
Tip 1: Understand What Palliative Care Actually Is
The first step is clearing up common misconceptions about palliative care.
Palliative care is a holistic approach to a life-limiting disease. This includes dementia — which is indeed a life-limiting disease.
The key difference between palliative care and hospice care:
Palliative care patients are at the beginning of their journey and are still seeking aggressive, curative treatment while seeing all their providers and specialists Hospice care patients are generally at the end of their journey, no longer seeking aggressive treatment, and focusing on comfort care.
Palliative care is an additional supportive layer of care that works collaboratively with all your existing medical providers. Most importantly, palliative care focuses heavily on the caregiver.
Tip 2: Call Palliative Care In — Here’s How
Many caregivers don’t realize how accessible palliative care is or when to call it in. The answer is simple: the earlier, the better.
Tip 3: Understand the Goals of Palliative Care
Palliative care has specific, comprehensive goals that address both immediate and long-term needs.
Primary goals include:
Relieving physical symptoms first
Supporting the caregiver and family
Education and collaboration
Advanced care planning (ACP). This crucial component involves sitting down with the patient, caregiver, and family to discuss important decisions while your loved one can still participate in these conversations.
Tip 4: What Else You Need to Know About Palliative Care
There are several important aspects of palliative care that many people don’t realize.
Your loved one won’t look sick. The goal is to help them live their life fully.
Early intervention builds stronger relationships.
The nurse navigator’s role is specifically to connect you with community resources you might not know about.
Read More in This Blog here
More from The Caregiver's Journey
When someone gets a diagnosis of dementia, there are two people who need to be cared for: the person living with dementia and you, the primary caregiver.” Nancy Treaster
Do you leave your loved one’s doctor’s appointments feeling intimidated or confused instead of empowered? Do you wish you had a clearer role in shaping their care? Many caregivers feel this way, and there is a better way to approach these visits.
Did your loved one recently receive a diagnosis of dementia? Have you already worked through the first six steps of the Navigating Dementia Caregiving Roadmap? If so, you’ve built a solid foundation, and it’s time to keep going.
“There’s no perfect option out there, and there’s no community that’s going to check every single box.” — Kelly Graffius
"Two words have been the foundation of every decision I made across all of my caregiving roles — safe and happy. Before every choice, I would ask, does this help my loved one be safe? And does this support them being happy?" — Sue Ryan