“Palliative care is a holistic approach to a life-limiting disease that focuses not just on the patient, but on supporting the caregiver and entire family through education, collaboration, and comprehensive planning.” Dawn Kolderman
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 family 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, when — and how — to leverage it in caregiving 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.
Let’s explore four essential tips about palliative care that can transform your caregiving experience.
Tip 1: Understand What Palliative Care Actually Is
The first step is clearing up common misconceptions about palliative care. Many people confuse it with hospice care — but they are two completely different levels of care.
Palliative care is a holistic approach to a life-limiting disease. This includes not just cancer, cardiac, or pulmonary diagnoses, but also dementia — which is indeed a life-limiting disease. Dementia is a large umbrella that includes Alzheimer’s, Lewy body dementia, and many other types of dementia.
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 not an either-or situation. It’s an additional supportive layer of care that works collaboratively with all your existing medical providers. The team collaborates with patients, caregivers, and every provider to build a comprehensive life plan.
Most importantly, palliative care focuses heavily on the caregiver. It addresses caregiver burden and stress, helping you help yourself while caring for your loved one.
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.
When to call palliative care:
- Once your loved one is seeing a neurologist for dementia
- When you and your primary care doctor notice cognitive changes
- Early in the diagnosis, even before seeing specialists.
How to access palliative care:
- You can self-refer — no doctor’s referral required
- Referrals also come from primary care doctors, specialists, hospitals, and memory care centers
- Look online for palliative care organizations in your area
- Many hospice organizations also offer palliative care services
- Check with memory care centers and assisted living facilities, as many palliative care providers do community presentations.
What to expect financially:
- Covered under Medicare Part B like any doctor’s office visit
- Private insurance and Medicaid also cover palliative care
- Financial assistance and sliding scale options available
- Organizations work with families regardless of ability to pay.
The palliative care team consists of a medical provider (advanced practice nurse or doctor), registered nurse, nurse navigator for community resources, licensed clinical social worker for psychosocial needs, and a chaplain for spiritual support.
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. When someone is experiencing physical pain, it’s impossible to address psychosocial or emotional needs. The team ensures your loved one is comfortable before moving to other areas.
Supporting the caregiver and family. The team recognizes that caregiver burden and stress are enormous. They invite all family members to understand who the players are and who can step in to give the primary caregiver breaks.
Education and collaboration. There are many misconceptions about dementia, and palliative care ensures everyone in the family is on the same page. Every person’s journey is different, even with the same diagnosis.
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.
Advanced care planning covers:
- Healthcare surrogate designation (primary and secondary)
- Artificial nutrition and ventilation preferences
- End-of-life medical planning
- Financial considerations
- Funeral arrangements and personal wishes.
This process uses tools like the “Five Wishes” document, which includes everything from account numbers and passwords to music preferences for celebrations of life. These conversations, while not easy, are facilitated by trained professionals who help families navigate these important decisions with dignity and even some laughter.
This is not a one-visit process. The social worker starts the conversation, provides appropriate documentation (including special materials for veterans or Native Americans), and schedules follow-up visits to continue the discussion. These plans can also change as circumstances evolve.
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. Most palliative care patients are working individuals raising families and contributing to their communities while managing a life-limiting diagnosis. The goal is to help them live their life fully.
Early intervention builds stronger relationships. The earlier you engage with palliative care, the more time the team has to build relationships of trust, respect, and dignity with your family.
Community resources are available. The nurse navigator’s role is specifically to connect you with community resources you might not know about. There are often numerous support services available that families simply aren’t aware of.
Children are included and supported. Many families now have multiple generations living under one roof. Children don’t understand why grandpa knew their name this morning but is confused this afternoon. Palliative care organizations may have specialized programs (like Avow Kids) that help children understand and become part of the family support system.
You are your loved one’s best advocate. Speak up for yourself and your loved one. If something is a burden, the team needs to know. Don’t let stress boil over — communicate your needs and concerns.
The team is your resource for questions. You don’t need to make a doctor’s appointment for every question. The palliative care team can provide information, guidance, and peace of mind throughout your journey.
Taking Action
Palliative care is about helping individuals at the beginning of their journey prepare for the end of their journey, but more importantly, it’s about helping them live fully along the way.
If you’re in Southwest Florida, you can visit avowcares.org and look for their Dementia Care page. For caregivers elsewhere, search online for “palliative care” in your area. Don’t be confused if organizations have “hospice” in their name — many provide both palliative and hospice services.
Collaboration, education, and advocacy are key components of successful palliative care. The earlier you engage with these services, the more support you’ll have throughout your caregiving journey.
Studies show that caregivers who have comprehensive support systems experience less burnout and higher satisfaction in their caregiving role. Palliative care provides exactly this type of comprehensive support — not just for your loved one, but for you and your entire family.
Don’t make the same mistake we did by missing out on this valuable resource. When palliative care is explained correctly and accessed early, it can transform your caregiving experience from one of isolation and overwhelm to one of support, education, and collaborative planning.
We cannot emphasize enough: you don’t have to navigate this journey alone. Palliative care is there to help you help yourself while providing the best possible care for your loved one.
Have you used palliative care services in your caregiving journey? What was your experience? Please share your insights on our Facebook or Instagram pages to help other caregivers understand this valuable resource.
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