Who knew understanding hospice could make such a difference in providing comfort and care for our loved ones?

As caregivers for our loved ones with Alzheimer’s and other types of dementia, we’ve learned there are many misconceptions about hospice care. Nancy Heyerman and Brenda Kizzire collectively bring more than fifty years experience as hospice nurses to help clarify what hospice actually is — and when to consider it.

Before sharing the four tips they’ve developed to help us navigate this impactful transition in our caregiving journeys it’s helpful to understand what hospice means, because many people think hospice is solely about dying.

Nancy Heyerman explains:

In reality, hospice is more about living the best you can until you die, having that time period at the end of life to feel the best you can, while having time to say your goodbyes.

Key Points About Hospice:

• Eligibility begins when someone has symptoms that qualify them for hospice care.
• Some patients live for years on hospice care.
• The focus is on comfort and quality of life.
• Hospice helps patients live better, and sometimes even longer.
• It’s about symptom management and support for both patient and family.

Through their experiences, Nancy and Brenda developed four important tips to help you navigate this impactful transition in your caregiving journey.

Tip 1 — Assess Your Care Receiver Using the Clinical Frailty Scale

One of the most important tools in determining when hospice might be appropriate is the Clinical Frailty Scale (CFS). This helps track changes that might indicate a need for hospice care.

Things to Monitor:

• Weight loss patterns
• Ability to feed themselves
• Changes in mobility (e.g., walking distance decreasing)
• Transition from walking to wheelchair
• Changes in activities of daily living
• Increased anxiety or behavioral changes
• Decreased verbal communication
• Mental, physical, behavioral, emotional ability changes

Nancy’s Experience:

With my husband, we noticed changes but weren’t tracking them systematically. This made it harder to communicate the decline to healthcare providers. Having a structured way to monitor these changes would have been invaluable.

Tip 2 — Begin Documenting

While this tip might seem obvious, proper documentation makes a significant difference in getting hospice care approved.

How to Document:

• Keep a calendar with regular weight measurements.
• Note changes in mobility and daily activities.
• Track behavioral changes.
• Record any falls or incidents.
• Track medication changes and effectiveness.
• Document observations from other family members and caregivers.

Sue’s Experience:

When we moved my husband to memory care, we had an early hospice assessment that provided a baseline. While he didn’t qualify then, having that baseline and knowing what to look for was incredibly valuable when it was time.

Important Note:

Many primary care providers may not be familiar with the latest hospice regulations. Your documentation helps build a case for hospice evaluation and provides concrete evidence of decline.

Tip 3 — Research Hospice Organizations

Don’t wait until you’re in crisis to start researching hospice organizations. Begin your research early and be prepared.

What to Research:

• Available hospice organizations in your area.
• Their team structure and approach to care.
• Response time for evaluations and care.
• Experiences of other families.
• Specific services offered.
• Their experience with dementia patients.

Additional Research Tips:

• Ask for recommendations from other caregivers.
• Read their literature to learn the services they offer.
• Read reviews and testimonials.
• Consider visiting their facilities if applicable.
• Ask about their approach to dementia care.
• Understand their after-hours support system.

Tip 4 — Request a Hospice Evaluation

Don’t be afraid to ask for a hospice evaluation — even if you’re not sure your loved one qualifies. Learning what to look for provides peace of mind.

Steps to Get an Evaluation:

1. Ask your primary care provider for a hospice evaluation.
2. If met with resistance, emphasize your goals of care.
3. Frame it as establishing a baseline if needed.
4. Two physicians must agree your loved one qualifies for hospice care — your primary provider and the hospice doctor.
5. Be prepared to be a “squeaky wheel” if necessary.

Nancy’s Experience:

With my father-in-law, I had to be very persistent. I finally went to the office and said directly, ‘I want a hospice referral. I want him to be evaluated.’ Even if they push back, remember that you have the right to request an evaluation.

The Hospice Care Plan: Your Valuable Resource

Nancy and Brenda have created The Hospice Care Plan: A Path to Comfort, a comprehensive guide that helps families navigate hospice care.

This resource includes:

• Detailed symptom management guidelines.
• QR codes linking to instructional videos.
• Space for individualized care plans.
• Information about the hospice team.
• Practical tips for daily care.

Bonus — The Four Essential C’s of Care

1. Calm — Is your loved one peaceful?
2. Comfortable — Are they free from pain and distress?
3. Clean — Are their personal care needs being met?
4. Cared for — Are they receiving attention and support?

Brenda Kizzire emphasizes:

Care is the treatment. If they are taken care of first, no matter what, it will take care of 90% of their needs.

Final Thoughts

Requesting hospice care is ensuring the best possible quality of life for your loved one. Don’t wait until you’re in crisis to start considering hospice care. The earlier you begin preparing and understanding your options, the better equipped you’ll be to make informed decisions and support the best care.

If you have tips about when to bring in hospice care, please share them on our Facebook page or Instagram page.

We are all on this journey together.