When To Call In Hospice: Four Essential Tips / Alzheimer’s and Other Dementias

As caregivers for our loved ones with Alzheimer's and other types of dementia, we've learned that there are many misconceptions about hospice care. Today, we're joined by hospice nurses Nancy Heyerman and Brenda Kizzire to help clarify what hospice really is and when to consider it. Through their extensive experience, they've developed four essential tips to help you navigate this important transition in your caregiving journey.

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Full Show Notes

https://thecaregiversjourney.com/when-to-call-in-hospice-four-essential-tips-alzheimers-and-other-dementias/

Additional Resources Mentioned

The Hospice Care Plan website here

Frailty scale here

The Hospice Care Plan booklet here

The Hospice Care Plan YouTube channel here

YouTube video - End of life for a person with dementia here

Takeaways

1. Access Your Care Receiver Using the Frailty Scale

One of the most important tools in determining when hospice might be appropriate is the frailty scale. This helps track changes that might indicate a need for hospice care.

What 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 status changes

2. Start Documenting

This tip might seem obvious, but proper documentation can make 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

- Use your phone to track behavioral changes

- Record any falls or incidents

- Track medication changes and effectiveness

- Document observations from other family members and caregivers

Important Note:

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

3. Research Hospice Organizations 

Don't wait until you're in crisis to start researching hospice organizations. Start 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 Tips:

- Ask for recommendations from other caregivers

- Read reviews and testimonials

- Consider visiting their facilities if applicable

- Ask about their approach to dementia care

- Understand their after-hours support system

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.

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. Remember that two physicians must agree - your primary provider and the hospice doctor

5. Be prepared to be a "squeaky wheel" if necessary

The Hospice Care Plan: A 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

Read More in This Blog here