Presenter: Dorothy Colby, Hale Kū‘ike Director of Community Engagement & Positive Approach to Care® Trainer
Date: 11/5/20
Recording length: 1 hour, 30 minutes
Sponsors: Hale Kū‘ike and Catholic Charities Hawai‘i
Description:
- Why is dementia different as the end of life’s journey approaches?
- Letting go vs. giving up…what is the difference?
- How to make positive connections all the way to the end of life
The journey of dementia is ever changing, and that holds true all the way through the end of life. One of things that can be very different than other disease processes is that it may have taken a very long time to reach this point, possibly more than a decade. So much has changed for the person living with dementia, and for everyone in their lives.
As we all move through life we experience all kinds of health care. We try to promote better health through exercise and other lifestyle changes. When we are sick or injured, we seek treatment for a cure and hopefully a complete recovery. Sometimes we need rehab to help us restore some of our skills or abilities. We might not get back to exactly where we were before, but we make improvements. As time goes on our focus changes to trying not to lose ground, keep our health status quo. We add in physical and environmental supports, such as walkers, to help compensate for challenges.
Over time journey of dementia these health care approaches can become challenging or ineffective. We can’t fix or change the course of the diseases that cause dementia, no matter how hard we might try. But even though there is no cure, there is a type of care that can help improve the quality of life for the person, and everyone in their lives. That care is comfort care, which can take the form of palliative care or hospice care. Palliative care is specialized medical care for people living with serious illnesses like dementia. The focus is on comfort and improving the person’s quality of life. Palliative care is available at any stage of the illness, and you can have it with other treatments. Hospice care focuses on comfort and dignity at the end of life. The primary purpose it to manage pain and other symptoms during the last six months of life.
In the Positive Approach to Care® (PAC) GEMS progression model, the late stage of dementia is the Pearl. Like an oyster, the person living in a Pearl state is hidden in their shell. They may be still, quiet and withdrawn. Movement becomes challenging and they may be stiff or contracted. Infections, such as UTIs, are common. Primitive reflexes take over and they may have difficulty swallowing.
Even though they may seem locked away in their shell, the person you know and love is still there. The end of life’s journey is approaching. They may need our permission to go, to know that they have done what they needed to do here and we will be OK. We can still connect with smooth and slow movements and a low and calm voice. With the right setting and care, it is possible for that shell to open for brief moments of connection.
To learn more about dementia and end-of-life care tips, you can view our recorded webinar, “End of Life Care & Letting Go: Providing Care in the Final Stages of Dementia.” You can also download the workshop slide deck, GEMS printable poster, and PAC Resource Cards.
For more information about PAC, visit www.teepasnow.com.