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Good article on end of life issues with dementia
Posted: Sunday, September 8, 2019 10:37 AM
Joined: 3/10/2019
Posts: 128

I have failed at creating a "live link" but this is a good article and worth reading.  Key sentence: 

"Because dementia is underrecognized as a terminal condition, our current models for end‐of‐life care are not tailored to meet the needs of people with dementia and their caregivers.'




Posted: Sunday, September 8, 2019 2:22 PM
Joined: 2/3/2018
Posts: 600

Awesome article, Cat. As we are nearing end-of-life, ever so sloooooowwwly, I'm having to figure out what resources are available for Mom and for us to get through to the end. I especially liked this statement...

"...we need to do much more. We need to teach clinicians how to comfortably walk beside people with dementia and their family members through a long and uncertain prognosis toward a certain death. We need to empower all providers to take responsibility for starting and continuing difficult conversations with their patients with dementia about death and dying and provide them with sufficiently long office visits to accommodate these conversations. Ultimately, we need to continue to create and build adequate supports for patients and families and provide them with high‐quality evidence‐based geriatric palliative care for dementia."

Adequate support would be nice. Hell, at this point I'll take inadequate over nothing!

Thanks for sharing.

Posted: Sunday, September 8, 2019 2:24 PM
Joined: 2/3/2018
Posts: 600

Oh, and a p.s. you have to paste a link into an email, make it live there, THEN copy and paste it into a post here to be live on the forums.

Michael E. recently taught me that! I was confused about it too.

Posted: Sunday, September 8, 2019 3:09 PM
Joined: 7/6/2014
Posts: 658
Bob Sacamano
Posted: Monday, September 9, 2019 9:19 AM
Joined: 1/31/2012
Posts: 489

Most interesting nugget was that hospice was mostly created for cancer patients, who have a predictable and fairly rapid period of decline. Death from Alzheimer's, of course, is unpredictable and has a very long period of decline. Which, according to the article, leads to lengthy periods on or off of hospice or abbreviated stays when the afflicted person is very close to the end.
Posted: Monday, September 9, 2019 10:40 AM
Joined: 6/5/2014
Posts: 1386

A well researched, well written article. Thanks for posting it.

"The culture of medicine is rooted in the desire to heal and cure, and struggles with the inevitability of degeneration and death." "Yet hopes for future treatments should not impede more immediate and critical conversations...about death and dying."

This is the central theme of a book I recently read titled "Being Mortal." The medical profession certainly needs to adopt a different approach to discussions about the terminality of diagnosed illnesses and end-of-life care, rather than just referring patients to hospice.

Like it or not, we all will face the final chapter of this journey, and although we can never truly prepare ourselves spiritually or emotionally, we can give thought to how we want to spend those last days with our loved ones. I recently visited the dying SO of a close friend in her hospice suite. Before entering, I was instructed to be silent (respect for the dying?), and inside witnessed a somber scene; an unresponsive "guest of honor," surrounded by quietly sobbing, red eyed family members. I prayed silently at the foot of her bed, touched her, and made my exit, glad to escape the gloom.

When it is my DW on that bed, I want her favorite music playing, and I will encourage conversation from visitors whether there is any indication she can hear us or not. When my father passed, after saying our personal goodbyes, we joined hands around his bed and sang his favorite hymns as he took his last breath.   

 So if you haven't already, spend some time discussing this with family and, if possible, your LO. It is a special time, one in which the dying can share special parting gifts if you are receptive...and it need not be a somber one.