Anyone experienced with dementia AND cancer diagnosis?

YoungestSib2

New here, so just gonna type:  Mom was diagnosed with kidney cancer in March. Like most everyone, this was  after an already lonely year of COVID isolation. Her memory had been “slipping” for the past several years, but nothing concerning enough to warrant alarm. However, she ended up spending three windowless, drugged weeks in the hospital for major complications and surgeries for that initial cancer diagnosis, and well, it took a toll.  Physically, she recovered enough to return home and live comfortably for these past 8 months..  Our primary concern has been her cognitive decline (neurological testing is ongoing, so we’re in the early stage but seeing moderate to rapid decline) while her overall physical condition was seemingly stable to improving. However, this week we learned her cancer is back, has spread, and will require immunotherapy and low-dose chemotherapy.  I don’t even know how or what to focus on, for her or my own mental health. Treating the “C” will almost surely compound the Dementia…

 
I’ve found a plethora of info and resources available for each (Dementia/ AD and Cancer), but not nearly as much for patients living with BOTH. Anyone here have experience with this?

TIA! 

M1

Welcome to the forum. I'm so sorry for your dilemma. There are several folks here who have dealt with dual diagnoses. My partner is age 80 and has a stage 4 indolent lymphoma that she's had for ten years, preceding her dementia symptoms by about three years. Her dementia is now stage 5 (you may want to look up tam cummings stages of dementia), and if the lymphoma recurs, we would not treat it at this point-she wouldnt understand. So I think all your decisions about cancer therapy have to take her degree of dementia into account.  Certainly I would ask lots of questions about toxicity of treatment before you embark.  Good luck, im sure others will chime in too.

dayn2nite2

I would point-blank ask the oncologist if it were his/her mother, what would they do?

Often when it's put that way, you will get an answer other than to aggressively treat.

Many of us hope that something other than dementia takes our LOs, even cancer.  My mother had a heart attack and I was grateful for it so she didn't have to go to the bitter end.

Stuck in the middle

dayn2nite2 wrote:

I would point-blank ask the oncologist if it were his/her mother, what would they do?

Often when it's put that way, you will get an answer other than to aggressively treat.

Many of us hope that something other than dementia takes our LOs, even cancer.  My mother had a heart attack and I was grateful for it so she didn't have to go to the bitter end.

That's good advice.

YoungestSib2

Thanks so much for your reply. First I’d heard of the Cummings stages- much appreciated! Certainly helps with perspective and descriptors for what we’re experiencing…

YoungestSib2

Simple but brilliant advice. Thank you!

Iris L.

Chemotherapy alone can impair cognition.  So chemotherapy would add to whatever degree of dementia she already has. 

 Iris L.

harshedbuzz

Youngest sib-

I am sorry you are dealing with this complicated scenario. Cancer and dementia are not an uncommon combination.

Decisions are typically made by families factoring-

1. Dementia itself is a terminal diagnosis. Depending on the type of dementia (some tend progress more quickly) and stage (the stage of the disease) 

2. The person's age. When a person is elderly, many families are less inclined to treat aggressively.

3. The kind of cancer. Some I personally would not treat at all, especially something like lower level skin cancer or prostate in an older man where the PWD is likely to die before the cancer really impacts them.

4. I would probably not aggressively treat a cancer that has a poor prognosis or required extensive and onerous treatment. I would avoid anesthesia and hospitalization whenever possible. 

5. The PWD's previously stated wishes are sometimes factored in.

Anecdotes-

A dear friend's mom stopped doing mammography at 80 stating that she would not treat given her age. She'd been caregiver to 2 sisters who had breast cancer and felt she'd rather not spend her last years doing that. She did develop breast cancer at around 90 when she was in late midstage dementia. My friend honored her mom's wishes and brought in hospice to make sure her mom's pain was well controlled. Mom lived another 2 years and was pretty happy and active at home until the final month; her dementia continued to progress at a fairly even pace. She died a month after the cancer moved into her lungs with hospice making sure she was relieved of pain and anxiety associated with trouble breathing. 

My own dad had dementia and a recurrence of a relatively aggressive prostate cancer. He was diagnosed fairly late and after he'd already made the decision to treat. My mother, with my blessing, continued the treatment for a couple of reasons. Firstly, treatment was androgen depravation therapy- so a simple shot in the butt every 6 months. Dad trended towards aggression, and I had hoped clearing his system of testosterone might settle him down a bit. The medication was 100% covered by insurance; I would have had a harder time if treatment was going to use up their finite funds earmarked for HHAs to help mom, a nice MCF when the time came (where I live, 2-3 years self-pay is expected at the nicer places before Medicaid is accepted for payment) and for my mom's own care down the line should she require it.  

I think the key piece here is to find out if your mom has dementia or some other condition that is reversible that mimics it. I would loop in the neurologist about the cancer recurrence, and I would not assume the oncologist is factoring in dementia in making a treatment plan. I always use the strategy dayn2 suggested.

This book is really helpful around navigating such situations-

Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Illness, 5th Ed.: Hank Dunn: 9781928560067: Amazon.com: Books

Good luck. This is hard stuff.
HB

mommyandme (m&m)

Stuck in the middle wrote:

dayn2nite2 wrote:

I would point-blank ask the oncologist if it were his/her mother, what would they do?

Often when it's put that way, you will get an answer other than to aggressively treat.

Many of us hope that something other than dementia takes our LOs, even cancer.  My mother had a heart attack and I was grateful for it so she didn't have to go to the bitter end.

That's good advice.

Ditto