How many years did or has your loved one lived in a facility?

Merla

I was told that a typical stay in memory care is 2-3 years. This surprised me because this would indicate that either people are coming from assisted living or somehow families are caring for their loved ones at home. Granted the cost of assisted living and memory care is so high so any care option is hard.

I wonder because I'm have a bit of regret that my parent will be placed earlier than most people. I did find a unique memory care which has a program for people with mild/moderate dementia so it does accommodate people like my parent.

fmb

DH was well into Stage 6 (including double incontinence) when he was placed in the first ALF in October 2023. He'd had a stroke and several falls, and was hospitalized 6 times in 4-1/2 mos. He was diagnosed with "moderately severe ALZ" and congestive heart failure during the stroke follow-up visits with the neurologist and cardiologist. This was after we were told for years that his problems were simply "normal aging"; he was 92 at the time.

I had to place him in an ALF due mostly to the physical aspects of his diseases. He did not exhibit any of the more troubling ALZ behaviors (violence, wandering, severe agitation, paranoia, etc.) that some PWD experience.

We are now in our 15th month, and he has been in hospice care for almost that long.

My mother checked herself into an ALF in Sept. 2022, right after her 85th birthday. At that time she was still cognizant enough that we kids, none of whom live nearby, did not know the extent of her disability. She initiated the sale of her car and her house. She fell off the ALZ cliff in Dec. 2023 and asked to be transferred to the MCF in Jan. 2024. She also has heart failure and has had numerous falls. She has been in hospice care for 11 mos. She is well into Stage 6 and suffers from anxiety, paranoia, and hallucinations which they are still trying to control with medication.

harshedbuzz

@Merla

I'm kind of surprised it's as long as that. It would be interesting to see how it breaks down based on gender and who the family caregiver would be/was/is.

Two thirds of those diagnosed with dementia are women and yet at dad's MCF the male population rarely hit 20%. I saw this at both facilities where my aunts lived as well.

Anecdotally, I see sibling caregivers more likely to place their LOs earlier on. Adult children seem to place more often/earlier than spouses. This is especially true for younger adults with responsibilities to work and children. Among the spouses, with husbands the straw that breaks the camel's back is often incontinence and resistance to care. With wives, it is often the physical challenges and risks of providing care to someone bigger than them. It seems like husbands may place earlier as a group than wives do.

To answer your question. Dad was in memory care for about 2 months in stage 6. Mom dearly wanted to keep him at home for financial reasons and because she felt a strong societal expectation that "sickness and in health" meant doing it herself. Doing so permanently impacted her own health and independence in stage 8.

My aunt "inherited" a sister with dementia (VD) whose husband had not shared this information when he died suddenly. She was awarded guardianship and placed her sister immediately in about stage 4. My aunt with dementia went into a MCF in 2010 and died a few weeks before dad in 2018.

Another aunt was cared for at home by her single adult DD. She was not an easy PWD and the daughter struggled to cope. My cousin is deaf and disabled by a back injury. The use of ASL interpreters to report behaviors impacted the urgency of the issues my cousin was having in getting a diagnosis and placement done. She went into an AL, as her state doesn't provide Medicaid funding for a MCF, where she broke a hip within the first month and was transferred to a SNF where she died about 3 months later.

TL;DR. 2 months, 3 months and 8+ years.

HB

mabelgirl

My mom is in the late stage of dementia. We moved her to an ALF about 5 months ago. We monitor her care with cameras which also gives us insight to her behavior. She doesn’t wander and is on medications for her agitation, depression and hallucinations. There were times where she couldn’t figure how to get herself into bed and would crawl in like a toddler would to a huge bed. We discussed if it was time for move down the hall to MC as it’s heartbreaking to see her struggle. However, we reasoned if she can still figure out a solution to a problem she doesn’t need it yet. She is mostly able to do her ADLs like shower and toilet. She doesn’t do the best job with these but it’s good enough. I think until she can no longer do these or know to push buttons for help she’ll be more comfortable believing nothing is wrong with her (she has anosognosia bad!). If she leaves her room, which is VERY infrequent she needs guidance back. I think that’s why she doesn't leave more often because it scares her. It’s something I mention, because this my siblings and I disagree on. In MC she would be forced from her room and the area to roam is smaller thus it may give her a better quality of life but the cost is double and I think my siblings can’t handle their share. As with everything in the lives of different people each journey is different and thus there isn’t a one answer fits all. It’s what the family deems is best for everyone. There should be any regrets if we are truly doing the best we can with love and compassion for the whole family. Prayers for peace.

Quilting brings calm

My mom and stepdad went into an AL in Nov 2019. I placed them there after bringing mom home to my state for a medical emergency. They didn’t have anywhere to live and it wasn’t going to be with me. She was in stage 4 dementia at the time. He was diagnosed with stage 4 dementia a couple years later. They both had physical issues. He passed Feb. 2024 at age 84. She passed Nov 2024 at age 86. So 5 years. She would have run out of money in 2 more years if she stayed in the AL. If she hadn’t died, she would have ended up in MC and run out of money in a year. I believe the AL is what allowed them to live as long as they did, due to the care and supervision.

Merla

thanks for the input.

I guess that I am placing my parent earlier than most as she is stage 4. I just don't see another feasible option given our circumstances and she is actually quite unhappy about her current living situation.

i am really happy with the memory care selection we made as they have a a program for mild/moderate dementia and 15-20 residents in this program. Otherwise my impression she is very borderline to be in assisted living and also a poor fit for the typical memory care population.

Supposedly her life expectancy is 5-7 years so this would be longer than typical to be in memory care.

harshedbuzz

@Merla My aunt was in MCF/SNF for just over 8 years. Her social skills were quite intact, so she was included in the AL activities, meals and outings for the first several years. Her care and ADL assistance took place in the MCU. As she progressed, her guardian moved her to the SNF but she continued to spend most of her day with MC people. Perhaps this facility can be as flexible as my aunt's was.

In terms of life expectancy, a doctor once told me a PWD's life expectancy is about half what it would be at the time of diagnosis if they didn't have dementia. This formula worked out exactly for my dad and a friend's mom but not my aunt. Mom's family does have some serious longevity that seemed in play.

HB

kblau

my mom is 72 and in MC. Coming up on 1 year. She’s moderate stage. We’ll run out of money in 8 years.

Merla

https://alzconnected.org/discussion/comment/233304#Comment_233304

what were you told was her life expectancy now? Your mom seems similar to mine in terms of age and stage of dementia. I had been planning on 10 years from a financial perspective but the dr said 5-7 years. She was diagnosed at stage 4.

Merla

We have longevity in our family and my parent was and is a bit of a health nut so I really hope that rule of half isn't true seeing as my grandparents are halfway through their 90s. My great grandma died in her mid 70s of Alzheimer's. Unless the disease plateaus immediately I don't want my parent to have a long drawn out journey to end of life.

I have been very impressed with the facilities I've toured. They have a calendar of activities similar to assisted living for the less advanced people with dementia and have outings and even for the more advanced people they have more sensory related activities and get them out of their rooms even in the later stages. And more importantly i saw people with dementia who seemed content as anyone engaging in activities and interacting with me and my family.

kblau

https://alzconnected.org/discussion/comment/233305#Comment_233305

honestly this is based on my own research mainly from articles found here. I was told to plan for 10 years too from our financial planner and hopefully her money will stretch that long if needed. If not, Medicaid will kick in. And I’ll have to move her to another facility. It’s so hard to plan for this disease. I just can’t believe she is this young and we are dealing with this

Quilting brings calm

The average life expectancy of a person diagnosed with Alzheimer’s is 8-10 years. FTD is 5. However people can live as long as 20 years with Alzheimer’s. Early onset ( before age 65) seems to have a much lower life expectancy. If you go to this link and scroll down to the tables, then scroll right: you will see average duration for each stage

https://www.dementiacarecentral.com/aboutdementia/facts/stages/

Merla

how is early onset defined because I saw changes in behavior since 67 and there could have been changes earlier but I wasn't present enough to have been able to notice them if they were there. Memory care staff had told me that hers likely will progress faster due to her younger age. The only physical symptoms I see are weight loss despite eating a lot and these mouth movements like chewing with her mouth closed. The drs life expectancy estimate was based on the mri.

harshedbuzz

For the planners among us, the nature of dementia's progression is challenging.

kblau— When we were shopping for dad's MCF, we were also up against providing for mom as a community spouse. It was suggested that we only look at places that accept Medicaid as many of those operate under a business model in which the individual is self-pay (at a higher rate) for a period of 2-3 years before transitioning to a Medicaid bed. The few Medicaid beds in such places are given to current residents who have spent-down, so getting in on Medicaid can be a considerable wait. Since my state doesn't fund AL/MC, that meant finding a place that had both MC and a SNF to which he could transfer.

Merla— I would count from when you initially noted symptoms unless there is some mental or behavioral health condition in play. My dad was diagnosed late in the game because he and mom actively avoided getting a diagnosis. I noted changes in mood a full decade before his actual diagnosis was made. This preceded obvious memory loss by about 3 years.

I found dad's team— his PCP, neurologists, geripsych, mom, the DON and aides— considered him to be less further along in his disease progression that I did. He came to dementia with considerable cognitive reserve, his speech remained largely intact and he could showtime like an Oscar-contender which did give a sense that he was in better shape than he was.

The weight loss is typically something that happens later in the disease. This is especially true if you're talking significant numbers like 10% in the space of 6 months or so.

There's also a risk of her developing some other life limiting condition despite the health she enjoys now or cascading down as the result of a traumatic fall. My friend's mom had been freakishly healthy into her 90s— gardening, walking a couple miles daily with perfect weight, BP and cholesterol— when she developed dementia. She actually died from breast cancer diagnosed at stage III. My one aunt was about stage 4 when she suffered a fall with hip/wrist fracture which fast-forwarded her into stage 7. She passed within a year of diagnosis.

HB