How does long term care or caring @ home work in the US, Aus, and UK?
January 31, 2023 6:01 PM Subscribe
Could Google this but am beat. Just curious - how does LTC or caregiving at home work in the rest of the anglosphere? I know it depends on the state, too, for the US. Actually would be interested in hearing about how it works in other Canadian provinces, too.
In Ontario, Canada, these are the options:
- person lives at home with 3 x 15 minute daily visits from personal support workers for medications, meals and personal care (paid by government)
- adult daycare, some of which have odd hours (ill suited to 9-5 work for caregivers). Subsidized by government, family pays $20 CAD per day
- family pays for private caregivers
- private retirement home, costs 4-10k CAD/month. No guarantee of decent care but can be more pleasant than LTC.
- public long term care home. Can be free for a basic shared room or ~2000-2500 CAD/month for semi-private. Staffing ratios are pretty bad (1 PSW for 40 high-need residents; one RN for 80 residents). Entire building is locked down, minimal activities, when you visit you see residents zoned out in front of a TV or lined up in their mobility devices to be shuffled to or from the dining room. Or wandering the halls. Like it’s a nightmare, have never seen a decent one. The military were called in to several homes during the first phase of covid and were shocked at conditions.
- Caregivers who start their journey with decent jobs can briefly go on paid caregiver leave (less than their full salary) if the condition is terminal. I know in the US, caregivers can apply to be paid for their time caring for their loved one. No such thing exists here outside of maybe one Atlantic province.
In Ontario, Canada, these are the options:
- person lives at home with 3 x 15 minute daily visits from personal support workers for medications, meals and personal care (paid by government)
- adult daycare, some of which have odd hours (ill suited to 9-5 work for caregivers). Subsidized by government, family pays $20 CAD per day
- family pays for private caregivers
- private retirement home, costs 4-10k CAD/month. No guarantee of decent care but can be more pleasant than LTC.
- public long term care home. Can be free for a basic shared room or ~2000-2500 CAD/month for semi-private. Staffing ratios are pretty bad (1 PSW for 40 high-need residents; one RN for 80 residents). Entire building is locked down, minimal activities, when you visit you see residents zoned out in front of a TV or lined up in their mobility devices to be shuffled to or from the dining room. Or wandering the halls. Like it’s a nightmare, have never seen a decent one. The military were called in to several homes during the first phase of covid and were shocked at conditions.
- Caregivers who start their journey with decent jobs can briefly go on paid caregiver leave (less than their full salary) if the condition is terminal. I know in the US, caregivers can apply to be paid for their time caring for their loved one. No such thing exists here outside of maybe one Atlantic province.
Response by poster: So there is nothing entirely public for people with mild to moderate dementia who need mild but constant supervision and engagement, basically.
posted by cotton dress sock at 6:08 PM on January 31, 2023
posted by cotton dress sock at 6:08 PM on January 31, 2023
I'm not super sure about how it runs in all of BC, but I do know that there is at least one dementia-specializing long term care home in the Metro Vancouver area that is operated by the local health authority (thus public). My aunt lived there for 15 (I think) years and we're hoping to get my dad in there.
My dad is currently in a private facility that specializes in dementia that seems like what you're describing a public long-term care home to be. In BC I don't think they're as bad as they are here in Ontario, but the locked down/zoned out aspects are bang on - he, like a lot of dementia patients, was prescribed long-term anti-psychotics to keep him in line, until I read a story about the practice and my mom intervened to get him taken off them. Before he moved into the home, he did a combination of home visits and day programs a few times a week.
I think the current state of both public and private care homes for people with dementia and the aimless residents is very much a product of the pandemic era, as the one my grandma (who had Alzheimers) was in before the pandemic (public, mostly but not exclusively dementia specific) was very interactive and did a lot of things with the residents. The pandemic had an extremely significant impact on people with dementia, something I really saw with my dad, who was nearly unrecognizable between when I stayed with him for a week in February 2020 and when I saw him again finally in June 2020, the day before he moved into the care home.
posted by urbanlenny at 6:25 PM on January 31, 2023 [1 favorite]
My dad is currently in a private facility that specializes in dementia that seems like what you're describing a public long-term care home to be. In BC I don't think they're as bad as they are here in Ontario, but the locked down/zoned out aspects are bang on - he, like a lot of dementia patients, was prescribed long-term anti-psychotics to keep him in line, until I read a story about the practice and my mom intervened to get him taken off them. Before he moved into the home, he did a combination of home visits and day programs a few times a week.
I think the current state of both public and private care homes for people with dementia and the aimless residents is very much a product of the pandemic era, as the one my grandma (who had Alzheimers) was in before the pandemic (public, mostly but not exclusively dementia specific) was very interactive and did a lot of things with the residents. The pandemic had an extremely significant impact on people with dementia, something I really saw with my dad, who was nearly unrecognizable between when I stayed with him for a week in February 2020 and when I saw him again finally in June 2020, the day before he moved into the care home.
posted by urbanlenny at 6:25 PM on January 31, 2023 [1 favorite]
Response by poster: Sorry to hear about how pandemic practices affected your father, urbanlenny. I hope he gets into the home you linked to. The pandemic definitely worsened things for LTC residents, but it’s largely been bad for a while - CBC Marketplace used data from 2015-2019 for this piece: https://www.cbc.ca/news/marketplace/nursing-homes-abuse-ontario-seniors-laws-1.5770889 . (Above, I described what I saw before Covid.) I’m glad you were able to advocate for your dad. Ah also yes sorry of course LTCs can be private as well. Sorry. It’s retirement homes (more independence but costly) vs LTCs.
posted by cotton dress sock at 7:41 PM on January 31, 2023
posted by cotton dress sock at 7:41 PM on January 31, 2023
I'm also in Ontario. We were beyond lucky w/r/t caregivers for my mum from 2013 to 2017. She got an hour of care, more or less, twice a day. A PSW would come in in the morning and help her bathe and dress, make her a cup of coffee and usually a light bite, and again after supper to help her get ready for bed and supervise meds. Most of them were good, her primary one was absolutely SPECTACULAR
posted by kate4914 at 7:52 PM on January 31, 2023 [1 favorite]
. In between those times she was usually either with me, my sister or both of us. I felt 100% confident in the care she received, unless she wasn't getting any at all. If a PSW cancelled, the agency rarely had a replacement. I can't imagine how much worse it is now with covid. The PSWs weren't paid for their transit time between clients in a large rural area, so they were invariably running as fast as they could from one to another. We met a lot of people gobsmacked a the amount of care she received, but there's no way she could have been at home without it, and had NO intention of going anywhere else, and we advocated strongly on her behalf.
I have a friend who lives in a nursing home. Though he chooses not to engage in the activities there, there's something on the calendar most days. It's no better staffed than it needs to be (it's privately owned). His disability pension covers his shared room. I have a friend who lives in a nursing home. Though he chooses not to engage in the activities there, there's something on the calendar most days. It's no better staffed than it needs to be (it's privately owned). His disability pension covers his shared room.
posted by kate4914 at 7:52 PM on January 31, 2023 [1 favorite]
My mother, who has Alzheimer's, is in a full-service private facility in the Seattle area. The facility itself is for people all the way from independent living to assisted living memory care. She lives in a nice, secured wing especially for dementia sufferers and pays (via long term care insurance, thank heavens) about $7,300 a month for room, board and "moderate" care -- help getting up and dressed, daily activities, administration of medication, etc. I have no complaints about her care; there are several nurses on duty at all times, they watch her condition carefully and report issues when they arise. The facility did their best during the pandemic, though my mom tested positive for Covid three times (but had only minor symptoms).
We found the facility via a senior home placement service. The service was at no cost to us; the fee was paid by the facility, and they were not permitted to add that fee onto what they charge us. I suppose they treat it as part of their marketing budget.
posted by lhauser at 9:26 PM on January 31, 2023 [1 favorite]
We found the facility via a senior home placement service. The service was at no cost to us; the fee was paid by the facility, and they were not permitted to add that fee onto what they charge us. I suppose they treat it as part of their marketing budget.
posted by lhauser at 9:26 PM on January 31, 2023 [1 favorite]
California in the US offers a wide variety of programs for the aging low-income person (on our low-income insurance, which is officially named Medi-Cal). What's tricky is if you aren't classified as low-income but aren't rich enough to just pay out the nose for care.
Our flagship and the one that works best is something called In-Home Supportive Services, paid by our state insurance for the low-income; this basically pays for up to 283 hours a month of caregiver wages with no cost to the low-income patient. Caregivers can be family members, friends, or professionals who are referred by the state. It is generally considered a pretty good program-- wages are low, but it's a lot better than not having any help/not getting paid to provide care to your family.
There are also day centers, and a series of other lesser known programs that are tailored to provide an increasing level of care. Those are harder to access and not available everywhere.
Once you need LTC, if you're on the low-income insurance, there are a variety of places accepting and you will never pay a dime for your care, it is free until you pass away, at which point your estate can be collected against but only on certain terms. A lot of the facilities available to Medi-Cal patients are abusive and awful. Not quite all; I have ever seen a decent one, which was a pleasant surprise.
For people who don't qualify for Medi-Cal... well, our federal insurance that seniors automatically qualify for, Medicare, pays for a short stay in a long-term care facility, but once that money runs out that's it for life, no more coverage from Medicare for long-term care. This incentivizes nightmares of abuse and it's just such a fucking problem and I can't think about it too hard or I start screaming. Whole economies of hell have arisen around this. Lots of people private pay instead, which is expensive, but I don't have a good sense of exactly how expensive. If your money runs out at some point, you'll qualify for Medi-Cal instead and from there your care will be free. There are rules meant to prevent long-term care facilities from ejecting patients who transition from the insurances that reimburse at the high rates to the low-income insurance. They don't work very well, but they work more than not at all.
All of these systems are more complicated than I'm making them sound and my experience is technical not personal!
posted by peppercorn at 11:01 PM on January 31, 2023 [1 favorite]
Our flagship and the one that works best is something called In-Home Supportive Services, paid by our state insurance for the low-income; this basically pays for up to 283 hours a month of caregiver wages with no cost to the low-income patient. Caregivers can be family members, friends, or professionals who are referred by the state. It is generally considered a pretty good program-- wages are low, but it's a lot better than not having any help/not getting paid to provide care to your family.
There are also day centers, and a series of other lesser known programs that are tailored to provide an increasing level of care. Those are harder to access and not available everywhere.
Once you need LTC, if you're on the low-income insurance, there are a variety of places accepting and you will never pay a dime for your care, it is free until you pass away, at which point your estate can be collected against but only on certain terms. A lot of the facilities available to Medi-Cal patients are abusive and awful. Not quite all; I have ever seen a decent one, which was a pleasant surprise.
For people who don't qualify for Medi-Cal... well, our federal insurance that seniors automatically qualify for, Medicare, pays for a short stay in a long-term care facility, but once that money runs out that's it for life, no more coverage from Medicare for long-term care. This incentivizes nightmares of abuse and it's just such a fucking problem and I can't think about it too hard or I start screaming. Whole economies of hell have arisen around this. Lots of people private pay instead, which is expensive, but I don't have a good sense of exactly how expensive. If your money runs out at some point, you'll qualify for Medi-Cal instead and from there your care will be free. There are rules meant to prevent long-term care facilities from ejecting patients who transition from the insurances that reimburse at the high rates to the low-income insurance. They don't work very well, but they work more than not at all.
All of these systems are more complicated than I'm making them sound and my experience is technical not personal!
posted by peppercorn at 11:01 PM on January 31, 2023 [1 favorite]
For those in the U.S. who need supportive care and who need Medicaid assistance to pay, there is a Medicaid Waiver program in some states. The goal is to avoid institutionalization if some level of care can be provided at home.
posted by yclipse at 5:09 AM on February 1, 2023 [1 favorite]
posted by yclipse at 5:09 AM on February 1, 2023 [1 favorite]
I'm in Australia and, until she passed away just before Christmas, my mother was in long-term residential care for about 2.5 years and in a residential 'retirement village' for some years before that.
Here, there are a variety of residential care services available, including high-end luxury apartments that are purchase-only (some in excess of $1M) and then pay-as-you-use for the usual services an ageing person might need, all of which are provided in-house or can be provided by an external agency at the choice of the resident.
The bulk of residential care facilities are much more what you'd expect - single or shared rooms in a facility with common recreation and dining facilities, staffed by qualified carers overseen by an RN. Regardless of the type of facility, carers must be qualified. These facilities are very similar wherever you go, having to comply with numerous standards etc, although there is a wide variety of 'quality' (fancy rooms and bathrooms etc - the care is the same regardless) and commensurate costs.
There are a variety of higher care facilities within most (but not all) residential facilities, catering for those with dementia etc. Sometimes these are 'high care' for those needing significant clinical support and sometimes they are 'secure' facilities aimed at keeping people with dementia safe with the minimum of intervention (basically, they can wander around within the facility and are as independent as possible, but they can't get out).
There are also services available to support people staying in their own homes as long as possible, including allied health assistance like changing dressings, applying and removing compression stockings etc, housework, social support (taking them shopping etc), cooking and all the various things that ageing people struggle with. This is all based on a view that people who are as independent as they can be have better outcomes, particularly long-term.
There's also 'respite care', where people spend a day or more in a residential facility, usually where family members are providing care and need a break.
Who pays for all of this? It depends on the financial capacity of the person. If you have plenty of money, the sky's the limit on what you can receive, of course, as long as you can pay. At the other end of the scale, if you fall below the means-test limit and are receiving an aged pension (government pays this and all are eligible, subject to a means test), the cost of full residential care is covered by 80% of the pension you receive. All residential facilities that want to receive any public funding are required to make spaces available to people that fit this criterion and the care must be comensurate with someone who pays full price. Similarly, if you are receiving at-home care, the cost of this is paid by the government subject to a means test and also to an assessment of the level of care required, although there is a basic level of care that is available without any means test.
The above is very, very summarised. You can find out more here if you're interested. The whole scheme is quite complicated, albeit easier to navigate from the perspective of a specific situation than trying to understand the whole thing at once.
In the case of my mother, she received gradually more and more in-home care at no cost to her while she was living in the retirement village and then full residential care for the cost of 80% of her pension when she moved into the aged care home. The facility she was in was very nice (although those paying full fees got slightly fancier rooms etc, their own bathroom vs one shared between two rooms etc) and included lots of activities, outings etc. There were things like outdoor areas and gardens where the residents could tend plants and, to the extent possible, do the things they would have done if in their own homes. This was not a secure facility as such, although she was developing dementia. There was some basic security to stop people wandering away if they weren't mentally able to work out how to unlock doors using a code etc, but she would have had to be moved soon if she had not passed away.
posted by dg at 9:02 PM on February 1, 2023 [1 favorite]
Here, there are a variety of residential care services available, including high-end luxury apartments that are purchase-only (some in excess of $1M) and then pay-as-you-use for the usual services an ageing person might need, all of which are provided in-house or can be provided by an external agency at the choice of the resident.
The bulk of residential care facilities are much more what you'd expect - single or shared rooms in a facility with common recreation and dining facilities, staffed by qualified carers overseen by an RN. Regardless of the type of facility, carers must be qualified. These facilities are very similar wherever you go, having to comply with numerous standards etc, although there is a wide variety of 'quality' (fancy rooms and bathrooms etc - the care is the same regardless) and commensurate costs.
There are a variety of higher care facilities within most (but not all) residential facilities, catering for those with dementia etc. Sometimes these are 'high care' for those needing significant clinical support and sometimes they are 'secure' facilities aimed at keeping people with dementia safe with the minimum of intervention (basically, they can wander around within the facility and are as independent as possible, but they can't get out).
There are also services available to support people staying in their own homes as long as possible, including allied health assistance like changing dressings, applying and removing compression stockings etc, housework, social support (taking them shopping etc), cooking and all the various things that ageing people struggle with. This is all based on a view that people who are as independent as they can be have better outcomes, particularly long-term.
There's also 'respite care', where people spend a day or more in a residential facility, usually where family members are providing care and need a break.
Who pays for all of this? It depends on the financial capacity of the person. If you have plenty of money, the sky's the limit on what you can receive, of course, as long as you can pay. At the other end of the scale, if you fall below the means-test limit and are receiving an aged pension (government pays this and all are eligible, subject to a means test), the cost of full residential care is covered by 80% of the pension you receive. All residential facilities that want to receive any public funding are required to make spaces available to people that fit this criterion and the care must be comensurate with someone who pays full price. Similarly, if you are receiving at-home care, the cost of this is paid by the government subject to a means test and also to an assessment of the level of care required, although there is a basic level of care that is available without any means test.
The above is very, very summarised. You can find out more here if you're interested. The whole scheme is quite complicated, albeit easier to navigate from the perspective of a specific situation than trying to understand the whole thing at once.
In the case of my mother, she received gradually more and more in-home care at no cost to her while she was living in the retirement village and then full residential care for the cost of 80% of her pension when she moved into the aged care home. The facility she was in was very nice (although those paying full fees got slightly fancier rooms etc, their own bathroom vs one shared between two rooms etc) and included lots of activities, outings etc. There were things like outdoor areas and gardens where the residents could tend plants and, to the extent possible, do the things they would have done if in their own homes. This was not a secure facility as such, although she was developing dementia. There was some basic security to stop people wandering away if they weren't mentally able to work out how to unlock doors using a code etc, but she would have had to be moved soon if she had not passed away.
posted by dg at 9:02 PM on February 1, 2023 [1 favorite]
All the information you're interested in for England is on this NHS page about social care.
Social care is not funded to the same extent that healthcare is, and the offerings are broadly similar to those you've outlined for Ontario. There is an element of choice in our personal care budget scheme.
posted by plonkee at 12:10 PM on February 2, 2023 [1 favorite]
Social care is not funded to the same extent that healthcare is, and the offerings are broadly similar to those you've outlined for Ontario. There is an element of choice in our personal care budget scheme.
posted by plonkee at 12:10 PM on February 2, 2023 [1 favorite]
This thread is closed to new comments.
Sorry that’s semi-private to private.
posted by cotton dress sock at 6:04 PM on January 31, 2023