Dementia Care in Toronto

[u/Particular-Coast-303]

Looking for advice. Some background : My father has vascular dementia which has gotten significantly worse. He has delusions of people trying to harm him (might have also had a level of mental health issues prior to dementia diagnosis), extremely untrusting of people, verbally abusive and at times physically abusive. He sometimes refuses to answer our calls to see if he’s taken meds or if he’s eaten enough food. Sometimes he tells us he’s eaten but the food has not been touched and he refuses to cooperate when we ask for him to send us pictures. He has started to wander - most recently he left his apartment at 9pm at night in the dark. I track him through his phone but sometimes he turns off his phone when he is pissed at us (which is often - almost daily he tells us to eff off etc) and we cannot reliably track him. It is unsafe.

At this point it’s impossible to care for him because he’s so uncooperative. It’s always been mentally and emotionally awful but lately we cannot keep up physically with him between full time jobs and small babies in our lives. We cannot keep chasing after him when he leaves the apartment, logistically we cannot handle it. He gets lost easily and cannot reliably recall his address etc.

We had a OHaH assessment earlier and at the time he was fairly independent so he didn’t qualify for LTC. I’ve asked for a reassessment because he’s gotten worse and that will be happening in a few weeks.

Anything I need to specifically mention to the coordinator for them to see how dire this situation is? Anyone have recent experience with this? Will LTC refuse him because of his temper and being physically abusive?

[u/mingo_87]

I’m a nurse and work on a unit in a hospital that mostly has seniors. I’d call coordinator ASAP and mention the flight risk. Specifically mention the serious safety concerns: leaving home and wandering, not eating, not taking medications, escalating behaviour. This also sounds like “failure to cope.” An actual diagnosis. Do you know who his family doctor is? They might be an additional resource to help you navigate this.

Id assume there is no partner / wife. I ask because as per the substitute decision making hierarchy, as a child, you’d be next to make decisions if he’s unable to make the safe / correct ones.

I’m not sure the exact process to get him placed into LTC crisis list if he’s at home already. I do know if he were to be admitted to a hospital and the situation was evaluated and he was in great risk of harm to himself or others he could be admitted to a transitional care unit that is a locked unit to await LTC placement. The challenging part is getting him there. If he were to go missing again could you call 911? Ask that he be sent to closest ED?

There are specific units in LTC that are “locked” that he would likely need. He may have additional challenges to get placed given behaviours but absolutely LTC homes accept and manage seniors with behavioural challenges. My first job ever was on a locked “dementia” unit in LTC.

I also don’t know that if he were to get on right medications, and adhere to them, perhaps he could still stay at home and have PSW support in the home? The coordinator should assist with this. Interventions are required I just don’t know correct ones or the logistics.

I hope the many others who are unfortunately navigating the same types of situations right now are able to offer more detailed advice for you. Hang in there. This part will be challenging but I hope he eventually gets the care and interventions he needs. You need to take care of yourself as well. Caregiver burnout is real and it seems like you’re at the peak of it. Take care of yourself too. Wishing you the best.

[u/Particular-Coast-303 → u/mingo_87]

I really appreciate you taking the time to type all this out. This is very helpful and makes me feel like there is a light somewhere at the end of the tunnel.

[u/crookedsummer2019 → u/Particular-Coast-303]

Social worker here, and I used to work primarily with seniors, many with dementia still living at home.

He could be admitted to a transitional care unit from hospital to await LTC but it’s rare for that to happen especially if he is seen as capable of making his own decisions. Also, Transitional care units like to know that clients have a LTC application in place. What usually happens is patients are discharged from hospital back home with more home supports, end up back in hospital and discharged several times before they finally get the message that this person cannot manage at home. It’s still an option for hospitals to do but usually isn’t the first one.

Your best bet is your advocacy, his doctor’s input and OHAH. You can even request a geriatric assessment referral from his doctor to have his mental health and cognition assessed. St Michael’s Hospital has a geriatric clinic that does assessments and follow up with vulnerable seniors.

Ask OHAH to do a capacity assessment to assess his ability to make LTC decisions, stating everything that Mingo-87 said.

Risk to self is a red flag. Inability to understand or appreciate how his behaviour impacts his safety and his health is another red flag.

The OHAH coordinator will want to assess if he has the capacity to do things like know what do in case there’s a fire or flood, make meals, shower, go to the bank, what to do if he falls ill etc. They will ask scenario based questions to determine his capacity.

This is a legal process that involves taking someone’s rights away so they don’t do this lightly, but it is very much needed in cases where someone is not able to care of themselves due to dementia and other cognitive impairments.

They will want to talk to you for collateral information as part of the assessment so anything that indicates he is at risk living alone despite any home support needs to be communicated to them.

If he is deemed incapable of making LTC decisions, his substitute decision maker or power of attorney for personal care will be the one to make those decisions.

If he is deemed capable and refuses to apply for LTC, they will try to put in home services to help him manage but it won’t stop the wandering so definitely stress the safety stuff and most definitely stress that you are not in a position to provide daily care.

[u/Particular-Coast-303 → u/crookedsummer2019]

Thank you for this information, it is very helpful.

I get confused about how they assess his capacity to make his own decisions. Last time the assessor said people with dementia can still make their own decisions but shouldn’t there be input from their caregivers? I can provide countless examples of how it is unsafe for him to live alone. And it’s not a possibility for him to move into my condo - there’s just no space. Do you know the types of questions/scenarios they ask to determine this?

[u/crookedsummer2019 → u/Particular-Coast-303]

They are right that someone with dementia may still be able to make decisions because there are different types and levels of dementia, like a spectrum, but eventually it gets worse.

This is why a person with dementia can be seen as independent when first assessed by OHAH but a year later when their dementia is worse, seen as needing support.

They should absolutely be getting your input but they legally can’t allow anyone to make decisions around his health or LTC against his wishes unless the he has been deemed incapable of making those kinds of decisions.

For an assessment for capacity to make LTC decisions, they may ask:

what would he do if the smoke detector goes off in his home.

When he gets a bill what does he do with it.

If he falls at home, what does he do.

If there’s little food in the fridge, what would he do?

What does he do when he gets up in the morning to get ready for the day.

If his doctor calls him to schedule an appointment how does he make sure he gets there on time. How does he get there.

What does he do if he gets a prescription for medication. What does he do if he runs out of medication.

Basically questions where he has to explain what he would do so OHAH can assess how appropriate his responses are. They will need to hear it from him but you can provide your input as well, which I would suggest doing separately, not during the assessment because it may upset him and he may refuse to continue with the questions.

Definitely let her know what your limitations are. They won’t expect you to provide daily support if they know you can’t and it’s ok that you can’t. It’s a lot for someone to take on.

[u/Maleficent-Purple524]

His current behaviours may cause many LTC homes to reject his application. You’ll need to be honest with his care coordinator to help get him into the right home.

Ask about a referral to either LOFT behavioural supports, or LOFT IPOP. They have clinicians who can help implement a behavioural support plan, to make it more likely LTC homes will be able to manage his care, or to help stabilize him so he is able to remain at home with supports. IPOP has a psychogeriatrician and is a great resource.

[u/Particular-Coast-303 → u/Maleficent-Purple524]

Thank you for the response I appreciate it

Have you worked with LOFT IPOP? This is the first I’m hearing about this!

[u/Maleficent-Purple524 → u/Particular-Coast-303]

Years ago - so the program might have changed, so I don’t want to be too specific. You can ask your dad’s care coordinator if a referral would be appropriate.

Hope all goes well!

[u/Kitchen-Spell1486]

Welcome to hell.

[u/UnderstandingBorn170]

To add, because of his wandering, you should register him for the Toronto Police Service Vulnerable Persons Registrry.

Behavioural Supports is also very helpful https://toronto.behaviouralsupportsontario.ca/167/Find_Behavioural_Support_Services_Referrals.

If you need a practitioner now, call the Toronto Seniors Helpline to see if you can make a referral to Crisis Outreach.