Living at home with dementia - who decides?

[Thighdentitycrisis]

DM. 82 has dementia Following a broken hip she was discharged home to the virtual ward (24 nhs support) with delirium. She is making good progress with mobility and delirium is clearing, but still quite reliant on support. Of course this can’t go on indefinitely and there was a plan to work this week on half nhs and half social care support to phase in agency workers.Last Friday she developed a borderline UTI as a result was kept on full medical team this week. The team then said that if she continued to need the current level of support and reassurance they would be looking at an interim placement at the end of the week. At this point we requested an MDT meeting which will be held tomorrow. We the family feel she will deteriorate rapidly in a home and it is not in her best interests. She wants to stay at home and we feel that she can overcome her anxiety about being alone again after 2 months and still have a good safe quality of life at home for some time yet.

What to expect from the meeting? We are trying to remain objective and advocate for her. Can they force the issue? She has not had s full mental capacity assessment as far as I know.

sorry it’s so long

Does anyone have lasting power of attorney for her for health and welfare decisions?

ultimately it is her decision until she lacks capacity to make that decision.

if it's been decided she lacks capacity then it's whoever has LPOA for health and welfare decisions

if no one has LPOA for health and welfare decisions then a best interests meeting will be held and the local authority (or in some circumstances the NHS) becomes the decision maker.

if there is a dispute within that decision and a consensus cannot be achieved through the best interests MDT process, including involving independent advocates if appropriate, then it will be referred to the the Court Of Protection to decide. It's likely that the status quo will be maintained until that point unless something happens like a hospital admission.

If a care home is the decision without going to the court of protection then there is an additional safeguard built in called the Deprivation of Liberty safeguard (soon to become Liberty Protection Safeguard) where an independent assessor will consult with the person and their family to ensure that the deprivation of that persons Liberty in a care home is necessary and legally justifiable.

The Deprivation of Liberty Safeguards process has an appeals process in it as well which again ultimately ends up back at the Court of Protection to make a decision.

Does she need overnight care OP?
That is just not available in the community except for terminal care so that can be what often forces the issue as person cannot be adequately cared for at home.

Has she been assessed as having capacity to make her own welfare decisions?

Ultimately it's a balance between what the person and their family want and the cost. The standard support package is 4 visits a day, getting more visits than that is rare but not unheard of (I got 8 hours per day for Dgp's) they aren't likely to be willing to pay for 24/7 in home coverage

Thanks@hatgirl
my sis has LPA but not sure if it is just financial or health and welfare. She has access to the medical records

who carries out the mental capacity assessment? So far we have only witnessed her being asked acfew questions about where she is and what day it is and who is the PM,

i spoke to the support team tonight who said their only concern today was that she was shouting at the telly.

@AyBeeCee
she is meant to be coming off overnight care this week but I’m not sure what preparation she has been given for that. The main concern would be can she get to the commode alone.

they reported that she is calling out at night, who’s there but wouldn’t you if you had lived alone for 40 years and then a team of carers were with you day and night? I would also question that she may have been doing that for years. Also she would be calling out at night

we know she can’t have overnight care and she doesn’t want it. We just feel she needs a bit more time to transition to 4 visits.
the duty social worker I spoke with last week said her plan was for full day sits for the first week then to be reassessed.

Capacity assessment usually done by geriatrician or old age psychiatrist.

At the meeting they are likely to discuss the state of her health at the moment and her current care and treatment needs.
They will very much take into account the families and your mother's wishes.

As PP has said a care package in the community is usually up to 4 times daily so just be aware if your mother is assessed as needing more than that you will likely be expected to plug the gaps if you are suggesting she remains at home.

who carries out the mental capacity assessment? So far we have only witnessed her being asked acfew questions about where she is and what day it is and who is the PM

what you will have witnessed is a memory test (often referred to as a mini mental) which gives medical practitioners an idea of what someone's memory is like at a particular point in time. It can be a useful measure if carried out at different intervals (e.g every six months) to measure a memory decline.

mental capacity is a little different and is decision specific, it asks can the person understand the decision that needs to be made, can they retain the information they need to understand about the decision long enough to weigh up their options and make an informed decision.

anyone can carry out a mental capacity assessment, but for decisions about going into a care home it's usually a social worker who does it as part of a best interests assessment, but also sometimes a nurse.

if your mum is able to demonstrate that she can understand the risks she may be at staying at home, and can explain why she would prefer to take this risk rather than be 'safer' in a care home then she would probably be considered to have capacity.

if it's felt that she lacks capacity then the organisation responsible for funding the care can make an offer of what package they feel would meet the assessed needs. If this is 24 hour care then it's likely that the package offered would be residential care rather than live in care at home.

if your mum or anyone else wanted to privately fund the extra amount between a care home and live in care then this would be an option.

again it all comes down to who has what in the way of LPOA though.

Capacity assessment usually done by geriatrician or old age psychiatrist

the vast vast majority of formally documented mental capacity assessments are completed by social workers.

Drs will do them for court of protection paperwork, usually for a fee and usually to (IMO) a much poorer standard than social workers.

hospital drs are also extremely good at stating that older people lack capacity based on a few minutes conversation and providing no evidence/ justification for that decision. Or checking that the person has their hearing aids in before they talk to them.

I'm not an expert in the community side of things, but I am a nurse that participates on complex discharge planning alongside the MDT.

My main concern would be safety - will your mum be safe overnight at home, or between carer visits? If she broke her hip from a fall is she likely to fall again? Does she understand not to try to get up or out of bed alone? Is she undergoing rehab?

If she is more mobile is she likely to do anything potentially dangerous? Eg. Turning on appliances or unlocking the front door/going out.?

What POC is available? Are you as a family able to support her between carer visits - maybe staying overnight, helping her to the commode, reassuring her if she is frightened about being alone?

If she has a UTI is she clinically unwell? Does she need inpatient treatment/monitoring?

The benefit of the MDT is that they will be looking at your mums needs from different perspectives and trying to work out how her needs can be met.

Obviously I don't know your mum, but that's just a few things that jumped to mind when I read your op. It's such a stressful thing to be dealing with. I hope you can find a solution that everyone is happy with 💐

@hatgirl explained the capacity assessment side of things very well.

Thanks for all your replies
We just want her to have the best chance of living at home for as long as possible which is what she wants and is the best thing for her mental health

Fully understand that 24 hour care is not funded and that is not what she wants. My feeling is that she just needs a little more time to adjust to the 4 visits. If she is medically fit will she be discharged to Social Care for the assessment of need and mental capacity?

@hatgirl hospital drs are also extremely good at stating that older people lack capacity based on a few minutes conversation and providing no evidence/ justification for that decision. Or checking that the person has their hearing aids in before they talk to them

This has been my feeling somewhat. Calling out at night =not safe
Might open the door to strangers =hasn’t happened
Might fall over ? Yes might but 1 fall doesn’t equate to prone to falls.

Really trying to remain objective 😁

Reading as we had similar with DM. I am also a Community Physiotherapist.

I'm afraid falls history IS a high predictor of falls risk. Your DM is likely to score highly in a falls risk assessment - my DM was 100%, and she can use the bathroom and dress independently. My DM is in a NH post a fall at home where she fractured her pelvis. She has since fallen in the NH, staff found her on the floor.

With care at home, there can be many hours, where your DM is alone. Were she to fall, could she manage a personal alarm? Her falls risk may be 100%

It's very easy in these situations to believe that everything will be OK with a bit of help at home from daily carers. My experience of this is that it is not and you are in danger of shortening someone's lifespan in relying on this set up. The help is minimal. You already mention UTIs and that is an increasing probability with age and if left untreated causes delirium and even sepsis and death as was the case of someone in our family - too scared to go to bed in case he fell and ended up just sleeping on the sofa and not get up at all. This person also wanted to stay at home but did not have dementia.
Sometimes you have to act for the better good of someone as opposed to what they are saying especially if they have dementia. It's not about you and your emotions and probably the long held feelings about care homes of the person concerned. There is nothing good about living on in a house and being found in such a terrible state that A and E is the end result. You are only delaying the inevitable - in fact hastening it in many cases. Other family members with dementia moved into care homes which they had to pay for and they were safe and looked after. You say she has a duty social worker who has a plan so go with it. There may come a day when they say " she is not safe to live on her own. We can provide a list of care homes which may be suitable". End of. No more social worker. It is a hard road as have been there 3 times.I understand how difficult this is to face but you have to be the advocate for the safest outcome.

Thanks @SaSamhradh for putting me right about the falls risk, it does make sense

Thanks @MrsLeBouef for your input
I’m sorry that your family member was scared to go to bed and ended up with sepsis. That sounds very upsetting for you. Did you believe everything thing would be ok with a few visits a day? it sounds like you regret some of that.

Sadly we lived a great distance from him and another family member was " in charge" as it were although we did on two occasions drive 6 hours when we felt that there was something off. We wanted him to go into a care home and were trying to work on him for that. As I said he didn't have dementia so more difficult to manage and there was another family member with eyes on the house ( whole other story) . My point was that I know the limits of what these visits can do at home - if patient doesn't want to get washed then they don't bother, meals can get delivered but not eaten or thrown in bin. I can give many more examples and of course night times. A dementia patient is often unable to give an accurate account of what has happened.

I don't know if your comment " Did you believe everything thing would be ok with a few visits a day?" was genuine or a sarcastic dig at me ? I knew for a fact that this situation only goes one way. 2 of the 3 I mentioned were not blood family so I had limited input whereas the other 1 was my Mother and I cajoled her to have a try out at a care home. I knew it was for good and it was a heartbreaking day but I knew I had to do it for her - she was walking in front of traffic and walking in the night to my brother's house in her nightdress. She was deemed as "not safe to live at home on her own" and her case was closed. I have no regrets about my Mother but I am able to comment on the other two cases.

It's not a case of carers not bothering, visits at home are time limited ( we frequently go over time) and if a client does not want to do something ie wash, take meds, eat etc we can't force them
Many times we can see what's coming in terms of a fall and ending up in hospital then full time care and wish family would take the decision before it happens

Agree with this. My dad's carers were lovely and did their very best for him when he had dementia but if someone refuses to eat, wash and so on then they are stuck. My dad also wandered and fell when no one was there and even though he'd been given a personal alarm, he didn't use it and just called out to the neighbours. It is really a worry.

@hatgirl I'm sorry you've had that experience, though personally speaking I've had the exact opposite with social workers.
hospital drs are also extremely good at stating that older people lack capacity based on a few minutes conversation and providing no evidence/ justification for that decision. Or checking that the person has their hearing aids in before they talk to them.

In my Dad's case, social workers who didn't know him said based also on a few minutes' conversation that he had capacity - his regular carers thought differently but they were brushed off. They assumed everything he said was accurate even though some easily check able things - like the number of children he had! - that he told them were wrong. As a result he struggled on at home for longer than he should have.