Dementia: 99-year-old grandmother being evicted from care home.

[DiamondsAndRust]

Really not sure where else to turn with this - have tried Age Concern etc, but so far they have been unable to provide much in the way of assistance. Any advice from those with legal experience, or knowledge of care homes/geriatric medicine/psychiatry would be hugely appreciated. Not sure if anyone actually can help with this, though, as it's a bit of a minefield, but here goes...

I'm writing this on behalf of my 99-year-old grandmother, who suffers from severe vascular dementia and Alzheimer's. She is currently in a local care home which, care and facilities-wise, we've been very happy with. However, she has recently deteriorated to the point where they now feel unable to cope with her, despite being a designated dementia care centre. In recent weeks they have resorted to medicating her to the extent that she is continually drooling and appears pretty much comatose. Without the medication, she constantly calls out and is abusive towards other residents. Apparently this goes on all day and all night. Unfortunately, her dementia is increasingly manifesting itself though violent outbursts, and while she says she is aware of her behaviour, she is powerless to stop herself.

Things have now come to a head, and this week the care home has given my grandmother 28 days notice to leave. They claim that she is putting herself and other residents at risk, and that she needs a more secure unit, with staff who have more extensive training in mental health issues. However, they are unable to advise us on where such units might be found, which the 'good' ones are, and how exactly their facilities would help matters. Originally they wanted to hospitalise her, 'in order to sort out her drugs' but since we were very resistant to her going into hospital (there is nothing physically wrong with her and we felt that this was a ruse to get rid of her), they have now come straight out and asked her to leave.

My question now is really twofold: 1) Does my grandmother (or, in effect, my mother, who now has power of attorney over her affairs) have any rights at all regarding where she lives? She is self-funding, which means she has been forced to sell her flat and has already paid out over £100,000 to the care home that is now trying to evict her. In having to leave, it seems that her 'choice' is either to languish in a hospital as a 'bed blocker', or to pay for another home not of her (or our) choosing. 2) How would a dedicated severe dementia unit be of benefit to my grandmother at this stage? I'm really struggling to see what such a unit can do differently from where she is at present; the few secure units I've visited have seemed uniformly grim, with she has already been given pretty much every dementia drug going, so there is little scope for improvement there.

Her current care home has stated that they suspect at least some of her traits are 'behavioural' - i.e. due to her character, rather than the result of her dementia. I am inclined to agree with them to some extent; she has always been a 'difficult' character, and very stubborn. If this is the case, though, are they not just trying to pass the buck by evicting her? An alternative care home is not going to be able to alter this, so it seems that she runs the risk of potentially being asked to leave the next one too, if she displays similarly disruptive behaviour. The possibility of another, underlying mental health issue such as schizophrenia has also been mooted, which might be exacerbating her problems. Is there any way that this can be tested for, or does the presence of the dementia make this impossible? Is it worth getting a psychiatrist involved?

Really not sure where to go with this; at 99 she is far too old to be shipped around like a parcel, and there is no way that my parents could care for her themselves, as they're in their '70s and my dad is currently recovering from a triple heart bypass. Any advice on where to turn next?

[smokeandglitter]

Hi diamonds, I don't have any real experience in this area but didn't want to read and run. I do know that dementia can cause psychotic symptoms so unless previously diagnosed with schizophrenia or a psychotic illness, it is most likely to be the dementia causing this.

Really hope someone comes along who can help properly soon. Sending love xxx

[DiamondsAndRust]

Thanks smokeandglitter - had also posted on a couple of other boards and received some helpful responses there.

Re the psychotic symptoms, it's really difficult to tell; there is some family history of schizophrenia, and I suspect that my nan has always had some underlying mental health issues, but she's of a generation for whom this was a huge stigma, and she would never have mentioned it to her GP or anyone else, so no official diagnosis. On the other hand, as you say, dementia itself can cause psychotic episodes, so it's impossible to know for sure.

[twentyten]

Hi diamonds. Going through this too - my dmil is now in a mental hospital after care home cannot cope- dh was very impressed with hospital but we are left with trying to find her somewhere else. It is so hard. For you.

[whataboutbob]

Just some thoughts. My Dad has AD and can be aggressive, failed to settle in a normal NH and had to be brought home, where he is looked after by daytime carers, so I have had to do some thinking ahead for the time this arrangement breaks down. There are units called EMIs (elderly mentally infirm) which specialise in persons with challenging behaviours. The problem is that they are maybe 10% or less of residential homes, and you may not find one in your area.
As for funding, your gran might qualify for CHC (Continuing health care) if you can show that her behaviour is such that it requires specialist skills and medication to manage- and that's what her present home seems to be saying. CHC would mean that she is funded by the local health authority, regardless of her savings.
Maybe a way forward would be to ask the home for a referral to a psychogeriatrician, get their report and then proceed to apply for CHC and GET help from social services to find a local EMI? Alternatively, if she went into hospital they would be responsible for making sure she has a safe discharge to an appropriate home, it may actually be an opportunity in disguise. Good luck.

[mrssmith79]

Do you have an elderly CMHT or crisis team that you can access? They often have a care home liaison nurse you can speak to. Has your mum had a medication review lately? Is she under consultant care? It may be that she requires some inpatient care to stabilise or change meds and rule out any delirium / dehydration.
Dedicated EMI units and inpatient elderly mh wards are much better equipped to deal with challenging behaviour. I know you say you'd prefer not to but sometimes needs must override wants. Hope you get sorted soon

[mamadoc]

It sounds to me as though the current care home is a dementia residential facility and they are suggesting she needs dementia nursing.

The difference is that a dementia nursing place has mental health trained nurses and a higher staffing ratio. They are equipped to deal with problems like aggression or shouting out. It may indeed be in her best interests to go somewhere with more skilled staff rather than to be drugged up all the time.

I'm afraid that the care home do have a right to give notice under the terms of their contract (your mum should check the contract to make sure) if they feel they can't meet her needs. They may have had complaints from other residents about the shouting. It is horrible that they would do this at her age and after taking so much money over the years but it happens a lot. Some places are more flexible than others. The only way they are likely to give a recommendation is if they have a 'sister home' in the same chain.

I would recommend that you ask her GP for an urgent referral to old age psych services. She would then get an assessment from a specialist as to whether anything else can be done about the behaviour (sometimes physical pain or depression can manifest like this in dementia). They would also be able to say if in their opinion she needs DE nursing care. They won't in the end be able to stop the notice process though if the home are determined to go through with it. If she was social services funded they insist on a specialist assessment before paying more for DE nursing care so I feel you should have the same rights. NHS continuing care funding assessment should be also done but it's a very high threshold.

Trying to get her admitted to hospital and then refusing to have her back (whilst still charging for her bed) is also a common ruse which you are right to resist.

I am concerned about suggestions that this is personality or pre-existing mental illness. People with severe dementia do frequently exhibit challenging behaviour due to their illness and it worries me that the staff are seeming to blame her for things she can't help. It isn't the kind of compassionate attitude that reassures you she's getting good care.

Realistically I would accept that she has to move. Once the relationship has broken down and they don't want to care for her I would worry that she won't get good care. I suspect its best to put your energies into finding a good DE nursing place. Visit all the local places with an open mind. Bear in mind that the clients will be more impaired and disturbed by definition but look for kind, caring staff, an activities programme and no smell of urine!

[DiamondsAndRust]

UPDATE: Thanks everyone for your helpful contributions. Latest on this is that my mum thought she had found an alternative residential home that caters for more severe dementia. She visited yesterday and all was looking positive, but today a representative visited her current care home and it's now looking as if they can't take her - they hadn't realised that she is essentially wheelchair-bound, and they said that her needs would be too great given the demands of the residents they have already. So back to square one.

However, they also said that she does not need nursing care. So at what point DOES residential care tip over into full nursing care, if a 99-year-old woman with severe dementia and who is incontinent and immobile without a wheelchair doesn't qualify? We're really at the end of our tether, as it seems at this stage that there is literally nowhere to send her - residential care homes that are being run as commercial businesses are turning her down on the basis that they're overstretched and she's too demanding, but at the same time no one is willing to accept that she needs full-time nursing - possibly because this would mean the council having to contribute financially (she pays for everything at present).

We have requested a Continuing Health Care assessment, and a mental health assessment - her GP is reluctant, though, as she agrees with her current care home that her issues are 'probably behavioural'. We've also contacted her social worker, but they're away on holiday until next week.

My mum is really distraught about all this. When she called earlier today, she told me that she just wished my grandma would die - sounds incredibly harsh, but in her increasingly rare lucid moments my nan just tells everyone she wishes she were dead, and it really seems that the system has washed its hands of her.

[DiamondsAndRust]

Just wanted to say many thanks again for all the wonderful advice - have printed it all off to pass on to DM (who isn't all that internet savvy!) and we will be trying all the different avenues suggested. I think getting her needs comprehensively assessed and then trying to get her into some kind of specialised dementia nursing set-up is probably the way forward. Probably shouldn't be, but am astonished at how complicated this all is, and how disjointed and chaotic the system seems to be. Doesn't bode well for a rapidly ageing population! Determined not to give up on my nan though.

[twentyten]

Sorry it's so tough. Take care of yourself and your dm- these things take such a toll.

[Needmoresleep]

Also let us know what happens. I had hoped that there might be a clear path from sheltered housing to dementia care and that at this point things would become easier for me. Now I suspect i could face the same one day.

This generation had Edwardian childhoods and often quite hard lives. As the dementia takes hold, the social niceties can fall away exposing the rather difficult character underneath. It happens. I am not sure we should be punishing 99 year olds for this.

[DiamondsAndRust]

Thanks Needmoresleep - will definitely feed back once this is sorted, and will pass on anything useful we find out. Agree with you about the backgrounds of many of this generation of older people; my GM was born in 1915, was one of 8 children and grew up on an estate in Hoxton. Must have been an incredibly tough start in life.

The system as it stands definitely lacks clarity - there are so many different types of care and it varies massively from one area of the country to another. Even neighbouring local authorities seem to have completely different systems. One thing we have found (which is corroborated by friends with elderly parents) is that being self-funding seems to complicate things further.

[Branleuse]

id let them send her to hospital

[Branleuse]

things might move quicker then

[DiamondsAndRust]

Yes, Branleuse, agreed, but the tricky thing is that we only want her to be sent to a specialised dementia ward, rather than a general geriatric ward (see mamadoc's post upthread). Otherwise she's likely to be discharged as medically fit without having suitable accommodation to return to. We're currently in the process of trying to access these services via her GP, but it's difficult as specialised mental health resources are so limited and oversubscribed in our area of N. London.

[mamadoc]

I'm sorry it is so difficult.
I am surprised at GP not wanting to refer to old age psych. If she has had notice served and is getting strong medications that make her drool (?antipsychotics) then it seems to me there is a clear need for specialist input. Most GPs would want a specialist involved in a difficult situation like this. I am sure that will be the key to getting it resolved as they will be able to give a specialist assessment of what her needs are.

I personally hate the use of the term 'behavioural'. Of course anything you are doing is technically a behaviour but in my experience it is used in a blaming way to suggest that the behaviour is not due to illness.

In my past experience of these situations they get resolved by either the person being admitted to hospital or to be honest the deadline just passes with nothing being done as in reality they are not going to turf her on the street.
The very worst they could do is dump her in A&E and if she did get admitted then the hospital would be obliged to keep her until an alternative bed is found so please don't worry that she will be homeless. If they see you are trying to look for another place but can't find one I doubt they will do anything.

Self funding is certainly worse in terms of being left to fend for yourself. If she was social services funded the process would be clearer. The placement would be reviewed for suitability every year, if the care home felt unable to continue a mental health assessment would be requested and the recommendation of that would be followed.

On the other hand you have almost no choice as a state funded person. You have to take whatever home you are allotted even if you feel it is awful. Also the best places often won't take social services benchmark funding so a lot of options are closed to you. It's swings and roundabouts.

You need a skilled advocate through the system. Age Concern really should be able to help or maybe the AD society. Ideally your grandma will get a CPN and they are the best people to know what places locally to try.

[mamadoc]

This is my 'acquired on the job' understanding of care homes
NB I am not a social worker and I can't be sure that things aren't different in other places but I think the general categories do hold

Sheltered accommodation/ warden controlled- Basically people who can live independently as can be very minimal support, warden often not on site all the time these days but pops in a few times a week and has an emergency call system (of course you can combine this with a care package).

Extra-sheltered/ part 2 and a half- complex of flats with more support, warden present 24hr, often a restaurant and activities and carers on site that you buy in for eg personal care support.

Ordinary residential care home- you have your own room but eat communally. Carers will support with personal care and give out meds. Supposed to be for people with physical needs not dementia but in practice people with mild dementia and no behaviour problems do fine.

Dementia (DE, formerly EMI) residential- as above but for people with dementia. Some degree of behavioural problems can be managed eg wandering, resistance to care but usually not aggression, sexual disinhibition or persistent shouting

Ordinary nursing- for people with primarily high physical dependence. Usually people who are bed bound eg after a stroke.
I think the key thing is mainly if you can transfer from wheelchair to bed or toilet you are OK for residential but if you need hoisting or support of 2 people probably nursing.
Many of these people will also have dementia but it isn't their main problem and they are not behaviourally disturbed

Dementia nursing- for people with severe dementia with behavioural problems eg aggression, persistent shouting. They may/ will have physical health needs too but additionally have very difficult behaviour

NHS continuing care- can be awarded for the most difficult cases often with high physical needs and very difficult behaviour which is hard to manage even in DE nursing. This means that the NHS rather than social services or the patient pay for the care but it is a high threshold. Often this funding might be used to pay for 1:1 care.

Dementia ward- short term admission for assessment and treatment usually for 2-3 months can be arranged if mental health team agree it will benefit but it's not a permanent solution
Some places have continuing care wards where patients eligible for NHS continuing care can stay long term.

Hope this is helpful and apologies for any inaccuracy

[Corygal]

For a start, your GM is so ill she should be entitled to free care of any kind, including home fees, so I'd look into that. You'll get people from the council saying she isn't, but that's because the council doesn't want to pay for it. Persevere, because full funding makes things a lot easier.

My granny was also threatened with eviction from her care home for calling out in the night, so I sympathise. She also wanted to die - then recovered. What you should be doing now is calling around for a home that will take your DGM, based on what you think her assessment will be.

[Needmoresleep]

Mamadoc, really useful. DM is in extra sheltered but may well need to move on in sometime in the next 2-3 years. I assume our choices will depend on how the dementia progresses. One reason for not pushing for her to move closer to me is that the quality and variety of provision is so much better in God's waiting room where she luves now.

[Needmoresleep]

Lives obviously, not luves.

[Podsypux123]

Hello DiamondsandRust. I know this post is 3yrs old now but can I ask how things were resolved for your Nan? I'm in a near identical situation with my 96yr old Nan being evicted from her current care home because of her difficult behaviour and no other home seems prepared to take her.

[SuzyMargaret]

Hello Podsypux123 and DiamondsandRust. I'd be interested too in the outcome as the above is a carbon copy of our situation. My self-funded mum is being kicked out of the care home we took trouble to find her,(after looking at loads all over the place), just one month after moving her there from hospital.

My mum has dementia and bi-polar,(which she has had since the sixties), and has behavioural problems- shouting and swearing at other residents and staff and also at us when we visit her.

We are waiting for a doctor's assessment and the CPN has advised us not to do anything until this is carried out.
My hubby has a CT scan next week for lung problems and I have a heart condition. We are both in our sixties and finding it very difficult to cope with all this.

[hatgirl]

Corygal

For a start, your GM is so ill she should be entitled to free care of any kind, including home fees, so I'd look into that. You'll get people from the council saying she isn't, but that's because the council doesn't want to pay for it.

Pretty much everything about that is incorrect.

If the OPs GM meets the continuing healthcare criteria then she has needs that are complex and intensive enough for fully funded NHS care. this is provided by the NHS not the local council.

Council funding is determined by how much money you have not how ill you are.

OP once the social worker gets back you should be able to pass most of this over to them to sort out. Self funding or not the Care Act makes it clear that councils have a duty to asses anyone who requests it and offer information and advice to everyone, even self funders.

[chrissie28]

Diamondsandrust I run a group for people with dementia and their families on facebook. We have a couple of people who have had family members in secure units you may want to join us for further advice www.facebook.com/groups/dementiaconnection/

They are within their rights to give notice however they should have triggered a Continuing Healthcare Funding assessment and an assessment by the mental health team. I don't know who prescribed the drugs but if it is the GP it is unacceptable and drooling and being in an unresponsive state is also unacceptable.

[Mumsnut]

I also would love to know the outcome for the OP’s GM. We are in exactly the same situation with an elderly family member at the moment

[Mumsnut]

And although her social worker has said a CHC assessment needs to take place, everyone is denying that it is their responsibility to perform