How much do you listen to the views of someone with dementia?

[LaBelleSauvage123]

DF (87) is currently in a nursing home but his medical needs have improved to the point he no longer needs nursing. However he’s been left very confused - he hasn’t been diagnosed with dementia yet but we expect he will be. Some days he’s more lucid and he still knows who we are etc but there’s quite a bit of delusional thinking and some paranoia. He says he’s not happy at the home and doesn’t want to stay there. We also have some concerns ( staff shortages, lots of agency staff, lack of stimulation). We have two other options: a new home ( we’ve visited one we like and they’re coming to assess him shortly), or a return to his own home with live in care. We obviously want to involve him in the decision as much as possible. The problem is that his view changes from day to day with his confusion. Some of his concerns about the current home are valid but others are just wild ( takeovers, coups and corruption figure largely). What do you do about trying to give your parent with dementia some sense of agency? How much do you trust in their own decision making abilities?

I dont think i would move someone out of a residential home back to their own home at this stage. Is the home set up for those with dementia as this can make a difference. As your DF is already showing signs of confusion and delusion i would either leave him where he is if you are happy he can be looked after there or find another home. Bear in mind that moving him may cause more confusion. Best wishes.

The needs of the person needs to come first, however their feelings need be considered as what they say might be jumbled but sometimes their thoughts and feelings are accurate. Speaking from experience, when dementia sets in returning them to their own home isn’t possible with being left alone at night etc and the majority of home care is awful.

I would consider changing the care home, as you say you have your own concerns about the place, so clearly what he is saying isn’t all delusion.

He would have 24 hour live in care if he returned home.

I think that a person with dementia is better in their own, familiar surroundings whenever possible. You say that 24-hour, live-in care will be provided, and that's great. Dementia sufferers need routine. I worked, for 20 years, with people who had dementia.

My cousin (late 60s) has Alzheimer's, and when she is out of her own home (to a cafe, relative's house, etc) she becomes very confused, and often, afraid.

Best of luck with your dad x

Is he consistently mentally able to make a decision about where he lives and paying for his care, has he had a capacity assessment and do you have POA. Maybe a different home would be better but would it be any different, can they guarantee higher staffing levels and activities.

To be honest, it's difficult to give a full answer without knowing what his home is like. Is it all on one level, and will there be room to add in adaptations if his mobility changes?

A familiar environment is positive, but it can also be heartbreaking experience if the person stops recognising their home.

Being in his own home means he has the full attention of the carers, but fewer opportunities to socialise or access enrichment activities that a good home might have.

His mental capacity varies - he’s had various assessments for different decisions. We have POA. His home isn’t particularly suitable - it’s a large, old cottage - but he has a stair lift and friends in the village. The second care home seems to have better staff retention- they never have to use agency staff - and has more of a ‘buzz’ about it.

LaBelleSauvage123 My mum has Alzheimer’s, we currently have a carer once a week as she isn’t yet at the stage of needing full time care as my dad, my sis and I do our fair share.
When the time comes we would prefer that she stayed in her own home environment (and know she would to) so we will probably consider a live in carer, as my parents home has the room to accommodate one. However, we won’t rule out a care home although I am always concerned just how you chose the right one for your lo?
Mums carer previously worked in care homes and said many are poorly run and have a huge turn over of staff which has really put me off as dementia patients need consistency.
We met with a lady from SS last week and she said to always consider the smaller run homes as they tend to be far more professionally run and have a homely feel, she strongly advised us to stay away from the posh looking, all singing all dancing big care homes run by the big organisations.

Justlooking - interesting as DF is in the latter type!

Friend tried live in care middle of the night mum thought carer was a burglar and attacked her.

LaBelleSauvage123 there used to be a care home run locally by a well known nurse in our area, it was small but truly like a family home, it had a long waiting list so must have been popular. The nurse has sadly passed away herself and it’s been taken over but I’d like mum to go into somewhere like that one, when the time comes.

My grandad had a combination of my grandma, daily carers and a sleep in carer and he also got confused and thought nighttime carers were burglars. I would say a care home, where the staff work shifts so have somewhere to go at the end of the day that isn't the home is much more suitable and you won't have to move him again if he gets worse.

At the worst points it took 5 men to stop my grandad hurting himself and others and there was just no way his needs could have been met at home.

Live in care might work if your DF is settled throughout the night, but 1 person looking after someone with increasing needs, confused periods, paranoia etc for 24 hours a day doesn’t sound like a long term solution.

If 24 hour care is needed, I’ve found (personally and professionally) that a well suited care home is the best solution. Fresh staff every few hours, those coming on shift are well rested and ready for the challenge of another shift. Look for ones with high staff to resident ratios, low staff turnover and a good variety of activities on offer (check that they happen, not that they’re just on a pinboard in reception). If you feel that a diagnosis of dementia is likely, then finding somewhere that is dementia care registered would be a good idea to prevent the need for another move.

good luck

Sadly a lot of care homes are poorly run, and I would take seriously that he's unhappy there.

However home care isn't remotely appropriate for someone with dementia, and I'd pin your focus onto finding a more suitable home. I worked in elderly care for many years, both in a nursing home (wonderful place) to home care.

I think the current problem with staff turnover is an issue with carers who come to the patient's own home as well as those working in care homes.

Thank you all for your views. I think at the moment he would be ok with live in care but those of you who’ve warned about him getting worse are right. The home we’re looking at has specialist dementia facilities, is smaller and seems to have a higher staff-resident ratio, but it’s run by the same care company as the home he’s currently in. I asked the staff at the new home why they didn’t have to use agency staff and they said it was because management muck in if needed. That definitely doesn’t happen in the current place.

On a slightly different tack, but linked to comments above, is it common for those with dementia to be more suspicious of night time than day time carers?

I wouldn’t move DF home. He’s getting worse not better so you’ll have to move him into secure accommodation at some point anyway - moves are bad news for PWD.

Home care only works for the early stages of physically fit people with dementia. Unless they’ve got mobility probs, they get too chaotic to be safe even with 24-hr care. Fingers in plugs, eating houseplants, turning all the gas hobs on, bolting out of the front door, etc, take seconds and no single carer can cope.

Two of my relations set fire to their homes.

My best tip for care homes is to find out how long manager has been in post and if there is cohort of well trained staff who have long service. Also it needs to be easily accessible by public transport for staff starting their shifts at 07.00 and 08.00. If it is not handy they will invariably have staff shortages.
You can always try him at home and reassess at Christmas?

I'm not sure if you have been watching the news lately but there is a massive shortage of care assistants in the UK at the moment and more than likely for the foreseeable future.
Home care is even worse than care homes (and I didn't think that was possible) no matter what care home you DF goes to there will be staff shortages and agency usage & if he returns home there will constantly be new staff coming and going.
You may need to lower your expectations

@LaBelleSauvage123 it's a well known fact that patients with dementia get worse overnight, known as 'sun downer syndrome'. I've had a patient today with 24hr carer at home, she had finally got them to sleep at 1.00am, went to sleep herself and found them on the floor in the morning. With 24hr care in a care home there is always someone awake. Someone with dementia often say they want to go home, even when blatantly obvious that they are not safe to do so. Their capacity to fully understand the risks needs to be ascertained especially if their cognition/confusion varies at different times.

Yes, it can be - it's possibly 'sundowning'. It's a period of time where symptoms felt by the person living with dementia, can be felt more strongly. If the home you're looking at has a dedicated /specialist dementia unit, they should know how to help.
It's always such a hard decision for family to know who 's going to give the best care ( and it's all tied up with grief and guilt ) Go with your gut instinct about the Home OP xx

The live in care agency have assured us they have carers on their books and the new home that they never have to use agency staff. I’m well aware of the crisis in social care recruitment ( I have a son with severe learning disabilities) but surely they wouldn’t lie?
The problem with trusting my gut instinct is that it changes every day!

If live-in care at home is available then I'd go for that until a time comes that he needs more.
Was he displaying confusion before the nursing home stay? I've seen peoples cognitive function decline while in similar care and improve when in a better environment.

Don’t do the live in carers! Sorry but I don’t think it would work. My dad had dementia and was in a fantastic home until he died earlier this year. He often needed two people to help him - not just physically (he had Parkinson’s) but to help an agitated and frightened man calm down. The delusions you are describing can be incredibly hard to deal with and when these happened in the care home there were many people trained in dementia care to help. They had management protocols and long experience of it and each other for moral support (try being on you own with someone who thinks you want to kill them…). They really were brilliant people and they did see through to dad’s real personality and were genuinely sad with us when he died. I will never forget his key workers real devotion to him.

they also organised his healthcare and needs - you would be the one doing that if he had home care. It’s hard work!!!

I think you need a dedicated dementia home.