Getting parents with dementia into a care home

[LuckyUmberOrca]

Both my parents have been diagnosed with dementia and are deteriorating very quickly. They have carers coming in twice a day but beyond making sure they've eaten & taken their meds they do very little (we have raised this with the care company but nothing changes). My sisters and I live over 5 hours away and we try to visit whenever we can & one of my sisters is doing her best to help them with all their admin, shopping etc remotely but there is only so much we can do without actually living with them.
Dad has had several falls in the last year where he has ended up in hospital for several days and Mum is fit physically however keeps having episodes where she goes into hysterics and keeps calling an ambulance (this is now happening a couple of times a week). She also keeps fighting with my dad, sometimes becoming physically violent towards him, and keeps going round to the neighbour at all times of day and night. They don't attend hospital appointments because they forget, they cannot arrange transport or anything because they are so confusing, they cannot shop online because they can't use a computer any more (they also live in a small village with terrible transport links).
They are clearly not coping at all on their own (there are also hygiene issues) with just the carer 'support' and we want them to move into a care home, but how can we go about this? My sister is constantly in contact with social services but they just tell her we need to get them carers, at what point does social services consider them to be unable to live independently and step in to do something? I can't believe that my mum is calling an ambulance out several times a week for no reason and yet no red flags have been raised about them? Or am I being very naive to expect social services to help us at all with this? If anyone has any advice, tips, similar experiences I would be so grateful to hear it, especially as I know that things are just going to get progressively worse 😭

Doesn’t it all bore down to how much money they have? Are you thinking private care homes or ones paid for by the council? Have you spoken to their GP? Do you have power of attorney?

https://www.nhs.uk/conditions/dementia/care-and-support/care-homes/

It’s a complex process because it involves all sorts of elements including their wishes, mental capacity etc
Asking Social Services for an assessment of need would be an option- but your parents would have to consent to this unless they have been shown to lack capacity …
https://www.dementiauk.org/ has useful information on the legal aspects amongst other things…

Do your parents get NHS continuing care funding? I'm assuming they have a social worker if your sister is in contact with social services, I'd ask them for this assessment (this can help towards finances for the care home if they are eligible). Do you have power of attorney?
Age UK have a good general guide. You'll want to first look at funding options as if the NHS or Local council are going to be contributing then that will narrow down the options of homes you can apply for. Paying for Permanent Residential Care | Paying For a Care Home | Age UK

They are just below the threshold where they have to pay for things. They would require the council to supplement the cost of any home. My sister has POA for both of them.

Thank you!

Do you have power of attorney, either health or finance?

if they have money and you have power of attorney it’s simple, you start looking and find (ideally) one that will take both of them.

if they don’t have any money then you wait u til
social services decide they are bad enough that they will fund a care home. SS usually step up to 4 visits a day first.

if they do have money and you don’t have PoA I dunno. Court of protection maybe?

Thank you!

Social services need to do a reassessment of their needs. It's normally an increase to 4 care visits a day (each) before social services will look at care homes. You also need to raise a 'safeguarding alert' with the social worker every single time either of them do anything which puts either of them at any sort of risk. Do this by email to the social worker and the social workers manager. Keep an accurate log of what is occurring as that's the only way social services will look at it (my mum had nearly 6 months of extremely violent behaviour towards my dad, including police being called by neighbours before they finally stepped in)
You need to cc their gp into each safeguarding alert and any other professionals involved with them.
Have they been assessed as not having capacity? The health and welfare POA cant be used unless they don't have the capacity to 'make decisions about where they should live' etc. It's not a blanket ' don't have capacity' its incident specific.
Most of all, make sure their gp is also in contact with social services and inform them that they are failing in their duty of care to your parents. It's a slow and extremely frustrating process, there is no way of placing your parents in a care home without the new assessment and the capacity assessments being carried out.

On the short term management
One thing your family can do is make sure that the person doing the care visit in is keeping a detailed record of events.

So speak to the care provider about their process. What it the agreed tasks which will/should be done on each visit. Everything is then listed from time of arrival to the leave time. Over staying the alloted time or running out of time and leaving tasks to the next visit all get logged and show additional provision is needed.

Eg today DF has x&Y food and drink took meds washed and dressed .....
DM has A&B food and drink took meds.....
DM is reported to have hit DF or gone round to NDN etc.
If DF has marks or is in fear or distress.
Unable to change/wash soiled bedding/clothes....

Firstly its independent record of issues. Secondly it will show that the care is unsafe as its leaving a mobile adult with memory loss alone in a rural area for hours at a time who is also violent to her husband and at risk of a counterstrike from DF whas memory issues too.
Thirdly it may help understand if DM has a pattern of conduct which could be managed better.

Plus the emergency call out is a drain on the ambulance service. It may have reached a level that results in a referral to the LAs adult team.

It would be helpful if the NDN also made a report to the LAs adult team of DM "wandering" over at various times.

Also loop in the GP for an assessment of capacity and lack of ability to attend hospital appointments. Note the local hospital may be able to arrange transport via volunteers so ask or the carers may have a way to arrange access but is shows they cant provide for medical needs.

Also short term the GP or geriatric (psychological) team in the hospital may be able to adjust DM's meds with "mood stabiliser" drugs. If DM is not on any or is on some already its asking for chemical restraints against DM some docs will reject any suggestion of CR so a careful conversation is needed there.

Based on my experience:

1. social services won't pay for a care home until it's demonstrated that they aren't coping/won't cope with 4 visits a day so that's the first thing you need to push for. Easiest when your dad is in hospital.
2. capacity is everything and the bar for assessing someone doesn't have capacity for a particular decision is so low it's down in a trench. If they are assessed as having capacity you are stuffed unless they agree. I'm at that stage with my mum and tbh I'm pulling my hair out over it.

@countrygirl99 makes a really good point @LuckyUmberOrca - they key to all of this minefield is ‘capacity’. Social services are generally incredibly helpful with ideas etc BUT if the person who is of concern refuses to have a care assessment-as mentioned by @countrygirl99 then they will not/cannot legally force the assessment. I have recently stepped right back from a similar situation and am just now awaiting the ‘crisis’. It is awful but my mother as an example has always been a difficult person. She refuses to attend and appointments to try and assess her - she is and has been making ridiculous choices and statements for almost 3 years now - but she is deemed to have capacity so no one can help us. I have sat patiently with her and explained how a few changes could make her life easier/better….but she knows better. Good luck - it is a tough road to navigate.

The capacity test is explained here https://www.blackcountryhealthcare.nhs.uk/help-advice/patient-information/mental-capacity-act-and-deprivation-liberty-safeguards

Social services are highly resistant to paying care home fees if people can manage with carers visits. Possibly the first step is increase the visits? Also a bit of reality of what can be achieved in the available time. It often takes an age to get people suffering with dementia toileted, clean, dressed and medicated as requires coaxing and persuading.

Whst is it you think the carers should be doing that they are not?

This is very helpful, thank you!!

My DM was increased to the maximum 4 visits per day at first, as a previous poster said we kept a log of anything concerning that happened. The care company did the same and were in touch with social services with their concerns on her safety.

Then we had a social worker come out to do an assessment, my DM agreed to a 2 week trial in a care home. She came home after, both me and the social worker didn't feel it would work out but we let her try one last time. 2 weeks later we all felt sure (including her) that it would be best for her to move in permanently.

I'm not sure how much harder it is if the person themselves doesn't consent though. I do have POA but didn't have to use it.

We then had to sell her house, but the council paid the bill in the meantime - then we paid them back once the funds from the sale were in.

I have read/heard more than once that if a person with dementia wanders off (so in danger of getting lost or v cold if poorly clad) notifying the police (every time) is advised, since I gather that they report to SS. And ask neighbours to do the same if e.g. the person is knocking on their door at 3 am (my GM did this more than once, asking to be driven to Scotland (from Berkshire!)

Otherwise ‘vulnerable’ and ‘at risk’ are apparently the buzzwords to use with SS.
If you don’t already use it, I do 100% recommend the Alzh. Society Talking Point forum - it was a lifeline for me during far too many years of coping with dementia in both DM and FiL.

It is not adult social services being unwilling to provide residential care unless a person’s needs cannot be met even with four visits a day. It is Government policy to keep people in their own home for as long as possible and social services have to abide by this.
People with Dementia also fare better in their known environment, and keeping them at home is better for them as long as they are safe.
GPs can prescribe medication to delay deterioration in cognition so check your parents have been seen by their GP to see if this would be of any value.