Dementia - Are they waiting for someone to die/be killed?

[LiteralNightmare]

How do you get help? We've tried GP, A&E and police multiple times. And nothing. I really think they're just waiting for him to hurt someone before helping. There's always another step - if he has this assessment/appointment/meeting/ bah blah blah nothing gets done. Just everyone suffering and dying slowly.

No savings. Here in Ireland my Mum, in same financial position, has just been admitted to a care home. Fantastic care all along. She's nowhere near as ill as my dad.

Start looking at care homes he could move into.
He will need a DOLS assessment
Memory clinic should give diagnosis
Does he have savings or income to pay care home fees

I'm really grateful for all the suggestions. I'm sorry if I sound short, I'm exasperated and knackered and worried. Thank you all so much. Keep any suggestions coming x

I hadn't heard about the DOLS assessment, thank you so much for this, looking in to it now.

I would request and urgent social services assessment, they can provide practice care and respite for your brother. If the risk are very high they and the gp can ask for an assessment from the older adult mental health team, this would bypass the waiting list if the memory service. If you tell them the risks are carer stress, wanders, falls, lack of insight and vulnerability. He would meet
the criteria to be seen. The gp can refer him to older adult cute also. Good luck! It’s a tricky system tk get into though once through the gp madness there is supper available.

This 100%.

He needs a full SS assessment of needs as soon as possible. If it were me I would call SS and also put it in writing to them via email (marked urgent). Notes all the concerns, diagnosis and particularly recent safety risks with wandering, falling and aggression towards your brother who is acting as his carer but struggling to manage and has health difficulties. Let them know the police have had to pick him up and he is wandering off at night. The tracker is failing if the signal is poor/ unreliable.

Thank you so much, will do this now.

You don't need to look into this. It's a legal framework hospitals/ care homes use when someone is in their care and lack the capacity to consent to that care. It's not something families request or apply for.

Would OP be able to trigger a DOLS then? (It doesn’t sound like her dad is currently in hospital or a care home) Could a GP do this?

It really does sound like her dad is at risk 😥

No, DoLS is a legal framework that is applied once someone is already in a care home or a hospital its a check and balance by the state that the person without capacity is being kept there lawfully and not a mechanism to detain them initially.

DoLS is part of the Mental Capacity Act but not the bit that is relevant to the OPs situation currently - she needs Adult Social Care to do a Mental Capacity Assessment and a Best Interests Decison (and possible Court of Protection Application) as well as a Care Act Assessment.

Potentially the Mental Health Act may also apply if OP's father is actively presenting a risk to himself and others as a result of a mental health condition.

GP is key in terms of making sure the right referrals to memory clinic etc have been completed. But systems aren't joined but - OP needs to keep being the squeaky wheel with Adult Social Care. I'd suggest ringing not emailing and requesting a call back from the duty social worker.

Could the gp or social worker apply for a community dols?

Social services can help signpost your family to resources but really it’s your family’s responsibility to source appropriate care, whether that’s visiting carers or a residential setting. You can request a needs assessment from social services if you are unsure what level of care is appropriate. It isn’t the councils responsibility to provide unless there is no other option

Well they could - but it would only be necessary if they were seeking to authorise any existing arrangements for care for the person at home?

Again - DoLS or a Community DoL is about creating a legal paper trail/ check that the state is satisfied that any breach of a persons article 8 human rights is justified and necessary and not in contravention of article 5 of the human rights act.

DoLS or a Community DoL hasn't got anything to do with making the actual decisions about how someone is cared for, its a rubber stamp afterwards that the person has lawfully had some level of restriction or deprivation of their liberty applied to their life, because not doing so would be a breach of their article 2 rights instead (right to life)

You or I would object if someone locked us in a stately home or a hospital ward for the rest of our lives, or sent someone to live in our house 24 hrs a day or put cameras in our house to keep an eye on us. We would consider it a breach of our article 8 human rights.

However, 'We' do those sort of things to elderly people with dementia or people with learning disabilities and the the DoLS/ community DoL processes are there to make sure that if such measures have been taken to remove a person's human rights that it is legally justifiable.

Tbh it sounds like you’ve been helping your mum and your brothers been helping your dad but your brother seems far less capable than you at navigating the system or knowing what needs to be done/ who needs to be contacted.

Could you go over there for a couple of weeks to try and get him assessed and cared for?

When my mum was in the wandering stage, we secured the garden gate with a combination lock. Didn't stop her trying to find a way out but it kept her safe. This fairly quickly progressed to respite care and then a move to care home.

Their social services team actually helped with finding an emergency care home place as things escalated quickly last autumn. It sounds like your dad needs to be in a secure dementia unit for his safety and everyone else.

Actually, I would also suggest calling the Alzheimer's Society helpline, they will help you with all the steps and options.

Thank you, I understand about DOLS now. I'll be the squeaky wheel on Monday. Things always reach crisis point on a Friday, don't they?

My brother does have his own difficulties and is not able to advocate well so I do as much as I can from here.

My dad worked digging the roads of England for the vast majority of his life. He's as entitled to adequate care as anyone else. To the one awful poster who commented.

Adult social care operates 7 days a week in this area, so just check if they are there at the weekend. Make sure they are aware your brother is at the end of his rope with regard to looking after dad "carer unable to continue in caring role and at risk of breaddown". Tell them about your dads lack of insight into risk and vulnerability.

As he is wandering you said, have you heard of the Herbert protocol which is a national scheme registering the wanderer with the police in case he does go missing? Read more here https://www.alzheimers.org.uk/blog/what-to-do-find-someone-with-dementia-lost

Adult social care have a responsibility to safeguard your dad so please do as gloopykoo and bluemoon23 have said, ring them to make them deal with this safeguarding risk urgently.

The system is awful. I truly believe its the next big healthcare (or lack thereof) scandal. It is heavily reliant on the goodwill of exhausted family carers who are given no support or training in how to care for someone with dementia.

I am quite traumatised by my experience and I'm fortunate in that my parent has funds so I can pay for stuff. God only knows how those that lack funds cope.

Hang in there @LiteralNightmare (your username is very apt). It might not be of much comfort, but you are not alone.

Thank you so much. I have sorted the Herbert Protocol and used it twice, it's a brilliant scheme. It is traumatic, for everyone. I hope you recover yourself soon xx

This is all fantastic advice, thanks so much. I'll get on to it first thing. You're a star xx

Safeguarding means something different under the Care Act which is what adult social care are working to. Safeguarding in the Care Act is specific to vulnerable people who are being abused or neglected so ringing to make a 'Safeguarding' referral could actually delay getting help as it goes round the houses to get to the correct team.

Adult social care is hugely underfunded- you have social workers trying to do the jobs 3 or 4 people would have been doing 15 years ago. If the OP rang my team we would try and get back to her within 24 hours and have someone out to do a visit within 3 weeks but it would depend on what else urgent was coming in at the time and how many staff we had available.

We get 4 - 5 similar referrals to what the OP is describing every week as well as another 40+ less urgent referrals. We have 1 full time equivalent duty worker to respond to all of that and currently 4 full time SW equivalents to allocate anything that can't be resolved on duty to. It's un-doable all round for us and the families we are trying to support without the resources to do so.

But be the squeaky wheel