What to expect from care needs assessment for self funder?

[titum]

I've been getting increasingly worried about DM's situation at home, so have finally persuaded dad to request a care needs assessment from adult social services. For context, mum has moderate and worsening Alzheimers, and dad is beginning to be less cognitively able than he was. It's become apparent that mum's not bathing, she's starting to struggle more with choosing clothes, she's very anxious, agitated and verbally aggressive at times, and she's also very unsteady on her feet, so a definite falls risk.

I filled out the referral request form with dad, so I was able to make sure he was honest about mum's challenges. I'm guessing he'll now hear from them to make an appointment to come round to meet with them both and look around the house - is that right? And then what happens after that? Do they receive a written report of what social services think is needed, or is it just verbal feedback - and does it go to the GP as well as them? They won't qualify for any free care, but will they get an offer to provide care that they have to pay for, or will they be signposted to private care companies they can approach?

It's been such an effort getting to this point, I want to make sure I know what to expect from the outcome. It's Bucks, if that makes a difference. TIA.

Hi OP, I recommend you also attend the assessment appointment (if you can).
All local authorities are absolutely on their knees financially, its highly likely they will send an unqualified social care assessor out to see your DM and DF and not a qualified worker. It doesn't automatically mean the assessment won't be competent but I strongly encourage you to do as much research as you can.

A good resource to learn more about the Care Act and the assessment process is here: https://www.scie.org.uk/assessment-and-eligibility/

The LA should issue a detailed recommendation and yes they should signpost your parents to local agencies BUT they have a specific list and if your parents are going to be self funders I would start contacting agencies now. IMHO, you need highly experienced carers for individuals with dementia, preferably no uniforms/lanyards as that can be frightening for them. There is nothing to stop you arranging care and support now pending any assessment as the social care assessor or worker has to assess the individual as if there is no care/support in place.

Its a horribly stressful time for all, I also recommend you contact https://dementiasupportbucks.org.uk/ for further advice and support.

Also do your parents have Attendance Allowance in place? If not, please consider supporting them to apply. Do you have Lasting Power of Attorney for them? Again if not, I would apply for that as soon as possible providing your DM has capacity to consent to that.

I lost my DF earlier this year, its incredibly challenging trying to navigate our loved family members changing health needs as well as Adult Social Care. Its really important you look after yourself as well, I hope the links above are of help 💐 xx

My DPs receive private care in South Bucks who have been good and reliable, and I would happily recommend Home - Eden Care at Home Ltd Have used for both visits and then live in.

Not for Alzheimers so no idea for that specifically.

Would recommend you use someone who provides updates for each visit via an app as that was v helpful given I am some distance away.

Thank you both so much. To answer questions, I've helped dad apply for Attendance Allowance, but the wait time is apparently three months. LPAs have thankfully been in place for years, so no issues there.

I wish I could be there for the care needs assessment (and for other appointments), but distance plus very inflexible full time work sadly make that impossible. It's so hard with dad, because in theory he's still capable to sort all of this out, but he's starting now to be more unreliable, in that he doesn't always understand things fully, he forgets things more (so can't always give me a proper account of appointments etc), and he's starting to make some slightly odd decisions. He does still do all the day to day stuff for mum like cooking and cleaning, but it's become obvious (for example) that he's not comfortable helping her wash etc (which I understand, and she probably wouldn't let him anyway), but he's got his head in the sand about how much of a problem it is that she can't do it properly herself.

In terms of arranging care straight away, I finally finally managed to persuade them to get a carer (from a very well reviewed local company), and after two visits they decided they both 'didn't take to her', so they cancelled it. I feel like I'm beating my head against a wall, tbh. That's why I'm trying the care needs assessment as a next step, to try to get an outside voice telling them they need help.

Op you don’t need a care needs assessment to get care if you are a self funder, but it can be helpful to persuade elderly relatives that they do indeed need help. Anyone can phone a care company and pay for as many carers as they can afford, or ring a care home and pay to stay there… heck sometimes I fancy it myself ;-)

another idea is that care companies will provide help in the from of people who aren’t called ‘carers’. They can do your shopping, come in and make the dinner, all sorts. If you can get someone coming in for other reasons they may come round to the idea of someone to help her get up, go to bed, or have a shower…

good luck

Definitely be there if you can. My mum always put on a performance for anyone official and presented a a picture that was way off reality. Told them that she managed all her finances on her computer when she'd never done internet banking in her life, her tablet hadn't been charged for months and DB had been looking after her finances for a couple of years. Also she did all her own housework and the SW commented how lovely and clean she was keeping the place. We'd arranged a cleaner because of the dust thick cobwebs, gross toilet and sticky floors! If you can't be there email ahead with the things you are concerned about making it clear how things actually are and what help is already happening e.g. you might organise a Tesco delivery so make it clear that's happening, not your mum going to the supermarket twice a week etc.

@wellbeing24as ‘unqualified social care assessor’ who does the exact same job as the qualified workers for lots less money - I take umbrage at your tone.

OP depending what area you’re in you could be waiting months. My LA has long waiting lists as referrals are higher than ever.

As others do say, try your best to be there - you could always ask to dial in. I’ve completed several assessments with family members on FaceTime. Works almost as well as you being there in person.

Do you have a local Age UK service? They’re often a good source of advice and signposting.

Hopefully you’ll get some useful advice from
Someone with experience (qualified or not) and knowledge of the local care market. The thing is, they might be able to tell you what they’d arrange or consider she needed if she wasn’t self funding, but you/she can arrange whatever care you want. It might be best just to go straight to a recommended agency - who will then do their own visit/assessment and talk about how many visits would be appropriate.

what the visit could do though is sign post you to other non means tested things like occupational therapy for little bits of equipment that might be helpful.

just remember you/she are not restricted to the level of care they suggest.

Sadly it's highly unlikely that I can be there in person (my job means I have no flexibility over when I take leave). It might be possible to dial in remotely if the appointment could be arranged in a lunch break, so that's something I'll talk to dad about.

In terms of just booking care anyway, I guess I'm feeling a bit broken by the experience of spending so long persuading them to get a carer in, only for them to decide they weren't keen and cancel the whole thing. Ultimately, even if I had time to deal with all the admin (which I don't), it's their money and their decision, so I can't just force them to pay for a carer they don't want or like. I'm hoping that a care needs assessment might help persuade them that they do really need some support, but if not then I'll need to just keep trying.

I'm learning very quickly that this whole system is broken. It only seems to 'work' if a person with dementia has an advocate (whether spouse or son/daughter) who is fully compos mentis, lives nearby, and either doesn't work or has enough time and flexibility to make phone calls, attend appointments, chivvy and chase. Without that, it just all seems impossible to navigate.

My experience is that if the people who need the care are self funding you are largely left to your own devices.
People in the care industry will point out what exists and some general pointers/advice but it’s up to the couple/family to organise it all. Unless there is a huge crisis.
If their local GP surgery has a GP Carer Liaison Worker I found this person quite helpful in terms of sign posting and explaining the ins and outs of things.

The care system for self funders is a shit show. My LA said they wouldn't do one as self funding and left me to get on with it. Join the FB groups for family carers and ask for help there. I'm afraid you're going to struggle if you are not able to be present.

If their GP has a social prescriber, that might be worth trying, but hit and miss in my experience. You need to find a home help ideally, someone who can befriend them and then increase the care as their trust is built. It's a slow process.

Also, don't leave it too late to research residential care places. The good ones have waiting lists. Your father will need respite and if your mother is at risk of falling, she may need it sooner than you think. When her illness progresses, she will likely need full time residential care anyway to keep them both safe.

Look after yourself too, it's harrowing caring for elderly parents.

I’m a nurse with the elderly and the experiences I’ve seen have been very similar to above! Not sure if it’s different in the community but in hospital as soon as they find out they’d be self funding they don’t really want to know, as not their problem as they aren’t funding it. The onus is on the family to call around places and arrange assessments 😩 peoples experiences might differ but that’s my experience where I work. I don’t even think it’s common our patients even get a care needs assessment if it’s found they’re self funding, we basically just get told ‘family have been told to look round some care homes since this person will be self funding’. What you then unfortunately find is that since people can have whatever they want if they’re paying for it, if then when funds run low it can be a fight to still keep that but at funded rate with social care wanting to try and strip that back to see if they can manage without certain extras that they’d otherwise have to pay extra for

God, it's so depressing, but that's all very helpful, thank you. It's not surprising that such a high number of women end up giving up work to care for elderly parents.

It's a good point about looking at care homes, and I might need to think about doing that both near them and near me, to cover all bases. Dad's one red line at the moment is that he wouldn't dream of putting mum in a care home, but I don't think he realises how much harder it's going to get once mum loses continence, and once he can no longer leave her alone at all (we're already quite close to both of those things, I think). I'll ask about a social prescriber too.

And yes, it really is harrowing. Some of the time she's confused but pretty cheerful, but at her worst she's either vile or weeping, and both are just heartbreaking.

@titum To give an idea of costs (S.Bucks):

• our live in care is ~£1800 weekly (which doesn't include overnight duties)
• the care home DM ended up in was £2400 but was v fancy and she didn't make use of any fanciness. But it was close by so DF could visit & had a space at short notice (and as it turns out only for 4 weeks).
• otherwise visits were ~£30 and hour with 30min or 45min being proportionately more expensive (due to trave time I guess)

I think care homes want to know you have 2 years worth of funding, otherwise they will want LA involved in funding discussions.

When I worked in this area, in a wealthy part of the county where there were a lot of self funders, that was one the trickiest parts for the job. People that really did need care not thinking they did - especially once they found out the cost of it!! If someone is not self funding you can say ah well let me send someone next week and see how you go, or even just have the funded care in place for someone to visit and set eyes on the person even if they barely get over the threshold! But obviously you can’t do that when it’s their own money.

i found that for some people they had a respect and good relationship with their GP, and if their GP “told” them they should get care, sometimes that helped.

so getting the GP on side might be a good idea.

plus exploring technology to reduce risks - care alarms, etc

Once you have the name of the person coming to do the assessment I recommend you get their email address and email them your concerns/views in advance of the assessment

There may be a long wait for an assessment. Is your mum involved with any dementia services like link worker or day centre?

Totally recommend you either be there, join remotely, or speak to the assessor in advance.
Otherwise you run the risk the report and recommendations are not reflective of their abilities and needs and you’ll be in a worse position now if your DP have it officially in writing that they’re managing better than they are!

If you can't be there try and do a Teams or similar connection with the SW without your parents on it. Then you can comment in the chat when they put a gloss on things/claim they have no problems with something/ tell porkies about what you can or are willing to do. Did this during covid with my parents. Luckily dad was a technophobe and mum had lost the capability which helped (despite mum claiming she did all sorts of stuff on the computer).

No tone intended, @dmboots—my comment was about systemic local authority pressures and the distinction between qualified and unqualified assessor roles, not the dedication or competence of individual staff.

Having worked in adult social care for years, I fully agree that care assessment is complex, high-stress work, and staff across the board deserve fair pay and proper support.

The FaceTime suggestion is great practical advice for the OP.

This is all very true. There have been 2 Attorneys working on my elderly relative’s stuff for over a year (which has involved him going the usual route from hospital to care home to selling his property to fund care). We have sometimes said that we can’t believe sorting out the situation of one elderly man has taken 2 competent people the amount of time it has. I wish I’d kept a log of the number of phone calls/emails/time spent. We did go from an almost standing start though. I don’t think I could have managed it all if I wasn’t retired myself.