Sister with Downs Syndrome becoming aggressive

Can you help to support your mum in getting additional help for your sister? Is your mum
concerned that your sister will end up somewhere miles away and she wouldn’t be able to visit?

You need to tell your mum what you will help her with, now and in the future. She’s probably worried you’re going to abandon her.

I'd also recommend getting a referral made to the local NHS Community LD team. I work for one and we have psychologists, psychiatrists, OTs, physios, nurses and SLTs.

They should be able to do an holistic assessment so see what professionals can have an impact. Your mum could also do with a carers assessment to see what other support can be put in place. You'd need to contact social services for that.

I know there are horror stories about residential care in the news, but there also many fantastic services out there. I think you probably need to persuade your mum that you need to start "future proofing" now so plans can be made while your mum and sister are able to contribute rather than have an emergency placement forced on them because there's no other choice.

I'm a social worker and a sibling of a person with downs - frankly if my parent's care was as poor as the care you describe, I'd be making a safeguarding referral on the grounds of neglect. Honestly I'd be livid. Don't get me wrong I have enormous sympathy for parent-carers, especially elderly ones, but limiting another human's life chances like this is seriously not okay.

Be gentle with your mum. She is faced with what to her is an impossible, appalling situation - that one of her children will not be independent and will not be properly cared for when she dies. That must weigh heavily when she has done everything for your sister up to now. Remember, in your mum's generation, assisted living for people with Down Syndrome was a very different thing - institutionalising and so on. Is it possible she has fears/hang ups about what that kind of care looks like?

You saying you aren't going to be accommodating your sister probably sounds like a very final no to your mum. What are you willing/able to do? If you're able to oversee her care and visit her regularly in supported living, maybe you can say that to your mum, so she isn't just hearing 'we can't help'. Then the conversation has something positive to move on from.

This is so sad to read. I’m the parent of a child with Down Syndrome and can in some ways understand your mother’s reaction when discussing the future, I can’t stand the thought of my child not being with me as no one understands them like I do etc.
But, your sister really should be having annual health checks including blood tests to check for thyroid issues, coeliac disease, diabetes etc
I think if you’re able to you should try to get her to the doctor and also perhaps try to find out if you have a local Down Syndrome support group/charity who would be able to provide you with support and advice. What a tricky situation for you and your family x

Yes it definitely sounds like you need to have her registered as a vulnerable adult at risk.

It's really worrying that she's not having any check ups, could you maybe make her an appointment with the GP and offer to take her? I know you can't take on full time care but this would at least benefit your sister in the short term in case there is anything medical going on

Well well worth starting to get known by the local LD team. More than anything else it means they have a baseline knowledge of her in terms of if your mother's health becomes at a level she can't cope anymore, so can inform any future planning, plus ruling out things like UTIs or constipation (which can send people's behaviour hugely off baseline) as an initial line of investigation.

It's just worth starting to build that relationship now, rather than having to do it when the shit hits the fan in years to come.

Also checking she's registered on the GP records as having an LD and accessing annual health checks. Plus contacting social services to access anything they're able to offer - something like day service even just a couple of days a week would take some weight off your mum and get your sister out and about to break up her week as well.

Dental check as well if you can access one and if your sister can manage it - or the LD team might have a specialist dentist they can refer on to - but that one's an infuriating postcode lottery (I can refer for half my caseload but the service isn't commissioned in the other area I work in).

Yes, dementia is a consideration with people with Downs Syndrome but it's not the only thing that can lead to behaviour change and it's a case of eliminating the possible causes and working through things.

UTI can cause aggressive behaviour, does she only get help with any washing once a week?

I’m a retired learning disability nurse. I have had many clients who had downs syndrome who developed dementia as they got older leading to personality and behavioural change.
Does your sister have a community nurse from the learning disability team? They will be a great support in helping your sister and your family.

Unfortunately that’s right. Social services won’t step in unless they’re actually asked to.

At the end of the day, it doesn’t matter what your mother wants. Its about what best for your sister and her quality of life, she should not be shut up in the house all day.

I am not blaming your mum, I am assuming she is elderly but you should contact adult social care to ask for an assessment for your sister. Its not fair and change is needed.

Your sister sounds very unhappy and, frankly, unwell. She needs to be assessed. She would be far better going to a centre and mixing with others, doing things together, having a social life, etc. It could make her a new person.

However first you need to contact her GP and maybe a health visitor. Also do a bit of research yourself, there are various organisations and charities which can give much information about what is available. Social services may also be helpful, thee are social workers who specialise in people with learning difficulties and other disabilities.

All is not lost, don't immediately jump to an Alzheimer's diagnosis, she could just be lonely and depressed. Wait and see.

Good luck to you.

I just want to add that I know someone quite well who have a Downs syndrome boy of similar age to your sister. He really thrives at the centre he attends, has blossomed since being there. His parents are very pleased with him.

Sorry if any typos, I'm on the middle of cooking dinner!

Hi OP,

Though people with downs syndrome are more likely to get dementia/Alzheimer's much earlier than the general population, I would be wanting to rule out medical issues first. Something as simple as urine infection or constipation can cause behavioural issues in people with learning disabilities. How's her diet? is it limited? Vitamin deficiencies can cause behaviour changes. Does she have an annual Learning Disability Health check at her GP. Anyone over 14 with a learning disability is entitled to one! Does she have thyroid issues (common in people with downs syndrome), if so does she have regular bloods for this and is so, it managed well. Is she seen regularly by a dentist? Would she have the capacity to recognize she feels ill and have the vocab/communication skills to let anyone know this? I would want to get all this checked out before I started mentioning Alzheimer's to professional's!, is she know to the local learning disability health team? They can support with getting health needs met!

And also, yes, and then as others have mentioned, she may well be extremely bored. However, maybe now is the time to starting broaching with your mum plans for the now and the future.

sharedlivesplus.org.uk/find-your-local-scheme/

Every local authority has a scheme but you will need an assessed need and a referral.

Please look into Shared Lives. You will need a care assessment. It is best to do this prior to your mum becoming unable to look after her so there can be a transition period. Dementia particularly Alzheimer's disease is is very likely diagnosis as the link with downs is high and happens at a much younger age than in those without downs. You will need to push social services to help. There should be funding for various support that she probably is not accessing.

Bless her, she's locked in that house every day, all day? That would affect anyone's mental health.

Definitely right to demand she's assigned a social worker, if she doesn't have one already.

There is funding you can apply for that allows the hiring of a TA so they could take her out once a week or so. They could also advise as to local initiatives for work or training placements and independent accommodation companies in the area.

It really sounds like someone needs to step in and get your sister better care. I'm sure your Mum loves her to absolute bits and obviously worries about her future, but in truth your sister's present isn't OK either.

She needs help. Someone in your family needs to step up and fight for her. Funding doesn't always come easily.

Also, I wouldn't be too much focused on the dementia angle. It sounds, to me, like your sister maybe wants a bit more independence (away from being stuck in front of tv) and is crying out for a different life?

At that age it is possible that dementia is starting so I would focus on getting that medical review. There are a lot of other things it could be too.

The living situation is separate and it might be better to keep it that way. If the issue is dementia it might change what the best place for your sister to live would be anyway.

I really feel for you all. I hope your mum can think a bit differently,especially if she is at risk from your sister

Social services will ask your mother if she wants your sister to continue to live with her. They will ask your sister if she wants to stay living at home. Unless your sister wants to leave home it won’t be pursued by social services. My sibling lived with our mother until death and only then did social services begin to look for somewhere for them to live as the two of them, although unhappy together had become so enmeshed.